Chronic Pain members - Welcome, please introduce yourself

Hello,
I had a back operation in January 2022, in regard to not having a disk between S1-L5. The repair was successful, but I suffered terrible collateral damage from Sciatica in both legs, Piriformis Syndrome in both buttocks, and Neuropathy in both feet. My surgeon said all this happened because pressure was taken off of the Sciatic nerve, of which had been pinched really bad. He said the tremendous pain I was in was temporary, and would ease up after a while. Wrong!! I have been in chronic pain for almost 3 years. I started out on Gabapentin, and after a while, was put on Lyrica. I take 75 mg in the morning, and 125 mg at night. My pain is so bad, that I have to take a narcotic (Ambien) just to be able to get some sleep. Currently, my major pain is in my right buttock, and goes down the back of my right thigh. Also, the Neuropathy in my feet is really bad. So, I know we are all different, but I would really appreciate some help. Thanks, in advance.

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!

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!

@mhpd9 i feel for you I had a L4-S1 fusion in 2023 because of an accidental twist at 3 weeks and a nurse practitioner a week later telling me I can bend, twist , lift up to 25 lbs I went home and bent to dry my lower legs and had a burning in my back that never improved. After 4 surgeons saying nothing is wrong I seen 2 at Mayo Clinic that found out a screw come loose in my back and their recommendation is a pain stimulator which I’m getting the permanent one put in Tuesday. Being fused into the S1 was a mistake it’s affected the anal nerves and if I rub the tailbone the pain goes to the testicles. I haven’t been able to sleep in a bed for over 7 months because of sacrum is so tender it causes my feet to go numb when laying down. I went thru pelvic therapy which helped tremendously. My legs feel like fireworks going off never know which nerves going off in my legs, even the vibration of the bass in church triggered the nerves in my legs. I went from working full time and about falling occasionally when I bent over to disabled at 52 walking with 2 canes or a Walker and can’t pass up a restroom, if there’s not a scooter in stores I have to leave if I walk 150 feet I’m lucky. I have learned one thing don’t give up if a doctor won’t listen don’t stop until you get an answer. I always print out a list of questions for each doctor to look over and one today said it helps them when doing their dictations. I’m on a lot of medication but seem to get quick relief with Salon Pas patches or now I’ve started using the roll-on you can cover more area. I have to see 2 heart doctors, a Neurologist, Pulmonologist, Hearing, Endocrinologist, Rheumatologist, Urologist, Speech Therapist, Massage Therapist, Pain Management, Physiatrist, Water Therapy, so my schedule is full it was at 5-6 appointments a week for several months. I have to Thank God for a loving wife that’s helped me thru all this. Looks can be deceiving as the picture shows I could show and tell we had 1’ of snow or I could show the whole picture that we only had 6” of snow on top of the curb , I know people judge why’s he on the scooter or using a handicap spot if they only know the truth

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!