Aa
visit went fairly well
First I would like to thank everyone for the warm welcome and wealth of information! We saw the neurosurgeon yesterday and found that Matti has a 9mm drop. I was truly expecting maybe 5, so it is kind of a shock. He wants a full ophthalmology exam - (her vision went from 20/20 in 2009 to 20/70 in Jan. 2010) he wants the eye doc to dilate the eyes, look for any pressure building up? He also scheduled a visit back in 3 months with a full spinal axis MRI to be done. Matti has to keep a diary of what she eats, drinks, medications and what symptoms and level of pain/discomfort she experiences daily. He was careful to point out that the Chiari may or may not be responsible for the migraines. He is not recommending surgery at this point - just monitoring as her Chiari symptoms are "not severe" enough to warrant surgery at this point. I hope he doesn't plan to wait and see if she loses bladder and bowel control! Matti does not think that coughing or straining brings on the headaches but she can not bring her chin to her chest without pain.
He cleared her to start physical therapy - there is a center here that uses a very holistic approach and deals only with spinal issues - hoping insurance OK's that one! We also are doing the migraine elimination diet plan.
Now I get to print out all the information you all gave me - and continue to research and track my daughter's well-being!
Kim
He cleared her to start physical therapy - there is a center here that uses a very holistic approach and deals only with spinal issues - hoping insurance OK's that one! We also are doing the migraine elimination diet plan.
Now I get to print out all the information you all gave me - and continue to research and track my daughter's well-being!
Kim
Sorry to hear you are dealing with this, especially with a child! I think the line of surgery or no surgery is a very very fine line and sadly it seems to be located in different places for many of the Doctors which only makes it more confusing for us. There are such differences in everyone with Chiari that it makes it even more complicated. I think the best thing you can do is be sure you have someone with experience! Do your homework and learn as much as you can so that when you ask questions you will know some of the answers and be able to see how much your Doctor knows! Then go ahead and get another opinion and perhaps even a third and forth! Then start to factor in your feelings and your child's!
My neurologist told me that because I had no serious neurological issues that I did not need to see a neurosurgeon (I went anyway), my neurosurgeon considers serious Chiari headaches all the time a good reason for surgery! Same hospital, two different opinions! It is very frustrating and a very hard choice to make since I am not being told "you must do the surgery". I think along with each doctor the same goes for the people on this board, everyone has their own opinion of when surgery might be right.
I asked my Doctor (neurosurgeon), if Chiari Surgery is not a cure, only a prevention why would you wait for serious neurological issues and possibly non-reversible issues? It seems to contradict itself. She was wonderful in explaining that you want to be sure that the Chiari is to blame and rule out other possibilities. Since my biggest problem is the Chiari head pains with bending, straining, laughing, and lately doing just about anything, it is clear to her this is the Chiari. I have had five years of watching it increase, if it had been infrequent and not changing she would want to watch it more. For some I am certain that head pains would not be enough (although I feel there are other things that have popped up in the past year of increasing problems) the head pains to me are plenty! I can't play ball with my kids (can't bend over) I can't laugh with my family, (laughing is a killer for me), I can't do much at all without increasing head pains.... which then seem to cause more migraines or whatever the headache might be. For me personally, a lifetime of constant headaches and Chiari head pains really does not sound like fun. I have a very high chance to change this and I am willing to give it a try.
If they say you need to do it then the choice will be made for you, if not then it will take a lot of education and time to think! Find the right doctors and learn all that you can... and of course enjoy this board, they have provided me with tons of information and friendship when I was confused or just wanted a reason to smile :)... remember I try not to laugh :)
My neurologist told me that because I had no serious neurological issues that I did not need to see a neurosurgeon (I went anyway), my neurosurgeon considers serious Chiari headaches all the time a good reason for surgery! Same hospital, two different opinions! It is very frustrating and a very hard choice to make since I am not being told "you must do the surgery". I think along with each doctor the same goes for the people on this board, everyone has their own opinion of when surgery might be right.
I asked my Doctor (neurosurgeon), if Chiari Surgery is not a cure, only a prevention why would you wait for serious neurological issues and possibly non-reversible issues? It seems to contradict itself. She was wonderful in explaining that you want to be sure that the Chiari is to blame and rule out other possibilities. Since my biggest problem is the Chiari head pains with bending, straining, laughing, and lately doing just about anything, it is clear to her this is the Chiari. I have had five years of watching it increase, if it had been infrequent and not changing she would want to watch it more. For some I am certain that head pains would not be enough (although I feel there are other things that have popped up in the past year of increasing problems) the head pains to me are plenty! I can't play ball with my kids (can't bend over) I can't laugh with my family, (laughing is a killer for me), I can't do much at all without increasing head pains.... which then seem to cause more migraines or whatever the headache might be. For me personally, a lifetime of constant headaches and Chiari head pains really does not sound like fun. I have a very high chance to change this and I am willing to give it a try.
If they say you need to do it then the choice will be made for you, if not then it will take a lot of education and time to think! Find the right doctors and learn all that you can... and of course enjoy this board, they have provided me with tons of information and friendship when I was confused or just wanted a reason to smile :)... remember I try not to laugh :)
COMMUNITY LEADER
Hi....I wanted to tell u the same as Stephanie...listen to ur mother's intuition......as a child I had HA's when straining for a bowel movement, but thought everyone did, and didn't understand it as a symptoms as a adult...it didn't bring on a HA, but did present me with pain while straining...I also did not discuss this with neone...it is not something that my mom ever talked about...so there is no way for a child to realize that something they always had was a symptom......or not normal...if u always have it, to u it is normal.....
Hang in there : )
"selma"
Hang in there : )
"selma"
I agree 100% w/ what Carolyn just said. You don't want to rush into surgery too quickly. I have had the typical HA symptoms my whole life (I can remember being on the playground in like 2nd or 3rd grade and getting the HA after yelling... happened all the time) But I only found out about the CM about 4 yrs ago and I have just been watching things since then. I couldn't convince myself that I should have such a drastic and serious surgery, that doesn't always "cure" people, (in fact I'm not sure I have heard anyone say their sxs went away 100%). As long as I could work and live a fairly normal life and I wasn't causing any permanent neurological damage, I decided to wait it out.
I don't know your whole story w/ your DD sxs, but another thing to think about is that often times CM sxs can come and go. In the past just when I thought I couldn't take it any more and was going to waive the white flag and have surgery, they would go away for a while, sometimes even for years at a time.
Follow your "mothers intuition". Good luck!
I don't know your whole story w/ your DD sxs, but another thing to think about is that often times CM sxs can come and go. In the past just when I thought I couldn't take it any more and was going to waive the white flag and have surgery, they would go away for a while, sometimes even for years at a time.
Follow your "mothers intuition". Good luck!
Well..unfortunatley a lot of NS like to take it slow if they can. The problem with the surgery is that they can only do it and hope that it will show improvements but they can't be sure. That has to be weighed against the risks of the surgery and the fact that in a small percent of cases that it can make things worse. In most people though it is a very effective way of stopping the progression if nothing else. For me, by the time I found out there was no choice, I had already progressed to a debilitating level.
Your NS is right, it is truly individual...and just by him saying that it shows that he knows his stuff. Less educated drs would go on the herniation alone and would refuse to realize that it is much more important to look at the blockage of CSF, overcrowding and how the symptoms are affecting the quality of life.
Do keep an eye on her symptoms and call right away if anything changes. I can imagine the stress this puts on you but I would wait until the testing all comes in and then see what they think. Are they doing a CINE MRI? That may be one thing to ask for, it visualizes the CSF flow and can be helpful to see if there is a blockage.
I know it's confusing but you do have the advantage of knowing about it and watching for it. However, if you have gut feeling that more needs to be done, get a second opinion if you can..especially if you can find a Chiari specialist.
Take care
Carolyn
Your NS is right, it is truly individual...and just by him saying that it shows that he knows his stuff. Less educated drs would go on the herniation alone and would refuse to realize that it is much more important to look at the blockage of CSF, overcrowding and how the symptoms are affecting the quality of life.
Do keep an eye on her symptoms and call right away if anything changes. I can imagine the stress this puts on you but I would wait until the testing all comes in and then see what they think. Are they doing a CINE MRI? That may be one thing to ask for, it visualizes the CSF flow and can be helpful to see if there is a blockage.
I know it's confusing but you do have the advantage of knowing about it and watching for it. However, if you have gut feeling that more needs to be done, get a second opinion if you can..especially if you can find a Chiari specialist.
Take care
Carolyn
Thank you - does this seem like the right path? I am a little confused - it just seems like watching for three months is a long time - of course if she gets worse I will call and tell them -
I don't know - the 9mm is finally becoming more "real" to me - is there any data about what the "average" drop is for those considering or needing surgery or is it truly as individual as the doc claims?
I don't know - the 9mm is finally becoming more "real" to me - is there any data about what the "average" drop is for those considering or needing surgery or is it truly as individual as the doc claims?
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