Anyone with acquired Chiari 1

[Lisa_Rowan]

I have the rarest of the rare: An acquired Chiari 1 due to hypoxic brain injury (CO poisoning). Tonsils have descended from 1 mm inferior to foramen magnum to 5mm inferior to FM, in less than one year. Docs think must have had bout of toxic encephalitis with cerebral edema, since no traumatic incidents have occurred.

Of course, officially, ACM is "almost never" acquired, and certainly not from toxic/anoxic/ischemic injury, and seldom if ever in 40 yr old females. But it's true: I DID NOT have Chiari--even Chiari 0--prior to CO poisoning.

Am symptomatic. Also have developed epilepsy (TLE and SP) as result of CO poisoning. Entirely distinct symptomatology. Chiari appears to be worsening.

Anybody have research, case study literature, expert referral or anecdote about adult acquired ACM from toxic/hypoxic brain injury?

Kindo scared! Tonsils dropped 4 mm in less than a year. Will this be a trend? Crappy neurologists where I live. Any thoughts of good neurologists in New Mexico?

[selmaS]

  I was never in NM...the original poster had asked about Drs in the area and I suggested to look at our list to use to research.....

U may want to start ur own group in ur area....we do not have lists of support groups u can go to in person....but, we do a good job here is supporting the members.....

[ChiariVic]

Are you still in New Mexico???

[youngwife]

I agree with Shane99....Chiari is a hypo-plastic posterior fossa...not just tonsil herniation.  IF you do have Chiari now, you had it from birth.

If you only have tonsil descent, then that could be caused by another problem.  Swelling could explain a lot of it....and why you are not symptomatic.

I don't know of any good docs in New Mexico...but if you check out the Chiari support groups, you may find one.

Blessings,
Rebecca

[Shane99]

I'm not aware of any in New Mexico, but Dr. John Oro in Colorado has a great reputation.

Just out of curiosity; You say you have crappy neurologists where you live - how do you know you didn't have Chiari 0?

[selmaS]

.....I don't think it matter's much if it's aquired or congenital in finding a NS as long as he/she's a chiari specialist.
I will look into case studies for u...in the mean time, most here have found the need to travel in order to see a chiari specialist!....I know we have  a list where we ask forum members to post their drs name and location to share drs we like...however some r placing names they did not see and can be located on web sites.Some sites have disclaimers...so please take this as a disclaimer for ne and all drs named on this site.Please research ne dr u contact and ask if chiari is their specialty.

I am not aware of ne in New Mexico!! Please check the thread on this forum.

I also hope u continue to post here, it's a great place for support!

Good luck
Godspeed
"selma"