What to do?

[tracycoll]

I recently was diagnosed with Chiari Malformation type 1. Actaully I was technically diagnosed years ago,but doctors neglected to mention it to me. Now that I found a neurologist that doesn't think I'm crazy, I'm just not sure what to ask him or how to stress to him how severe my symptoms are. I have been suffereing for 6 years and didn't graduate highschool because of my pain. My doctor said my case was mild. My sypmtoms are debilitating and I was wondering what medications are people taking and what are other treatment options. Also what is the best way to let my doctor know how much I'm suffering even if my case is mild?

[*Stormy*]

Hello and Welcome..

The first thing that came to my mind was to tell you that the word "mild" really shouldn't apply to Chiari at all. When they say that, they are usually going by the criteria of the size of your herniation....which they are proving now has nothing to do with how it is affecting the person. Unfortunately, most Drs still believe this way.... So you need to do exactly what Pam suggested, find a good Chiari neurosurgeon!!! If you find an experienced specialist they will realize there are other factors that are involved such as how much overcrowding you have, if you have blockage of CSF flow and how severe your symptoms are. The right Dr will take all of this into consideration before coming to an informed decision on whether they feel surgery will help you.
I was in the same situation as you...my Chiari was not recognized by both the radiologist or my NL when I had my first MRI, I know my herniation wasn't huge so I assume that is why. I was left for 6 months and I kept getting worse and worse to the point that I could no longer walk properly and still had no reason why!! Finally, I had the opportunity to see a great NS and he looked over my scans and dx the Chiari. His main concern at the time was not how big my herniation was but was the fact that the back of my brain was very overcrowded, letting very little CSF flow through. At that point, surgery was my only option and so I had it done within 3 months. Even post-op I still find that I have little success with medications helping my symptoms...I think it is a lot of trial and error!

Good luck!

[pamk5]

Hello,

You need to be evaluated by a Neurosurgeon who specializes in CM...there is a list here in the forum of docs other members have used and liked.  They will tell you if you are a surgical candidate or not.  If not recommend meds that may help.  Having a neuro to follow you is a good thing after decompression but the only real treatment for CM is surgery.  We take some meds that try to control the symptoms but for the most part I have found them to be ineffective.  I have tried most everything.  My decompression will be in a few weeks.  

I hope this helps.
Pam

[klush3]

my youngest daughter who is now 22 was diagnosed when she was 17 just when she was getting ready to graduate, she had to leave school and had decompression surgery. they removed part of her skull due to 11 mm traveling done her spinal cord. She still has migranes but cannot handle taking drugs all the time. she actually only uses tramadol when needed and stays in bed for a day or two. she also started taking the depo shot (birth control) as during her menses it was the worse. she still has issues but is in her third year of college. maybe you could look into the decompression surgery, it will help with the pressure build up.....

klush3