C0-C2 fusion

C0 surgery, isn't that pretty risky? If something goes wrong it would mean either becoming a quadraplegic or dying wouldn't it?

This comment is immensely unhelpful. I had a C1 fracture that failed medical management and I have had a host of neurological symptoms and pain since under going a C1 ring fixation and unfortunately have craniocervical instability. I’m just looking for honest opinions from someone who has experience with C0-C2 fusion and their quality of life.

Hi, @jnj59. It seems wise to talk with others who've gone through a similar situation before undergoing a major surgery.

Here is some general Mayo Clinic information on spinal fusion that may be useful:

- Spinal fusion https://www.mayoclinic.org/tests-procedures/spinal-fusion/about/pac-20384523

Fellow members from around Mayo Clinic Connect who have mentioned a similar type of fusion may have some input on the procedure and if they'd do it again. Please meet @relax2 @snowmass @jola13 who may have been through similar procedures, are considering it or walked thought the journey with a loved one. @jenniferhunter also may have some thoughts for you as you consider your options.

Is this a procedure your doctor has recommended for you, or are you researching on your own?

@lisalucier thank you. It’s recommendation/discussions with my neurosurgeon. I’m going to try a C2 nerve root injection first. I’ve been in PT for 5 months. I’ve been to acupuncture & mayofascial message therapists. Obviously wanting to exhaust every conservative medical management before thinking of a major fusion that is life altering. But if I’m honest this whole process with the traumatic fracture, failed conservative management & subsequent destabilization resulting in basilar invagination, myelopathy, cranial settling, etc has been life altering. I’ve had lots of imaging done since my C1 ring fixation. With persistent ligament damage and instability, I may not have a choice other than to fuse & stabilize everything. Would like to find someone that hopefully had a positive outcome from C0-2 fusion to share their experience.

@jnj59 I'm very sorry that you're having to deal with something like this, I wish you luck.

@jnj59 That has to be a precarious place to be! I have a fusion from T8 to L2 ( in 2020&2021) and now am having cervical issues/degeneration. How high it goes he is unsure, so he ordered a SPECT-scan. He said it would get better coverage head to tail than a CT or MRI (being so much refraction from the titanium railroad !) Im having issues now with autonomic issues which apparently are at your same area. Just wanted to ask if you've found the Reddit groups? Ive been there recently & MANY folks on the spinal fusion/long spinal fusion groups who have been helpful as well. The more resouces the better! If I may ask, what symptoms have/are you struggling with at that level? I sincerely hope you find great support & answers to help you with these difficult issues!

@317wawr I’m fused from S2-T9 and then had a cervical fission from C5-C7 last September. I was having a lot of pain between my shoulder blade’s and down my arm’s. The surgery did help, but as time goes by it’s coming back with a vengeance! I keep thinking with every surgery that I will get a lot of relief from the pain, but this was my 16th spine surgery and I’m worse off than I was when I had my first one 26 years ago. I hope and pray that you find the relief that you’re looking for! Because I’m about ready to end my journey permanently!! I can’t take the pain anymore!

Ohhh @paulyvan1, I feel that way quite a bit, but mostly when the pain is bad, not sleeping. I am 61 & I Seriously cant remember a day without pain to some degree or another. But I DEFINITELY know Im not alone in this. For me it helps to sit outside, to try & help someone else, just like this! Purposely finding things that bring me joy! Even if its from my recliner or bed. Luckily im still able to work a little & it causes me extra pain. But I Love what i do!! Doing that makes me forget my pain, even for brief times...Ill take it! Keep it one hour at a time, one day at a time. When you've been through multiple surgeries (16 is unimaginable for me), we know that there are worse times & better times (albeit Far from great). I SO Hope you find your happy spots & maybe even small joys. We ALL feel alone...but we are right here with you! Please share your feelings with trusted people. Or like you did today! Try not to bottle it up. We need to be kind to Ourselves too!!!

I am having this surgery tomorrow, I’ll report back let you know how it goes. I’m at Mayo in PHX.

@britt0220 thank you!