1. < Neuropathy

Is neuropathy a sign my stenosis is getting worse?

Posted by tx2az @tx2az, Jul 22, 2023

I was diagnosed with cervical and lumbar stenosis a couple of years ago but apparently had it for quite a while. I had been using "bandaids" (several nerve blocks, epidurals, Gabapentin, Lyrica, well I'm sure you all know) to try to put off surgery. I am under 50, so I think I'm in denial and I'm fearful I will get the answer that I don't necessarily want to hear, but .... here I am.

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darrenp | @darrenp | Dec 30, 2024
In reply to @debduh11 "I was suffering with the same issues as you in my early 50's. I had all..." + (show)
@debduh11

I was suffering with the same issues as you in my early 50's. I had all of the procedures you talk about and then some. I had a laminectomy for my spinal issue. If I had to make the decision again, I would not have the surgery. My spinal issues are worse now. My neuropathy has also gotten much worse. It started in my toes and now has worked it's way up to my knees. I am now 69 and am suffering with much more pain now then when I started. Good luck and I'm sorry that you are going through this.

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Debduh11 I'm also sorry to hear you had a surgery that you regret and that has caused more discomfort. What's becoming clear is that surgery is a gamble. It seems many people are aware it's something to enter into carefully deploying as many checks and balances on it as possible.
Even with all that it seems some outcomes go better than others. I wish you the best in dealing with your current pain and struggles!
At 58 my neuropathy is making its way up to my knees and occasionally I think in bands up around my thighs as well. It's pretty scary to think where this might go in the coming years. I'll keep looking for solutions and trying to make peace with it. I have more thoughts and inspirations generated from your response but I can't articulate them just yet so I'll work on it. Thanks again.

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smn1 | @smn1 | 5 days ago
In reply to @jerrysgirl3 "I find docs are too quick to cut or do other things like transfusions without giving..." + (show)
@jerrysgirl3

I find docs are too quick to cut or do other things like transfusions without giving thought to a patient's medical
History. All the ablations too. They wanted to give my youngest daughter an ablation but thank god the doctor decided to "run a test ablation" first. Found out it would have left her with severe breathing issues for the rest of her life and didn't do it. And guess what? For the most part she is absolutely fine. I read here everyone with issues after surgery. Sad that people's quality of life is severely diminished by doctors who look for a quick way out without determining what is best suited for the patient. Everyone is different.

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Soo true, I'm dealing with the aftermath of that right now... And afterwards try getting an honest opinion or answer. As no other Dr. wants to step into someone else's mess...

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dbamos1945 | @dbamos1945 | 4 days ago

Just my opinion, but when we are diagnosed with NET so many drs. encourage surgery to “get it all”; however, the nature of our weird disease is that it spreads microscopically to other organs.
I have small intestine primary with metastases to liver. After a couple years on 28day Lanreotide, a follow-up MRI showed progression. I was asked to choose btw Afinitor chemo pills or PRRT (Lutathera) series of infusions. Upon second opinion with specialist, I was asked to choose btw extensive abdominal surgery or PRRT, but urged to choose surgical option by the NET Specialist.
I feared surgery at my 79 yrs - odds of good surgery recovery was not in my favor and choose 4 sessions (6mo) PRRT with unknown results of tumor reduction. I am awaiting results of completed treatment now, but still feel confident I picked best option to remain with a higher quality of life.
NET patients have to learn to manage /expected to be asked to make difficult treatment decisions over and over again. No one has a crystal ball… so we must do research, learn from our peers, council with NET specialists… BUT then listen to our gut and go with the treatment that we feel will benefit us most. It is an educated CRAP shoot! We hope for miracles, keep positivity through the treatment, but reality presents us with the fact we have a progressive disease. Our daily hope is that our NET scientists are offering us more treatment options at a rapid pace. We are believers in HOPE! Bette

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