Nerve damage after spine fusion

You are in my prayers. I’m very sorry you are suffering so much.
I pray for a medical miracle for you to allow healing and relief.
Tony

@sbtheplumber1
You are too young to be dealing with all of this pain. I am soon to be turning 55 and have cervical and lumbar stenosis and DDD. I had ACDF surgery on my C5-C6 due to symptoms below this level (arms/legs/hands/feet/bladder, headaches, neck/shoulder pain, etc.). What level do you have the disc issue in your neck? Have you had EMGs for upper and lower limbs by a neurologist to check nerve health/strength and to see which nerves in particular are being affected post surgery? Did you have a baseline EMG before surgery?

@sbtheplumber1
Do you know where they injected the spine steroid/lidocaine (what level)? If they don’t inject in the right place, you won’t get relief. They need to know, based on MRI/x-ray what levels are compressing spinal cord/nerve roots. Were you told where doctors believe your source of pain is? Do whatever you can for diet, supplements, etc. to support nerve health. If necessary, you may want to see if the Bonati Spine Institute in FL could help you. They have helped many who had botched surgeries.

I developed hypersensitive peripheral nerves soon after cervical surgery in late 2022. First reacted to metal(basically all) with burning and cold patches, tightening of muscles. Progressed to fabrics(clothing, furniture fabrics and leather). Continue to see neurosurgeon every 6 months as c5-c6 didn’t fuse. Wants to do more surgery through back of neck placing 2 *metal* rods to hold vertebrae. Might help with hypersensitivity, might not. He hasn’t been a lot of help. I had a blood test done privately to determine what metal s I’m allergic to—none. Then metal patch test at Cleveland Clinic—negative for metals. Referred on to rheumatology and neurology(different neurologist). Many tests later dismissed from rheumatology but still seeing neurologist. On gabapentin(pain) and baclofen(muscle spasms) with Tylenol as chaser. One of the medical nurses or doctors said that surgeons are done with you after surgery and don’t want to deal with anything developing afterwards. Neurologist has said I might just have to live with the chronic nervous system hypersensitivity and learn ways to help with the pain. Hope you can find the help you need quickly but you are your best advocate so educate yourself on what’s happening with your body and push hard for treatment including testing. Good luck!

I believe it’s c 7 but others are starting to bulge. I’m going Friday for a swallow study again and the next Friday for a scope , I was starting to choke more and told last swallow study showed the flap in the throat getting caught not allowing food thru like it should. My right shoulder has dropped about 2 inches from weakness in the neck. 2 weeks ago after doing therapy that night my whole right side of my face went in pain the eye socket, cheek and jaw bone, head and neck. It all went away and xcept an occasional mild headache. I had an EMG on my neck in January nothing severe enough for surgery. They never done an EMG on my back and legs my loose disc was enough to convince them to do surgery. Now I wish I would have taken my chances of falling instead of having surgery.

I had a new MRI before the injection and nothing showed so he tried the area I described to him if I remember right. I had thought of going to Cleveland or Mayo or now maybe checking into Bonati . I just finally got my disability last month after 8 months of no income. I also knew I couldn’t make a 3 hour drive to Cleveland and I’ve never flown so not sure I could make it to Florida

@web28 I agree on the doctor not wanting to do anything else! I’ve done a lot of research and will continue! The surgeon said nothings wrong everything’s healed , doesn’t recommend any more surgeries , but never got me out of the wheelchair to check where my symptoms were just a sorry it didn’t help. That makes me wonder if he’s hiding something and don’t want me to have it investigated

Hope not but if you decide to pursue it go to a different hospital system as doctors and surgeons tend to protect each other’s diagnosis. My neurosurgeon tried to say the same, successful surgery and the hypersensitivity would go away. Didn’t refer me to anyone else which meant precious time to possibly reverse it was lost. So frustrating.

@sbtheplumber1
I really feel for you and agree that surgeons and some doctors don’t want to look further after surgery. They seem to give up and don’t want to deal with chronic pain patients which is why you need to get new doctors and 2nd, 3rd, + opinions. You really need to advocate for yourself and not give up no matter how dysfunctional the healthcare system is. I also had swallowing and speaking issues and I believe tied to neurological issues at the cervical spine. You may have cervical spondylotic myelopathy. That is what I was finally diagnosed with. Multiple doctors, surgeons and neurologists ignored my MRI results showing spinal cord flattening/compression. and spinal cord neurological symptoms in arms/hands, legs/feet, etc. which caused weakness, pain, numbness, difficulty walking (like I had cement boots on), loss of bladder control, dropping things/weak hands/poor handwriting, etc. Have you read your cervical spine MRI report to see if it shows spinal cord flattening/compressions, slipped disc or disc bulge pressing on spinal cord/nerve roots, bone spurs/osteophytes, and cervical spine levels with the worst problems? You need to get copies of your MRI reports and CDs so you can take them to new doctors in the future for fresh eyes on your issues. After 6 years of going in circles, I finally went to a new spine surgeon and in my first appointment, he looked at my former MRI and listened to all my symptoms, had me walk for him (which showed my balance issues), did a few simple tests in the office, and said he wanted to get an updated MRI. The 2nd appointment he confirmed that I had cervical spondylotic myelopathy and it was serious and that he recommended surgery or my symptoms will worsen and be permanent (permanent injury to spinal cord affecting all communications from brain to/from your body below the cervical spine levels of compression). This is possibly causing more problems or aggravating your lumbar spine issues (I also have L3-S1 problems and need surgery).

I will look at my MRI’s again when I get home, I cant remember what all was duagnosed I do remember spinal and cervical stenosis and the bulging cervical disc. I’ve been to surgeon #4 and they all say fusion is healed but won’t look into the new problems. I read all the dr reports, test reports, every website I can research which a lot is Mayo Clinic info. Last surgeon sent me to a hip doctor thinking it’s my hip which seen a little bursitis but nothing causing my pain. Now as I set her my right light leg has a pulsation coming and going and the burning is starting in that leg as well