Siblings & Chiari

[czpdx]

I'm 27 days post-op from my fourth surgery, and my sister (who cared for me for the first week after surgery) was just diagnosed with Chiari. What rough timing for her since she just saw the worst of my recovery up close.

Does anyone else have siblings swith Chiari? If so, have their experiences/surgeries been similar to yours?

Claire

[selmaS]

  Ok now I remember, it is hard to keep everyone on here's history correct in my mind so I need a refresher from time to time.....

Well I know we do have a few Drs on the list for CA in the Kaiser Group.....member redkim had her surgery with that group(ins) .....so she may be someone to PM and ask a few questions.

  I am glad ur sister is getting benefits, but so sorry u had to go thru so much.

I pray ur last surgery will be the last and give u the benefits u r looking for.

[czpdx]

- 1st surgery was "conservative" decompression - removed bone only (enlarged foramen magnum & C1 laminectomy)
- 2nd decompression removed scar tissue and did dural patch
- 3rd surgery was an emergency surgery for a subdural hygroma
- 4th surgery (August 2, 2012) was a repair of a quarter-sized hole in the center of the dural patch, draining of pseudo, and dealing with numerous adhesions

My experience is already benefitting my sister in that her doc was trying to refer her to a neurologist rather than an NS, but she put her foot down and got the NS referral instead. She's in the Kaiser system, so choice of docs is more limited. She knows she needs to see a Chiari specialist though. I wish she lived in my state as I am very pleased with my new NS...

[selmaS]

  Hi Claire, I have yet to get my sisters to test for it, I know at least 2 have EDS, ....

Just bcuz u and she both have it does not mean u will both react to it and the surgery the same way.

May I ask y u had 4 surgeries? Did they discover something post op or did u develop a related issue post op to require more surgeries....?

If ne of the above is the case, u may have saved ur sister from going thru all that....so there may be a positive in there, even if it was at ur expense.