Looking at neck surgery despite neurosurgeon's hesitation...

Hi @radar614, I’m sorry to hear about your pain and I feel for you. I tried various treatments, had injections and ended up having two surgeries, but I’m still in pain, although it’s a different kind of pain from what I had before. I had a problem between C3 and C6, I have titanium between C3 and C6 (plates, cages, screws, disc). I’m not the right person to ask for advice. But before deciding to have the operation, I consulted six neurosurgeons. My advice would be to at least seek a few second opinions. Two of my neurosurgeons were against the operation, four were in favour, and of the four in favour, three had different approaches. It wasn’t an easy decision… but I think it’s important to consult more than one specialist before undergoing cervical surgery. Good luck, stay hopeful, and a big big hug!

So sorry you are going through this ordeal. In my opinion, I would never have a surgeon operate on something they are not sure about. I had 4 different 2nd opinions before I settled on a doctor (with the help of my pcp). I was like you 4 different doctors, 4 different opinions. 1st-surgery within 2 weeks, 2nd-surgery then a 2nd surgery, 3rd wasn't really sure and said he "guessed" he could just watch me, 4th has been my doctor for 3 years now. I have not had surgery (and hope to never). YOU need to do what's best for you, perhaps you could have your pcp assist in making your decision. I might suggest that you select 3-4 specialists from different medical institutes and focus on what they have to say. I would not go with a doctor who was not sure of themself. I wish you relief and the insight to make the best decision. Best wishes.

Get a second opinion from another neurologist, or better yet get a referral to see a neurosurgeon. It took 4 neurologists and 2 neurosurgeons a total of 8+ years to get myself to the point that I'm currently at. The first one I saw did EMG and conductivity testing, only to tell me that I didn't have neuropathy, but he couldn't tell me what was causing my problems.
On my first visit to a neurosurgeon he looked at my MRI's and told me that I needed to have surgery on my neck. He did a spinal fusion procedure at the C5-C6 level using plates, screws, and a piece of donor bone.
About 18 months later my symptoms began to reappear, and I was referred to another neurosurgeon because the previous one retired and closed his practice. He did another fusion procedure at the C7-T1 level, again with plates and screws as well as a piece of donor bone.
See another doctor and request new MRI's of your entire spine if at all possible.

@mrmacabre Thank you! Yeah, ironically the EMG I had done last October showed nerve damage/issues, but the one in February showed only mild carpal tunnel 🙁 It is a neurosurgeon who has twice now told me my MRI shows the discs aren't bad enough to have nerve compression, but since all else has failed or been basically ruled out, she will do surgery. It doesn't sit well with me, but I also feel like having an MRI laying down may not show the same as seeing it upright, since laying down feels better. I also feel like the vascular surgeon really breezed through my appointment and I'm not convinced that thoracic outlet syndrome couldn't still fit more of my symptoms (especially now being bilateral?). Anyway, thank you!

Its your neck. Get another spine Dr. a fellowship trained spine surgeon. Neurosurgeon or orthopedic spine surgeon. Good luck!!!

Fifthteen years ago, I was diagnosed with severe "inoperable" degenerative disc disease in my neck. I had already gone through years of epidurals with some success. Then, they stopped working. I was desperate! The pain I was experiencing was unbearable. A highly regarded spine surgeon put his hand on my shoulder, and told me he would not operate. When I asked him what I could do, he said there was only one possibility. Unfortunately, that was an extreme procedure that would put my bones at risk.

Through research, I found a chiropractor that specialized in functional medicine. It took two years and a lot of money. However, he brought me out of a life of extreme pain to resume some normalcy. Since that time, I found a PT that not only gives you exercises, he also does a type of joint, bone, and muscle massage that during the session is painful. However, it does bring great relief following the treatment. He also recommended a "CHIRP" roller for my neck. It can be purchased at the Amazon website. The roller is a form of acupuncture without the painful needles and has really helped my neck. Now I rarely see my chiropractor. If anyone lives in the Greensboro NC area or within an hour's ride, I will gladly give you my PT/s name. By the way, it was my neurologist that recommended him!

Before having any kind of surgery that cannot predict a favorable result, please try other methods as I have done for your neck.

Hi,
I feel your pain. My first recommendation is get a referral to Johns Hopkins. Specifically to Dr. Hang Lee. He is a well-known cervical surgeon. Get the referral from your PCP.
I’m not sure if it can be done in your case, but whoever you end up going to, see if they can do an anterior approach. The recovery is a breeze. It is minimally invasive, less muscle disturbance and no stitches.
Dr. Lee did my first surgery five years ago with an anterior
approach for two levels. Seven weeks ago I had a posterior approach to fuse C2-T1. I have cervical myelopathy where the vertebrae slip onto. my spinal cord and interrupt the signals to my brain. My balance was bad, I looked like a drunken sailor when I walked and occasionally I fell into people while talking with them. Not fun. I also dropped things; knocked things over due to not being able to control my hands. My fine motor skills were/are shot. I’ll not kid you, the posterior surgery is a bitch. I was n the hospital for three days for pain control. I was on opioids for two weeks to manage pain. I’ll be in a neck brace until mid-June (surgery was 2/19). With a posterior approach, the surgeon must move/cut muscle to access the spinal cord. So, with your levels that need to be repaired, I suggest you advocate for a Dr. that can do an anterior approach. That’s why I ended up at Hopkins. The neurosurgeon at the “excellent” teaching hospital in my town wouldn’t do an anterior approach (for my first surgery) so I sought out Dr. Lee. He is an hour-and-half from where I live but worth the drive.
I wish you luck. Our symptoms are so similar please advocate for yourself. It sounds like you have been doing a good job at that. Thought I would throw one more possibility your way.

All dics gone in Neck & after yet again another MRI scan shows C1 C2 stenosis which by all accounts is too close to brain stem to operate Ive also the same issues at Lumbar region L5 to L1 with lots of inflammation at L1 S 1 Stenosis ..the pain is off the charts & has left me with pulsating tinnitus bladder/bowel issues Leftside effected more so than right.left arm hand numb pins & needles .pain wakes me be it from the hand neck & back..what ive noticed lately walking in a zig zag kinda way Veering off have no control over it & have to stop then start again Looks like ive had a few too many ..the full spinal i had showed too much inflammation blood tests done to rule out Infection..Major surgery i had a few off Steroid injections dont work & Consultant called me an In betweeny ..which doesn't help so I deal with it till it gets to a point i can't Which has been a while now..ive direct number of Neuro surgeons secretary so if I find im getting worse I need to phone but having researched many articles it doesn't give me much comfort that I could be worse off if surgery goes ahead Catch 22 🙄