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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
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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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1 ReactionMan, 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.
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1 ReactionSorry, 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!
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2 ReactionsI am so very sorry for what you are going through. There is no way to explain to anyone, how this horrible disease is affecting us. I am a believer, and although God hasn’t healed me, he has allowed me to endure. I will certainly pray for you, and others on this site. Thanks for sharing your journey.
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3 ReactionsHi I'm Joyce from the US. Have chronic and severe pain from the colorectal surgery I had about a decade ago. So far, I have not found any solution to eliminate or reduce the pain and I tried almost everything offered by modern day medicine and no luck.
I take opioids with very little therapeutic value.
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1 ReactionHello, I have had trigeminal neuralgia type 2 for 24 years. My pain is much worse, a recent MRI turned up a menigioma at my skull base. It is not large, but is causing a lot of pain. Any advice?
Hello. New here. I have all kinds of chronic pain due to a few rheumatological conditions. I'm a "pusher" and work through it until I can't. My life is full but getting smaller. That is typical as we become elderly. Frankly probably more capable than most my age even if I can't tie my shoes or open a jar without great discomfort. Anti seizure medicine, biologics, PRN cannabis and opiates can help. All have downsides, but allow functioning. Quality not quantity. Hard to consider what life will be like in 10 years.
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1 ReactionI agree with you.
Hard to stay upbeat lately.
Hi to all,
I'm 65 and have had back issues for 20 years at least. My last 2 falls to my back is what did me in. I have stenosis in from my cervical to coccyx areas. I have spondolothesis in my low back which makes it difficult to stand straight up and to walk. It has dramatically impacted my social life and anything outside of my home. I've seen 2 surgeons who both said my only option is multiple fusions and I won't have that.
I know I need a walker but I'm just too stubborn to use one. I want to learn to walk upright with better posture. I have been on multiple pain medications since 1998 and currently, Methadone for 6 years. I don't like taking it but I can't imagine being without it.
I've had a lifelong passion for all animals and I still do animal welfare work and have 7 cats we adopted in 2014 as orphans and bottle fed. Needless to say, I spend a lot of time cleaning. I am married but have no children. I guess my cats are the substitute. I worked as a CNA in 3 nursing homes and 18 years in a electronics company. I had to resort to disability in 2000. My heart goes out to all of you
Janet (Iowa)