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C-2 injuries

From: Linda497 - on 05/02/2010 2:59pm

I have had multiple traumatic injuries to my head/neck from ages 12-22 and significant pain since age of 30 and am now 58.

I have C-2 pain distribution and C-2 nerve root block was positive for pain. A C-2 ganglionectomy is recommended. There is little (or current) information on this procedure. I would like to talk to someone who has this type of pain and see what their experiences with treatment/sugeries are.

There is a great article under website of Dr. Jho.com under "occipital neuralgia" (describes me to a T) where he does not believe in ganglionectomy procedure but instead a minimally invasive C-2 decompression.

I have consulted with Dr. Jho who would only do it on me after first doing a C5-6 anterior foraminotomy as I have C5-6 stenosis. I have various problems all up and down my spine and states he will start only with problems he can identify and see by MRI. Epidural injections all up the spine only provide minimal and short-term relief at the C1-2 level. Occipital injections provide no relief.

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on 05/15/2010 3:49pm

You must live in Pittsburgh. I am not familiar with this procedure but am familiar with Dr. Jho. I had requested a consultation years ago as I was in continuous severe pain. After 3 back operations, repeated injections, therapy, and every treatment possible I was told by Dr. Jho that surgically there was nothing he could do surgically. But, I still saw a 2nd and 3rd doctor who all had the same opinion.

I would suggest seeing another doctor and if you live in Pittsburgh I would highly recommend Dr. Whiting. He is exceptional and its worth getting another opinion from him

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on 05/22/2010 7:16am

Hello Linda,
I have occipital neuralgia and am in the c2 neuralgia forum on mdjunction where there are many people who have had procedures including gangliomectomies and decompression surgerires. I am considering decompression surgery but I too had to stabilize my neck first. Amazingly after my c3-c4 fusion recently, my constant severe light and sound sensitivity decreased and allowed me to sit in the sunshine for the first time in years. So I do see that stabilizing the neck before decompression is probably right.
There is also the new neurostimulator implant that is wireless and far more doable than the old wired ones that often had to be surgically adjusted due to wires moving etc. Head over to the mdjunction forum there are the most people anywhere I have researched with occipital neuralgia... they are all suffering like us and offer any support/information on procedures specifically related to occipital neuralgia ... hope this helps
Chloe

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on 10/22/2010 8:49pm

Thank you Chloe for your input and assistance.

I am not very good on computers (completely self taught and pretty poor at it!) and I am confused by the term "mdjunction". Is there a specific web-site for it? I can google anything!

I recently went to LSI (Laser Spine Institute)-- you see ads fo them everywhere--for a free MRI review and had mixed feelings. They do an excellent presentation with visual's and it may worth getting an initial eval. and understanding of minimally invasive procedures they do.

Linda

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on 12/18/2010 1:10pm

Chloe---You e-mailed me some time ago about your condition of occipital neuralgia and belonging to the mdjunction and to consult them about treatments for the conditon including ganglionectomies and their success rates. Unfortunatley I am cow-braindead about computers and don't understand how to find "mdjunction" ton conslt with them on the web. Can you spoon-feed me a little bit? Thanks!

Linda

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