Chiari 1 - cerebellar tonsillar ectopia

[PatSal]

I had GK in December 2007, and was told my balance problems were a separate issue and would not be resolved from the GK. I have walked into a room and fallen from the crowd; I also have migraines and am being treated for same along with balance.  My first after GK MRI mentioned cerebellar tonsillar ectopia; however, the neurosurgeon never mentioned it to me.  Last week I had my second MRI, and was told the tumor was starting to die. I asked for a copy of the MRI for my neurologist.  At the file copy room, I was given a copy of three MRIs and two reports; told to call for the latest written report in two days. January's said there was a "slight ectopia of the cerebellar tonsils - not sufficient for a diagnosis of Chiara malformation". The April report states "again there is noted to be cerebellar tonsillar ectopia".   The neurosurgeon never said a word to me. Had I not asked for a copy, I never would have known. Had the written report faxed to my neurologist who was returning from Japan and e-mailed him. He answered saying o.k. for his office to give me copy.  My separate issue of balance - the symptoms match a lot. does anyone out there have both??

[ppearl214]

Hi PatSal and welcome.

I am one of what you mention. There is one other on this site that also has endured AN plus Chiari 1. My inbox is available should you want.

Phyl

[PatSal]

Phyl,

Thanks, I'm still knew to this site. It's good to know I'll be able to ask someone questions.  I still have to see my neurologist for an actual diagnosis. 

How is your balance?

Pat

[ppearl214]

Hi Pat,

glad to help.  tim on this site, also, has both (well, "had" both as he just had AN surgery as well as Chiari surgery).

another great resource for chiari questions is a lovely lady on this site named Raydean. Her husband endured AN ... her daughter has Chiari.

In my case, I was diagnosed with both at the same time (double diagnosis).

Please know that a Neurosurgeon should be the type of dr to follow you on the Chiari... and will be important to see if tonsil compression is occurring and to what extent... what is the measurements of the compression?  should be provided to you in "mm"... and to make sure no Syrinx exists (build up of spinal fluid).

re: my balance.... well, as you know, AN's can throw it off... as can Chiari 1... I can't tell which is affecting my balance but I claim my cane is my fashion statement and it gets me in front of the lines at DisneyWorld

Good Chiari website to reference is:

http://www.neurosurgerytoday.org/what/patient_e/chiari2.asp

More than happy to email/PM on this site (look to the left of here to see the "icon" for PM (private message) to discuss Chiari.... whole different ballgame than AN's....

again, welcome.
Phyl

[Timjk]

Hello everyone.. Tim here.. I hope I can be of some assistance in your quest for Chiari information.
I was diagnosed at the same time as having bi-laterral AN's (NF2).. The tonsil measured 17 MM. Which is absolutely off the charts.. Not bragging, just stating a fact. It was so long it was touching the spinal cord creating a "Syrinx" mentioned by Phyl. It blocked fluid flow on the right side of my spinal column. This caused severe cramping in my upper body.. Hands,arms,chest.. My surgeon opened up an area at the base of my skull for the tonsil to "live comfortably" and create no more problems.. The cramping stopped within a few weeks after surgery which was Feb.12,2007. If you have anymore questions, please email me.

Tim Kimball

(Hey Tim, Phyl here. I had to delete out your personal email address as updated site Forum Netettiquettes note not to post personal info... but you can share in private PM's/emails.  Hope you understand... and are feeling well. Phyl)