Today is another hard day. Tanner & Kylie are in music festival and I would love to go listen to them. March brings in multiple concerts, recitals, musicals, Kylie's birthday, etc. And March isn't looking all that good for me right now.
I thought about a lot of things I have read about and my sister Renae looked up a bunch of things online for me regarding the pseudotumor cerebri (ptc)/chiari. Having both really complicates the treatment of the first. Then I wrote a letter asking about options to my ns. He called me back a little after 5:00 last night. Pretty dedicated. The options that I asked about really don't sound like options except possibly a second shunt. He said that might be a good option, but we run the risk of it becoming blocked just like the one that I have now. My thought is that if I can get two shunts dripping since one won't flow, maybe that will drain enough to take the headache down to tolerable levels.
I need to take the Diamox for a week yet to give it a chance to work. About the only thing that is working is that I am having great difficulty eating so of course I am already dropping a little weight. I've wondered if I just am being mental about it so I looked the drug up online and found that it is a product of a drug that I took many years ago for an infection that landed me up in the er throwing up non-stop. So I guess I am glad I am not throwing up but it makes me think this may not get better. I've not been one to worry about my weight much but I would prefer to not lose more because I would like to gain my strength instead of lose it.
Please pray with us as we determine whether a second shunt is the best option. I am beginning to understand more then I ever have how much the Bible talks about suffering and how the Lord uses that in our lives. He is refining us. But I pray that He will take this away soon. I so long for a life of even limited normalcy.
Saturday, February 28, 2009
Thursday, February 26, 2009
Discouraging news
Here I am, writing a second time in one day.
Dr Heffez called this afternoon after studying my ct scan. The news is sobering to us. My brain ventricles are "tiny" he said. He has decided that with them being so small he doesn't feel that the shunt tubing can be placed in any other position that will be better. His comment was that the ventricle it is currently in is so small that if the tube was taken out it would be impossible to get it back in there and he feels that other positions would result in the same problems. He also decided that it is not worth adjusting the shunt to a more open position since the ventricles are so small and wouldn't drain any more then they are already. That is a problem because my pressure is still too high. So we are back to square one. We know what the problem is but can't seem to find a cure.
At this point the only option that is not "extremely difficult" is to go back on the Diamox that I was on in November and had so many problems with. Unfortunately when I previously took it I was very nauseated and it didn't help the headache at all. There is one other drug he mentioned that I could take--Topamax--that I took previously as well. It made me so disoriented and dizzy that I walked into walls and drove over curbs so at this point it probably isn't an option. I have taken countless meds over the last 2.5 years and there are only 3 that I really struggled with and of course these are two of the three.
Dr Heffez is an extraordinary doctor but specializes in Chiari, which I also have. So I am wondering if there are any doctors out there that specialize in the Pseudotumor Cerebri--which seems to be much more rare--and have additional ideas. I haven't found any yet. As I checked into the doc in Omaha it appears that he specializes in pediatrics and may not be the best choice but I'm not sure yet. I will keep looking.
Dr Heffez called this afternoon after studying my ct scan. The news is sobering to us. My brain ventricles are "tiny" he said. He has decided that with them being so small he doesn't feel that the shunt tubing can be placed in any other position that will be better. His comment was that the ventricle it is currently in is so small that if the tube was taken out it would be impossible to get it back in there and he feels that other positions would result in the same problems. He also decided that it is not worth adjusting the shunt to a more open position since the ventricles are so small and wouldn't drain any more then they are already. That is a problem because my pressure is still too high. So we are back to square one. We know what the problem is but can't seem to find a cure.
At this point the only option that is not "extremely difficult" is to go back on the Diamox that I was on in November and had so many problems with. Unfortunately when I previously took it I was very nauseated and it didn't help the headache at all. There is one other drug he mentioned that I could take--Topamax--that I took previously as well. It made me so disoriented and dizzy that I walked into walls and drove over curbs so at this point it probably isn't an option. I have taken countless meds over the last 2.5 years and there are only 3 that I really struggled with and of course these are two of the three.
Dr Heffez is an extraordinary doctor but specializes in Chiari, which I also have. So I am wondering if there are any doctors out there that specialize in the Pseudotumor Cerebri--which seems to be much more rare--and have additional ideas. I haven't found any yet. As I checked into the doc in Omaha it appears that he specializes in pediatrics and may not be the best choice but I'm not sure yet. I will keep looking.
Riley's birthday
Well, the birthdays have officially begun. Kyle's was Monday and today is Riley's. We get all 6 of our birthdays done between February and July.
I had my ct scan done yesterday afternoon. It went well--that is probably my most preferred test if I have to have one. We overnighted the results to Milwaukee so the doctor will have it today. I know that Monday and Thursdays are his surgery days (scary that I know his schedule every day!) so chances are I won't hear anything today. Omaha said they received the records and maybe I would hear from them Friday afternoon regarding scheduling a visit, otherwise next week. So now we wait and see what direction I end up going. The nurse in Milwaukee said to wait to try to adjust the shunt until he sees the ct results which isn't such a big deal since the only way to adjust it is to drive to Milwaukee at this point.
Is the headache back? Yes, and nearly as strong as it was before the spinal tap. It started strengthening yesterday in the evening. As usual, the hard thing about having a good day is I realize how bad it is when the break is over. But yesterday was very nice.
I had my ct scan done yesterday afternoon. It went well--that is probably my most preferred test if I have to have one. We overnighted the results to Milwaukee so the doctor will have it today. I know that Monday and Thursdays are his surgery days (scary that I know his schedule every day!) so chances are I won't hear anything today. Omaha said they received the records and maybe I would hear from them Friday afternoon regarding scheduling a visit, otherwise next week. So now we wait and see what direction I end up going. The nurse in Milwaukee said to wait to try to adjust the shunt until he sees the ct results which isn't such a big deal since the only way to adjust it is to drive to Milwaukee at this point.
Is the headache back? Yes, and nearly as strong as it was before the spinal tap. It started strengthening yesterday in the evening. As usual, the hard thing about having a good day is I realize how bad it is when the break is over. But yesterday was very nice.
Wednesday, February 25, 2009
Beautiful day!
I am thankful and joyful to say that I am having some relief today! The headache isn't gone but much more tolerable right now. I would love to have this last forever but am hoping that it will go through the rest of the day.
To celebrate, I had Kyle push me around in a wheelchair through Walmart this morning before he went to work. I know--I get pleasure out of small things but it is so good to be out of the house besides hospitals and doctors offices. I hope to go out for lunch today, too.
I am waiting to hear when I will have the ct scan. We were able to get some of my records from Milwaukee faxed yesterday and found that we had all of my records from October and back. They didn't fax all the records from Milwaukee b/c they said there is about 45 pages since October but we are hoping it will be enough for Omaha to make an appointment. We Fed-Ex'ed everything we had yesterday so they will have them today. I hate being a pest but I think I will call again today. If the first step is adjusting the shunt it would be much easier to drive to Omaha for the 30 second procedure then to Milwaukee. If that doesn't work--which I am guessing it won't--I would really like to have surgery within a week. I probably am optimistic in getting things going that fast but it would be nice to just get it done with and hopefully get better this time. And maybe I am being a pessimist by assuming that I will have to have another surgery.
Whatever happens, today will be a good day. I am determined to joyfully embrace the good days. I hope you can, too!
To celebrate, I had Kyle push me around in a wheelchair through Walmart this morning before he went to work. I know--I get pleasure out of small things but it is so good to be out of the house besides hospitals and doctors offices. I hope to go out for lunch today, too.
I am waiting to hear when I will have the ct scan. We were able to get some of my records from Milwaukee faxed yesterday and found that we had all of my records from October and back. They didn't fax all the records from Milwaukee b/c they said there is about 45 pages since October but we are hoping it will be enough for Omaha to make an appointment. We Fed-Ex'ed everything we had yesterday so they will have them today. I hate being a pest but I think I will call again today. If the first step is adjusting the shunt it would be much easier to drive to Omaha for the 30 second procedure then to Milwaukee. If that doesn't work--which I am guessing it won't--I would really like to have surgery within a week. I probably am optimistic in getting things going that fast but it would be nice to just get it done with and hopefully get better this time. And maybe I am being a pessimist by assuming that I will have to have another surgery.
Whatever happens, today will be a good day. I am determined to joyfully embrace the good days. I hope you can, too!
Tuesday, February 24, 2009
spinal tap done
The spinal tap went very well, but the pressure was a few points higher then last time--not a good sign! The dr wants me to have a ct scan and try a shunt adjustment first. Ct scan--easy. Shunt adjustment--more difficult b/c it can't be done locally. I still suspect a revision surgery but these are the steps to follow and maybe it will work.
Last night my mom had a neurosurgeon call her that is a distant relative! Wow! He works with these shunts a lot as well but lives in Missouri. Good news--this is normal. Bad news--this is normal and some people with shunts that have pseudotumor cerebri--which I have--have many surgeries. He said it is very difficult to place the shunt tubing because the ventricles are very small and tend to collapse.
I will write more later--I am flat in bed the rest of the day. This time I am obeying the doctor fully in hopes of not having spinal fluid leak from puncture. The person doing the spinal tap was reluctant to do it because the risks go up quite a bit from repeated punctures.
Last night my mom had a neurosurgeon call her that is a distant relative! Wow! He works with these shunts a lot as well but lives in Missouri. Good news--this is normal. Bad news--this is normal and some people with shunts that have pseudotumor cerebri--which I have--have many surgeries. He said it is very difficult to place the shunt tubing because the ventricles are very small and tend to collapse.
I will write more later--I am flat in bed the rest of the day. This time I am obeying the doctor fully in hopes of not having spinal fluid leak from puncture. The person doing the spinal tap was reluctant to do it because the risks go up quite a bit from repeated punctures.
spinal tap
I have my spinal tap, otherwise known as a lumbar puncture in the medical community, today at 2:30. Thank you for your prayers!
Monday, February 23, 2009
Thank you so much!
Thank you so much! We have Riley and Tara taken care of Friday and two other people to take care of Tara Wednesday and Thursday afternoon. I really appreciated volunteers to help!
My ns (Milwaukee) called this afternoon and I need to have another spinal tap done. I am going to call in the morning to schedule it. The last one went pretty well (painwise) but I have had them go pretty poorly, too. The bad thing about the last one is they suspect that I leaked spinal fluid from the puncture until a couple days after my surgery--not a good thing--so we hope and pray that that won't happen this time. We will see how the pressure is. If it is high, he thought he would adjust the shunt again which didn't work last time. If that doesn't work, surgery. I am prepared this time for the spinal tap--if the pressure is higher they will drain fluid so I will have relief for a day or so.
My ns (Milwaukee) called this afternoon and I need to have another spinal tap done. I am going to call in the morning to schedule it. The last one went pretty well (painwise) but I have had them go pretty poorly, too. The bad thing about the last one is they suspect that I leaked spinal fluid from the puncture until a couple days after my surgery--not a good thing--so we hope and pray that that won't happen this time. We will see how the pressure is. If it is high, he thought he would adjust the shunt again which didn't work last time. If that doesn't work, surgery. I am prepared this time for the spinal tap--if the pressure is higher they will drain fluid so I will have relief for a day or so.
request for help
I really don't like asking for help. Many of you have offered, though, and we are in need of a little right now. Our babysitter is taking of Wednesday, Thursday and Friday. At this point I am not able to take care of Tara very well, so we are wondering if anyone would like to volunteer to take care of her. She is in school until about 11:10 Wednesday and Thursday and doesn't have school on Friday. Of much less importance, Riley will be home all day Friday as well. Tanner & Kylie can take care of him here but if someone would like to have him visit that would be a great day to do it. :) If you are interested, please email me at kvanwyhe@mtcnet.net or call me (4499). Thank you so much!
As I have said before, I am not a neurosurgeon but my guess is that I need another surgical revision. The headaches continue to intensify. A prayer request at this point is direction in what to do next. We requested a copy of my medical records to be sent to Omaha 1 1/2 weeks ago. Today the company that is supposed to be copying and mailing them said they don't have the request. They need to be copied, mailed and then reviewed by the neurosurgeon in Omaha before they will even schedule an appointment. So do we drive back to Milwaukee again (8-9 hours) or try to wait it out? I am fearful of waiting too long because typically the headaches progressively get so bad that I can hardly stand it. I am trying very hard to do nothing that will aggravate my head but I have been down this road before. . .
As I have said before, I am not a neurosurgeon but my guess is that I need another surgical revision. The headaches continue to intensify. A prayer request at this point is direction in what to do next. We requested a copy of my medical records to be sent to Omaha 1 1/2 weeks ago. Today the company that is supposed to be copying and mailing them said they don't have the request. They need to be copied, mailed and then reviewed by the neurosurgeon in Omaha before they will even schedule an appointment. So do we drive back to Milwaukee again (8-9 hours) or try to wait it out? I am fearful of waiting too long because typically the headaches progressively get so bad that I can hardly stand it. I am trying very hard to do nothing that will aggravate my head but I have been down this road before. . .
Sunday, February 22, 2009
Sabbath
Today has been a good day. I don't feel any better--in fact tonight my head is hurting a lot and looking at the screen of the computer is starting to bother me more and more. But I am more encouraged. Thank you to a couple friends--you know who you are--that have emailed me the last couple days. I am encouraged and I think the Lord is using you to lift me up. One of you also lent me a couple books that I haven't started yet but looked through today and they have already encouraged me even though I only read a few things here and there. As I looked at one I found a poem that I had read years ago and loved but hadn't seen again. It is:
The Weaver
by Grant Colfax Tullar
My life is but a weaving betwixt the Lord and me,
I do not choose the color--He worketh steadily.
Ofttimes He weaveth sorrow and I in foolish pride,
Forget He sees the upper, and I the underside.
Not till the loom is silent, and the shuttle cease to fly
Shall God unroll the canvas and explain the reason why.
The dark threads are as needful in the Weaver's skillful hand
As the threads of gold and silver in the pattern He has planned.
I have been reading through the Psalms (and Mark) for a while now and am nearly done and I am either going to study Job or Lamentations after that. Again I skipped forward a little bit because I saw a website by a fellow chiarian that had some quotes from Lamentations so I looked those up last night. Lamentations 3 was a good reminder. I would like share parts of it (but I am skipping some of the verses b/c of the length).
I am the man who has seen affliction under the rod of his wrath; he has driven and brought me into darkness without any light; surely against me he turns his hand again and again the whole day long. He has made my flesh and my skin waste away; he has broken my bones; he has besieged and enveloped me with bitterness and tribulation; he has made me dwell in darkness like the dead of long ago. He has walled me about so that I cannot escape; he has made my chains heavy; though I call and cry for help, he shuts out my prayer; he has blocked my ways with blocks of stones; he has made my paths crooked. He has made my teeth grind on gravel, and made me cower in ashes; my soul is bereft of peace; I have forgotten what happiness is; so I say, "My endurance has perished; so has my hope from the Lord." Remember my affliction and my wonderings. . . But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is your faithfulness. The Lord is my portion, says my soul, therefore I will hope in Him. For the Lord will not cast off forever, but, though he cause grief, he will have compassion according to the abundance of his steadfast love; for he does not willingly afflict or grieve the children of men.
One of the friends emailing me told me of some people that are reading the blog and praying for me that she talks to. Sometimes I feel so alone so it was a comforting reminder that there are readers out there that I don't hear from or know that are reading this that are praying for me. It is humbling and encouraging to know that others care. Thank you!
The Weaver
by Grant Colfax Tullar
My life is but a weaving betwixt the Lord and me,
I do not choose the color--He worketh steadily.
Ofttimes He weaveth sorrow and I in foolish pride,
Forget He sees the upper, and I the underside.
Not till the loom is silent, and the shuttle cease to fly
Shall God unroll the canvas and explain the reason why.
The dark threads are as needful in the Weaver's skillful hand
As the threads of gold and silver in the pattern He has planned.
I have been reading through the Psalms (and Mark) for a while now and am nearly done and I am either going to study Job or Lamentations after that. Again I skipped forward a little bit because I saw a website by a fellow chiarian that had some quotes from Lamentations so I looked those up last night. Lamentations 3 was a good reminder. I would like share parts of it (but I am skipping some of the verses b/c of the length).
I am the man who has seen affliction under the rod of his wrath; he has driven and brought me into darkness without any light; surely against me he turns his hand again and again the whole day long. He has made my flesh and my skin waste away; he has broken my bones; he has besieged and enveloped me with bitterness and tribulation; he has made me dwell in darkness like the dead of long ago. He has walled me about so that I cannot escape; he has made my chains heavy; though I call and cry for help, he shuts out my prayer; he has blocked my ways with blocks of stones; he has made my paths crooked. He has made my teeth grind on gravel, and made me cower in ashes; my soul is bereft of peace; I have forgotten what happiness is; so I say, "My endurance has perished; so has my hope from the Lord." Remember my affliction and my wonderings. . . But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is your faithfulness. The Lord is my portion, says my soul, therefore I will hope in Him. For the Lord will not cast off forever, but, though he cause grief, he will have compassion according to the abundance of his steadfast love; for he does not willingly afflict or grieve the children of men.
One of the friends emailing me told me of some people that are reading the blog and praying for me that she talks to. Sometimes I feel so alone so it was a comforting reminder that there are readers out there that I don't hear from or know that are reading this that are praying for me. It is humbling and encouraging to know that others care. Thank you!
Saturday, February 21, 2009
Quiet afternoon
Our kids except Tanner are at my sisters house this weekend again. Tanner and my husband Kyle are gone to a basketball game in Sioux Falls tonight with Tanner's boys club group at church. My headaches are more tolerable with the kids gone but it is very lonely and heartbreaking to have them gone so much, too. I can't help but shed a few tears when everyone walks out of the house, just longing for normalcy. I am a social person and this forced isolation is so hard.
Friday, February 20, 2009
Omaha
Kyle did a little followup yesterday and it sounds like the Omaha doctor will see me--which is an answer to prayer. That being said, I am terrified of seeing a new doctor and thinking about someone else poking around in my brain. I guess we will see how it goes. One reassurance is that there is a local person that sees this doctor (and has the same shunt that I have) and the family is happy with him.
The next issue is that my medical records request wasn't received in time for the last processing so they weren't mailed until yesterday. So. . . will the headache progress in intensity slowly enough that I can wait until they are received in Omaha, reviewed and then an appointment set--which is the order of events they request? The intensity at this point is tolerable to me as long as it is quiet--which it isn't when all the kids are home. I can last a little while and take long breaks in my room between. As I said last time, I am praying that the Lord takes this all away!
The next issue is that my medical records request wasn't received in time for the last processing so they weren't mailed until yesterday. So. . . will the headache progress in intensity slowly enough that I can wait until they are received in Omaha, reviewed and then an appointment set--which is the order of events they request? The intensity at this point is tolerable to me as long as it is quiet--which it isn't when all the kids are home. I can last a little while and take long breaks in my room between. As I said last time, I am praying that the Lord takes this all away!
Wednesday, February 18, 2009
Things are just not going very well. I felt so good despite the surgical pain after the shunt was put in December 15 and just have not had that relief this time after the surgery 2 weeks ago. What does this mean? I don't know and try not to speculate. I talked to the nurse of the ns today so we will see what he has to say. The headaches are not nearly as strong. I've tried to dismiss it as surgical pain but I guess I know it really probably isn't. It doesn't seem that there will be a good answer to this question. I just don't know if I could do another surgery although it may get to the point of desperation again that it just doesn't matter. I am begging the Lord to miraculously just take this away.
Tuesday, February 17, 2009
Monday, February 16, 2009
Time passing
Well, I haven't written much because not much has changed. I sometimes feel like I just complain over and over about the same things--I am sorry! The percocet is still helping, so I am hopeful that much of the pain is still temporary since oral pain meds don't touch the headaches. I have gotten out a few times now. I stopped at the office for cake for a birthday today and drove for the first time--just there and back. For Valentines we went out Thursday evening for ice cream and of course I have been to the doctors office for staple removal. Getting out is very enjoyable but very exhausting yet. I have learned that taking a walk is probably best limited to walking 1-2 houses down the street instead of half a block but hopefully that will gradually increase. I have resumed taking Reliv--a food supplement--in hopes that it will help me gain strength (and I still had some in a box in the basement). I still don't have an appetite but am working on eating regularly and have been maintaining my weight instead of losing--which is probably a good thing right now.
Overall I have to admit that my attitude has slipped. Life with no pain--or even small amounts of pain--sounds so good and so out of reach right now. Our kids spent Saturday and Sunday at my sister's again, which is a good thing for me because I have a difficult time having them all home for period of time yet, but depressing because I wish I could enjoy my time with them. Kyle took the older three skiing today at Great Bear and they had a great time which was wonderful but it is difficult missing all their activities and fun times. Kylie had a drill team event at the high school Friday night which I missed. It is her last one because it only goes through 6th grade, and I realized that night that I have missed that event the last three years (and three times) that she has done it because of my health. Am I going to miss the kids' events and activities forever? I always enjoyed going to them but I wish that I would have treasured these times more when I was able to go.
Overall I have to admit that my attitude has slipped. Life with no pain--or even small amounts of pain--sounds so good and so out of reach right now. Our kids spent Saturday and Sunday at my sister's again, which is a good thing for me because I have a difficult time having them all home for period of time yet, but depressing because I wish I could enjoy my time with them. Kyle took the older three skiing today at Great Bear and they had a great time which was wonderful but it is difficult missing all their activities and fun times. Kylie had a drill team event at the high school Friday night which I missed. It is her last one because it only goes through 6th grade, and I realized that night that I have missed that event the last three years (and three times) that she has done it because of my health. Am I going to miss the kids' events and activities forever? I always enjoyed going to them but I wish that I would have treasured these times more when I was able to go.
Friday, February 13, 2009
Friday
I have a little less metal in my body now--the staples were taken out this morning. The incision seems to be healing up pretty well.
It seems that yesterday and today have been a little better then the days before. I did take a walk the other day but evidently overdid it because I was miserable the rest of the day. I don't feel as well as I did after the last surgery--or maybe I should say surgeries. My head hurts more and I am just not feeling as well. But it was only a week ago yesterday that I had the surgery so maybe I need to exercise more of the patience I know I am not learning well. I suppose being under anesthesia three times in 6 weeks & having them fool with my brain each time probably isn't helping.
It seems that yesterday and today have been a little better then the days before. I did take a walk the other day but evidently overdid it because I was miserable the rest of the day. I don't feel as well as I did after the last surgery--or maybe I should say surgeries. My head hurts more and I am just not feeling as well. But it was only a week ago yesterday that I had the surgery so maybe I need to exercise more of the patience I know I am not learning well. I suppose being under anesthesia three times in 6 weeks & having them fool with my brain each time probably isn't helping.
Wednesday, February 11, 2009
Medical updates before blog--very long!
I have tried to figure out a different way to put this on the blog in a place in the profile or something so it wasn't part of the updates but haven't figured that out. These are the email medical updates sent to some friends and relatives prior to starting the blog. I put this here more for my kids someday--if something should ever happen to me it gives them information about what has happened to me during their young lives. So you can skip this because it is very lengthy but feel free to read it if you like.
1-23-07
Hi!
I wrote an email last week (attached below if I forgot to send it to you) letting a few people know what was going on with me since I feel like I have dropped out of sight for so long. I was in quite a fog when writing that email and had my eyes closed while writing because the computer screen is bright and hurt my eyes. I don't remember who I sent the email to but I had a strong desire to ask people to pray. Now I have to thank you for your prayers!
The iv drugs that I mentioned in my first email didn't work. We actually did four of them although normally they stop at three in an attempt to stop the migraine but the headache flared up just as strongly right after they were done. This weekend was pretty rough so I was looking forward to the appointment today.
The appointment in Omaha went well today. I woke up thankful because my head hurt much less then it has for a couple weeks. I had dreaded driving that far with bumpy roads and bright snow to deal with. The doctor was thorough and definitely is experienced with migraine headaches. He defined my headache as a transformed migraine. The headaches started in July and increased in frequency until October. Since mid October I have had a headache with varying severity everyday.
The doctor started me on a medicine which I will get by shot three times a day (thanks to Kyle) for five days. We are praying that this medication will stop the migraines, which is our first goal. If this medicine doesn't do it, I will need to go back to Omaha and will be hospitalized for 4-5 days and will be given intervenous drugs 24 hours a day to stop the migraine. Needless to say, I am really hoping that the first meds will take care of it but at this point I am more than willing to go back to Omaha to become headache free. I hardly remember what that feels like! :)
I am scheduled to go back in a month because we are also starting a few new drugs now that are supposed to prevent new migraines from ocurring. This takes trial and error because everyone responds differently to drugs. I tend to not tolerate drugs very well so some of the drugs have been ruled out but he has some new drugs to try. Also the typical migraine stoppers like Imatrex aren't working for me so I may need to keep a supply of these shots for new migraines that pop up in the future. We'll see.
This will be a process and most likely I will be dealing with this long term, but the good news is that I will have more tools to manage it instead of dealing with headaches everyday.
Thank you so much for your prayers and expressions of concern. So many have been so kind to us during a rather difficult time for our family. I am so thankful for each one of you! Your prayers have truly been felt and I am reminded that sometimes we need to go through some difficult times to remember that God is always in control and He has so many that he uses to minister to others. What a blessing! God is so good!
Cindy
January 17, 2007
Hi everyone,
I have decided to write to you all tonight even though I haven't talked to some of you for a while. The reason I am writing you is to ask you to pray for me.
Beginning in July with an increase in frequency and severity I have been dealing with migraine headaches. Since mid October I have had them nearly every day, varying in severity, with a few days break here and there. I have tried all the drugs the local doctors and neurologists have prescribed, acupuncture, physical therapy, chiropractic and massage therapy and have seen an alergist. I have cut many food from my diet as well, but so far nothing has helped.
Today I went in to the hospital as an outpatient after a bad string of days and they gave me a "cocktail" of drugs by iv. I have done that twice before, once with an overnight stay in the hosptital and once as an outpatient. The first time gave me a week break and the second time a day. I am going to repeat the "cocktail" tomorrow and am praying for a week of relief.
Today the neurologist referred me to a specialist in Omaha and I miraculously have an appointment next Tuesday. Normally it takes about 6 weeks to get in but they had a cancellation.
I believe that prayer is very powerful and and am hoping that by telling you a bit about what is happening that you will pray for me and the doctors to find a way to treat me. Please pray for my family as well because it has been tough on them, too. It is difficult for me to write to ask for this help, but I know that the Lord is faithful and I need to be humble and ask for your prayers.
Thanks!
Cindy
1-27-07
Hi!
I thought I would give one more update and hopefully after this it won't be necessary.
The injectable drug that Kyle was giving me was discontinued Friday afternoon. We started them on Tuesday and I still had a mild headache on Friday. Unfortunately I was having a reaction to the drug as well that required that I no longer take the drug. My legs ached, sometimes mildly and sometimes badly enough that it was difficult to walk.
Today the headache is back in full force.
The doctor's office in Omaha gave us two options. First, I can take an additional, stronger steroid pack and wait for six to eight weeks for the other drug that I am taking to kick in with hopes that the headache will resolve after that period of time. The second option, which I believe we will choose, is that I will be hospitalized in Omaha for four to five days. I know little about it so far except that we have to call Monday with our decision. It sounds like I may be sedated at least part of the time and I will be on iv's 24 hours a day to break the headache. If all goes as we plan, we will drive down Tuesday.
I was discouraged yesterday that the shots didn't work. Today, after having a fairly strong headache, I am ready. Please pray that it will work!
Cindy
1-29-07
Hi!
I just thought I would let you know that I am going down to Omaha tomorrow morning. The doctor indicated that I should expect the hospital stay to be 4-5 days. They intend to use stronger doses of drugs by iv but I don't know yet if they are the same drugs I have had or others. I am really praying that this works and that I am able to tolerate the drugs. I know many of you are praying for me and our family as well. Thank you so much! God is so good. I know that he has a plan in all of this that we aren't seeing right now. I do have to say that it is humbling to know that so many care and are willing to help us and pray for us. The Lord has placed many special people in our lives!
Someone told me that this time away sounds like a vacation--sleeping and reading books for four or five days. I can think of many places I would much rather be for a vacation and it would probably cost much less, but I guess I will take this option for now.
Hopefully I will be seeing many of you soon and will feel like a new woman! :)
Cindy
2-1-07
Hi!
Surprise--I am home! I am a little discouraged about it, though. The headache is not gone.
There seems to have been a disconnect between us and the doctor. On Monday I told their office that I had a bad weekend but it was mild on Monday. They said that since it was still there it should be treated. For some reason he had a change of heart after I was there the second evening and said that unless I had a severe headache he wouldn't treat me through the hospital. Unfortunately when I have a severe headache, I would not be able to travel that far because of the bright sun and bumpy roads.
We are disappointed in the doctor and his attitude toward us. I suspect he must have had a very bad day at work because he came to my room with a chip on his shoulder.
We aren't sure at this point what to do next. We stopped at a restaurant on our way back today that was a little noisy and the headache immediately started getting stronger. I am on several medications at this point and I feel like I am trembling all the time.
Please pray that the Lord will give us direction.
Cindy
2-5-07
Hi!
I thought I would let you know that I visited my local doctor last Friday. We narrowed down the 12 prescriptions that I had from the Omaha doctor to two that I am comfortable with. We also discussed the treatment that I received from the specialist in Omaha. He was shocked. He felt that I really need to pursue going to the Diamond Clinic in Chicago which is one of the best headache clinics in the U.S.
We agreed to his recommendation so he had our records faxed to Chicago and had them review my records and then they contacted us this morning. We are amazed that we have an appointment time for a week from today which is February 12. We are anticipating that we will be there anywhere from three to seven days.
We are really praying for answers and relief. I am also praying for a "good" day when we travel because riding in a car on a "bad" day is difficult. I don't think that I am tolerating the headaches as well as I had and am so anxious for some headache free days. I know there probably won't be a "magic wand" but I am really hoping that we find a reason for the headaches or even a way to decrease the frequency to a few a month.
I appreciate all of your emails of support as well as the kindness that has been shown to our family during this time. Thank you so much!
Cindy
2-12-07
To All;It is Monday night and we have Cindy checked into the St. Joseph'shospital. The trip over to Chicago went alright. The roads were good andnot to rough for Cindy. We had the Dr's appt. at 1:30pm today and it wentwell. Since Cindy has no family history w/ migraines and she didn't haveany life changing incident/accident last summer, the doctor thinks it'sstress and hormones. They are going to do another MRI and check her heartand do a few other tests. The doctor thinks that is might take 4 to 6 daysto break this migraine cycle and then come back in 4 to 6 weeks. Thehospital has daily classes for Cindy to go to which includes: food diet,pain management, stress relief, living w/ migraines, etc. The doctorthinks that the migraine will probably not disappear forever (which weboth wished for) but that we can get the migraines down to 2 to 3 a month. We are starting to get to know our way around Chicago pretty well.Everything is within walking distance for me. They are talking 6 inchesof snow for tomorrow. Will keep you informed again if anything majorcomes up. Thanks for everything!!!Kyle.
2-13-07
Hello All;Tuesday update for Cindy. They are pushing pain drugs every 6 hours thruthe iv to try to break the migraine cycle. They are thinking it mighttake a couple of days yet since she has had the migraine for so long.Today was a pretty good day. We went to some classes that talked aboutexercise and how to handle nerve endings and blood flow to the brain andyour muscles. It was called Biofeedback - very interesting on how you cancontrol different things about your body without drugs. The doctor wantedanother MRI done to make sure that nothing has come up in the brain overthe last 2 months since the first MRI she had in Sioux Falls. She had theMRI done late this afternoon around 5pm. That was not good for themigraine. She came back pretty much wiped out. Probably better to have itdone at the end of the day then at the beginning of the day. Glad that weare not traveling today - alot of snow and wind over here. Thank-you forall your prayers and thoughts and e-mails.Kyle.
2-14-07
To All;Wednesday update in Chicago. Cindy had a good day today. The migrainewas not very strong today but still there. The doctor advised her torelax and have patience - she has only been here since Monday. That meansto me - it might be a few days yet. We read some info. from the clinicthat stated 7 to 10 days. All of Cindy's tests and MRI came back fine -she is a healthy 30 something female w/ migraines. The doctor did statethat another posibility how she got the migraine might have come from somevirus or bug over the past summer that she didn't even know about that shemight have caught. Probably never find out for sure what caused themigraine to come. She took another class today on Biofeedback (paincontrol w/out medication). Thats about all for the day. If interested -her phone number to her room is # 773-665-3940 she doesn't mind phonecalls when it is a mild migraine day. Until tomorrow.Kyle.
2-15-07
Just sending this e-mail to family.Cindy not having a good day today. The drugs are still set up every 6hrs. They get switched between DHE and Depacon/Decatron?? (I think).Those are the main 2 that get used and w/ the best success rate inbreaking migraine cycles. The DHE was the same that I was using to giveher shots in the leg. They can give her 9 doses of the DHE. They gaveher #7 tonight. The migraine is still there and not broke yet. The DHEdoes not settle real good w/ her. She was feeling a little sick (upsetstomach) yesterday. Today it got worse. They are giving her anti-nausashots but late this afternoon she was pretty miserable/sick. Sounds likethey will try a different set of drugs if she still has the migraine inthe next day or two. Hopefully tomorrow will be a better day or betteryet the migraine cycle will get broken.Kyle.
2-16-07
To All;It is Friday night. Cindy had a rough day yesterday and today. The drugskinda got her sick. The migraine has not broke yet. They changed thedrugs today and she still gets them every 6 hrs. The doctor said thatthey will evaluate the situation on Monday. He is kinda thinking ofreleasing her on Wednesday, which will be the 10 days. He is prettyconfident that they will have the migraine broke at that time. Have agreat weekend.Kyle.
2-19-07
To All;It is Monday afternoon. After Cindy talked with her doctor this morningit sounds like tomorrow (Tues.) she will get released and hopefully Tues.night we will be home if all goes as planned. The official diagnosis theygive Cindy is a statis migraine with daily chronic headaches. Is thesevere migraine gone - yes. Does she still have a headache on the rightside of her head - yes. Is there a possiblity that the severe migrainewill come back - yes. We talked w/ many people over the past week andhave noticed that some people have been dealing with migraines for thepast 20 yrs. and have made numerous trips to Chicago. The clinic, staff,and doctors have been great and I do believe this has been the best placeto go for Cindy to learn more about migraines and how to manage them andto see that there are other people that are dealing with them also. Wewill need to go back in 4 to 6 weeks for a check-up. They are going togive prescription drugs to Cindy for pain management and also to try toeliminate the migraines from coming. It does look like we will betraveling on this road maybe for awhile; but the possitive thing is thatwe are traveling. Thank-you for all your prayers and e-mails and hope tosee you all shortly.Kyle.
2-20-07
Hi everyone!
What started out as a plea for prayers has become a great communication tool! We are so thankful for each of you and your prayers. What a gift! :)
Some of you may have heard from Kyle while we were in Chicago and some not, so I am just going to give some information about what happened there. Most importantly, though, I was discharged this morning (February 20) and we arrived home safely this evening!
I had an appointment in Chicago at the Diamond Clinic, which is known worldwide for being the top headache clinic, on Monday afternoon, February 12. I was admitted to St Joseph's hospital immediately after the meeting with the intention of "breaking" the headache.
They inserted a pic line under my left arm for all iv meds and blood draws. Every 6 hours I was given meds by iv and also took several oral meds as well. The drugs worked although they were tweaked a few times. My headache broke on Monday, February 19. They made a few changes to the meds, especially because I became very nauseated for a few days. During the time that we were there, we also met others that have had the same problem and some that were worse. We were both able to attend classes they had at the hospital about migraines. They increased our knowledge about migraines and provided a way to pass some time. :) I missed a few because of the nausea but they also had them on video so we watched those later.
It became clear that even though this headache cycle is broken, this will probably be a long term issue for us to deal with. To quote Kyle, "we may have a long trip ahead of us but at least we are on the road." We were very impressed with the doctors, nursing staff and hospital. We don't know if I will end up back in a migraine cycle that won't end but we do know where to go if it does. I am also taking four preventative drugs daily in an effort to keep the migraines away. If I get a migraine, I have meds varying from pills, nose spray and self administered shots to stop the migraine. I need to go back to Chicago in 4-6 weeks to see how things are going and to possibly adjust meds.
Although the migraines have stopped, the high pitched buzzing in my ears has not. It started about a month ago and by this Monday the doctor started questioning whether it is migraine related. We are just praying that it goes away over the next several weeks. It is a minor irritant and I have wondered if my nervous system has been in high alert for so long and it is taking my ears a little longer to figure out that things are ok now. :) One of the drugs is also making me feel a bit dizzy and off balance, so if you see me walk into a wall, please blame the drugs! :)
We also know that I need to slow down a bit. The doctor said to be especially cautious the first month so I don't go right back into the cycle. Many of you know that that might be challenging for me! I don't have a lot of sit in me, but I need to learn.
The best part is, though, that I feel really good. My head doesn't hurt and it has been a long time since I was able to say that. I still have an ache in the back right side of my head and occasional aches in my right forehead but I can bend, move my head, move my eyes and anything else without pain. I am so excited!
Thank you again for your prayer support. We have had so many people call, email, bring meals, send cards and pray for us. It is overwhelming. We thank each one of you. It is wonderful to live in a Christian community and see Christ's love in action through each of you.
Cindy
1-16-08
Kathy Kaptein <kathyk@smartsteer.com> wrote:
As many of you know, Cindy has been suffering from terrible headaches for over a year and a half. She is to the point of having a poorer quality of life, and really couldn't keep going on with life as she is having now so much of the time. She had found out about a new doctor in Milwaukee, WI. that might be able to help her. She spent yesterday having a series of tests and then met with the doctor this afternoon. She was diagnosed with a condition called Chiari. Her brain and brain stem is falling down into her spinal chord, and there are also two arteries or veins that are pushing into her spinal chord. They can do surgery to fix the situation, but she hasn't scheduled it as of yet. She has an appointment with the doctors at the headache clinic tomorrow in Chicago, and then will make their decision if and when they will set it up. I think now the question is just when. The doctor in Milwaukee can schedule it in about 2 to 3 weeks. I will keep you updated as to her next steps.
Thank you all for the many prayers that have been given for her and her family.
Kathy
1-20-08
Brain Pain: Illnesses May Be MisdiagnosedNeurosurgeons Disagree On Skull Surgery
CHICAGO -- About 5 million Americans have been told they havefibromyalgia or chronic fatigue syndrome, but there is a controversyover the diagnosis. Many of these patients may have an entirelydifferent condition that can be helped, reported WMAQ-TV in Chicago.Brain Pain In the case of Inga Aragon, she had mysterious headaches thatbegan when she was in second grade and got worse over the years. "(Theheadache) started at the base of my head in the back," said Aragon "andit would sort of move up to the front."The headaches affected Aragon profoundly."I left college because of it," Aragon said. "I had the eyes tearing andvomiting -- and all that fun stuff." Aragon could neither read nor useher talent of drawing because looking down made the pain worse. Nobodycould explain why. I went to tons of doctors," Aragon said. "All kindsof doctors, and no one could figure it out." Then three men in Aragon'slife came to her re scue, she said.First she married Jason, who provided support.Then her father, suffering some of the same symptons, began to doresearch. Together, they found Dr. Dan Haffez, a neurosurgeon at St.Joseph Hospital in Chicago, who diagnosed Aragon and her father with ahereditary brain defect known as chiari malformation. "The skull is alittle small for the brain," Haffez explained. "And a portion of thebrain descends into the upper spinal canal."Symptoms of chiari malformation can include pain, dizziness andweakness. But symptoms alone can be deceiving because they mimic twoincurable conditions -- chronic fatigue syndrome and fibromyalgia."It's very possible that 20 to 25 percent of fibromyalgia sufferers may,in fact, have a problem emanating from the cervical spinal cord, andthat problem may be caused by chiari malformation," Haffez said. "Or itmay be caused by a disk. Or it may be caused by a narrowing of thespinal can a l. The numbers can be quite staggering."Haffez is one of the country's leading neurosurgeons who believes chiarimalformation is underdiagnosed. If it's true, then it means thatthousands of patients may be missing out on a cure, because chiarimalformation can be corrected with surgery.In Aragon's operation, Heffez hollowed out some of the back of herskull. That created enough room for her brain, so it would stopsqueezing down her spinal cord.The American Association of Neurological Surgeons worries that somepatients may be getting the surgery even though they don't need it. Theassociation "does not recognize the use of cervical decompressionsurgery as a treatment alternative for chronic fatigue syndrome."Haffez said he believes the surgery is controversial because "the laymessage is that people are doing surgery, chiari-type surgery, in orderto treat fibromyalgia or chronic fatigue syndrome. Nothing could befurther f r om the truth."Haffez believes the controversy would end with better diagnosis ofchiari malformation. He said doctors need to go past the symptoms andlook for more subtle clues in brain scans, then perform a meaningfulneurological exam that can tie all the elements together. "There's acertain pattern of abnormalities that will point you to this particulararea of the nervous symptom," Haffez said.Although other neurosurgeons say the diagnosis is not easy, theoperation worked for Aragon and her father. The pain disappeared forboth of them."I went back to school," Aragon said. "I am working 40-hour weeks now. Ijust couldn't do those things before. I'm really excited."Studies show that about 85 percent of patients who undergo the surgeryeither have significantly less pain or are completely cured.
1-21-08
Kyle and Cindy have spoken with the neurosurgeon in Milwaukee, and the earliest he can schedule surgery is February 4 which is two weeks from today. They hope to break Cindy's headache by this weekend and release her by Saturday or Sunday. Last time it took 8 days before they could break it, so time will tell. The plans for now are that if she gets released by this weekend, she will come home and then go back to Milwaukee for surgery the 4th. I asked her what they were going to do in surgery and she said they will take out a piece of her skull, open up the membrane covering her brain, and bore out some of the top vertebrae to make more room for her spinal chord. She is nervous about the surgery but knows that this right now is her only hope of trying to get rid of the headaches. We know there are so many people praying for her and their family and God does do miracles!! Between our family and Kyle's family, the kids are being well taken care of, but I know mom and dad are missing them!!
Thank you all so much!!
Love, Kathy
1-21-08
Committee;I did try to send an email earlier today but I don't know if it went. Wegot Cindy down to Chicago on Friday night at 10:30pm. She has beensleeping probably 20 out of 24 hrs a day since Sat. The doctor is goingto start her on the MAOI drugs on Tues and she will probably get releasedon Sat. or Sun. I am planning on coming home tomorrow (Tues.) weatherpermitting and then go back this weekend to pick her up. We also made anappt. in Milwaukee on Monday Feb. 4 for the surgery on the top of hervertebra / skull area. The MAOI drugs will not fully kick in until 4 to 6weeks so we should know if the surgery is going to help her or not. Also;it is alot easier going off the MAOI drugs than what it was the currentdrugs she was on. I am planning on a steering committee meeting Thurs.night at 7pm at our office yet. Thank-you for all your prayers, thoughts,concerns, it really means alot to us.Kyle and Cindy.
1-28-08
Hi!
I am writing a few of you just to update you a little. I am not feeling so great and am probably not going to be talking on the phone much for the next little while unless I have a dramatic turnaround. So I thought I would touch base a bit by email and hopefully things will turn around and I will see and talk to you soon! Right now I look and feel a little like a drug addict--I am shaky and trembling. I am jumping ahead a bit but abruptly stopping my meds has been a challenge.
The headaches have been increasing again the last couple months as many of you know. We traveled to Milwaukee the 14th and 15th testing and visiting a doctor about a possible spine problem. Then on Wednesday the 16th we drove to Chicago to see my headache doctor. We decided then that I would begin tapering down on my meds for two weeks, then travel to Chicago for a 3-5 day stay in the hospital while we started a new drug regimen. Thursday the 17th I woke up suprisingly feeling ok but at noon I suddenly felt a very strong headache coming. I went home and took one of my strong drugs to stop it but it didn't work and I was a lot of pain. To make a long story short, the drugs the hospital gave me Thursday evening didn't work, so I was back there at 5:30 am for more. They gave me a drug cocktail that the Chicago doctors prescribed to knock me out and then Kyle took me back to Chicago. I was in the hospital there until this past Saturday.
They didn't actually break the headache which is disappointing but also brought us to the point of knowing that we need to try something new. The Milwaukee doctor believes that a surgery removing a bit of skull and much of the top vertebrae of my spine will open up room where the bottom of the brain may not have enough room. The name of the problem is called Chiari malformation. Mine is mild but we believe that this may be the cause of my headaches. The surgery is scheduled for Feb 6 if all goes well. I have pre-certifications done today and I have to get clearance from my general doctor tomorrow that my health is good enough for the surgery. If it is cleared, we most likely will move forward with it. We did a lot of praying before going to visit this doctor and have done a lot since. We are beginning to feel a peace about the surgery.
I am feeling very vulnerable to headaches right now. The headache didn't actually "break" this time while in Chicago. The doctor there is not in favor of the surgery. We have made the decision to stop most of the new drugs they had started me on in preparation for surgery. So I will be laying very low at home, probably not talking on the phone much or anything because that tends to aggravate it.
We would appreciate your prayers for a sucessful sugery for me--both that it be completed safely and that it stops the headaches. Also keep my family in prayer as this has been a hardship for all of us. Please feel free to forward this email as I am sure that I am not remembering who to touch base with. We appreciate the prayer of so many! Knowing that I am on so many prayer lists is a source of great humility to us--and we have decided that it will be really nice when the need is not so great!
Cindy
2-1-08
Greetings!
I am so overwhelmed at the goodness and godliness of so many friends! I hadn't really planned to write again but I thought I would just send out another note. My mom (kathyk@smartsteer.com) will be sure to send an email out to a few that others of you may forward out so that you know how things are going in Milwaukee. My parents will be going with Kyle and I to Milwaukee but they will have laptops along for correspondence.
Thank you so much for the outpouring of love and support to me and my family. I am so thankful for God's grace that He is really showering on us through all of you. I have heard that there are people praying all over the place for us. I have to admit that I have tears flowing a lot these days and they are flowing each time I write as I think of the love and support that is being shown.
Things are going as we had hoped so far. I have completed my pre-surgical testing and it looks like everything is clear and open for surgery. The weather is looking like it will hold as well, so we most likely will be leaving Tuesday morning for Milwaukee with surgery to follow on Wednesday (2-6-08) at 1:00 pm. My headache is still staying low which is what we had hoped and prayed for. So now we are just praying that the headache will not increase and that I stay healthy until that day. (On Thursday Kylie was throwing up so we are really hoping that it doesn't pass to the rest!)
Kyle and I are feeling at peace with the decision we have made to go forward with this surgery. We asked my parents and sisters to research it, check out the doctor and talk and pray about this decision as well and I believe that God has led us to this point. The neurosurgeon says that this is one of his lower risk surgeries. We know that there are risks, though, and have accepted them. We are really praying that the Lord's answers to all of the prayers of His people is that my headaches will be removed. If He answers in another way, though, we will continue moving forward as we need to.
We are hopeful that my health improves after surgery. I really am just trying to prepare for anything and we pray for the grace and the strength to deal with things as they come. The doctor's office has said that the expectation is that the surgery will be about three hours. I will be in icu over night and if things are going well I will be placed on the regular floor after that for about 5 days. It sounds like we will be going back for follow up a week after and then few weeks then about monthly then bi-monthly for about a year or so. We will know that road well.
A few questions that have come up I will answer briefly. Our kids are doing remarkably well right now. Our life has not been "normal" for quite a while now so this doesn't seem so odd to them now I guess. We also know that prayers of so many are comforting them. Yes, the piece of skull that comes out will be put back in after surgery. :) It sounds like I will only have a small area of hair shaved for surgery, although at this point I told them they could shave my whole head if they thought it might help. I think we are going to have to have a big celebration party you are all invited to when I am doing much better--that sounds like a lot of fun!
Thank you once more for your outpouring of love and support. As I have shared with some, sometimes our most difficult times in life are our best. We can see so clearly the love of so many. We can feel your prayers and we feel so near to our heavenly Father. We are confident going forward that this is the path He has made for us and that He is carrying us through.
God's blessing to you!
Cindy
2-2-08
2/7/08
Here is an update on Cindy from Renae Calkhoven: Hello everyone, I wanted to update you all on Cindy. If you haven't been getting my emails the last 2 days I apologize. I was copy and pasting your email addresses and my computer didn't appreciate that so much. Cindy is doing so well. She had a great night last night and is recovering well. With this surgery, headaches and severe nausea or quite common and so far she hasn't had either. Thank the Lord!! This morning they were saying she would be in the ICU for a few days, now tonite they're thinking she'll be out tomorrow and possible be dismissed as early as Sunday. God is so good!! He has answered ours prayers in greater ways than we could have hoped for. Thank you all for your constant prayers. If you would like to send her a card, several people have asked, here are the addresses. The hospital is: Columbia St. Mary's 2323 North Lake Dr. Milwaukee, WI 53211 Room # 202 The hotel where she will be staying after she is dismissed is: Excell Inn 5485 N. Port Washington Rd Glendale, WI 53217 Room #320 If you have any questions email me at renae@calkhovens.com. Renae
2/14/08
HELLO EVERYONE,
CIndy is doing much better than Monday. Her headaches were caused by a spinal leak from the surgery. It is a risk of the surgery and it can occur right away or a few days later like Cindy. It's nothing that CIndy did. The Dr. had her lay flat for 24 hours and and than very slowly raise her head, first 10 degrees and than lay flat for 1 hour, than 20 degrees and vice versa. She got to about 45 degrees and than got nauseated and so she had to start over. Today however she is doing much better. She has been up and even walked around the nurses station 3 times today!! So very exciting!!! God just keeps answering our prayers. She is planning on getting released from the hospital tomorrow and heading home, hoping to be home by Friday. Please pray for their trip home, the weather tomorrow isn't supposed to very nice, also pray that Cindy tolerates the driving ok. Kyle and my Dad made it home last night. They are very excited to be home. We also need to keep Kyle and the kids in our prayers. They've all been through so much, especially the last few months. They need lots of love and encouragement. Thanks for all your emails and for all your continued prayers.
REnae
3/7/08
Hi!
We want to thank everyone again for so much kindness! We have been blessed beyond measure!
I thought I would write just to let everyone know how things are going. It has been four weeks since my surgery now and I feel like I may have turned a corner this week. I am feeling better overall, which is so nice! I am starting to be up a little more then I am down now, which is also an improvement.
Monday, March 10 I will be in Milwaukee for testing and then will meet with the doctor on Tuesday. They will be checking to see if everything is healing correctly. They will also be watching for leakage of spinal fluid. If there is any leakage they will need to open the incision and re-stitch part of the patch in the covering of the brain. The chances aren't very high that I will have this problem and I don't feel anything so I think that it should be ok.
After this appointment I believe that we will need to go down there about every two months for a minimum of a year to see the doctor and check the healing process. I know that the recovery process is going to be lengthy. Even though I am feeling better I am still amazed at how weak I am! I went to the office for the first time just to sign a couple things yesterday and was there about 1 1/2 hours. I came home shaking, I nearly passed out and then I slept for 2 1/2 hours, only waking because the phone rang. So, patience is a virtue that I am really working on!
I will try to write once more when we return from Milwaukee.
We are so thankful for all of you! We continue to be amazed at the kindness everyone has shown and the prayers that have been said for us. We are so grateful!
Cindy
3-13-08
Hi!
I am thankful to say that we are back from Milwaukee! The doctor reviewed the new mri scans and said that everything looked exactly the way that he wanted it to. Since I have been feeling well he even said that we don't have to come back for any more follow up! Yippee! We were surprised but delighted.
The trip went better this time. Kyle put a mattress in place of some of the seats in our van so that I could lay down as I needed. That made a huge difference in the traveling. The rough roads were particularly much more tolerable laying down then sitting up.
We are thankful to be looking at closing this chapter in our lives. I don't think I will ever forget how horrible the headaches were and what a relief this surgery was. We experienced such clear answers to prayer through this journey. Many were praying on our behalf as they saw the pain in my face many days (even though I thought I was hiding it well).
I quickly want to just explain how the Lord led us through this, because it truly is amazing! In December, Joyce (our employee) had an appointment with the wife of a State Farm agent--Marlene and Larry of Rock Rapids. Joyce was busy and I told her that I would like to take the appointment that day. Marlene didn't know anything about the headaches but she could see that I had a headache that day. She started asking me questions as we were going through some things. At the end of the conversation, she told me that I had some symptoms of Chiari and suggested that I meet with Dr. Heffez in Milwaukee. We researched him then decided to try it. We had tried nearly everything else and this was totally different.
After seeing my mri he agreed to see me after I had a better mri completed and some neurological tests done. We did those on Monday, January 14 and met him January 15. He reviewed everything and told us that he thought that surgery would eliminate my headaches. We then traveled to Chicago on the 16th to see my headache doctor. He was adamantly opposed to the surgery! We decided to begin the process of weaning off of the preventative drugs that I was taking (between 20-25 pills a day!) and then I would be hospitalized for 3-5 days and be put on new drugs that he called the "last resort" option.
We got home the night of the 16th and went to work on Thursday the 17th. At about 11:30 I felt a very strong headache come on. My abortive drugs didn't work and I landed up in the Rock Valley ER late in the afternoon. The pain drugs they gave me gave slight relief but by 5:00 the next morning it was even stronger. The doctor told my family that they couldn't do anything for me and that we needed to decide what to do. The Chicago doctor ordered a mixture of drugs that would relieve enough pain for Kyle to drive me back to Chicago on that day (Friday). I was in the hospital for 7 days and actually have a total memory loss for 5 of those days! During that time, Kyle and my family decided that something had to be done. They researched the doctor more and found that he was in the top three in the country for Chiari. (We also found that I didn't meet the standard definition of Chiari so he is one of the very few that would even do my surgery!) They scheduled the surgery and I had it two weeks later!
The surgery included removing some of the skull bone and some of the top vertebrae--both opening up the area where the spinal cord comes through and removing some of the outside so that there was more room for the brain. They also put in a metal plate with a screen in it that will prevent the brain from moving down again. They also tightened the dura, which is the covering of the brain. The "toncils" of the brain were battered and the skull was squashed against the brain which was causing it to be indented. I guess I either was thick skulled or have too many brains--either would be acurate! :)
If we hadn't been so desperate or if the headaches had not been as severe as they were during the couple months prior, we may have had a more difficult time making the decision. As it stood, I was in such poor condition and the Chicago hospital stay did not stop the headaches so we were not confident in what they could do. (I had $2500 worth of drugs in 7 days pumped through me and if that wouldn't stop the headaches, we didn't think the new drugs would either!)
So the Lord worked mightily, ensuring that I met the right person that knew the right doctor that had the right diagnosis at exactly the right time. I am feeling great and am so thankful that our prayers have been answered! The recovery is going to take time, but we see the light at the end of the tunnel. This is temporary and will continue to get better.
Thank you so much for your prayers! We appreciate each one of you that have blessed us through your prayers and so many other kindnesses! God is so good!
Cindy
10/29/08
From: Kyle Van Wyhe
To: kvanwyhe@mtcnet.net
Sent: Wednesday, October 29, 2008 2:29 PM
Hi!
As some of you may know, my headaches are back and they have become severe very quickly. We have had difficulty with letting people know and keeping them up to date so someone suggested that we start a blog to allow people to check at their convenience how things are going. We did and Kyle and I will keep it updated or a few family members will be able to update it if we aren't able to. For those that are interested in how things are going, you can click on the link below. I think you might have to open a google account which is free and pretty simple. Feel free to pass this site on to anyone that is interested.
We covet your prayers! Kyle and Cindy
http://cindyvw.blogspot.com/
End of medical updates prior to blog
1-23-07
Hi!
I wrote an email last week (attached below if I forgot to send it to you) letting a few people know what was going on with me since I feel like I have dropped out of sight for so long. I was in quite a fog when writing that email and had my eyes closed while writing because the computer screen is bright and hurt my eyes. I don't remember who I sent the email to but I had a strong desire to ask people to pray. Now I have to thank you for your prayers!
The iv drugs that I mentioned in my first email didn't work. We actually did four of them although normally they stop at three in an attempt to stop the migraine but the headache flared up just as strongly right after they were done. This weekend was pretty rough so I was looking forward to the appointment today.
The appointment in Omaha went well today. I woke up thankful because my head hurt much less then it has for a couple weeks. I had dreaded driving that far with bumpy roads and bright snow to deal with. The doctor was thorough and definitely is experienced with migraine headaches. He defined my headache as a transformed migraine. The headaches started in July and increased in frequency until October. Since mid October I have had a headache with varying severity everyday.
The doctor started me on a medicine which I will get by shot three times a day (thanks to Kyle) for five days. We are praying that this medication will stop the migraines, which is our first goal. If this medicine doesn't do it, I will need to go back to Omaha and will be hospitalized for 4-5 days and will be given intervenous drugs 24 hours a day to stop the migraine. Needless to say, I am really hoping that the first meds will take care of it but at this point I am more than willing to go back to Omaha to become headache free. I hardly remember what that feels like! :)
I am scheduled to go back in a month because we are also starting a few new drugs now that are supposed to prevent new migraines from ocurring. This takes trial and error because everyone responds differently to drugs. I tend to not tolerate drugs very well so some of the drugs have been ruled out but he has some new drugs to try. Also the typical migraine stoppers like Imatrex aren't working for me so I may need to keep a supply of these shots for new migraines that pop up in the future. We'll see.
This will be a process and most likely I will be dealing with this long term, but the good news is that I will have more tools to manage it instead of dealing with headaches everyday.
Thank you so much for your prayers and expressions of concern. So many have been so kind to us during a rather difficult time for our family. I am so thankful for each one of you! Your prayers have truly been felt and I am reminded that sometimes we need to go through some difficult times to remember that God is always in control and He has so many that he uses to minister to others. What a blessing! God is so good!
Cindy
January 17, 2007
Hi everyone,
I have decided to write to you all tonight even though I haven't talked to some of you for a while. The reason I am writing you is to ask you to pray for me.
Beginning in July with an increase in frequency and severity I have been dealing with migraine headaches. Since mid October I have had them nearly every day, varying in severity, with a few days break here and there. I have tried all the drugs the local doctors and neurologists have prescribed, acupuncture, physical therapy, chiropractic and massage therapy and have seen an alergist. I have cut many food from my diet as well, but so far nothing has helped.
Today I went in to the hospital as an outpatient after a bad string of days and they gave me a "cocktail" of drugs by iv. I have done that twice before, once with an overnight stay in the hosptital and once as an outpatient. The first time gave me a week break and the second time a day. I am going to repeat the "cocktail" tomorrow and am praying for a week of relief.
Today the neurologist referred me to a specialist in Omaha and I miraculously have an appointment next Tuesday. Normally it takes about 6 weeks to get in but they had a cancellation.
I believe that prayer is very powerful and and am hoping that by telling you a bit about what is happening that you will pray for me and the doctors to find a way to treat me. Please pray for my family as well because it has been tough on them, too. It is difficult for me to write to ask for this help, but I know that the Lord is faithful and I need to be humble and ask for your prayers.
Thanks!
Cindy
1-27-07
Hi!
I thought I would give one more update and hopefully after this it won't be necessary.
The injectable drug that Kyle was giving me was discontinued Friday afternoon. We started them on Tuesday and I still had a mild headache on Friday. Unfortunately I was having a reaction to the drug as well that required that I no longer take the drug. My legs ached, sometimes mildly and sometimes badly enough that it was difficult to walk.
Today the headache is back in full force.
The doctor's office in Omaha gave us two options. First, I can take an additional, stronger steroid pack and wait for six to eight weeks for the other drug that I am taking to kick in with hopes that the headache will resolve after that period of time. The second option, which I believe we will choose, is that I will be hospitalized in Omaha for four to five days. I know little about it so far except that we have to call Monday with our decision. It sounds like I may be sedated at least part of the time and I will be on iv's 24 hours a day to break the headache. If all goes as we plan, we will drive down Tuesday.
I was discouraged yesterday that the shots didn't work. Today, after having a fairly strong headache, I am ready. Please pray that it will work!
Cindy
1-29-07
Hi!
I just thought I would let you know that I am going down to Omaha tomorrow morning. The doctor indicated that I should expect the hospital stay to be 4-5 days. They intend to use stronger doses of drugs by iv but I don't know yet if they are the same drugs I have had or others. I am really praying that this works and that I am able to tolerate the drugs. I know many of you are praying for me and our family as well. Thank you so much! God is so good. I know that he has a plan in all of this that we aren't seeing right now. I do have to say that it is humbling to know that so many care and are willing to help us and pray for us. The Lord has placed many special people in our lives!
Someone told me that this time away sounds like a vacation--sleeping and reading books for four or five days. I can think of many places I would much rather be for a vacation and it would probably cost much less, but I guess I will take this option for now.
Hopefully I will be seeing many of you soon and will feel like a new woman! :)
Cindy
2-1-07
Hi!
Surprise--I am home! I am a little discouraged about it, though. The headache is not gone.
There seems to have been a disconnect between us and the doctor. On Monday I told their office that I had a bad weekend but it was mild on Monday. They said that since it was still there it should be treated. For some reason he had a change of heart after I was there the second evening and said that unless I had a severe headache he wouldn't treat me through the hospital. Unfortunately when I have a severe headache, I would not be able to travel that far because of the bright sun and bumpy roads.
We are disappointed in the doctor and his attitude toward us. I suspect he must have had a very bad day at work because he came to my room with a chip on his shoulder.
We aren't sure at this point what to do next. We stopped at a restaurant on our way back today that was a little noisy and the headache immediately started getting stronger. I am on several medications at this point and I feel like I am trembling all the time.
Please pray that the Lord will give us direction.
Cindy
2-5-07
Hi!
I thought I would let you know that I visited my local doctor last Friday. We narrowed down the 12 prescriptions that I had from the Omaha doctor to two that I am comfortable with. We also discussed the treatment that I received from the specialist in Omaha. He was shocked. He felt that I really need to pursue going to the Diamond Clinic in Chicago which is one of the best headache clinics in the U.S.
We agreed to his recommendation so he had our records faxed to Chicago and had them review my records and then they contacted us this morning. We are amazed that we have an appointment time for a week from today which is February 12. We are anticipating that we will be there anywhere from three to seven days.
We are really praying for answers and relief. I am also praying for a "good" day when we travel because riding in a car on a "bad" day is difficult. I don't think that I am tolerating the headaches as well as I had and am so anxious for some headache free days. I know there probably won't be a "magic wand" but I am really hoping that we find a reason for the headaches or even a way to decrease the frequency to a few a month.
I appreciate all of your emails of support as well as the kindness that has been shown to our family during this time. Thank you so much!
Cindy
2-12-07
To All;It is Monday night and we have Cindy checked into the St. Joseph'shospital. The trip over to Chicago went alright. The roads were good andnot to rough for Cindy. We had the Dr's appt. at 1:30pm today and it wentwell. Since Cindy has no family history w/ migraines and she didn't haveany life changing incident/accident last summer, the doctor thinks it'sstress and hormones. They are going to do another MRI and check her heartand do a few other tests. The doctor thinks that is might take 4 to 6 daysto break this migraine cycle and then come back in 4 to 6 weeks. Thehospital has daily classes for Cindy to go to which includes: food diet,pain management, stress relief, living w/ migraines, etc. The doctorthinks that the migraine will probably not disappear forever (which weboth wished for) but that we can get the migraines down to 2 to 3 a month. We are starting to get to know our way around Chicago pretty well.Everything is within walking distance for me. They are talking 6 inchesof snow for tomorrow. Will keep you informed again if anything majorcomes up. Thanks for everything!!!Kyle.
2-13-07
Hello All;Tuesday update for Cindy. They are pushing pain drugs every 6 hours thruthe iv to try to break the migraine cycle. They are thinking it mighttake a couple of days yet since she has had the migraine for so long.Today was a pretty good day. We went to some classes that talked aboutexercise and how to handle nerve endings and blood flow to the brain andyour muscles. It was called Biofeedback - very interesting on how you cancontrol different things about your body without drugs. The doctor wantedanother MRI done to make sure that nothing has come up in the brain overthe last 2 months since the first MRI she had in Sioux Falls. She had theMRI done late this afternoon around 5pm. That was not good for themigraine. She came back pretty much wiped out. Probably better to have itdone at the end of the day then at the beginning of the day. Glad that weare not traveling today - alot of snow and wind over here. Thank-you forall your prayers and thoughts and e-mails.Kyle.
2-14-07
To All;Wednesday update in Chicago. Cindy had a good day today. The migrainewas not very strong today but still there. The doctor advised her torelax and have patience - she has only been here since Monday. That meansto me - it might be a few days yet. We read some info. from the clinicthat stated 7 to 10 days. All of Cindy's tests and MRI came back fine -she is a healthy 30 something female w/ migraines. The doctor did statethat another posibility how she got the migraine might have come from somevirus or bug over the past summer that she didn't even know about that shemight have caught. Probably never find out for sure what caused themigraine to come. She took another class today on Biofeedback (paincontrol w/out medication). Thats about all for the day. If interested -her phone number to her room is # 773-665-3940 she doesn't mind phonecalls when it is a mild migraine day. Until tomorrow.Kyle.
2-15-07
Just sending this e-mail to family.Cindy not having a good day today. The drugs are still set up every 6hrs. They get switched between DHE and Depacon/Decatron?? (I think).Those are the main 2 that get used and w/ the best success rate inbreaking migraine cycles. The DHE was the same that I was using to giveher shots in the leg. They can give her 9 doses of the DHE. They gaveher #7 tonight. The migraine is still there and not broke yet. The DHEdoes not settle real good w/ her. She was feeling a little sick (upsetstomach) yesterday. Today it got worse. They are giving her anti-nausashots but late this afternoon she was pretty miserable/sick. Sounds likethey will try a different set of drugs if she still has the migraine inthe next day or two. Hopefully tomorrow will be a better day or betteryet the migraine cycle will get broken.Kyle.
2-16-07
To All;It is Friday night. Cindy had a rough day yesterday and today. The drugskinda got her sick. The migraine has not broke yet. They changed thedrugs today and she still gets them every 6 hrs. The doctor said thatthey will evaluate the situation on Monday. He is kinda thinking ofreleasing her on Wednesday, which will be the 10 days. He is prettyconfident that they will have the migraine broke at that time. Have agreat weekend.Kyle.
2-19-07
To All;It is Monday afternoon. After Cindy talked with her doctor this morningit sounds like tomorrow (Tues.) she will get released and hopefully Tues.night we will be home if all goes as planned. The official diagnosis theygive Cindy is a statis migraine with daily chronic headaches. Is thesevere migraine gone - yes. Does she still have a headache on the rightside of her head - yes. Is there a possiblity that the severe migrainewill come back - yes. We talked w/ many people over the past week andhave noticed that some people have been dealing with migraines for thepast 20 yrs. and have made numerous trips to Chicago. The clinic, staff,and doctors have been great and I do believe this has been the best placeto go for Cindy to learn more about migraines and how to manage them andto see that there are other people that are dealing with them also. Wewill need to go back in 4 to 6 weeks for a check-up. They are going togive prescription drugs to Cindy for pain management and also to try toeliminate the migraines from coming. It does look like we will betraveling on this road maybe for awhile; but the possitive thing is thatwe are traveling. Thank-you for all your prayers and e-mails and hope tosee you all shortly.Kyle.
2-20-07
Hi everyone!
What started out as a plea for prayers has become a great communication tool! We are so thankful for each of you and your prayers. What a gift! :)
Some of you may have heard from Kyle while we were in Chicago and some not, so I am just going to give some information about what happened there. Most importantly, though, I was discharged this morning (February 20) and we arrived home safely this evening!
I had an appointment in Chicago at the Diamond Clinic, which is known worldwide for being the top headache clinic, on Monday afternoon, February 12. I was admitted to St Joseph's hospital immediately after the meeting with the intention of "breaking" the headache.
They inserted a pic line under my left arm for all iv meds and blood draws. Every 6 hours I was given meds by iv and also took several oral meds as well. The drugs worked although they were tweaked a few times. My headache broke on Monday, February 19. They made a few changes to the meds, especially because I became very nauseated for a few days. During the time that we were there, we also met others that have had the same problem and some that were worse. We were both able to attend classes they had at the hospital about migraines. They increased our knowledge about migraines and provided a way to pass some time. :) I missed a few because of the nausea but they also had them on video so we watched those later.
It became clear that even though this headache cycle is broken, this will probably be a long term issue for us to deal with. To quote Kyle, "we may have a long trip ahead of us but at least we are on the road." We were very impressed with the doctors, nursing staff and hospital. We don't know if I will end up back in a migraine cycle that won't end but we do know where to go if it does. I am also taking four preventative drugs daily in an effort to keep the migraines away. If I get a migraine, I have meds varying from pills, nose spray and self administered shots to stop the migraine. I need to go back to Chicago in 4-6 weeks to see how things are going and to possibly adjust meds.
Although the migraines have stopped, the high pitched buzzing in my ears has not. It started about a month ago and by this Monday the doctor started questioning whether it is migraine related. We are just praying that it goes away over the next several weeks. It is a minor irritant and I have wondered if my nervous system has been in high alert for so long and it is taking my ears a little longer to figure out that things are ok now. :) One of the drugs is also making me feel a bit dizzy and off balance, so if you see me walk into a wall, please blame the drugs! :)
We also know that I need to slow down a bit. The doctor said to be especially cautious the first month so I don't go right back into the cycle. Many of you know that that might be challenging for me! I don't have a lot of sit in me, but I need to learn.
The best part is, though, that I feel really good. My head doesn't hurt and it has been a long time since I was able to say that. I still have an ache in the back right side of my head and occasional aches in my right forehead but I can bend, move my head, move my eyes and anything else without pain. I am so excited!
Thank you again for your prayer support. We have had so many people call, email, bring meals, send cards and pray for us. It is overwhelming. We thank each one of you. It is wonderful to live in a Christian community and see Christ's love in action through each of you.
Cindy
1-16-08
Kathy Kaptein <kathyk@smartsteer.com> wrote:
As many of you know, Cindy has been suffering from terrible headaches for over a year and a half. She is to the point of having a poorer quality of life, and really couldn't keep going on with life as she is having now so much of the time. She had found out about a new doctor in Milwaukee, WI. that might be able to help her. She spent yesterday having a series of tests and then met with the doctor this afternoon. She was diagnosed with a condition called Chiari. Her brain and brain stem is falling down into her spinal chord, and there are also two arteries or veins that are pushing into her spinal chord. They can do surgery to fix the situation, but she hasn't scheduled it as of yet. She has an appointment with the doctors at the headache clinic tomorrow in Chicago, and then will make their decision if and when they will set it up. I think now the question is just when. The doctor in Milwaukee can schedule it in about 2 to 3 weeks. I will keep you updated as to her next steps.
Thank you all for the many prayers that have been given for her and her family.
Kathy
1-20-08
Brain Pain: Illnesses May Be MisdiagnosedNeurosurgeons Disagree On Skull Surgery
CHICAGO -- About 5 million Americans have been told they havefibromyalgia or chronic fatigue syndrome, but there is a controversyover the diagnosis. Many of these patients may have an entirelydifferent condition that can be helped, reported WMAQ-TV in Chicago.Brain Pain In the case of Inga Aragon, she had mysterious headaches thatbegan when she was in second grade and got worse over the years. "(Theheadache) started at the base of my head in the back," said Aragon "andit would sort of move up to the front."The headaches affected Aragon profoundly."I left college because of it," Aragon said. "I had the eyes tearing andvomiting -- and all that fun stuff." Aragon could neither read nor useher talent of drawing because looking down made the pain worse. Nobodycould explain why. I went to tons of doctors," Aragon said. "All kindsof doctors, and no one could figure it out." Then three men in Aragon'slife came to her re scue, she said.First she married Jason, who provided support.Then her father, suffering some of the same symptons, began to doresearch. Together, they found Dr. Dan Haffez, a neurosurgeon at St.Joseph Hospital in Chicago, who diagnosed Aragon and her father with ahereditary brain defect known as chiari malformation. "The skull is alittle small for the brain," Haffez explained. "And a portion of thebrain descends into the upper spinal canal."Symptoms of chiari malformation can include pain, dizziness andweakness. But symptoms alone can be deceiving because they mimic twoincurable conditions -- chronic fatigue syndrome and fibromyalgia."It's very possible that 20 to 25 percent of fibromyalgia sufferers may,in fact, have a problem emanating from the cervical spinal cord, andthat problem may be caused by chiari malformation," Haffez said. "Or itmay be caused by a disk. Or it may be caused by a narrowing of thespinal can a l. The numbers can be quite staggering."Haffez is one of the country's leading neurosurgeons who believes chiarimalformation is underdiagnosed. If it's true, then it means thatthousands of patients may be missing out on a cure, because chiarimalformation can be corrected with surgery.In Aragon's operation, Heffez hollowed out some of the back of herskull. That created enough room for her brain, so it would stopsqueezing down her spinal cord.The American Association of Neurological Surgeons worries that somepatients may be getting the surgery even though they don't need it. Theassociation "does not recognize the use of cervical decompressionsurgery as a treatment alternative for chronic fatigue syndrome."Haffez said he believes the surgery is controversial because "the laymessage is that people are doing surgery, chiari-type surgery, in orderto treat fibromyalgia or chronic fatigue syndrome. Nothing could befurther f r om the truth."Haffez believes the controversy would end with better diagnosis ofchiari malformation. He said doctors need to go past the symptoms andlook for more subtle clues in brain scans, then perform a meaningfulneurological exam that can tie all the elements together. "There's acertain pattern of abnormalities that will point you to this particulararea of the nervous symptom," Haffez said.Although other neurosurgeons say the diagnosis is not easy, theoperation worked for Aragon and her father. The pain disappeared forboth of them."I went back to school," Aragon said. "I am working 40-hour weeks now. Ijust couldn't do those things before. I'm really excited."Studies show that about 85 percent of patients who undergo the surgeryeither have significantly less pain or are completely cured.
1-21-08
Kyle and Cindy have spoken with the neurosurgeon in Milwaukee, and the earliest he can schedule surgery is February 4 which is two weeks from today. They hope to break Cindy's headache by this weekend and release her by Saturday or Sunday. Last time it took 8 days before they could break it, so time will tell. The plans for now are that if she gets released by this weekend, she will come home and then go back to Milwaukee for surgery the 4th. I asked her what they were going to do in surgery and she said they will take out a piece of her skull, open up the membrane covering her brain, and bore out some of the top vertebrae to make more room for her spinal chord. She is nervous about the surgery but knows that this right now is her only hope of trying to get rid of the headaches. We know there are so many people praying for her and their family and God does do miracles!! Between our family and Kyle's family, the kids are being well taken care of, but I know mom and dad are missing them!!
Thank you all so much!!
Love, Kathy
1-21-08
Committee;I did try to send an email earlier today but I don't know if it went. Wegot Cindy down to Chicago on Friday night at 10:30pm. She has beensleeping probably 20 out of 24 hrs a day since Sat. The doctor is goingto start her on the MAOI drugs on Tues and she will probably get releasedon Sat. or Sun. I am planning on coming home tomorrow (Tues.) weatherpermitting and then go back this weekend to pick her up. We also made anappt. in Milwaukee on Monday Feb. 4 for the surgery on the top of hervertebra / skull area. The MAOI drugs will not fully kick in until 4 to 6weeks so we should know if the surgery is going to help her or not. Also;it is alot easier going off the MAOI drugs than what it was the currentdrugs she was on. I am planning on a steering committee meeting Thurs.night at 7pm at our office yet. Thank-you for all your prayers, thoughts,concerns, it really means alot to us.Kyle and Cindy.
1-28-08
Hi!
I am writing a few of you just to update you a little. I am not feeling so great and am probably not going to be talking on the phone much for the next little while unless I have a dramatic turnaround. So I thought I would touch base a bit by email and hopefully things will turn around and I will see and talk to you soon! Right now I look and feel a little like a drug addict--I am shaky and trembling. I am jumping ahead a bit but abruptly stopping my meds has been a challenge.
The headaches have been increasing again the last couple months as many of you know. We traveled to Milwaukee the 14th and 15th testing and visiting a doctor about a possible spine problem. Then on Wednesday the 16th we drove to Chicago to see my headache doctor. We decided then that I would begin tapering down on my meds for two weeks, then travel to Chicago for a 3-5 day stay in the hospital while we started a new drug regimen. Thursday the 17th I woke up suprisingly feeling ok but at noon I suddenly felt a very strong headache coming. I went home and took one of my strong drugs to stop it but it didn't work and I was a lot of pain. To make a long story short, the drugs the hospital gave me Thursday evening didn't work, so I was back there at 5:30 am for more. They gave me a drug cocktail that the Chicago doctors prescribed to knock me out and then Kyle took me back to Chicago. I was in the hospital there until this past Saturday.
They didn't actually break the headache which is disappointing but also brought us to the point of knowing that we need to try something new. The Milwaukee doctor believes that a surgery removing a bit of skull and much of the top vertebrae of my spine will open up room where the bottom of the brain may not have enough room. The name of the problem is called Chiari malformation. Mine is mild but we believe that this may be the cause of my headaches. The surgery is scheduled for Feb 6 if all goes well. I have pre-certifications done today and I have to get clearance from my general doctor tomorrow that my health is good enough for the surgery. If it is cleared, we most likely will move forward with it. We did a lot of praying before going to visit this doctor and have done a lot since. We are beginning to feel a peace about the surgery.
I am feeling very vulnerable to headaches right now. The headache didn't actually "break" this time while in Chicago. The doctor there is not in favor of the surgery. We have made the decision to stop most of the new drugs they had started me on in preparation for surgery. So I will be laying very low at home, probably not talking on the phone much or anything because that tends to aggravate it.
We would appreciate your prayers for a sucessful sugery for me--both that it be completed safely and that it stops the headaches. Also keep my family in prayer as this has been a hardship for all of us. Please feel free to forward this email as I am sure that I am not remembering who to touch base with. We appreciate the prayer of so many! Knowing that I am on so many prayer lists is a source of great humility to us--and we have decided that it will be really nice when the need is not so great!
Cindy
2-1-08
Greetings!
I am so overwhelmed at the goodness and godliness of so many friends! I hadn't really planned to write again but I thought I would just send out another note. My mom (kathyk@smartsteer.com) will be sure to send an email out to a few that others of you may forward out so that you know how things are going in Milwaukee. My parents will be going with Kyle and I to Milwaukee but they will have laptops along for correspondence.
Thank you so much for the outpouring of love and support to me and my family. I am so thankful for God's grace that He is really showering on us through all of you. I have heard that there are people praying all over the place for us. I have to admit that I have tears flowing a lot these days and they are flowing each time I write as I think of the love and support that is being shown.
Things are going as we had hoped so far. I have completed my pre-surgical testing and it looks like everything is clear and open for surgery. The weather is looking like it will hold as well, so we most likely will be leaving Tuesday morning for Milwaukee with surgery to follow on Wednesday (2-6-08) at 1:00 pm. My headache is still staying low which is what we had hoped and prayed for. So now we are just praying that the headache will not increase and that I stay healthy until that day. (On Thursday Kylie was throwing up so we are really hoping that it doesn't pass to the rest!)
Kyle and I are feeling at peace with the decision we have made to go forward with this surgery. We asked my parents and sisters to research it, check out the doctor and talk and pray about this decision as well and I believe that God has led us to this point. The neurosurgeon says that this is one of his lower risk surgeries. We know that there are risks, though, and have accepted them. We are really praying that the Lord's answers to all of the prayers of His people is that my headaches will be removed. If He answers in another way, though, we will continue moving forward as we need to.
We are hopeful that my health improves after surgery. I really am just trying to prepare for anything and we pray for the grace and the strength to deal with things as they come. The doctor's office has said that the expectation is that the surgery will be about three hours. I will be in icu over night and if things are going well I will be placed on the regular floor after that for about 5 days. It sounds like we will be going back for follow up a week after and then few weeks then about monthly then bi-monthly for about a year or so. We will know that road well.
A few questions that have come up I will answer briefly. Our kids are doing remarkably well right now. Our life has not been "normal" for quite a while now so this doesn't seem so odd to them now I guess. We also know that prayers of so many are comforting them. Yes, the piece of skull that comes out will be put back in after surgery. :) It sounds like I will only have a small area of hair shaved for surgery, although at this point I told them they could shave my whole head if they thought it might help. I think we are going to have to have a big celebration party you are all invited to when I am doing much better--that sounds like a lot of fun!
Thank you once more for your outpouring of love and support. As I have shared with some, sometimes our most difficult times in life are our best. We can see so clearly the love of so many. We can feel your prayers and we feel so near to our heavenly Father. We are confident going forward that this is the path He has made for us and that He is carrying us through.
God's blessing to you!
Cindy
2-2-08
2/7/08
Here is an update on Cindy from Renae Calkhoven: Hello everyone, I wanted to update you all on Cindy. If you haven't been getting my emails the last 2 days I apologize. I was copy and pasting your email addresses and my computer didn't appreciate that so much. Cindy is doing so well. She had a great night last night and is recovering well. With this surgery, headaches and severe nausea or quite common and so far she hasn't had either. Thank the Lord!! This morning they were saying she would be in the ICU for a few days, now tonite they're thinking she'll be out tomorrow and possible be dismissed as early as Sunday. God is so good!! He has answered ours prayers in greater ways than we could have hoped for. Thank you all for your constant prayers. If you would like to send her a card, several people have asked, here are the addresses. The hospital is: Columbia St. Mary's 2323 North Lake Dr. Milwaukee, WI 53211 Room # 202 The hotel where she will be staying after she is dismissed is: Excell Inn 5485 N. Port Washington Rd Glendale, WI 53217 Room #320 If you have any questions email me at renae@calkhovens.com. Renae
2/14/08
HELLO EVERYONE,
CIndy is doing much better than Monday. Her headaches were caused by a spinal leak from the surgery. It is a risk of the surgery and it can occur right away or a few days later like Cindy. It's nothing that CIndy did. The Dr. had her lay flat for 24 hours and and than very slowly raise her head, first 10 degrees and than lay flat for 1 hour, than 20 degrees and vice versa. She got to about 45 degrees and than got nauseated and so she had to start over. Today however she is doing much better. She has been up and even walked around the nurses station 3 times today!! So very exciting!!! God just keeps answering our prayers. She is planning on getting released from the hospital tomorrow and heading home, hoping to be home by Friday. Please pray for their trip home, the weather tomorrow isn't supposed to very nice, also pray that Cindy tolerates the driving ok. Kyle and my Dad made it home last night. They are very excited to be home. We also need to keep Kyle and the kids in our prayers. They've all been through so much, especially the last few months. They need lots of love and encouragement. Thanks for all your emails and for all your continued prayers.
REnae
3/7/08
Hi!
We want to thank everyone again for so much kindness! We have been blessed beyond measure!
I thought I would write just to let everyone know how things are going. It has been four weeks since my surgery now and I feel like I may have turned a corner this week. I am feeling better overall, which is so nice! I am starting to be up a little more then I am down now, which is also an improvement.
Monday, March 10 I will be in Milwaukee for testing and then will meet with the doctor on Tuesday. They will be checking to see if everything is healing correctly. They will also be watching for leakage of spinal fluid. If there is any leakage they will need to open the incision and re-stitch part of the patch in the covering of the brain. The chances aren't very high that I will have this problem and I don't feel anything so I think that it should be ok.
After this appointment I believe that we will need to go down there about every two months for a minimum of a year to see the doctor and check the healing process. I know that the recovery process is going to be lengthy. Even though I am feeling better I am still amazed at how weak I am! I went to the office for the first time just to sign a couple things yesterday and was there about 1 1/2 hours. I came home shaking, I nearly passed out and then I slept for 2 1/2 hours, only waking because the phone rang. So, patience is a virtue that I am really working on!
I will try to write once more when we return from Milwaukee.
We are so thankful for all of you! We continue to be amazed at the kindness everyone has shown and the prayers that have been said for us. We are so grateful!
Cindy
3-13-08
Hi!
I am thankful to say that we are back from Milwaukee! The doctor reviewed the new mri scans and said that everything looked exactly the way that he wanted it to. Since I have been feeling well he even said that we don't have to come back for any more follow up! Yippee! We were surprised but delighted.
The trip went better this time. Kyle put a mattress in place of some of the seats in our van so that I could lay down as I needed. That made a huge difference in the traveling. The rough roads were particularly much more tolerable laying down then sitting up.
We are thankful to be looking at closing this chapter in our lives. I don't think I will ever forget how horrible the headaches were and what a relief this surgery was. We experienced such clear answers to prayer through this journey. Many were praying on our behalf as they saw the pain in my face many days (even though I thought I was hiding it well).
I quickly want to just explain how the Lord led us through this, because it truly is amazing! In December, Joyce (our employee) had an appointment with the wife of a State Farm agent--Marlene and Larry of Rock Rapids. Joyce was busy and I told her that I would like to take the appointment that day. Marlene didn't know anything about the headaches but she could see that I had a headache that day. She started asking me questions as we were going through some things. At the end of the conversation, she told me that I had some symptoms of Chiari and suggested that I meet with Dr. Heffez in Milwaukee. We researched him then decided to try it. We had tried nearly everything else and this was totally different.
After seeing my mri he agreed to see me after I had a better mri completed and some neurological tests done. We did those on Monday, January 14 and met him January 15. He reviewed everything and told us that he thought that surgery would eliminate my headaches. We then traveled to Chicago on the 16th to see my headache doctor. He was adamantly opposed to the surgery! We decided to begin the process of weaning off of the preventative drugs that I was taking (between 20-25 pills a day!) and then I would be hospitalized for 3-5 days and be put on new drugs that he called the "last resort" option.
We got home the night of the 16th and went to work on Thursday the 17th. At about 11:30 I felt a very strong headache come on. My abortive drugs didn't work and I landed up in the Rock Valley ER late in the afternoon. The pain drugs they gave me gave slight relief but by 5:00 the next morning it was even stronger. The doctor told my family that they couldn't do anything for me and that we needed to decide what to do. The Chicago doctor ordered a mixture of drugs that would relieve enough pain for Kyle to drive me back to Chicago on that day (Friday). I was in the hospital for 7 days and actually have a total memory loss for 5 of those days! During that time, Kyle and my family decided that something had to be done. They researched the doctor more and found that he was in the top three in the country for Chiari. (We also found that I didn't meet the standard definition of Chiari so he is one of the very few that would even do my surgery!) They scheduled the surgery and I had it two weeks later!
The surgery included removing some of the skull bone and some of the top vertebrae--both opening up the area where the spinal cord comes through and removing some of the outside so that there was more room for the brain. They also put in a metal plate with a screen in it that will prevent the brain from moving down again. They also tightened the dura, which is the covering of the brain. The "toncils" of the brain were battered and the skull was squashed against the brain which was causing it to be indented. I guess I either was thick skulled or have too many brains--either would be acurate! :)
If we hadn't been so desperate or if the headaches had not been as severe as they were during the couple months prior, we may have had a more difficult time making the decision. As it stood, I was in such poor condition and the Chicago hospital stay did not stop the headaches so we were not confident in what they could do. (I had $2500 worth of drugs in 7 days pumped through me and if that wouldn't stop the headaches, we didn't think the new drugs would either!)
So the Lord worked mightily, ensuring that I met the right person that knew the right doctor that had the right diagnosis at exactly the right time. I am feeling great and am so thankful that our prayers have been answered! The recovery is going to take time, but we see the light at the end of the tunnel. This is temporary and will continue to get better.
Thank you so much for your prayers! We appreciate each one of you that have blessed us through your prayers and so many other kindnesses! God is so good!
Cindy
10/29/08
From: Kyle Van Wyhe
To: kvanwyhe@mtcnet.net
Sent: Wednesday, October 29, 2008 2:29 PM
Hi!
As some of you may know, my headaches are back and they have become severe very quickly. We have had difficulty with letting people know and keeping them up to date so someone suggested that we start a blog to allow people to check at their convenience how things are going. We did and Kyle and I will keep it updated or a few family members will be able to update it if we aren't able to. For those that are interested in how things are going, you can click on the link below. I think you might have to open a google account which is free and pretty simple. Feel free to pass this site on to anyone that is interested.
We covet your prayers! Kyle and Cindy
http://cindyvw.blogspot.com/
End of medical updates prior to blog
slowly improving
It is so good to be home! I decided that you know when you have been in the hospital too much when the nurses all know your name as you wheel onto the floor, where you are from, why you are there now and why you were there multiple times before, know how many kids I have, how old they are and ask about my husband by name. They reminded me as I left this time that they would love to have me stop on the neuro floor for a visit sometime, but it would be easier not to be there as a patient! They are very encouraging but also don't try to hide the reality of what I am dealing with.
I am still incredibly weak--I think each time I have a surgery it just is harder and harder to pick up. This time has definitely been more challenging then the last surgery 6 weeks ago. It isn't that I am sleepy tired but just feel so weary which makes it difficult to deal with very much. I have found that if I stand for too long my whole body begins to tremble--a good sign that I need to rest again.
I don't remember if I wrote this already, but I am pretty sure now that the lower abdominal pain is due to the shunt tubing. Medically the doctors don't seem to acknowledge it but I have found many have had similar issues, ended up in the ER for testing with no great answers. The tubing floats through my whole abdomen--it is actually pretty long and goes down to the lower abdomen then curls back half way up. I think it probably just bumps into things and causes pain.
The Lord has been faithful to our family. I am so incredibly blessed to have a husband that takes care of everything, sisters, niece & moms that cook, bake, clean, shop for me, care for my kids, and run me to the hospital or doctor appointments, a dad that encourages me when I am really down and a church family and friends that have faithfully brought us meals on and off for a couple years, prays for us and encourages us. When I get discouraged I am reminded of the Lord's care for us through you.
I am going to try to take a walk outside today now that the roads are clear of ice and it is relatively warm (33*). I am so afraid of falling--my head feels as fragile as an egg--but now that the roads are clear and it isn't as freezing cold that might be a step in the right direction. :)
I am still incredibly weak--I think each time I have a surgery it just is harder and harder to pick up. This time has definitely been more challenging then the last surgery 6 weeks ago. It isn't that I am sleepy tired but just feel so weary which makes it difficult to deal with very much. I have found that if I stand for too long my whole body begins to tremble--a good sign that I need to rest again.
I don't remember if I wrote this already, but I am pretty sure now that the lower abdominal pain is due to the shunt tubing. Medically the doctors don't seem to acknowledge it but I have found many have had similar issues, ended up in the ER for testing with no great answers. The tubing floats through my whole abdomen--it is actually pretty long and goes down to the lower abdomen then curls back half way up. I think it probably just bumps into things and causes pain.
The Lord has been faithful to our family. I am so incredibly blessed to have a husband that takes care of everything, sisters, niece & moms that cook, bake, clean, shop for me, care for my kids, and run me to the hospital or doctor appointments, a dad that encourages me when I am really down and a church family and friends that have faithfully brought us meals on and off for a couple years, prays for us and encourages us. When I get discouraged I am reminded of the Lord's care for us through you.
I am going to try to take a walk outside today now that the roads are clear of ice and it is relatively warm (33*). I am so afraid of falling--my head feels as fragile as an egg--but now that the roads are clear and it isn't as freezing cold that might be a step in the right direction. :)
Monday, February 9, 2009
home
We did get home last night. We were concerned about the ice storm predicted and didn't want to get stuck somewhere. Overall it went well but the last hour or so was not so great. I am pretty tired today and will probably sleep a bit.
The cosmetic issues of my health issues are very low on my priority list. However I thought I would let you know that about a 3" to 4" area was shaved on the front right side of my head again. So not sure if I should just shave my head again or let it grow unevenly. They did shave much less hair this time so I might just let it all grow for a while then even it out. Kylie measures my hair every week and she informed me that it is now about 2.5 centimeters where it isn't shaved. The shunt was moved slightly back and down and from what I can tell and the second incision is maybe a centimeter from the original shunt incision. I probably will see more when the staples are taken out in a week.
My concern at this point is that the shunt will not get blocked again. It sounds like many don't have problems with this but now that I have had two (3 including the one at the end of the original surgery) revisions it is hard not to question how many more I will need. Will there come a point that my brain doesn't collapse on or clog up the tubing or will this be a never ending cycle? Some people do need multiple revisions. I guess I am now a "multiple" but hoping that the multiple number is small and not ever-growing. I am praying that this might be the end, at least for quite a while. I am so tired.
The cosmetic issues of my health issues are very low on my priority list. However I thought I would let you know that about a 3" to 4" area was shaved on the front right side of my head again. So not sure if I should just shave my head again or let it grow unevenly. They did shave much less hair this time so I might just let it all grow for a while then even it out. Kylie measures my hair every week and she informed me that it is now about 2.5 centimeters where it isn't shaved. The shunt was moved slightly back and down and from what I can tell and the second incision is maybe a centimeter from the original shunt incision. I probably will see more when the staples are taken out in a week.
My concern at this point is that the shunt will not get blocked again. It sounds like many don't have problems with this but now that I have had two (3 including the one at the end of the original surgery) revisions it is hard not to question how many more I will need. Will there come a point that my brain doesn't collapse on or clog up the tubing or will this be a never ending cycle? Some people do need multiple revisions. I guess I am now a "multiple" but hoping that the multiple number is small and not ever-growing. I am praying that this might be the end, at least for quite a while. I am so tired.
Sunday, February 8, 2009
Homeward Bound
Cindy and her mother left the hospital today around 11am. They did not have to do the blood patch after all yesterday. Cindy did advise that today she was feeling alot better than yesterday. They don't know if they will drive the full 8 hours today or if they will stay somewhere tonight and be home tomorrow. Hopefully the shunt will now stay in the right position and will continue to drain properly. Dr. Heffez did put the setting on the shunt back to the same position he had after the first surgery.
Friday, February 6, 2009
Friday Night
Just recieved a call from Kathy. Cindy is getting the nausea feeling back w/ her sitting up. They are planning on doing the "blood patch" tomorrow morning. So, if everything goes as planned and she continues to improve, she should be released on Sunday sometime. They were going to take there time coming home and maybe stay the night somewhere half way.
Friday Update
Cindy talked w/ Dr Heffez about an hour ago at 3pm. He advised that when he was in surgery he could see that the shunt was blocked - it was just dripping spinal fluid. He did some repair work on the shunt and repositioned it and the shunt was flowing spinal fluid when he closed her up yesterday. This morning she had a CT scan and everything looked great and the shunt stayed in the correct position. She has been laying flat down on her back since the surgery. The Dr. is now going to start raising her up every hour to see if the nausea and spinal tap headache comes back. If those two symptoms come back this afternoon and into tonight, then tomorrow she will get the blood patch done. Otherwise, she will get released tomorrow from the hospital. If she gets the blood patch done tomorrow then she will get released on Sunday. She has 18 staples in her head again at the same location as the last surgery. She is feeling pain from the surgery but all the other symptoms of the migraines are gone again. Dr Heffez also advised that he would try to help us get referred to the NS in Omaha that work w/ the same shunts that Cindy has.
Thursday, February 5, 2009
Surgery
Cindy went into surgery at 1pm and the Dr. came and talked w/ her mother at 2:30pm. She should be getting back up to her room any minute now. The surgery went fine. The Dr. stated that the shunt was not working properly and now it should be working again. He never told Kathy what the issue with the shunt was. The Dr. feels that Cindy was also possibly dealing w/ "spinal tap headaches" also. She has had 3 spinal taps over the past month and he said that fluid could be leaking from the lower spine where the spinal taps where done. What they are thinking about doing is a "blood patch". That will seal up the area in the lower spine where the spinal taps were taken. They might be doing that tomorrow. They say that is a very quick and easy procedure to do. I am sure we will get more information tomorrow when the Dr. talks w/ Cindy.
Wednesday, February 4, 2009
Wednesday
Today was a rough day for Cindy. I think the travel day from yesterday caught up w/ her today. The Dr. has her laying flat in bed. He thinks that she still might be having some type of a spinal headache. That did help w/ her nausea today. The Dr is going to do surgery tomorrow afternoon. All the x-rays and scans came back and they all looked normal to the Dr. The only thing that they don't show is if the shunt is blocked and not draining. So, that is what he is going to check out w/ the surgery tomorrow.
Tuesday, February 3, 2009
Hospital
Cindy and her mother left this morning at 6am and they got to the hospital in Milwaukee at 2:30pm. They put her on a pain pump, which is helping alot. They are planning on doing some tests on Wednesday and possibly doing surgery on Thursday.
Monday, February 2, 2009
Leaving
I am going to stay with my parents tonight, then early we will stop at the hospital for shots of pain med then on to Milwaukee. My mom is taking me this time and Kyle will be home with the kids.
Please pray for traveling mercies, relief and answers. It is going to be a difficult trip.
Please pray for traveling mercies, relief and answers. It is going to be a difficult trip.
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