what next?

[1fee]

i have just recently had a brain scan and been told i have chiari I malformation, the brain scan was mainly because i had bad headaches, i have been having other symptoms such as , painful legs, numb feelings around my mouth and lips like having just been to the dentist and the injection wearing off is the only way to describe it, dizzy after sitting at a desk, whooshing in ears followed by dizzy spells, pain in neck pain, disturbed vission, muscle spasms,however the consultant has told me that the headaches do not look connected to my chiari, i'm confused because i have all other symptoms but my headaches are not connected, can someone try and explain? thank you

[Shane99]

You wrote, " . . .no herniation noted this time but a Chiari I Malf of 16mm"

Umm, the 16mm is the herniation! And that's a very large one. Most neurosurgeons start seriously considering surgery at around 8mm.

You need to make sure you have a Chiari specialist.

[razzle5150]

here is some good info about chiari and the United Kingdom

http://www.chiari.co.uk/

[dp1111]

I LIVE IN SOUTHWEST FLORIDA AND THERE ARE LIMITED NEUROSURGEONS HERE, AND NO CHIARI MALFORMATION SPECIALISTS.  I SUPPOSE MUST TRAVEL TO NORTH, UNIVERSITIES WHERE SPECIALISTS MAY PRACTICE, ON IN PITTSBURGH, PA, THE JO INSTITUTE FOR MINIMALLY INVASIVE ENDOSCOPIC NEUROSURGERY, AND VERY DIFFICULT TO OBTAIN AN APPOINTMENT.

[razzle5150]

Good luck in the UK AT FINDING A DR.  There are a few but it takes so darn long to get in to see one and yalls wait for MRI is ridiculous.

[youngwife]

Please find a real Chiari specialist!!  It is well worth the extra effort.

Rebecca

[selmaS]

I don't know where u live or if the NS u saw was a chiari specialist- u need a chiari specialist!!! the ASAP web siste along with the Chiari institite site have inof as well as a list of drs.....did u have a syrinx as well???

Good luck
Godspeed
"selma"

[Cole0337]

I was told the same thing, but I had an MRI in 2002 of my C-spine, and then another one this year for the same sx's of numbness and tingling, no herniation noted this time but a Chiari I Malf of 16mm, I was then referred to a physiatrist, then a neurosurgeon, then back to a neurologist, and a 2nd opinion of a NS.  They have told me that I do not represent any clear classic signs of Chiari, that my headaches are a sx of chronic daily headaches.  The other sx's are non specific parasthesias.  "What!"  I have had an MRI of brain, c-spine, thoracic and lumbar.  They found a hemangioma on my T9, again incidental and a lateral tear.  They have recently had me on Nortriptylene, but due to side effects, have tapered me off and I will start Trazadone.  Any advice or comments.

[jenn6905]

what type of brain scan showed it and what were your symptoms
jenn

[selmaS]

u r welcome...all my best to u!


"selma"

[1fee]

thanks for info, i will be finding a NS who specialises in chiari!!, cheers for that,
fee.

[selmaS]

who was the consultant?...find a NS that specializes in chiari !! Use the following to get more info...the chiari institute and www.asap.org

I hope u find the info and dr that u need!!!

Good luck
Godspeed
"selma"