Tonsillar Ectopia - 8mm

General
1

These are my previous threads detailing my story for anyone interested...

http://www.chiarisupport.org/forum/topics/my-story-2

http://www.chiarisupport.org/forum/topics/i-saw-a-neurologist?xg_source=activity

The last Neurologist I saw (who I thought didn't take my case seriously) finally wrote to my doctor with her diagnosis. Here's what she had to say...

The review of the MRI scan was reassuring. The tonsillar ectopia was very mild (8mm), in fact probably not quite reaching the level of Arnold Chiari grade 1. There were no neurological compromise and no effacement of CSF space. As previously mentioned in my letter of 28th August, Mr ********'s headaches were very much one of medication overuse headache (secondary to Codeine addiction) in the context of chronic migraine.

Here's the thing. I have managed to get myself off the Codeine and have been clean for about 6 weeks now. My headaches are still constant and very bad at times. Also, I still suffer with many of the symptoms a typical Chiari patient does. I stutter a lot, my hearing isn't the best, I can't concentrate for the life of me, I suffer with depression, balance problems and nausea as well as many other symptoms.

I'm seeing a Neurosurgeon later on in the year for a second opinion. Is it true that 8mm is very mild and doesn't qualify for Chiari level 1?

2

Here's a good video from TCI answering this question. I suggest giving this link to any doc treating you. If they are beyond being educated, move on.

Here you go: http://vimeo.com/38189654

3

Hi Shogan ,welcome to the Chiari doctor nightmare.I have a 6mm herniation and some of us have less,but it is the amount of symptoms that seem to be related to CM that really matters.I would really like to avoid surgery ,as I am sure everybody does,but when these symptoms interfere with our quality of life,then this is the time when we should be able to see well informed doctors to help us with the right treatment.Unfortunately this is the most difficult part of the journey,because the amount of well informed doctors seem to be very limited.I`m sure you will be given good advice from others on this site ,they are very experienced .Just ask Tracy Z. Lots of luck.

4

Thanks for the answers. It really helped. :)