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
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
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 : )
:) 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
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
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
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