She just won't listen!

[Thisonesforthepast]

When I was 10, I was diagnosed with Chiari Malformation.. At the time, the only reason I was even seeing the neurologist was because I was always having horrible symptoms like: numbness in my hands, leg pain, debilitating migraines that would alter my vision and hearing, I was very off balance, etc. Now, they have only gotten worse and I have problems breathing. I had to switch neurologists due to how far away it was and we finally got one in town. Migraines run in the family so this neurologist only treats my head pain. If I tell her the medicine isn't working, she ups my dose or try's another medication. I've tried just about 50 medications just with this neurologist and none have worked, and if they do it's only for a short while. I have an appointment tomorrow and i just want the symptoms to stop. What should I tell her? The last time I had an MRI was at the ER for a migraine lasting a week and I couldn't go to school because of it. This was a few months ago, but they told me it came back normal. I am so lost and don't know what to do.

[Brittany1983]

You need to see a neurosurgeon. Most require you to have a referral,  I had to change nurologist because my first one did the same with my meds. That never worked. I also worked with my OBGYN. We found that mine were hormonal. Hope u get some help soon.

[The_beat_goes_on]

I'm sorry your symptoms are getting the best of you.  

My neurosurgeon, Dr Kim in Houston TX, does not even mention herniation length for chiari malformations -- you either have it or you don't, and so much is left up to a radiologists interpretation (like the one that read yours in the ER!) ... and it can be aggravating as all get out until you find the right doctor!

How old are you?  talk to your parents ... beg to see a neurosurgeon that specializes in chiari.  There is a time and place for a neurologist, and getting to the bottom of Chiari is not one of them.  The neurologist is doing what they can do for you, and that's prescribing medication.  If it's not helping, it's time to see someone else. Selma has a thread of doctors, and I've also found if you google your city and chiari you might get lucky and find a chiari blog with doctor info if you can't find one on the list .. specialists are out there, but you might have to travel a little to find one.

Something that might be helpful with talking to your parents this webinar.  I had another doctor pegged to treat me until I came across this webinar by Dr. Kim in Houston, TX.  It's here:

http://neuro.memorialhermann.org/conditions-treatments/chiari-malformation/

Good luck!!!  Don't give up. (:

[selmaS]

  Hi and welcome to the Chiari forum,

May I ask how old u r now>? What was ur last MRI of, brain cervical spine? Have u had a CINE MRI? Do u have copies of the MRI and the report?  If not, request copies from the facility that did the studies not ur Dr as they will charge u, the facility will not. (request copies of ALL testing going forward) Have ur parents researched Chiari and related conditions?

Sounds like u need a true Chiari specialist and more testing.