Chiari, round 2

[lisha22]

Hey, I'm Alisha. I'm 22 and was diagnosed with Chiari back in April of 2007 with a herniation of 3mm and 5mm. I had the decompression surgery the following November, and after dealing with a spinal fluid leak through my incision when the stitches were removed everything seemed to be great. The past couple of years however, it seemed to be starting again. My doctors told me once again that it was all in my mind. One MRI later, my tonsils are now herniated 8mm and 1cm.

The doctor who did my first surgery had experience with Chiari, but wasn't a specialist, and since he is refusing to treat me any further, I need to find a specialist. Anyone have any suggestions? I live in east Texas, and I was hoping to try and find someone fairly close. I have found several doctors, but I would like to get patients' opinions before I decide on anything. My neurologist is wanting me to call him in the next week to tell him where to send me, so I thought I'd try this route.

[linnielou232]

I pray that you do find a dr near you.  I had the same problem except I had to have 3 surgeries due to the same reasons you have.  It is so flustrating, but so important to find the right dr.  I had all the faith in the world with my dr.  it was my  body that didn't cooperate.  I recommend the U of M  or I have heard good thing's about Cleveland hosp.  I was blessed to have my dr close to home in MI  so I was close to family through the hole ordeal.  I wish you well

[selmaS]

  Hi and welcome to the Chiari forum.

Unfortunately too many drs that have some experience with chiari do not have enuff experience to help when these issues arise.

It is not uncommon for symptoms to return, it can be the result of scar tissue causing another obstruction, which may be y ur tonsils have herniated even longer than b4......

  As Jen mentioned Dr Kim did do a webinar on Chiari so this dr is worth researching, we do have a list of drs for u to research  as well ... http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

   The list is not a referral, just a means to help u locate names of drs to help u with ur research.

   "selma"

[jenshead]

I don't know a whole lot about him, but a Dr. Kim in Houston did a Chiari webinar last week.  He said he will review mailed in films.  The webinar was decent, so might be worth a look.  Definitely do your homework on various doctors though.