Chiari Malformation Community
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Having a better day! :) ADVICE: Learn as much as you can!

Hi Guys-  It has been a while.  I have had some pretty rough months.  Things were never quite right after the three surgeries in Oct/Nov of last year and constant nausea has been torture.  I have finally found an autoimmune guy that I think is pretty smart so maybe I will have things figured  out soon but for now at least they are improving.  I have had so much blood taken in the past four months that i wonder if I even have any left!  It stinks because through this process they have also found I am very anemic so I am trying to work with that too.  I really wish the medical community would connect the dots between Chiari and autoimmune issues because it is so frustrating !  I wish I had understood how important it was to learn about POTS and EDS and such things BEFORE doing anything.  I am three years into surgeries soon and have had 7 or 8 I think related to all of this.  I am still happy I have answers and happy to be getting them for my daughter too!  I am also very happy to report that i have had NO HEADACHES.. I had years and years and years of "migraines" and since the last surgery to close the leak not even one headache.  It is amazing!  I am still not sure after what a mess this has been that I can clearly say that I am happy I began this whole process but I hope to be able to say this when things are all done!!  Just wanted to touch base since so many here have helped me so much over the years!!!  I hope you are all doing well!!! -zygy
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1925822_tn?1333709217
Wooow.congrats noooo ha no more sounds fantastic...but it was,about time.u ve been thru sooo much.i too left a comment that the herniation of chiari is just one thing of the whole network surrounded.i had fusion some days ago and my ns by going in saw my vertebras structure is not nornal neither...they can doing scanning as much as they want...chiari has sooo many things behind....i do feel the same.my nausea is horrible too.i feel like puking all the time and its not fun at all.thanks for ur great update
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620923_tn?1405964489

  Well said....I know I  do say it all the time, and not everyone....seems to hear it or feel that it is necessary...but u r one example that if u knew, it may have saved u from an extra surgery...who knows...

I really feel strongly that most that have post op issues do have an underlying issue  that was not addressed pre op....JMHO
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2063048_tn?1390828211
I absolutely agree with both you and Selma. Unfortunately, even when we find good neurosurgeons who are specialists in chiari, they still don't often understand the importance of testing for these conditions. Nor will insurance always cover it. I know in my case, the doctor didn't want to consider any extra testing for any other condition and my insurance had refused to cover the cost of any additional testing. It was only while I was in the pre-op room and went over my other symptoms that my NS agreed to have my post-op scans include the lumbar region to check for tethered cord. So while it is important, it is still not always possible. We need a change in the medical system that actually understands us and these conditions and how they're related.

I do hope you continue to feel better and am happy for you that the HA has been a good outcome!

Annie
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1667208_tn?1333111449
:) Thanks guys!  It is really sad that we are all doing this when all the connections have not been made but hopefully more and more people will start to think about it.  My hope is that people at least take the time and IF they think they might have one of these other things happening that they can get a DR. to look into it!!!  If a Dr. sees things of concern you would think that getting approval would be easier!  I am sure not everyone has it so not everyone is going to require expensive testing.  POTS can be seen a lot of the time with just a poor man's tilt test, heart rate on Laying down and standing and 2 minute increments.   EDS I had just never heard of but IF a Dr. had talked to me about EDS 3 as a possibility I would have agreed!!!  All I knew at the point of the first surgery was that I have lots of sensitivities and things go wrong for me... that was when I asked for no bovine, I was turned down because that is the "normal" treatment!!  Bovine patch stuck to your cerebellum is no fun at all.... if my Dr. had known about the possible connections than my words might have changed her approach!  I think it is wonderful that people are posting this information over and over and over on this site... hopefully people will find it and take a minute to think about if this could be happening to them!  -zygy
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620923_tn?1405964489

  This just encourages me to keep on repeating myself,.....sometimes I feel like a pest about testing for EDS....but this is one strong reason y I do and will continue to ask- were u tested for related conditions like EDS...and what is being done, lamenectomy , duraplasty and if so what type of patch will be used?.....

I have done it so often, I begin to feel bad, but this gives me new found strength to keep on asking : )
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1667208_tn?1333111449
MUCH LOVE TO YOU for all that you keep repeating!!!!!!!!!!!!!!  It is wonderful what you do for everyone on this site!!!  You are the number one reason that I keep coming back to update :)  I am glad this can give you more energy for repeating yourself a few million more times!!!  Anyone saved from the chaos and pain I have had will not even know what they have missed but the thought that you can save anyone from it is just very rewarding!!!!  -zygy
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620923_tn?1405964489

  Thank u that means soooooo much to me....so many have surgery and leave....some pop on once in a while...but for the most part they leave after they had surgery so it is hard to show how these issues r connected and can affect us.

  Thanks for still being here <3
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