8 month update

Hi everyone,

It has been awhile.  Last time I posted, my symptoms had returned, especially the facial spasms.  Anyway, since then I was diagnosed with cervical dystonia and increased medications of baclofen and gabapentin.  I did some research online and found that it is possible to have cervical dystonia  because of chiari but could not find any other documentation online.  Turns out the facial spasms are from the cervical dystonia. If you are curious, you tube dystonia storm, and you will see the facial twitching.  My symptoms affected the face and neck only.

I then went back to my surgeon for a follow up because my sympoms and all he did was stare at me when I mentioned torticollis and referred me to the neurologist.  Needless to say i left his office a bit frustrated.  I also stopped off at the hospital and picked up my surgical notes but forgot where I put them.

Anyway, I found them  the other the day,  I think I may have to make another appt with my surgeon.  In the findings in the operative notes, he wrote that my 11th cranial nerve was sandwiched between the tonsils and the dominant vertebral artery on the right side.  The 11th cranial nerve is also called the accessory nerve, damage to this nerve can lead to cervical dystonia.  

He never once mentioned that my nerve was being pinched, and all he had to do was look at his notes.  Instead, he looked at me and mentioned my nonexistant stress.  

So if you have read this far, thank you.

Here is my PSA for the day:

I cannot stress how important it is to get copies of all of your records, you would be surprised what you might find.  

Have a Great Day Everyone!!!

[selmaS]

  Hi and welcome back!!! Thanks for the update and for the reminder...surgical notes is one thing many do not often ask for....great tip!!

I hope u r planning on sticking around, and sharing this part of ur journey.....I hope we canbe of some support : )

   "selma"

[joyus12b]

Hi Selma!

I have been busy lately, but I do plan on sticking around.  I am not sure if anyone else has had their tonsils pinching a nerve, but i am curious to find out and see what effect it has had on them.  

Anyway, it was great to hear from you!

[selmaS]

  I know I remember a few that did have that issue, the tonsils were wrapped around causing  constriction....not sure who nemore, but I hope they will reply : )

  Glad u plan on hanging around : )

   "selma"