Degenerative disc disease & pain management

Posted by msjennifer @msjennifer, Nov 22, 2023

Painful

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Hi @msjennifer, you may notice I moved your discussion to the Spine Health group and updated your title a bit (https://connect.mayoclinic.org/discussion/degerative-disk-disease/) to make it more descriptive to help members share their similar experiences. I'd like to invite @coachdavid, @sandiw77, @cookiepic, and @bunnybear to this discussion to share their experiences with degenerative disc disease and how they manage(d) their pain.

@msjennifer, if you are comfortable sharing, where do you experience the most pain and what have you tried up to now to help manage your pain?

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Hi @msjennifer,
Welcome and so sorry to hear that you are dealing with DDD and PMR! For me, it has been almost a guarantee that I feel a good bit of discomfort most days. 😏 It does make me extremely thankful for a simple low pain /pain-free day which I pray are in abundance for both of us! ❤️ I had a spinal fusion about 12years ago to relieve pain and was given a cage, 2 artificial disc, and 4 facet screws. The surgery was technically very successful but my low back pain was completely unresolved. PMR hip and shoulder pain joined the mix almost 2 years ago. I have had multiple facet injections and ablations over the past few years—each providing some temporary relief but my insurance company no longer approves ablations (burning the nerves). I have found stretching, heating pads, essential oils, massage, muscle relaxers and pain meds my biggest help. The trick is not overdoing any of them or they quickly lose effectiveness. Let me know if you have any specific questions. Blessings!
Sandi

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I have had degenerative disc disease for about the past 5 years when I was diagnosed but of course I started having some lower back pain way before then when I would mop floors or just do any cleaning around the house. My Doctor has always said "Surgery is not an option" so I am trying to manage my pain with massage, muscle relaxers (only when needed) soaking in the tub and have been using exercise bike to help lose some weight and to strengthen muscles especially in my arms and legs. I thought maybe losing the weight in my tummy will put less pressure on my lower back. I just recently started taking a supplement called SciatiEase (Sciatic Nerve Formula) and I am hoping that this will help with the chronic pain and I really cannot say until I have been on it longer so will keep you all posted. I am afraid to have surgery because it seems that folks who have had surgery have to keep getting more surgeries and I do not want that either.

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Dear @judyindisguise - First off, I love your screen name. Makes me smile.

I get your hesitancy to have spinal surgery. I had back pain for decades (I convinced my wife 30 years ago that mopping floors and any part of cleaning house was a trigger for me ...). I was also advised by a good friend (who happened to be head of neurosurgery at a major teaching hospital) to defer surgery as long as possible. And I did.

A few years ago my symptoms took a significant and fearful turn from "just" pain (which I could mostly manage with exercise, weight management, and some OTC pain meds) to sudden leg numbness. For me, my personal risk analysis shifted from (1) Avoid surgery at all costs to (2) Avoid experiencing permanent debilitating nerve damage at all costs.

I managed my risks from that point by (1) Seeking multiple opinions. (2) Having the diagnostic equipment be "the best" and most current. (3) Going to the best medical facility. (4) Selecting a neurosurgeon who was acknowledged to be in the top-perfomer category.

I had a cervical and a lumbar surgery (in two parts) in 2023. I can attest that not every spine surgery then requires some unexpected (and undesired) follow-up corrective surgery. I'm not suggesting the recovery process was easy - this is MAJOR surgery - but I am so much better off now (one year post) and I've hopefully put to rest concerns about permanent nerve damage landing me in a wheelchair.

Your case is unique as all spine situations are unique. Dig in. Research. Talk to others. Be your own best advocate. Most of all - maintain a positive attitude!!!

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I too have started a journey with DDD. I also have Scoliosis and have developed nerve pain in L3 and S1. I have tried without success prescription medication and am too sensitive to take them. Gabapentin was a big no for me. I am getting ready for my 3 rd ablation. My spine dr says I need an epidural for the nerve pain that involves the front of my legs from knees down. I went to Cleveland clinic and was told by a neurosurgeon to not shake the hand of a surgeon. I got some great advice on this blog. I was told to try R-Lipoic acid and PEA supplements. My dr had no argument against them. I am on my 3 rd month and they are starting to help me with the pain. This might be worth your looking into. Best wishes.

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@upstatephil

Dear @judyindisguise - First off, I love your screen name. Makes me smile.

I get your hesitancy to have spinal surgery. I had back pain for decades (I convinced my wife 30 years ago that mopping floors and any part of cleaning house was a trigger for me ...). I was also advised by a good friend (who happened to be head of neurosurgery at a major teaching hospital) to defer surgery as long as possible. And I did.

A few years ago my symptoms took a significant and fearful turn from "just" pain (which I could mostly manage with exercise, weight management, and some OTC pain meds) to sudden leg numbness. For me, my personal risk analysis shifted from (1) Avoid surgery at all costs to (2) Avoid experiencing permanent debilitating nerve damage at all costs.

I managed my risks from that point by (1) Seeking multiple opinions. (2) Having the diagnostic equipment be "the best" and most current. (3) Going to the best medical facility. (4) Selecting a neurosurgeon who was acknowledged to be in the top-perfomer category.

I had a cervical and a lumbar surgery (in two parts) in 2023. I can attest that not every spine surgery then requires some unexpected (and undesired) follow-up corrective surgery. I'm not suggesting the recovery process was easy - this is MAJOR surgery - but I am so much better off now (one year post) and I've hopefully put to rest concerns about permanent nerve damage landing me in a wheelchair.

Your case is unique as all spine situations are unique. Dig in. Research. Talk to others. Be your own best advocate. Most of all - maintain a positive attitude!!!

Jump to this post

Dear UpdatePhil, I so appreciate all the information that you have given me and that you did hold off getting surgery until it was absolutely necessary. I am still just waiting to see if the exercise and taking supplements are going to help me with my chronic pain. I sure do miss not being able to walk but I have heard that you can walk again with surgery but, like you said, I have much research to do and I just joined this group which will help me alot. Thanks again and I am so glad your doing better!

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@judyindisguise - Well, thanks. Glad to help in any way...I found that, during my journey, I benefitted a lot from just sharing my ideas, questions, and concerns. Knowing someone out there cared and had a useful perspective was helpful in and of itself.

You described the root cause of your symptoms as degenerative disk disease and you've been "officially" diagnosed with that. That was my root cause as well. I managed my discomfort using weight management, NSAIDs, stretching, and caution with certain activities (bending, twisting, lifting).

I learned that these pain management strategies will only take you so far. Degenerative disk disease cannot "fix" itself. I thought of the decision - surgery or not-surgery - as an exercise in personal risk management. On the one hand, there's the risk of major back surgery where there are plenty of scary stories out there...and some of them are even true. On the other hand, it's possible to defer surgery past the point of no-return where the pinched nerves can become permanently damaged leading to permanent disability. You want to avoid that...

In the meantime, educate yourself, build your medical team (great neurosurgeon and maybe a physiatrist), identify a top-notch medical facility, be the healthiest version of yourself both to stave-off surgery and to improve your recovery if surgery becomes the next best option.

BTW - I am a little over 12 months post a 4-level lumbar surgery and I'm preparing to spend this afternoon hiking in the beautiful woods. No question you can walk and hike again after spinal surgery!

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@judyindisguise I recommend you find a good physical therapists who specializes in backs and begins daily back strengthening exercise program to stay away from surgery. Building your core muscles will save you and PT will help you do it.

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I traveled 6 hours to hear a lecture by Dr. Roland Hazard, hoping for some answers for my myriad of spinal issues. (his new book is available). I think his focus is lumbar spine not cervical spine issues. He had just conducted a survey of docs at the spine conference and I was very interested in hearing his thoughts and the results.
The gist , and he backed it up with all the bells and whistles, is there is no good evidence that anything works including NSAIDs, injections, surgery. That doesn't mean things won't work for some....sometimes mostly for a while and of course if there is a loss of function that's another story in terms of surgery but his message is figure out your most important goals and what you need to do to try reach them. He also believes AI will change everything for spinal pain patients. He thinks in the near future we will know the best treatment for each individual patient based on analysis and most importantly evidence. I don't think he had "THE ANSWER" but that's really his message. You can find him on youtube, his book on Amazon or his presentation at the spine conference on Google Scholar....

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