Looking for questions and doctors

[Chinadoll24]

HI there, I am was diagnosis last year with Chiari Malformation type 1. My neurologist at the time said it is mild and I do not need surgery or see him again. He suggested massage therapy and physiotherapy, but they cannot touch my neck. How is that going to help?? My GP does not know anything about this disease at all. I am just lost!!
I am in the mist of waiting for a referral to a neurosurgeon. Still waiting to see if any neurosurgeon would accept me as a patient or know about Chiari Malformation in Edmonton, Alberta. It is quite frustrating!!  My symptoms are getting worse. Headaches, numbness, vertigo, double vision, blurred visions, inbalance, etc. I am keeping a log book regarding symptoms. I don't know what else to do.  I don't know who or what to turn too. Any suggestions friends??

Thanks!

[selmaS]

  Hi and welcome to the Chiari forum.

Just so u know Chiari is not a disease, but a condition many are born with, it is congenital, but some can acquire Chiari or low lying tonsils from a head trauma, it is not a true Chiari, but the symptoms will feel the same.

Knowing which u have  and if u have ne related conditions will help u feel better in the long run.....

Testing for related conditions is vital prior to even considering surgery, u need to know how ur overall health is being affected to know th ebest corse of action.

And then  finding the right Dr is Key !

There r many Drs  that do not know about Chiari not just PCP but NS's as well...some still perform the surgery and sometimes with little help to the patient...so do research Drs in Canada list we have...and talk to others to see where they went, do not rush to surgery as it is not a cure or a fix, just a means to slow progression and restore CSF flow.

Keep asking questions and we will try to answer,
U r not alone <3

[Erobles]

I just found out I have chiari and share some of your symptoms. You're not alone. I'm somewhat relieved to have a diagnosis after so many years of suffering and not knowing what was wrong with me. I would definitely be looking for a neurosurgeon that specializes in Chiari. Good luck to you and I wish you all the best. God bless.