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Chronic Pain members - Welcome, please introduce yourself

Chronic Pain | Last Active: 7 hours ago | Replies (7144)

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@jonc59

Hi!
I've been a long-time lurker of these boards, I feel it's now time to introduce myself.

My name is Jon, I'm 65 & I hail from Upstate NY, near the Canadian border. I'll start my intro with a laundry list of past (relevant) surgeries:
8/06 - C6-T1 fusion
10/09 - L3-L4 Lam.
12/6 -L4-L5 Lam.
5/18 - L2-S1 fusion
9/22 - C4-C6 fusion
1/23 - Left shoulder RTSR
10/23-Rt. shoulder RSTR
2/24 - L1-2 PLIF
3/24 - Right leg perineal nerve untrap
----
So I'm fused top & bottom (C4-T1 & L1-S1), & have been in fairly constant pain since "the big fusion" in 2018. "Severe Central & Foraminal Stenosis" has been mentioned in my most recent neurosurgeons diagnosis.

I've had numerous steroid injections up-&-down my lumbar/SI joints, with limited success. I take Diclofenac 50mg-2x/day, methocarbomal for breakthrough pain, & have been trying to self-medicate with CBD/THC for a while now, also with rather limited success. I've even tried kratom, which really helps but makes me feel wonky, & is unregulated, which makes that option scary.

I really, really don't want to go down the opioid rabbit hole, & after 4 low spine surgical procedures, I'm not sure that we'll be able to cut our way out of my pain.

My recliner is my 2nd. best friend (FYI: my wife is the winner! 😊)

I'm fairly comfortable reclining, but now have very weak legs & radiating pain, I believe coming from SI joints, along with pain & "pressure" @ what I believe to be just above L1 fusion.

Additionally, since an unfortunate stair incident 2-mo. Post right RSTR, my right shoulder is compromised (prone to subluxation, & tingling ranging from my neck, down my scapula, which got cracked during my fall) - this was bad luck, I'm wondering if I farther compromised my C-spine.

So both arms are weak, & it's painful to lift anything but the lightest loads.

In short... Weak & painful arms & legs & low back, along with the accompanying legs neuropathy... but besides that, I'm great! 😁

Seriously, I'm at my wits-end here, trying to figure-out my next move: my thoughts are to try to score a comprehensive spine study (past studies focused EITHER on lumbar OR cervical spine) at one of the major spine hospitals (HHS/NYU-Langone... or of course Mayo, but that's a LONG trip for me). My last surgeon (who describes my spine as "complex"), has graciously offered to assemble a package to present to wherever I choose/whomever accepts my insurance.

My pain mgmt. Doctor seem reluctant to move forward with implanting SCS or intrathecal pump, he calls them "hail Mary procedures", for when everything else non-surgical fails.

I believe myself to be at this point, but I'm not ready to pull the trigger on either, without a full spine study, which I'm willing to travel to wherever, to have performed.

Chronic pain... it certainly is character-building, I feel I'm now reduced to thinking-about only chronic pain - it sucks!

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Replies to "Hi! I've been a long-time lurker of these boards, I feel it's now time to introduce..."

Man, if it weren't for bad luck, you wouldn't have any luck at all. I had L5-S1 fusion back in 2017 to supposedly fix spondylolithesis. Not a pleasant experience. The surgery was supposed to help with my lower back pain due to a ski fall. It did NOT help with the pain. Perhaps it stabilized my spine, but I will never know. It has been said that spinal fusions are one of the biggest cash cows for orthopedic surgeons. Who knows? I thought that I had seen a lot of docs, but you are the clear winner. I wish I could wave my magic wand and do away with all the pain that all us who are dealing with this terrible issue.
Have you had a trial of a spinal cord stimulator? It can help a lot of folks. You do the trial for 5-7 days to see if it will help with the pain. If you get at least a 50% reduction, then the permanent implant can be considered. Wish you well in the coming year.

Sorry, I should have read your post more carefully. Yes, the SCS worked for about 2.5 years, then suddenly stopped. No explanation. I also had the pain pump implanted in 2023. Has never given me an iota of relief. Not trying to steer you away from either one. Just saying that they are not always the answer. I don't know. I am in severe chronic pain. Several drugs help a bit, but not significantly. If I could get opioids, I would likely go for it. We, who are in pain, will sometimes be willing to grasp at any straw to help us. Good luck!

Hi Archie here—
Welcome from one of your fellow sufferers! Your situation is indeed complex but not intractable. As you presented, there are obvious regional deficits. Let me share my experience. I was on huge Oral doses of Oxy and Dilaudid, even morphine, for horrible low back and bilateral leg pain. I had no quality of life, constant pain, etc. Then I walked into a pain management Dr who said „You know, you’re a perfect candidate for an intrathecal pump .“ I have to say, that since the pump implant (Medtronic 40) I haven’t been pain free, but I haven’t taken oral pain meds since 2007. I’m due for a Boston Scientific SCS implant trial this coming Tuesday , so I’ll report back to folks how that helps. I KEEP A JOURNAL of pain levels and life events, I see an analyst for mental health, and I try to read and stay informed about developments in my problem area. Good luck- be your own best advocate—you are very articulate, so don’t let that slow you down, and assemble the best treatment team you can.
Best, Archie