Today Dr Heffez called. Unfortunately when I ordered my ct scans & shunt series from McKennan and overnighted it, they missed the records from Sunday's ER visit. Gr. . . so they finally found the scans after I called them today and they are now being overnighted. The bad news is that the doctor is out tomorrow and is in surgery on Monday. So this delay is significant to me because the surgery can't be scheduled until he has reviewed these and possibly had me do a spinal tap. I am going to beg him to let me skip the spinal tap--I hate those! But I probably will need it and once that result is called in I would hope that the surgery will be scheduled.
This morning I woke up feeling a little better so I decided to go to the office to take care of a few things. It did confirm in my mind that I need to get something done. I just can't think through things which is so frustrating! As before, I move slowly. My balance is off so I turn slowly so that I won't fall over. I can't handle much noise or light. And I have that "look" again that means that even strangers recognize that there is something wrong with me.
It is hard to be back on this road again. It seems like just yesterday that I was going down this path. Please pray for strength for me and my family. This has been hard for all of us to deal with again and rather scary to think that this might be how things go every 1.5 to 2 years. Overwhelming right now.
Thursday, February 17, 2011
Tuesday, February 15, 2011
Tuesday
A quick update with good news! Dr Heffez in Milwaukee will continue to work with me! That is a huge relief! So I am gathering records and sending them to him for review.
The headache continues about the same. I would prefer that it either get better--so I don't have to worry about the shunt--or get worse. If the headache is absolutely intolerable going into brain surgery is, well, a no-brainer. I can't really live with the headache the way it is but it isn't so awful that I just absolutely can't stand it. No headache would be a huge answer to prayer and something that I long for!
The headache continues about the same. I would prefer that it either get better--so I don't have to worry about the shunt--or get worse. If the headache is absolutely intolerable going into brain surgery is, well, a no-brainer. I can't really live with the headache the way it is but it isn't so awful that I just absolutely can't stand it. No headache would be a huge answer to prayer and something that I long for!
Monday, February 14, 2011
Two posts in one day!
Today has been interesting. My head has stayed about the same--not getting worse which is great, but not getting better which is a bit discouraging. At this point I am praying that this is just a bad headache. At worst, the shunt is malfunctioning and will need to be redone.
The local neurosurgeon is now off the list of possibilities. He told me today that he would not work on my shunts "unless I am dying." Well, I might get there if my shunts are malfunctioning but I'm not there yet! He took care of me with the infection because I would die without treatment. Otherwise, he told me that he just doesn't work with shunts unless it is a life or death situation. That being said, quality of life means nothing. Eventually if my shunts are not functioning, I may go blind and then I would die. I really don't want to let it go that far! :) On the bright side, I am glad that he was honest enough to say that he generally doesn't work with shunts except in an emergency situation because I would prefer to have a ns that has worked with situations like mine before and is comfortable with it.
We are waiting to hear from the neurosurgeon (ns) in Milwaukee again. I think so highly of him and hope that he may be willing to help me if I do need it. We also know of a ns in Los Angeles and another in Columbus, Ohio. Since I haven't had an appointment with either of them if I need a shunt surgery soon because of the current events they are probably not going to be an option since new ns's generally take time to get an appointment with, allow them to do their own tests and then proceed to the proper treatment. I originally had an appt with the doctor in Ohio but ended up being in the hospital for the infection during the time that it was scheduled. He was 1 1/2 months out at the time that I scheduled with him. If this is indeed a shunt malfunction I won't be able to wait 1.5 months. So tomorrow will be another telling day. We'll see how I am feeling. I know the Lord is directing my steps, so we will trust that He has a plan. Ironically, I had put the verse a couple posts down the night before this started. I had no idea that this was coming! The Lord was preparing me with words of comfort when I would need them. :)
The local neurosurgeon is now off the list of possibilities. He told me today that he would not work on my shunts "unless I am dying." Well, I might get there if my shunts are malfunctioning but I'm not there yet! He took care of me with the infection because I would die without treatment. Otherwise, he told me that he just doesn't work with shunts unless it is a life or death situation. That being said, quality of life means nothing. Eventually if my shunts are not functioning, I may go blind and then I would die. I really don't want to let it go that far! :) On the bright side, I am glad that he was honest enough to say that he generally doesn't work with shunts except in an emergency situation because I would prefer to have a ns that has worked with situations like mine before and is comfortable with it.
We are waiting to hear from the neurosurgeon (ns) in Milwaukee again. I think so highly of him and hope that he may be willing to help me if I do need it. We also know of a ns in Los Angeles and another in Columbus, Ohio. Since I haven't had an appointment with either of them if I need a shunt surgery soon because of the current events they are probably not going to be an option since new ns's generally take time to get an appointment with, allow them to do their own tests and then proceed to the proper treatment. I originally had an appt with the doctor in Ohio but ended up being in the hospital for the infection during the time that it was scheduled. He was 1 1/2 months out at the time that I scheduled with him. If this is indeed a shunt malfunction I won't be able to wait 1.5 months. So tomorrow will be another telling day. We'll see how I am feeling. I know the Lord is directing my steps, so we will trust that He has a plan. Ironically, I had put the verse a couple posts down the night before this started. I had no idea that this was coming! The Lord was preparing me with words of comfort when I would need them. :)
Well. . .
I had an unplanned trip to McKennan yesterday. I woke up early to my head hurting very badly, and it just became worse as the minutes ticked by. I became very nauseated and my head felt like it was exploding again. Not good. That being said, I haven't had the best of experiences with emergency rooms (except rv). Typically the on duty doctor has the mission of trying to make you feel better and sends you home. They gave me drugs and sent me home.
My head isn't as bad as yesterday but still pretty painful. I'm not sure what is going on but am quite concerned about the shunts. I am waiting now for a call from the local neurosurgeon and am hoping he will see me today. I also put a call in to my neurosurgeon in Milwaukee to see what his thoughts are for shunt options if I am indeed going down that road again.
Please pray for me!
My head isn't as bad as yesterday but still pretty painful. I'm not sure what is going on but am quite concerned about the shunts. I am waiting now for a call from the local neurosurgeon and am hoping he will see me today. I also put a call in to my neurosurgeon in Milwaukee to see what his thoughts are for shunt options if I am indeed going down that road again.
Please pray for me!
Saturday, February 12, 2011
Psalm 138:7-8
Though I walk in the midst of trouble,
you preserve my life;
you stretch out your hand against
the wrath of my enemies,
and your right hand delivers me.
The Lord will fulfill his purpose for me;
your steadfast love, O Lord,
endures forever.
Do not forsake the work of your hands.
I have decided to visit the neurosurgeon here and see what he thinks about the idea of a new shunt and if he would be a back up if I have problems assuming that I were to go ahead with it. After seeing what he has to say, we will consider what the next step will be. Please pray that the doors will open and close as the Lord wills it.
you preserve my life;
you stretch out your hand against
the wrath of my enemies,
and your right hand delivers me.
The Lord will fulfill his purpose for me;
your steadfast love, O Lord,
endures forever.
Do not forsake the work of your hands.
I have decided to visit the neurosurgeon here and see what he thinks about the idea of a new shunt and if he would be a back up if I have problems assuming that I were to go ahead with it. After seeing what he has to say, we will consider what the next step will be. Please pray that the doors will open and close as the Lord wills it.
Saturday, February 5, 2011
Wow!
A lot has happened in the last little while and I think I will just start writing about it and see how far I get. :)
A little while ago I mentioned that I had received a book from my aunt about a lady that I suspected has one of the same disorders that I have--Intracranial Hypertension, also known as pseudo-tumor cerebri. Since that time I have actually talked to her by phone a couple times and we were able to share our stories. Her's is amazing!
In the course of the conversation, she told me that she sees the top neuro-surgeon at the UCLA Medical Center and asked if I could come and see her doctor there. She has a unique shunt that could possibly eliminate the headaches that I still have all the time. She has not had headache issues since having this particular shunt. Initially we have been very excited about this, but now the logistics of it all are quite overwhelming to me. I can't deal with a lot of things at the same time, and with the stress of Pizza Fresco closing, handling things at the office and the normal craziness of life, I am having a hard time processing all this. I decided that I need to start writing about this. Sometimes if I put it in writing I can think through it just a little more clearly and hopefully it won't seem quite as daunting.
Here are the challenges that we are contemplating.
1. Are my headaches truly caused by the shunt not functioning effectively? Could it possibly be something else--the Chiari side effects? The continualy changing weather? Or could I possibly not be able to get over the headaches & related issues because of all of the above?
2. What happens if I have this surgery in California and need multiple revisions like before? Driving to Milwaukee was more doable than flying to California repeatedly.
3. If I have a new & different shunt put in, will the neurosurgeon locally decline seeing me again for adjustments like before? Would any setting changes always have to be done in California?
4. Am I physically ready for another big surgery? Mentally I would dive into it in a heartbeat if I knew the above questions wouldn't be an issue. I would do nearly anything to regain my health and eliminate the headaches and related symptoms!
5. We are not at all familiar with LA, and not comfortable trying to get around down there on our own. The logistics of flying in there, getting to the UCLA campus, navigating through that place that I would guess is huge and finding my way to the doctor is terrifying!
6. When I made the first call to the required referral nurse, I got the huge run around. She absolutely would not consider scheduling an appointment with this particular doctor although that doctor told the lady I talked to that he would like to see me. First she wanted me to see a chiari doctor. After I convinced her that I didn't need that, she then went to another doc that handles IH, then a shunt doc and finally we ended the conversation with seeing a neurologist and he would determine if I could see this particular neurosurgeon. Then we went around for a while about the requirements I needed to submit before scheduling the appointment with the neurologist and I don't have them. So I will need to do some leg work to see if I can get what they want.
7. Of course, there are the financial issues. I know that this would require a minimum of two trips down there if we were able to get them to agree to make an appointment with the NS after seeing the neurologist rather than waiting until after the first appointment to schedule the next. Then I am sure there is a waiting list to get the surgery scheduled.
8. Finally, I just don't quite know when to do this--if I should! I so don't want to miss anything more in my kids' life and the next several months have so many things coming up! Which brings me back to being overhwhelmed.
We have wondered if it would be worth my time to go to an area where the barometric pressure doesn't bounce like a ball for a week or two to see how I do. That may answer the question about the shunt not working effectively or the weather causing the problem. Kyle emailed a couple weather forcasters and they suggested anywhere in southern California through to Phoenix as an area that has little barometric pressure changes. Another trip. . .
So a lot of decisions and issues to consider. We are praying the the Lord will guide us through this and make our path clear. We love the prospect of me getting much better, yet realistically know that it may not be possible.
A little while ago I mentioned that I had received a book from my aunt about a lady that I suspected has one of the same disorders that I have--Intracranial Hypertension, also known as pseudo-tumor cerebri. Since that time I have actually talked to her by phone a couple times and we were able to share our stories. Her's is amazing!
In the course of the conversation, she told me that she sees the top neuro-surgeon at the UCLA Medical Center and asked if I could come and see her doctor there. She has a unique shunt that could possibly eliminate the headaches that I still have all the time. She has not had headache issues since having this particular shunt. Initially we have been very excited about this, but now the logistics of it all are quite overwhelming to me. I can't deal with a lot of things at the same time, and with the stress of Pizza Fresco closing, handling things at the office and the normal craziness of life, I am having a hard time processing all this. I decided that I need to start writing about this. Sometimes if I put it in writing I can think through it just a little more clearly and hopefully it won't seem quite as daunting.
Here are the challenges that we are contemplating.
1. Are my headaches truly caused by the shunt not functioning effectively? Could it possibly be something else--the Chiari side effects? The continualy changing weather? Or could I possibly not be able to get over the headaches & related issues because of all of the above?
2. What happens if I have this surgery in California and need multiple revisions like before? Driving to Milwaukee was more doable than flying to California repeatedly.
3. If I have a new & different shunt put in, will the neurosurgeon locally decline seeing me again for adjustments like before? Would any setting changes always have to be done in California?
4. Am I physically ready for another big surgery? Mentally I would dive into it in a heartbeat if I knew the above questions wouldn't be an issue. I would do nearly anything to regain my health and eliminate the headaches and related symptoms!
5. We are not at all familiar with LA, and not comfortable trying to get around down there on our own. The logistics of flying in there, getting to the UCLA campus, navigating through that place that I would guess is huge and finding my way to the doctor is terrifying!
6. When I made the first call to the required referral nurse, I got the huge run around. She absolutely would not consider scheduling an appointment with this particular doctor although that doctor told the lady I talked to that he would like to see me. First she wanted me to see a chiari doctor. After I convinced her that I didn't need that, she then went to another doc that handles IH, then a shunt doc and finally we ended the conversation with seeing a neurologist and he would determine if I could see this particular neurosurgeon. Then we went around for a while about the requirements I needed to submit before scheduling the appointment with the neurologist and I don't have them. So I will need to do some leg work to see if I can get what they want.
7. Of course, there are the financial issues. I know that this would require a minimum of two trips down there if we were able to get them to agree to make an appointment with the NS after seeing the neurologist rather than waiting until after the first appointment to schedule the next. Then I am sure there is a waiting list to get the surgery scheduled.
8. Finally, I just don't quite know when to do this--if I should! I so don't want to miss anything more in my kids' life and the next several months have so many things coming up! Which brings me back to being overhwhelmed.
We have wondered if it would be worth my time to go to an area where the barometric pressure doesn't bounce like a ball for a week or two to see how I do. That may answer the question about the shunt not working effectively or the weather causing the problem. Kyle emailed a couple weather forcasters and they suggested anywhere in southern California through to Phoenix as an area that has little barometric pressure changes. Another trip. . .
So a lot of decisions and issues to consider. We are praying the the Lord will guide us through this and make our path clear. We love the prospect of me getting much better, yet realistically know that it may not be possible.
Tuesday, February 1, 2011
Storms
Big storms again! I'm not feeling so great, although it could be much worse. It just makes it harder to get through the day, particularly as the day is drawing closer to an end. The energy it takes to take care of a family is more than I have.
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