Progress

I am making progress. I able to extend the time b/w pills now and take 1 in the morning to start the day before moving to 2 later. I can also feel that the pain isn't as intense. I went to get groceries w/ Kyle for the first time last night and it was a little too much, but I felt that was quite an accomplishment considering that it is just 2 weeks ago today since my last surgery. It seems that the recovery is going so much better this time, and besides this being a much more minor surgery I also wonder if the difference is that I am not fighting the Intracranial Hypertension on top of it. Who knows, but I am thankful to be where I am and longing for days of normalcy.

The kids are still home from school and having them home has been such a wonderful thing for me. I was quite concerned, wondering how I would handle having the 4 home so soon after surgery, but it has been great. Even though I still have a long way to go, I feel like I have actually been able to be a mom to the kids more then I have for a long time. The Lord's timing is so good!

I have been contemplating the challenges of a chronic illness. It seems strange to call headaches an illness but now I guess I call call it IH &/or Chiari instead of headaches and seem more legitimate. I am praying that the Lord will use this in my life and that of my family to help others that struggle with chronic illnesses, particularly those that are isolated because of it. Isolation has been one of the most difficult things for me to deal with as I have journeyed through this. That being said, we are so thankful for many that have come along side us, praying for us, bringing meals, sending cards/emails and offering support to us in so many other ways. What blessings we have received.

Belated Merry Christmas

I think things are gradually improving although I have a lot of hills and valleys. I am grateful for the times that the pain meds are fully working because I feel more energy then I have for a long time and my pain is greatly reduced. Then as the pain med wears off I start slowing down and the pain can become fairly intense. I take 2 pills every three hours of the strongest pain med I think they have orally. I try to go down to 1 but it leaves me in quite a bit of pain yet. I try to stretch it out to 4 hours when I can also but don't make it so often. So I have a ways to go but I keep thinking that any day I should really make a change. People that see me when I am doing well think I look great and when people see me when the pain med is wearing off think the opposite.

We had some fun with my hair yesterday. I let all four of the kids take a turn cutting and shaving my hair then Tanner expertly finished off shaving it. I am close to bald but have a little stubble so hopefully it grows quickly. The shunt does stick out a little in the front right side of my head so it will have to be a little longer to actually hide it. I am hoping in 6 months it will be long enough to look "normal" though short. My head isn't as scary to the kids now either now that the staples are out. They are getting used to it but I am keeping it covered most of the time. Kyle and I are in a hair growing contest--he had me shave his to the same length as mine, so I guess we will see who can grow hair the fastest!

Settling in

It is so good to be home! I am glad we are reunited with our family and we are continuing to pray that the headaches are done for good!

I am doing pretty well overall. The surgical pain is still pretty strong in my head so I am taking as much pain medication as I can. The nausea is still bothering me as well so I am taking the anti-nausea meds regularly as well. The incision in my stomach isn't so bad unless I get bumped, which happens ocassionally with a 5 & 6 year old giving me hugs. :) The pain is so much more tolerable then the headaches though, and it is so nice that the pain meds actually help take a lot of the edge off. My eyes are clear and I can laugh without hurting badly--awesome! Most people can tell with my voice that I am doing much better.

My kids are quite bothered by my appearance. The staples in the front of my bald head are not impressive, so I am trying to keep it covered as much as I can when anyone is around. The staples come out on Wednesday morning, but right now I think I have enough staples in me to set off a metal detector at the airport. Hopefully my head will start looking better when the staples are out and my hair comes in a little more. I think I am going to shave the rest of my head soon so that it grows evenly. Maybe that will look better, too. :) I'm really not bothered with my appearance but I feel badly that it scares my kids.

Home

It was a long trip and a bit challenging on this aging lady, but we beat the storm. The snow is swirling round now and we are glad we are looking at it through the windows of our home instead of a hotel or hospital. I am needing to rest for the day and hopefully will start picking up again. The pain level increased from the traveling. We are thankful that the Lord brought us through many storms and we are now safely home.

Making a run for it

We had about a foot of snow here in Milwaukee last night. The roads are cleared a bit and we just decided to try to make a run for it and see how close we can get to home before the next storm comes through. We can't beat them because we are heading into them, but decided if we don't try now we probably won't be able to leave until Monday.

I am staying on my pain meds very regularly and that is keeping the pain much more tolerable then the headaches were. I am struggling a bit with nausea again but I will keep taking the drugs for that, too. Hopefully we can get home and then I can work on recovering there. We are both ready to get out of here! Please pray for safe travel--we could be seeing some tricky roads.
Hopefully next time I write will be from home! :) Then, happy healing and Merry Christmas--I am ready.

Let me introduce you. . .

to the new me! :) Despite the fact that I just had surgery on my brain twice in the last couple days, etc., I am feeling incredibly well. Quite exciting!

I am out of the hospital! Dr Heffez unexpectedly stopped in this afternoon and said that I could be released today if I wanted--and of course I did! He took the bandage off my head and he said things look good. He wasn't teasing when he said that it might be worth just shaving head. I told him that I didn't care, and I really don't. That being said, I might scare little kids. About 1/3 of my hair is gone. Basically the right side of my head is bald except a little bit on the back and back of the top. I have a u shaped incision stapled right above my hairline, another incision above my ear and then more behind my right ear. The incision on my stomach is right in the center below the ribcage. The two main incisions areabout 1 1/2" each and are stapled.

The Doctor suggested that we stay in the hotel until Saturday morning just to be sure that I continue feeling well,. If things are going well, we will leave for home Saturday morning, Lord willing. Sounds like we will be meeting a few snow storms!

We look forward to getting home and moving back into a normal life. I know that it will take a while and that even though I feel great I am still not going to pop back overnight. I really feel like I will start to improve now, though. I am very hopeful. So I will lay down a while now, then we are going to brave a store to find a few headcoverings. I certainly don't want to be scaring people! :)

Great Day

Cindy had her CT scan this morning and it came back good. The shunt was in the right position and it was working. It is amazing how fast Cindy's migraines will come and leave due to spinal fluid pressure in her head. Today was a very good day. She will be staying in the hospital until Friday if everything continues to go as planned. The Dr. advised that we would know very fast if the shunt will get plugged or if something goes wrong. Cindy will probably know within 24 hrs. and the pressure will cause the migraines to come back that fast. We were also advised that if the shunt needs to be adjusted we could contact the sales rep. from the shunt maker in our area and he should also be able to adjust the shunt if needed. So... we might not need a local NS.

Surgery Part 2

This afternoon at 4 Cindy went back into surgery to adjust the location of the shunt. This afternoon she was not feeling real good again. The Dr. came out to visit at 5:30 and said that everything went well. You just don't feel like you are playing on the same field when you talk w/ a brain surgeon. I guess I didn't listen real well when I attended brain surgery 101 and how to understand brain surgeons lingo. Anyway, Dr. Heffez felt very confident that he has the shunt working properly now. They will do another CT Scan tomorrow morning to check things out again. When they brought Cindy up to the room at 6:45 she was looking and feeling alot better. Dr. Heffez did advise that he really didn't think we need to find a local NS. He advised that once the shunt is working properly it can be 5 to 10 years w/ no problems. We are getting 3 to 5 inches of snow inches here tonight and they are talking a bigger storm coming on Thurs. night into Friday that might bring 8 to 14 inches of snow. I am sure Cindy will be in the hospital for another day or two yet.

Tuesday morning update

Good morning, this is Kathy. Kyle was called into the hospital earlier this morning to meet with the doctor. Cindy had a CT scan yesterday afternoon and it showed her brain had moved and blocked the shunt. She has to go back into surgery late afternoon and he will reposition her brain again, but as he says "just a simple procedure". He will go into the same incision to do it. He had to move her brain around a little to get the shunt in and it moved back and caused the blockage. The soreness in her head he said is caused by the surgery and also her stomach soreness is because they had to cut through muscle when the put the tube into her stomach. The doctor was very incouraged though that this will take care of her headaches. Please continue to keep them in your prayers especially this afternoon.

Surgery

This is Kyle ( I don't think I can refer to myself as the better half so.... we will go with the healthy half for now at least ). It was an early morning this morning. We got to the hospital at 6am. The hotel we are staying at is 6 miles, approximately 15 minutes to the hospital. The surgery started about 30 minutes late at around 8am. A nurse came to the waiting room to talk to me at around 10 am stating that everything went very well and that the dr would be out to speak w/ me. At 10:30 Dr Heffez came out and said that everything went very well. The shunt was put on the top of her head on the right side. We thought that is was going behind her ear. The nurse advised that they would have to shave some hair before the surgery. Cindy told them that they could shave her bald if it would get rid of her migraines (little did she know!!) Dr. Heffez said that she could get a wig or just shave the rest of her head. I told Cindy that I would shave my head also (might have to buy some more stocking caps for this winter) . They put the drainage tube to the back of her head, down the side of her neck, down her chest into her stomach. The shunt has 5 levels, 1 thru 5, 1 - letting the most fluid out and 5 - letting the least amount of fluid out. At this time she is at level 2. She was in the recovery room until noon and then brought up to her own room. She did not need to go to ICU. This afternoon they did a CT scan of her head to see how the shunt was located and sitting in her brain. She has been up out of bed twice this afternoon. She is just on liquids for the rest of the day. Dr. Heffez wants to make sure the shunt is programmed correctly before we leave. The nurse advised that on average a shunt patient will stay in the hospital for 3 days. We are trying to line up a NS Dr back in our area for checkups. We looking into 3 different offices: Sioux City, Sioux Falls and Omaha. We were advised today that the Dr's in Sioux City will not accept her as a patient. So now we are looking into Sx Falls and possilbly Omaha. Otherwise I guess we will become big Milwaukee Brewers and Milwaukee Buck fans. Cindy did tell me tonight that the ringing is no longer in her ears and that she does have head pain - but a different type of head pain (hopefully from the surgery). I do believe that many, many prayers have been answered.

We made it!

We are in Milewaukee and doing ok. The trip went well. The shots didn't make me sleep--I don't think my brain will shut off anymore without sleep meds--but made it tolerable. The last couple hours weren't quite as good but tolerable.

We had time to talk today about how many blessings we have experienced through this difficult journey. How do we say thank you to so many? So many have blessed us and we know the Lord has worked through many to minister to us. Very humbling.

After looking back at a few updates from the past, I have figured out that I have spent about 30 nights in the hospital in 2 years. Hopefully this stay won't add to many more days!

We hope to have a quiet day tomorrow. We are both very ready for the surgery to be take place.

A little better

Today isn't quite as bad. I also got a time released sleeping pill that let me sleep till 5:30 this morning which helped. The headache is pretty strong yet, though.

The surgery will now be at 7:30 am Monday. They told us that it would probably take 1 1/2 hours--a little longer then we thought. I will have an incision in my head above my ear (the tube runs through a ventricle of my brain) and a 2nd in my stomach where they tubing runs under my skin and they insert it into my stomach surgically where it will drain. The technical name is ventricu-peritoneal shunt surgery, vp shunt for short.

Thank you for your kind words and support during this difficult journey in our lives. Psalm 121 is one of my favorite and a comfort at this time. Someone read it to me this morning and it is reassuring to know that God is in control and has a plan through all this.

Rough day

Today has been much worse. The headache is very strong, nausea pretty bad and sleeping little even w/ meds. I'm praying it improves before travel. All tests have come back normal so unless I get sick the surgery will be monday morning around 9:30.

Someone will keep blog updated next week during & after surgery. The Lord is good and will see us through.

I must admit that I am afraid. Not of the surgery, recovery or pain. I am afraid that the headaches aren't going to be done after the surgery. Everything seems to point to this and we are moving forward because we don't know what else to do. I'm not sure how much endurance I will have after this if the headaches continue.

Things are coming together. We have made plans for the kids and appreciate the help people are giving as we prepare to leave. We plan to leave Saturday morning. I will get a few shots at the hospital to help control the pain while we travel. So far I have been cleared for surgery. I have gotten a few tests back from before and they are normal. Should hear about the heart test and others soon.

Our concern now is that I not develop the flu or a cold which would prevent the surgery. We are also hoping that my doctor here will be able to find a neurosurgeon in this area that will be willing to reprogram my shunt if needed. We really need to have ns around here that will do that but we are concerned. Many specialists are not willing to take me on now because of my medical history and because I am considered a complex, dificult case.

We continue to covet your prayers.

Another Sunday passing

Sometimes it seems as if time is not moving but it is always hard for me to believe that another Sunday is here and nearly gone.

I have my pre-operative appointment and heart test scheduled for tomorrow morning. Hopefully I will be healthy enough for another surgery, and I really hope this is the last one!

The headaches are gradually getting stronger. I went to the kids' orchestra concert yesterday and by last night it was pretty strong. Today I decided I better keep it quiet and low key and I am doing a little better.

Someone asked me about the issues that come with the shunt that I mentioned before. It sounds like I might have some problems with balance and dizziness, especially when getting up or down. I will need to learn not to pop out of my chair, but I can't do that now, either, so that isn't much of a change. There is a risk of infection but my surgeon said that he hasn't ever had an infection with a shunt he has placed. I will probably need some follow ups and it sounds like the tubing can become plugged. It also sounds like some or all of it will need to be replaced every so often--maybe every 5-10 years or so. Nothing major compared to what I am dealing with now.

I just read on one of the blogs I have listed in my profile that a family adopting a little girl from Guatemala was preparing for the pickup trip this month and were just notified that she died. Oh, my heart just breaks for them. It makes my problems seem pretty small. Please remember this family in your prayers.

doctor bio

I really have nothing new today, but I thought that I would paste in a bio that I found of my neurosurgeon for those that are interested. A few have expressed concern about doing a second surgery with my brain and have wondered about my doctor. He is a very impressive surgeon, but kind and compassionate as well. We are so thankful that he is my doctor! I just found this bio on the internet from 2006.

Dan S. Heffez, MD is a neurosurgeon in practice at the Milwaukee Neurological Institute in Milwaukee, Wisconsin. Prior to relocating to Milwaukee, he was Associate Professor of Neurosurgery, Rush Presbyterian St. Luke’s Medical College, Associate Neurosurgeon Rush Presbyterian St. Luke’s Medical Center and director of the Chicago Institute of Neurosurgery and Neuroresearch Neurovascular Surgery Center. He came to the Institute in 1990 from the Johns Hopkins School of Medicine, Baltimore, Maryland, where he served as an assistant professor of neurosurgery and honed his expertise in the treatment of cerebrovascular disorders. Prior to his work at Johns Hopkins, Dr. Heffez held a Fogarty Research Fellowship at the National Institute of Neurological and Communicative Disorders and Stroke.
The recipient of many honors and awards including the prestigious Johns Hopkins School of Medicine Clinician Scientist Award, Dr. Heffez is highly regarded for his surgical skill as well as his research efforts to advance the understanding and treatment of Chiari malformation, cervical myelopathy and cerebral vasospasm. Experimental work initiated and performed by Dr. Heffez was the impetus for developing human fetal surgery for the correction of certain forms of spina bifida. Since 1994 he has been exploring the link between cervical myelopathy and the fibromyalgia syndrome.
Dr. Heffez holds memberships in numerous professional organizations including the American Association of neurological Surgeons, Cerebrovascular and Pediatric sections; Congress of Neurological Surgeons; and Royal College of Physicians and Surgeons of Canada.

Eventful day yesterday

We are thankful for answered prayer regarding Tara's ears. They have completely cleared, which was surprising to the doctor. So she is in the clear for another 6 months. :)

I left a message for Dr Heffez and he called me back about an hour later. He reviewed everything and said that he feels that the shunt is going to be the answer. He didn't really even question the pressure number of the last tap. I have read that the numbers can vary wildly depending on the time of day and a variety of factors, but it didn't alarm him. I have a surgery scheduled to place the shunt for the morning of December 15. It is a VP shunt with a programmable valve. Once it is placed, the valve can be programmed with a computer or something held next to my head to adjust the pressure levels as needed. He anticipates that I will be in the hospital for 3 days and asked that we plan to be in Milwaukee for a total of a week so that I can see if the pressure level that he sets it at is comfortable.

This is really an answer to prayer. Our biggest concern now is that this be the end of this journey for us. I can deal with the inconveniences and issues that a shunt will bring but we are really praying that this will resolve the headaches and that life can start becoming more normal again. We have thought that we had the answer a few times already so this time we are a little hesitant to become to excited until we actually see the results.
The headache was totally gone on Wednesday and started coming back a little Thursday. I am feeling it more today and I would guess that it will just keep getting stronger. I am noticing that Wednesday I could do more but Thursday and even today physical exertion of any type again seems to make the symptoms worse pretty quickly. It is hard to figure out ways to get stronger when I can do so little. Kyle buzzed me around Walmart in a wheelchair this morning, though, and I enjoyed that!

I am still having the tests done that I mentioned yesterday just in case something shows up but since every other test has come back normal we anticipate that will be the same with these. Please continue to pray for strength for me because I am so weak. Also please pray for Kyle and the kids as we once again go through some challenging times. Thank you so much!

fyi

Tara looked good yesterday and I have hope that her tubes won't have to come out. We find that out today.

The doctor decided to order a few more tests on me just to make sure we aren't missing anything. He said they are grasping at straws but thought we would do a few things that either haven't been done or not done in a couple years. They will do quite a few tests with blood and are also scheduling an ultrasound of my heart. My blood pressure has always been unusually low so they want to make sure there isn't something going on there that has been missed. (my top # is usually in the upper 80's to lower/mid 90's--but I don't remember the bottom. Evidently a couple times when I was in bad shape the top dropped to about 70) My impression is that a shunt isn't out of the question since I have had relief from the headaches again after the spinal tap, but the ns would have to determine that.

I will leave a message for the neurosurgeon today but I am assuming that I won't hear back right away. We'll see what he has to say.

It was good to have a relatively pain free day yesterday. I am desperately anxious for answers and normalicy in our lives. Please pray for us!

Strange but true

Well, it makes no sense but I am headache free today. If this is a mental thing I should be hurting today b/c logically speaking it shouldn't have helped to have the spinal tap. I really don't know what is going on but will call the neurosurgeon tomorrow. I'm doing a few small things out of the house today just to get a breath of fresh air and enjoy being pain free as long as it lasts. I am incredibly weak but it sure feels good not to hurt! My two big things to do are to bring Tara to the general doctor today b/c she has had a bad cough for about a month which is interrupting her sleep. Then tomorrow we see the ENT about her ear tubes. If they need to come out I hope they can do it within a few days in hopes that I will feel well enough to take care of her adequately.

We are discouraged and confused about what is happening but hoping that this means something. Clear cut answers would be so much easier! Thank you for your prayers, messages and emails of support--we appreciate you!

disappointment

Not sure what to write, but I know a few are wondering what happened today. The spinal tap ended up being a little more then uncomfortable--they kept hitting nerves & finally stopped for a while then tried again more successfully.

The results were not what we expected. The reading was 16 and normal is under 20. Not sure what this means at this point, but we had so hoped that this is the answer. Maybe it still will be but I need to do more research. I am supposed to call the neuro on Thursday with the results & how I am feeling. They did pull out two vials of fluid to see what happens and I am feeling a little better now. We'll see what happens the next few days.

We are disappointed and discouraged. I haven't been answering email/phone today--just need some time. Please pray for us.

Quick note

The spinal tap is on for tomorrow and is scheduled for 10:15. Please pray that things go well, that I can keep my mind in other places :) and that we will have some answers to many questions.

Thanks!

A sabbath blessing to you

I haven't written for a few days. Thursday and Friday the pain wasn't as strong then Saturday it was strong again and I'm not doing so great today either. It was a week of Thanksgiving and I know that I have much to be thankful for. At the same time, it is sad to miss Thanksgiving dinner with the family (Kyle & kids went to my in-laws) and not being able to participate in some of the traditions that we normally have at this time of the year. I missed a wedding last night and today my sister Renae had baby Jenna baptised. I missed it as well as the baptism of her last child, Alexa a little over a year ago. I want to be able to look at the blessings and gifts that I have been given but I am sad about the things I am missing and the memories that we aren't making with the kids. There are several programs the kids are in coming up that I so hope that I can attend!

In my studying for answers about Intracranial Hypertension (IH), I found that any type of physical exertion can cause the headaches to get much worse. That is actually a relief to me! I have been able to do so little and the smallest tasks leave me exhausted. When I was doing physical therapy it seemed as if I could do a small amount of things but if I pushed at all I would walk out with a nauseating headache that would last. The pt, with a kind smile, called my "exercises" a warm-up for the warm-up. It became very frustrating but now perhaps I have an explanation as to why I have been able to do so little. You do start playing mind games, wondering if you are truly just lazy and mentally hiding behind this or something. So I was relieved to hear that it was normal for this condition and not laziness on my part. I have normally always been the type of person that is on the go, always busy and rarely sitting down to just watch tv. This has been a dramatic change to my life in many ways, including that I can't do much but sit or lay all day.

The spinal tap, or lumbar puncture as the doctors call it, is scheduled for Tuesday. However, that is exactly 4 weeks to the day that I had the last one done. The neuro wanted me to have it 30 days later. I'm not sure if 2 days is a big deal but we are concerned that perhaps insurance will require being on the medication for 30 days without success before any other procedures can be performed. Of course, I am jumping to conclusions but just in case we are going to check to see if this is an issue. I desperately want to have it done right away but we may need to delay it for a couple days.

I pray that each of you will have a blessed Lords Day. The Lord has given Kyle and I the grace to endure this and He provides for us lovingly. A few have asked how I am hanging on and I have to say that I am not on my own. Some days are tough and some are not as bad, but I know that God has a plan for us and He is fully in control. Clinging to God's promises does not mean that I am a great Christian--I am a sinner that God has extended His grace to. Bible memorization is a wonderful thing that I am terrible at, but different verses run through my mind that are comforting. Right now I keep thinking about the verse, "For I know the plans that I have for you, declares the Lord, plans to prosper you and not to harm you, to give you a future and a hope. (Jeremiah 29:11) God is good, all the time.

Improved? Maybe. .

I think my attitude has improved a bit even if my health has not. The spinal tap is scheduled for Tuesday around noon. I look forward to having it done and hopefully I will have some time of feeling pretty good again. I dread the actual procedure. It actually isn't all that painful--probably more uncomfortable than anthing. I just have a hard time not thinking about what they are doing to me as I feel them poking around in my spine. I would like to just shut my thoughts off.

I will readily admit that I have guessed wrong before, but it really seems that the pressure must be too high again. I am regularly taking the pain meds (which I don't do unless I have to b/c I seem to develop a tolerance to them quickly), only sleeping if I taking sleeping pills, my neck & shoulder are starting to bother me more and more again and so on. All the same things that I had before the last spinal tap. Maybe they can take out a little more fluid this time and feeling good will last longer? We will see--the other side of that is if there isn't enough fluid it causes another type of headache.

The shunt is sounding like a better option to me now, too. I guess I just had to feel bad enough a little longer before I remembered that about any procedure is fine as long as it takes away the pain.

Thanks for your encouraging words on this blog, by email and for the calls. I can't tell you how much that encourages me. On the days that I am feeling pretty down I enjoy looking at the emails and notes (even if it only says that you are reading the blog!) to remind myself that there are people out there that care and I am not truly alone! Thank you!

It's a Monday

I have to admit that I am discouraged. For some reason I thought that either the trip to Ames would go a little better or that if it didn't I would recover fairly quickly. It seems that the headaches are stronger and I am more sensitive to noise. Sometimes it seems like it will never end. I wasn't able to attend church yesterday. Out of determination I decided to go to the office this morning which is quiet but I didn't do so well there. Two customers told me that I looked awful, kindly of course, which means that I am not fooling anyone. I am so isolated and feel pretty lonely some days. I don't remember really anything of the holidays last year beyond what my kids have told me and I had so hoped that this year would be different.

I am still working on scheduling the spinal tap for next week, hopefully Tuesday or Wednesday. It is hard to know what to hope for. Do I hope that the pressure is high so that I get a shunt in hopes that it will alleviate all or most of the symptoms? Do I really want them drilling a hole in my head, running a tube through my brain and another hole in my stomach to drain into? On the other hand, in February they did more then put in just a little hole and at that point I didn't really care. (Sorry to be so graphic!) Yes, I probably do if all this goes away. But what if it doesn't? On the other hand, what if the level is now in the normal range with the Diamox (med). I can't live like this!

It is a good that that God is good and on His throne. He knows all things and has a plan for my life and that of my family. Right now I feel like I am beyond what I can handle but He will take care of that, too.

We're back

The concert was beautiful in Ames! I am so glad that I made it through the concert. I am feeling miserable now--the travel pretty much did me in. My biggest mistake was that I forgot my Zofran (anti-nausea med) so it created a vicious circle of feeling sick, not eating, then not being able to take my pain meds which made the circle keep getting stronger. The headaches were strong enough last night that I really didn't sleep much. For some reason if I do drift off my body will startle awake again. The trip home we finally found saltine crackers which I nibbled and kept down and gradually started the pain meds. They at least take the edge off the pain. Getting home at noon and laying in bed without moving the rest of the day was a relief. Still not feeling all that well but hoping another day or two of no movement might help. It has been a rough two days but worth it to see Tanner sing. Thank you for your prayers!
Cindy

Nothing new today

We leave to Tanner's OPUS event tomorrow. Please pray that this goes well for him and that I will be able to handle the trip and event. I am concerned about the traveling and the event noise, particularly before it starts. Earplugs work well but they don't block enough when it is pretty noisy.

I just found out about two families (thru an adoption email system) that each have have a child they adopted from Guatemala, both diagnosed with leukemia. One little girl is 14 months and the other little girl is 4. Both families are Christian families and they both have blogsites. As many know, Guatemalan adoption is dear to my heart because our youngest two children were also adopted from Guatemala. Please pray for these families! If you are interested in reading a little about them, open my profile near the bottom and you will see blogsites I am following. Just click on the top two. Thank you for your prayers!

News to note

It was an interesting day. This morning the neurologist in Sioux City that I mentioned might be a slight possibility called. I wasn't sure if I was comfortable with him until determining his actual experience with Intracranial Hypertension (IH). Well, that isn't an issue. He isn't willing to take me on as a patient, again because of my medical history. I must really look like a hopeless case to these doctors!

Tonight my neurosurgeon from Milwaukee called! He has called me personally several times now since becoming his patient. It took some time to hear back but it was well worth waiting for and he was kind and gracious on the phone tonight. My first question was if he would want to continue my care. He felt that if the med works for me I really needed to have a neurologist closer to monitor things--not practical to keep driving to Milwaukee. I explained that I am just not recovering like I feel that I should. I still have headaches everyday which are not improving, my hearing is still very sensitive and I am just not coming out of it like I think I should be. He said that it may take up to a month for the med to reduce or eliminate the symptoms. He talked more about the possibility that the intracranial pressure may still be too high and not controlled by the med. That would also explain why I still have all the same symptoms but just at a reduced level. I need to have another spinal tap done the first week of December to see how things are going. He suggested that if the pressure is still too high that I will need to have a shunt. He places it in the brain and it drains into the stomach. I have to laugh--I asked him if it was a major procedure and he said, "oh, no, it is minor." So I said, "same day surgery?" He laughed at me and said, "No, not same day. You would probably be in the hospital at least a couple days." I think my definition for minor surgery and a neurosurgeons definition of minor surgery is hugely different!

To top the day off , we ended up bringing Tara in to the Ear, Nose and Throat doctor b/c she has been complaining of one ear hurting and she failed her hearing test at school this week. She had "permanent" tubes put in last November and they are both completely blocked and appear that they probably will need to be removed already. (Her previous set of "temporary" tubes only lasted a 3-4 months and they both popped out on their own.) She has to have drops in her ears for 2 weeks to see if it makes a difference and if not she will have a MINOR surgery to remove them in 2 or 3 weeks. She had her toncils and adenoids out when these tubes were put in so we are praying that if the tubes have to come out that the constant ear infections won't start again.

It was a doctor day today, but it seems like we have learned a few things. I have learned that if you see too many specialists, other doctors may be afraid of you. That brain shunts are minor procedures that sound major to me! That permanent tubes may not last so long. Finally, only by God's grace can we continue on!

Baby steps

I was able to attend our worship service yesterday morning. It was an extra special day--it marked our first day of being formally organized as a church. I had a hard time holding back the tears a few times as I think of where we we started and how the Lord has blessed this church, both numerically and in strengthening faith. God is so good!

I have good and not such great news about my appointment with the neurologist I mentioned earlier. Good--I have an appointment. Not so great--the first available appointment is January 13. Maybe things will be fine but if I take a turn for the worse I'm not sure what we will do. I feel rather "fragile" so just not sure how things will progress.

Today marked a small step for me. I went to the office for a little while this morning. Time seems to just be floating past me but I had decided earlier last week that today I would start going in and start doing what I can and building from there.

I have one big goal. Tanner, our oldest, qualified for Opus. I don't know all the details but I think around 3000 tried out for about 700 positions in this state honors choir and he qualified this year. We are so proud of him! I am pretty determined to go. Our plan is to drive down (3 hours) and attend the concert. We will stay overnight so I can recover a bit then drive home in the morning. Most will do this in a day but we hope that I can make the trip and the concert. Please pray for us on Thursday that I will have the strength to make it through and still be able to enjoy the concert!

We have been so blessed and sometimes I have to remind myself of how blessed we are. My sister works for State Farm and a co-worker was diagnosed with cancer 2 1/2 weeks ago. Tim had been perfectly healthy up until that time and he passed away on Sunday at age 43. He has three young children. Please pray for his family! The Lord allows each of us a cross to carry and gives us the grace that we need to to carry it. So many are struggling so much more then we are. We are blessed that everyone else in our family is healthy and doing well and that I am making progress. Thank you to each reader for your prayers and expressions of concern. They mean so much to me!

The weekend

I had a pretty good evening yesterday and woke up and felt pretty good this morning. I went to Tanner & Kylie's cello/violin recital with earplugs and dropped right after. After a long nap I tried for the first time to play a game with the three oldest kids tonight and they had to help me through it, and it is a kids game. But I guess a week ago I wouldn't have been able to do that. Overall, mentally I think I am coming along in the morning but start to fade after that. I would imagine that will continue improving.

I have been searching for doctors that have a focus on pseudotumor cerebri (intercranial hypertension, etc). There is a slight possibility of one in Sioux City but I am guessing he doesn't have much experience in it. His nurse is supposed to call me Monday. I have continued my internet searching each morning and last night was a little discouraged--didn't find any in Sioux Falls, Omaha, or Des Moines. Kyle told me to try Minneapolis so I looked last night and found a large neurology clinic with about 40 neurologists. There was one that listed this disease as a particular interest along with migraine, which is probably a good combination since I was treated for that for a long time. I will call them Monday to see what I can find and do a little more searching to see if there is any info about him positive or negative. If anyone that reads this sees something on Dr Jonathan Calkwood of Minneapolis clinic of Neurology please let me know!

My neurosurgeon said a week ago that 25% of his chiari patients have also been diagnosed with Intercranial Hypertension (IH). I am signing up for an IH registry and one of the questions was if I have Arnolds Chiari Malformation. Interesting! I don't remember if I wrote this before but my opening pressure with the spinal tap was 41. I have found that normal is under 20. Mine was done improperly so the 41 may not be accurate but I have wondered if that could scew the result to double the normal? Who knows, but I hope to get some answers.

By the way, did you see I added a picture? I haven't ever liked pictures of myself but especially since the headaches started. So I found this picture from shortly before it started. Maybe someday I will be able to smile again without a hint of pain. That would be awesome! :)

Another week is coming to a close and I am feeling a little gloomy. Maybe it is the weather--overcast and rainy. The last couple days I haven't been feeling as well. The headaches are a little stronger again, especially in the evening with all the kids home. I told them that someday we are going to have a yelling contest and everyone can yell as loud as they can while I am yelling with them to make up for all of this. I hope that day comes.

I still haven't heard from my neurosurgeon. I am searching for a doctor that has experience with this intracranial hypertension but it is a little more challenging in a rural area to find experts in fields that are rather unusual.

Every morning I try to spend some time researching and that is a bit discouraging as well. First, is this truly what I have? I don't fit the "classic" description, which is probably why I wasn't tested before. I am not overweight, don't have whooshing sounds in my ears (but they ring pretty loudly), and have not had visual problems. What if this isn't it? Second, if this is it, it is not all that encouraging. Many respond initially to the med but it loses its effectiveness for many over time, and I have experienced that with countless drugs. Do I get a shunt in my brain? But they seem to cause problems--infections, plugging up, etc. Some use both the med & shunt and still have little relief from the symptoms long term. Little research is being done because it is relatively rare. It is called a disease with lifelong issues. I remind myself daily to take this a day at a time, though.

Relatively speaking, I am doing better. I have driven a few times this week, went to church last Sunday once (with earplugs), went out for lunch once with Kyle and can tell that I am getting stronger. I have headaches which worsen as the day goes by but they are not nearly as severe as they were before. The ringing in my ears can become pretty loud but I still hear all the noise. Two weeks ago this would have seemed like the cats meow. I need to remember that.

Another day

About the same again today. I usually sleep from about 1:30 until the kids come home at 3:30, so I will be heading there shortly. I haven't heard from the doctor yet. I think he is great but sometimes not so great at communication. I guess brain surgeons have that right.

I have been thinking that it has been just about 2 1/2 years since headaches became a problem for me. There have been few days in that 2 1/2 years that I have been totally headache free, some days that were breathtakingly bad and many in various stages of tolerable. I have to laugh at myself. In looking back at a form that I completed about a year ago I indicated that I had headaches but was otherwise very healthy. I don't think to many people would look at me and say that I am very or even kind of healthy. Pride, I guess. Last year I was so embarrassed to have my sisters put me in a wheelchair and take me through Kohls to get a few things. Now I am thinking that will be a great idea if I can get strong enough to do that. How perspectives can change.

Many, many people have helped us along the way in countless ways. I know that I haven't thanked many of them, which I feel badly about. Thanks to all of you! I have to mention one other person that is amazing--my dad. A few weeks ago my mom was with Renae & her brand new baby and I had a major turn for the worse. Probably one of my worst times, I would guess. I stayed with my dad because it was quiet and near the hospital. He pampered me, helped me walk when I couldn't, got up during the night several times every night I was there to make sure that I was doing ok and took me to the hospital at all times of the day or night when I needed pain meds. He bought me Ensure b/c I was dropping weight quickly, Gatoraid because I was dehydrated, a heating pad because my neck was hurting so bad and even Pepsi because he knew that I normally love to have one a day. One night when he checked on me and found me hallucinating he stayed with me and talked me through it. Later I discovered that he then slept on the couch outside my room so that he would be sure to hear me if I started moving around or calling. A fathers love is pretty amazing but then I have pretty amazing parents.

snowy day

I think I am getting a little stronger. I had a great nap today and felt pretty good after I woke up. The headaches seem to be a little bit stronger, although very tolerable. I am having some problems with nausea and it hurts to lay on the right side of my head--but that isn't new. I just thought some of these things would go away. The nausea is significantly better than it had been before. I was taking Zofran, a nausea med, pretty regularly for a while so that I could eat. Now I typically am not taking it but am just working through it a bit. Hopefully these things will pass. I am expecting a call from my dr in Milwaukee and will ask him several questions about some of these things.

The spinal fluid testing came back normal. We were expecting that, but it is still good news.

A few have asked about whether I should have had the surgery for chiari, or some have referred to it as my brain surgery. I don't have any regrets for a few reasons. First, I had several symptoms of chiari besides the headaches. Two were becoming a problem--swallowing and my fingers were totally dead from about halfway past the last knuckle on. The swallowing was preventing me from eating much meat at all and I had to drink something with every bite I took to get it down. I had a few incidents of choking that scared me. Both of those issues are resolved. Also, if I hadn't had chiari surgery I wouldn't have become a patient of Dr Heffez who ultimately determined that intracranial hypertension is probably my problem. So no regrets. I am glad that it is done. It was a difficult surgery to recover from for me, but in the long run well worth it.

The Lord's Day

It is the Lord's Day again, and I am so blessed to have been able to go to church this morning. I remember last Sunday wondering how long it may be before I could attend. I may have pushed it a bit today, but I just walked in right before starting and walked out just before it was done. I was pretty whipped after that, but it was very well worth it. The Lord has really answered our prayers and I am so thankful to be where I am right now especially when I think of how poorly I was doing last week.

Someone asked about the side effects of the medications and if that is causing some of my problems now. Some of the side effects are headaches, dizziness, tingling hands and feet, ringing in the ears and sleepiness. Yes, some of the things I am trying to get rid of are actually being brought back by the drug, but much more tolerable. Kyle and I think that my exhaustion and memory problems are probably more related to the trauma to my brain and the need for it just to recover. If we had discovered this a few months ago it probably would have been much easier. Kyle has said many times that I looked like death and I can say that I felt like death wasn't so far away. In some of my more lucid moments I really hoped that the Lord would take me home. But, He obviously has more plans for me. I don't think that I was sleeping well, either. Kyle said that he is sleeping much better because I don't moan all night. So I think time will resolve some of these things.

I guess this has been a difficult path to follow and not one that I would have chosen. However, God is good and has been answering our prayers. We have been reminding our kids and ourselves that this is such a clear example of many people praying on my behalf and God listening and answering those prayers. Thank you for praying for me! I have struggled with not really being able to be a mom to my kids for a good part of the last 2 1/2 years, but perhaps the Lord is using this to teach and mold them more then I could have done as an active mom. God is good, all the time.

Today

I visited an eye doctor today to make sure that my optic nerve is ok. Everything looked fine. We went late morning and I slept the entire afternoon. I can't seem to sleep enough, but that will change as time goes by, I would think.

Our kids are staying home this weekend--the first time I have been home with them for a weekend for as long as I can remember. That isn't saying much, though. My memory is nearly non-existent it seems. So if you tell me something, you might want to write it down to make sure I remember. :) Hopefully it goes ok. I still seem sensitive to noise--not as bad as I was but it is still a problem. Maybe Kyle will have to take them away for a while if it gets to be to much, but we will see.

Hopefully I will start seeing some big improvements. I have been a little disappointed that I am moving forward so slowly. But Kyle reminds me that it has taken a couple years to get to the point that I am today so it may just take some time to work my way back out. Thank goodness for Kyle!

details

I am not moving around much yet. It seems that all I am doing is sleeping. Perhaps it will take a bit to get going again.

For those that like details, it looks like what I have is called either Idiopathic Intracranial Hypertension or it is also called Pseudotumor Cerebri. It is said to cause unbearable headaches, which I can attest to, and permanent visual loss or blindness which I thankfully have not experienced. Following is a link for those really interested in knowing more about it: http://www.iih.org.uk/iih.php .

We are so thankful for Dr Dan Heffez, who saved my life. Our doctors and nurses in Rock Valley have also been fantastic. Thanks, too, to so many that have helped and encouraged us through this journey. It might take a while to figure out if the medication will work and to get on top of things, but it is a relief knowing what it most likely is and that there are treatments available. We don't always understand the Lords plan, but we know that He will use this to His glory. We are so thankful that He led us to this doctor and gave him the wisdom to find the problem!

still optimistic

I am still feeling much better today. After being up for about 1 1/2 hours this morning I started getting sick to my stomach and a "mild" headache so the local doc advised that I stay down for 24 hours in hopes of the puncture from the spinal tap healing. But I am so much better then I have been for quite a while! I feel weak and suspect that it is going to take some time to get on top of things again and the last couple years of drained me of most of my strength. That will come, though. It seems more and more likely that the increased cranial pressure has been the problem.

The Lords timing is good. I got news today that Mayo clinic declined seeing me. They reviewed my records and evidently decided that I was a hopeless case. It seems that they don't want there success ratio's to be affected and since I have been through all the drugs, etc., and had not found relief they weren't going to waste their time. That would have been a blow yesterday because we had decided they would be our next choice to try if the mri's didn't show anything. (We hadn't heard about the spinal tap yet).

I just started the new meds so we will pray that they will effectively control the spinal fluid pressure and perhaps life will gradually be returned to me and my family.

Extra tidbit

I was asked why the spinal tap stopped the headache. When they did the spinal tap they removed 3 vials of spinal fluid to test for abnormalities. This reduced the amount of spinal fluid around my brain and in my spinal cord, which reduced the pressure. If this is indeed the problem, too much spinal fluid was causing inter-cranial pressure and causing the headaches, etc. The medication prescribed will decrease the production of spinal fluid. Since we don't have a true reading the question will be if the pressure is too high for the medication to control. It sounds likely that it will control it but a shunt was mentioned if it can't be controlled.

I am still feeling good--I am almost giddy! :)

Cautiously Optimistic!

We may have an answer to prayer!

I had a terrible night last night. The pain had increased a lot and even though I took a pain pill and sleeping pill, I slept little because of the pain intensity. I woke up this morning in a lot of pain as well. We called the doctor first thing for an appointment to discuss our options and do the blood draw. He also gave me a mega dose of a pain med by shot.

We were able to do the spinal tap this afternoon already. It was uncomfortable but not so bad. About an hour after the procedure was done my headache disappeared! Yes--it is gone! The pain is gone, the pressure is gone and even the ringing in my ears has stopped.

We left a message for the surgeon with the pressure that was measured. Unfortunately the anesthesiologist did it incorrectly. I was supposed to lay down and she had me sit up which gives an inaccurate reading. But, the reading that I had was substantially higher then normal according to the surgeon! He is optimistic. He is putting me on the medication to control the production of spinal fluid and I have to call him in 1 week. There is a possibility that I will have to repeat the test to get the accurate reading. If this is indeed the problem, the medication should control it or worse case would be needing a shunt put in.

I am waiting for the blood test result and they are testing the spinal fluid for abnormalities as well.

Please pray that this is the problem and thank the Lord for answering our prayers! We are so hopeful! :)

Bad news

The doctor called at 5:30 today and he can't find anything that is causing the neurological abnormalities--and my headaches. He asked me to take a blood test to check the level of a certain vitamin--I have had many and so far nothing has shown up but we will do it again. Also wants a spinal tap done to check the pressure of the spinal fluid. We will pursue that as well.

The headache has increased in intensity today.

A little stronger

The headache increased in intensity again later yesterday and has been stronger again today. I am thankful for the pain med that is still working to take off the worst.

Our youngest two children stayed at Karleen's house this weekend and Kyle will pick them up after church tonight. I really miss them but it does help a lot with keeping the noise down and therefore the headache somewhat better controlled. The same things make it worse quickly--noise and movement. Riley, 6 and Tara, 5 naturally are full of noise and movement which means they are healthy and happy but it is challenging for me.

The older two went last weekend, too, but stayed this weekend b/c of a piano recital and orchestra practice. Thanks, Karleen! Renae did some major shopping for me for winter things for the kids this week. Renae has been my professional shopper the last couple of years and has dressed the kids well. Thanks, Renae!

Today is the Sabbath and I found comfort today in II Corinthians 1. I really miss being able to go to church but I know God has a plan. I do believe despite the ups and downs that my faith has been strengthened through these challenges that we have had the last couple years.

Better days

Yesterday and today have been a little milder. I even skipped pain meds this morning.

I am thankful for:
-Loving husband that has taken care of me through some tough times
-That I am the one with the health issues and not my kids
-Loving family that have helped so much--shopping, meals & treats, childcare, prayers, encouragement, runs to the hospital for meds, and the list goes on
-Thankful for my friends and church family that pray, encourage me, bring meals & treats, and the list goes on
-Milder days
-Our ladies at the office diligently taking care of things--and doing a great job!
-Mild weather :)
-Feeling well enough to go to the office for lunch yesterday-great to get out!
-Most of all, God's grace carrying our family through this

I know I am forgetting many things but thanks to all for everything!

No news from the Dr today

So we wait until next week.

I did find something in the set up that allows anyone to comment without having to start a google account. I love to hear from people, either through email or the comments. Thanks for your encouragement.

No update yet. Just thoughts

I feel like I am on trial and waiting for the verdict to come in. Either I will be pardoned or give a life sentence. I hope the jury comes in soon. . .

Someone asked me what I look forward to when I am better. I miss. . .
-Going to church with my family
-Playing with my kids and attending their activities
-Having a date with Kyle
-Taking long walks in the fall/summer/spring weather
-Talking with friends and family, laughing and enjoying life
-Inviting people over and enjoying fellowship with others
-Teaching Tara how to ride bike
-Playing catch with Riley
-Going on a bike ride with the kids
-Going to work and helping people at the office
-Watching a movie with the family with the volume up high enough for everyone to hear
-Going to Bible study, parties and get togethers
-Being able to think clearly
-Going shopping with my sisters
-Listening to Tanner & Kylie play piano or violin & cello without muffling them w/ earplugs and/or closed doors
-Going out for supper in a restaurant and not thinking about the noise
-Just being a good mom and wife

It has been so long. . .

MRI received

Good news! Dr Heffez has the new mri in his office according to Fedex. Now we will pray that he will have time to look at them soon and determine what is wrong.

I try not to think about it, but if he doesn't figure it out I am not sure what we will do. . . If he can't help me, please pray that the Lord will open another door for us to pursue. The doctor seemed pretty confident when we saw him that he had a good idea what the problem is but it is a little unnerving as things continue to get worse not knowing for sure if he will find it. We know, though, that the Lord led us to this doctor and He will continue to provide His grace to us as we deal with this.

The MRI is done!

Brett, my wonderful brother-in-law-took me in to Mercy hospital this morning at 6:00 to check in for my mri. I must look pretty bad because they looked at me and really bustled to get me checked in, had the iv put in (on the first try!) and the anesthesiologist came in quickly after. He also must have thought I didn't look very good because he told the nurses to get me ready right away and we would just get it done. I was scheduled to actually have it done at 8:00 but I think it was done much earlier. He gave me some drugs and I don't remember anything again until after the mri was done. He also let me take one of my new pain pills right before he gave me his drugs so that I would wake up with that. The combination of his drugs and mine made me feel less pain then I have for a while, which was quite a relief. So the mri went well, which was a huge answer to our prayers. We were concerned that even with the sedation that my head would be sensitive to the noise and I would wake up in pain.

Brett and Karleen took very good care of me last night. Sometimes after I travel a little now, my neck muscles begin spasming which makes my neck hurt and my headache worse. They got me a heating pad and then later helped me get to bed. Karleen checked on me a few times through the night. Sometimes when I start a new pain medication I can have side effects, especially at night. I can become disoriented and confused or have problems sleeping or ocassionally halucinations. This time I just had a hard time sleeping so I drifted in and out. I take unisom at night anyways because I can't sleep well with the pain. So I am hoping that perhaps tonight my body will be more accustomed to this drug and allow me to sleep.

Normally I haven't taken pain medication regularly but just when the pain has become intolerable. Late yesterday morning it suddenly became very strong so the doctor prescribed something I haven't had before. So far I have been taking as often as it is allowing because the pain is pretty strong. It isn't taking it away but it is making it tolerable.

Kyle sent the mri to Dr Heffez, the neurosurgeon, overnight so he will have it tomorrow. He does surgery on Thursday but we are really hoping that he will have an opportunity to read the mri's on Thursday or Friday.

We covet your prayers. Specifically, we are praying that Dr Heffez will read the mri's quickly and be able to determine the cause of my problem. We pray that he will contact us quickly and that the surgery or procedure will be scheduled soon. Meanwhile, we are praying that the pain will go down a to a more tolerable level and/or this new pain med will continue making the headache tolerable. I am running out of options both orally and by iv and shot. Please also pray for strength and grace for my family. This has been difficult for me but sometimes I think it is even harder for Kyle and the kids.

We have just decided to email the link to this blog out to friends and family and hope that it will help with communication . Kyle and I as well as a couple of family members will try to keep this up to date as we can. We appreciate so many people supporting us in so many ways and especially covet your prayers.
Cindy

The night before the MRI

I am now at Brett and Karleen's house preparing for my MRI tomorrow. The pain is excruciating and although I don't doubt the Lords purpose, I don't know how much of this a person can stand.

I wonder if there are more out there that suffer like this.

I received a new pain pill today that helps a bit, but the Dr. says we are running out of options. A headache clinic suggested a certain steroid, but the side effects would probably outweigh the benefits.

Please pray for Kyle and the kids, this has to be so difficult for them as well.

We sure appreciate all the love and support we receive from everyone. We hope that being incommunicado is not taken as a slight, but it is hard to communicate to all.

I sure pray this doesn't get worse and I am anxious for me to be healed and be beyond this.

For Cindy, through Brett (the Bro-n-law)

MRI scheduled

I am thankful that my mri is scheduled and it will be with full sedation. I will have it done Wednesday morning. I check in at 6:00 am and it will actually start at 8:00. I am thankful that I won't have to try to get through another. The results will be sent to my neurosurgeon and we are praying that he can determine the problem!

Current issues

My severe headaches have returned. I will write more later for those wondering about the past.

About two months ago they suddenly started again after having a 5 month break following surgery for Chiari. I rode in our pickup for about 45 minutes twice one Saturday and I was miserable for a few days and had a strong headache. After that, the headaches became more regular until several weeks later they were daily. Then the daily headaches increased in severity day by day.

About 4 weeks ago I had an mri of my head again. Nothing showed. Then 1 1/2 weeks ago I had an mri of my cervical spine. MRI's have been difficult for me due to the noise. Unfortunately this one really caused problems. I wasn't able to walk out of the mri so I was put in a wheel chair and brought to ER for pain meds. I was basically non-functioning for about 5 days, not eating, barely able to walk on my own and in the urgent care regularly for additional pain medications.

My GP decided that it was time for me to go to a specialist. Mayo is about 4 hours from home so my husband and I headed there with me on a mattress in the back of the van drugged for the journey. The GP hoped that Mayo would check me into the hospital through the ER. That didn't happen. They told me again that this is a long term problem, that I needed to look at pain management and drug regimens again and that I would not be well for a long time. Very discouraging. We went to the hotel and decided to call the neurosurgeon that performed my chiari surgery to see if he would see me. He agreed to see us the next day so we drove another 4 hours to Milwaukee.

He performed several neurological tests in the office and determined that I am in worse condition neurologically then I was in March at my post-op visit. He believes that something is causing it--it doesn't just happen by itself. He ordered one additional mri of my lumbar spine and sent me home in an aspen neck brace.

We are hoping to do a sedated mri this time in hopes of avoiding a major downturn again. After that, he will look at the mri's and hopefully determine the problem. I dread the thought of another surgery, but yet that looks much more positive then pain management and drug regimens again.

Why am I doing this?

I have decided to try a blog to describe my health challenges in hopes of keeping friends and family up to date and possibly help someone that may be having some of the same challenges