Severe lumbar nerve pain

Thank you for answering. Did/do you have significant degenerative scoliosis? Is that why they wanted such a long fusion? The surgeon said that the surgery is very hard. Like you, I wouldn't want to do a long fusion either. But if this stemmed from scoliosis, did they discuss in what way that may impact a progression in the future?

I'm not Phil, but I really feel for you. I can't imagine how frustrated you must be. How could you tell your tailbone was misaligned? With my scoliosis, I'm sure my whole pelvis is affected but my tailbone is something that has been bothering me. No numbness.

Sorry I clicked reply after your post and it tagged phil(who knows maybe phil needed to see it lol) The pelvic therapist works internal and felt it misaligned, after realignment I can tell now when it’s out my bowels won’t hardly move. I always thought pelvic therapy was just for women until I seen it online , then the next urologist visit she mentioned it to help with my chronic prostatitus. I was at the point if it helps me I’ll try it

I was never diagnosed with scoliosis. Rather - it was stenosis which I managed for decades with exercise, use of NSAIDs, and occasionally a bad stretch of pain.

When I started experiencing sudden-onset dead leg I grew concerned about personal safety. What those MRIs showed was advanced stenosis throughout my entire spine (I saw the pictures myself) with some subluxation which was the root of the dead leg situation.

The spinal column degeneration was so severe and so pervasive (the entire spin...) the doc wanted to decompress and fuse about everywhere. After researching, I decided to do about half the job and cross my fingers that would be enough.

As for future progression? That is unknown and unknowable, I believe. The degradation (over the past 30 years) has been non-linear. Might degradation slow? Or stop? Or accelerate? No one can accurately make that sort of prediction.

What sort of docs are you talking to now?

Funny on how we can make assumptions about specialists! I'm so glad that the therapy is making you feel better. That too often may not be the case. I'm wondering if you have scoliosis as I know that can have a lot of impact on your pelvis well outside just spine issues. I'm very hopeful this positive progression will give you lasting changes.

I'm seeing the ortho who did my cervical fusions. In a follow-up appointment, maybe a year ago, I showed them my waist which was really deformed and honestly had shocked me. One side was sunk in and the other completely straight. They did x-rays and told me I had scoliosis. I had no symptoms. I had previously been told I have severe degenerative disc disease. Any time I have imaging done for other reasons, a radiologist will point DDD out. But I can easily feel an abrupt shift of vertebrae in my lower spine. Concerned the symptoms came on so suddenly. For an all together different reason, I was given prednisone last week. That absolutely helped calmed some of this down and I'm taking that as a good sign. But I am taking your experience very seriously and if conservative measures don't work, I would like to see a physiatrist. I can also go back to my neurologist and ask if the NCT's would be beneficial. I suddenly have started having bilateral carpal tunnel pain that is waking me up. I had it so severe in my right that I had to have surgery about 20 years ago. And my neck has continued bothering me. I feel like my entire right side of my body is in pain lol. I have a bad sinus obstruction causing pain in my face on that side too

I’m going to see my primary care doctor Tuesday I wil ask her. I’m dealing with bulging cervical disc also, my right shoulder has dropped about 2” . I am starting to lean forward in the neck and shoulder .

Your statement about your shoulder dropping and noticing some leaning forward...It's good you've become aware of those things as that will help you frame the decisions ahead of you.

After my lumbar fusion and decompression - the neurosurgeon explained he also was able to straighten my spine ... something I was only vaguely aware of needing. Looking back at pre-surgery pictures I can easily see that same sort of shoulder down and leaning forward appearance you describe.

Good luck with your upcoming PCP appointment. For me - it took many different consults over many years before I accepted the risks of surgery were less than what seemed the near certainty of additional (and maybe accelerating?) spinal degradation.

Keep digging until you're satisfied you've covered all your medical bases.

I’m a pipefitter and always carried the pipe on that shoulder, then one day I noticed my lunchbox had been sliding off my shoulder every time I went walk in to work. I was told by a neurosurgeon it was from the bulging cervical dis, but non of them want to do anything, that side of my neck gets so tight the massage therapist tries to get me to relax it but I can’t(that’s another issue my muscles will not relax ) Everyone thinks I’m crazy how do much health problems hit me last year with the heart, lungs, back, eye, sinus, narcolepsy, sleep apnea, Sjogren’s, hearing , prostate, Spinal Stenosis. I have to check with my primary a Tuesday about my Kidneys my heart docs concerned about my numbers being low on the last blood test Some of these I’ve had for a while! I have been having anywhere from 3-6 visits a week for over a year with physical therapy 1-2 visits a week. Emergency room knows me well from back pains to kidney stones. I never take prescriptions they offer I just want fixed and make sure nothings wrong I’m taking to much meds now. Sorry for the ramble it’s nice telling the story that might help someone else not be put through what we’ve been through

@sb4ca I noticed your comment about carpal tunnel pain waking you up. I wanted to share my experience with thoracic outlet syndrome that very often wakes people at night because they are laying on the shoulder compressing the same nerves that affect carpal tunnel. With TOS, when you raise your arm up to or above shoulder height, it starts to compress the nerves and vessels in the shoulder (between collar bone and rib cage). If you sleep on your side, your arm may be out at shoulder height for balance. Also neck positions can being it on if the pillow height isn't keeping the neck aligned while sleeping. I would wake up at night with an arm totally numb and it could be the one on top that I was not laying on or the one I was laying on. This involves both diminished circulation and compressed nerves.

I know you're mentioning scoliosis, and if that is affecting your chest and rib cage, it may be altering the space between the rib cage and collar bone perhaps making one side a smaller space. Some people naturally have less space there, and injuries like a whiplash can cause TOS injuring the muscles where the nerves are passing through from the spine to the shoulder. Your neurologist is a good specialist to ask about TOS. I have also had carpal tunnel surgery which didn't solve everything because TOS was missed many years ago.

The good news regarding TOS, is conservative treatment with physical therapy and Myofascial Release is often better than a surgery that would just create more scar tissue and may not solve anything. This is how I got started in Myofascial Release. I was told I had a slight thoracic "functional scoliosis" that was caused by fascial tightness pulling harder on my left side. That has resolved because of MFR work with my physical therapist. I don't know if I've told you about MFR before, and I wanted to mention it.

Here is our discussion on MFR.

Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Jennifer