just found out i have chiari 1 malformation. i am 30

ok i have like tons of little symptoms and have been going to dr.'s like crazy i have been trying to look it up myself they accidently found it in an mri is there anyway that they made a mistake or no? my legs are my worse symptom. but there is tons of other symptoms i am at a lost on what to do with all the stories i have been reading it seems like if you dont have a specialist in this c1m then they can jack you up pretty bad or put off surgery and do worse harm by letting it progress. if anyone has any info please let me know thanks

[selmaS]

Hi, I was dx at age 48......if u read thru the tr=hreads u will see many members have had quite a time to find the right dr.
we also have  athread of chiari specialists.....let us know where u live, if u can't find one on the thread.

U need to start with the important things.- do u have a CSF flow blockage? - do u have a syrinx?- do u have ne other chiari related condition?

Yes, once u r dx, u need to find a chiari specialist.

Do u know ur herniation? and what other symptoms do u have?

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

Welcome! : )

Good luck
Godspeed
"selma"

[Shane99]

Welcome to the boards.  I'm sorry to hear you have been diagnosed with Chiari but this is a pretty good place to get information and content. Check out the first thread on this board and it will give you a basic introduction to Chiari and how to navigate the boards.

It's doubtful that it has been misdiagnosed. Chiari can be difficult to find unless they are looking for it, but once discovered it's fairly obvious. Do you know your tonsillar herniation (how far down into your spinal column is your cerebellum dipping)?

You said that the Chiari was discovered accidentally; what were you having an MRI for? Was it your leg issues? Are you having any spinal issues or pain? Have they mentioned Syringomyela, Syrinx, or anything about your CSF flow?

Right now the most important thing you can do is find a Chiari specialist!  Not all neurosurgeons or neurologists are. We might be able to help with that if you can't find one. Once you find one, you may have get your Primary Care Physician to refer you.  Make sure that you get a copy of your MRI and any paperwork.

[jen3boys]

hi, I found out that I have chiari 1 malformation on last Friday I met with the doctor this Friday he said I need to find a neuro surgen. I have been trying to find where the best place to go is I live in vermont. If any one has any advice I would very greatfull. I so could use some help