Occipital Neuralgia Online Support Group

Hey all

So, I'm looking at going to a neurosurgeon in SD for a C2 ganglionectomy (where they surgically go into the spine and remove the nerve roots)

Anybody here have any input on this? I know it's drastic but I have an autoimmune disease that keeps me from having multiple surgeries and my fear is that I do decompression and I need more surgeries or something...I do believe my ON is caused by my autoimmune disease(which will never go away and only get worse). My headache neuro is really more in favor of the ganglionectomy vs. the decompression.

Any ideas out there???

Thanks

Trixi

hmmm no I don't but I know a lady who is going to dr jho is that the same proceudre that he does, can u list the dr anme and info here. I would like to understand more about this procedure, I think it is quite invasive way different than the decpmpression or tn or orbital,I had a neur surgeon who wanted to go in anterior and fix c3-4 c4-5 and c6-7 he said i would b in intensive care for 2-3 days. He said once that is over than recovery starts.No not for me.

I'm not sure it's the same as Dr. Jho. I'm waiting for doc to call me back - there's nothing on the website about it - just says he's a neurosurgeon - Dr. Grant Shumaker in south dakota. My headache neuro knows him - used to be up here but left. Talked to his nurse though and she said I can go home in 2 days after the surgery and that the recovery is really simple..... but there's ALWAYS more to it - ya know?

oh yes i know,that weird feeling,sunburn hypersensitive is still there but much better and I am 14 weeks out. I am getting migraines bad again though not happy about that, had 8 already this month not good.I still consider this a success as the burning,stabbing,jolts and bowling ball pressure is gone. Thank God. How are u doing and have u found outany more ///?

Mamalu - I had an ACDF in Feb. 03 at c5-7 in which 2 discs were replaced and a titanium plate and 5 screws were put in. It was a relatively fast procedure and I woke up feeling as if nothing had ever been wrong. I went home the next morning and was back to work after 2 weeks. I have a friend who's having the ACDF this Friday, also c5-7 and now it only takes 45 minutes to do and recovery is shorter too. He also gets to go home the next day. What would your doctor be doing that would require intensive care for a couple of days I wonder? I'd never had a problem with any of the ACDF since it was done and 99% of the time forget I have a plate and screws are there. I started having some issues in early fall of 2010 and this past May the neurosurgeon cleaned out some bone spurs and widened the openings for the nerves from c4-c7 and I've been much better since. We think my ON was a result of nerves swelling in my shoulder and neck. Once I had surgery in May everything felt great except the back of my head. And hopefully that will be better after the decompression in 2 weeks.

RAH> it was called anterior cervical disk fusion, and it was for 3 levels. They said that was the difference between the long stay and icu. They said when u do 1 or 2 its great when u have to do 3 or more that is when it becomes complicated so to speak. They say the others would basically collapse if I only did the 1 or 2 so they said 3-4,4-5,5-6 and my 6-7 needed cleaning up I have stenosis and cervical lordosis and spurs and osteophytes and 2 herniated, blah blah blah, so any way I did not do it I did where my pain was and that was occipital decompression. Ur going in 2 for decompression? Where again?

March 27 here in Wichita.

okay so we at md junction will be waiting for you to reply and let us know how u r feeling and tell us more about your dr. ur in my prayers for a safe surgery

mamalu - when did you have this surgery on the c-spine? How did they see they problems? xray, mri, ct scan? I ask because I also have loss of the cervical lordosis and a slight herniated disc.....hmmmmm Could you let me know more about it?

Gosh, I hope you are feeling better today...I'm really, REALLY sorry that you are having so many migraines... hugs...

thanx,

Trixi

hi Trixi, I didn't have the neck issues operated on. All that stuff is still there :{. I had the decompression surgery with ducic. I didnt do the anterior one as they would have to do 3 disks and told me how dangerous it was and it might not give me any relief so I didnt.