Conquer Chiari walk

[KaroleR]

Is any one going Sept 21? What town? Ill be at the San Antonio walk

[KaroleR]

Last year was 1st time I gave in to my pride and walked. I have found comfort meeting and now having friends w same health issues and learning I wasn't alone. Tx there isn't a big awareness and often I have had to spell CHIARI to a er or dr. ;)

[GEMOM]

I think I (and my family) will walk in Emerald Isle NC.

[JCappiello]

Hmm I see there are walks in NY (where I am from) but they are very far from me, but I did find one in NJ that is pretty close and I am definitely going to walk!....  I am looking forward to it...

[frankie_rush]

I will be at one of the walks.  if not in my town I will drive to one.

[selmaS]

  WOW...ok well I know a few had empty sella as well but not the same issues as u,,...this is really different ,....this will help me in my research thanks :)

[KaroleR]

I had a empty Sella turcica that's how they found IH most drs kept looking at Chiari and I got the normal response of "you have the cure / fix" decompression already. But the tonsils kept falling and the vertigo and pressure got wicked horrible. I started paralyzing and then they did LP to remove pressure that restored movement and feeling back in extremities

[selmaS]

  Ok thanks, I have not have another member have this happen, and y I wanted to clarify.....something for me to do some research on.

[KaroleR]

IH and that caused the tonsils to herniate.

[selmaS]

  I am sorry to hear that....MVA can cause many issues pre and post op...

But 6 yrs and u felt great that is wonderful.....

Do u know if the IH is from obstruction from the tonsils being forced down again, or did u develop IH and that caused the tonsils to herniate?

I know what u said above that u have IH and it created ur 2nd Chiari, but Chiari is  malformation of the skull not the herniation so, I see it as a re-herniation not really 2nd Chiari no matter what the Drs call it, this helps me keep track and know what is going on so if it is seen again I can recall.

[KaroleR]

Yes to full.
I developed IH 2011 and it has caused my 2nd Chiari (if that makes sence) I was fully recovered and well from 2005-2011 when I was in an auto wreck and symptoms ALL came back.

[selmaS]

  It is wonderful to hear how even tho u did not participate the forum was of help to u...But, I am glad u decided to join us  and share ur experiences with us.

May I ask, ur first decompression, was it a full decompression with lamenectomy and duraplasty?

Did u have IH b4 surgery or did u develop it post op?

Sorry for all the questions, but it helps me understand ALL of the members knowing each one...as it is possible to learn from what u go thru to help others.

[KaroleR]

https://www.conquerchiari.org/ccwaa/sites-2013.html

Hers a list of all 66 in 40 states.
I'm the co for San antiono.
I was DX in 2004 decompression surgery 1/05 for Chiari. I'm curentyly again waiting another :( I'm back down 11mm due to my IH and have another syrinx back again (syringmellia).
I'm also marred to a EDSer and my youngest son is EDS also along w possible teather cord / Chiari combo. I have followed your post for years just now signing on due to wanting to post and respond. This has been a useful tool and relief for many of my questions. I love all you do and your post! Ty for the official welcome now that I took the dive... Hardest part of all my journey is I'm now public about my illness and no longer ashamed or alone <3

[selmaS]

  Hi and welcome to the Chiari forum.

  We have not posted the list of cities that will host the walks this September....

It is good to know u will be participating...do u also have Chiari? .,...have u had surgery?