I can't get properly diagnosed and I'm spiraling

It’s been a little over two years since my surgery. My neuropathy started setting in about 2 months before. I was also losing range of motion and started falling. I lost my ability to write. After surgery I regained some of my range of motion but not all. Balance has improved some, but I have to use a cane or walker to be sure about not falling (also lumbar stenosis issues contributing to my standing/walking issues). I regained strength in my grip and some hand dexterity returned, but still can’t write very well. The neuropathy (hands, arms, feet, legs) has just gotten worse and I have tremors in my left arm. My neurosurgeon confirmed I have some spinal cord damage from the compression likely causing these ongoing issues.

Everybody’s recovery is different. As your surgery heals you hope to get better. Full healing is about a year, so at 16 days you should still have a lot of hope. I wish you the best of outcomes.

Thanks for your reply and well wishes @dave130
Lumbar stenosis is another malady I share with you .
My surgeon has talked about doing a lumbar fusion at a later date . I was wondering why ( since you are still having lower body issues ) you haven’t had the lumbar fusion .

Good question. The short answer is the surgery scares me to death. So I’ve done my own risk/benefits analysis.

My MRI shows severe lumbar stenosis at L3-4, L4-5, and L5-S1, plus spondylolisthesis, and degenerative scoliosis. My neurosurgeon said he would perform multi-level decompressive laminectomies and fusion. He said he could help me or hurt me, no promises. So, if it doesn’t go well I could end up worse off than I already am.

Currently, my lower back symptoms are the added walking/standing difficulties, and some occasional sciatic nerve pain, But, I can sit and sleep comfortably. I don’t know that I want to risk ending up with failed back syndrome from the surgery and risking that ability to continue to sit and sleep comfortably. So, for now I’m waiting and watching for any worsening of symptoms. My surgeon supports my decision to hold off on that surgery.

I am not sure I recommend the spinal fusions. I have had two: 15 & 20 years ago and a more recent neck fusion. Degenerative Disc Disease and Stenosis~~~That said , I have extreme Nephropathy and can't seem to get physicians to help. I am 83 and it is not a pleasant situation.
Kind regards, Janice

Good evening @janicemjackson,
It is great to make your acquaintance. I am re-reading your statement and sensing that I, too, am in a not-so-pleasant situation. I will be 81 next month and have had 3 spinal surgeries including a lumbar laminectomy and a cervical fusion. What I am now facing is a progressive increase in SFN (small fiber neuropathy) symptoms which unfortunately includes fatigue and pain as well as numbness and tingle tangles.

And no.....at this time I am just "on hold". I know there is no surgical option and I don't know of any new medications. I try very hard to do some stretches every day and am waiting for spring so I can begin my river walks. Please let me know if you have anything to share.....be it questions or responses.

Thanks and may you be safe, protected and free from inner and outer harm.
Chris

dave130 - I too share many of your same back issues and your surgeon, is being honest about the potential outcome. In past 2 - 4 years, my walking and standing difficulties have increased in particular with balance. I am lucky in that my neurosurgeon will not operate due to uncertain results. Second opinion confirmed the first. My thinking was could the back issues cause the PN? Like pinched nerve? Both started around same time. Multiple MRI's. Both neuro docs said no. Wonder how many people have PN who also have back issues.

Sorry to hear you are going through this. I have similar situation. When my feet burning sensation started in 2017, the first neuro physician told me that the burning sensation as per my lumbar MRI was due to spin issues. I initially focused entirely on my back issues until Mayo Clinic diagnosed me after one year with ideopethic small fiber neuropathy. According to them while I do have spine issues, they are not serious enough to cause burning sensation, severe pain and numbness of such degree. Since then I have been experiencing progressive deterioration on a daily basis despite all kind of remedies and therapies including major diet changes, intermittent fasting and supplementation for extended period of time. The situation now is that mobility has become a huge challenge for me. I cannot walk from my bed up to the bath room. I am confused whether my first neuro physician was right in blaming my spine to be the culprit becsuse I didn't see any improvement after being diagnosed by Mayo clinic. I can safely say that one of them misdiagnosed me. I am now thinking that I need to start concentrating on my spine issues again although I don't have any major back pain.
I wish you and all those suffering from this debilitating disease a permanent relief.

Your situation does sound SO FAMILIAR!! I have always thought the Neuropathy was due to all the activity on my spine & Drs. agreed. I now have standing & balance issues, as well~~~but I recall I am 83. No more surgeries for me!! The MRI's recently conclude the mess in Spine area.

Thank You Chris~~~You and I would do well to become better acquainted! Kind regards, Janice

janice - In many ways, in my opinion, this all comes down to liability issues. A surgeon must have a concrete feeling that an operation will improve the standard of the health and life for the patient. And unless he/she feels that can be accomplished with minimum risk, little chances of a procedure being performed. In my case, I walk into the office of a neurosurgeon, no assistance, no walker and yes in pain. If a procedure is performed and after that, I'm worse off, then what. Two top neurosurgeons in my area told me the same thing.