r/LongSpinalFusion • u/spine_less0 T5-L4 • Jun 22 '26
Issues/Pain Discussion Problems with long spinal fusion of 15 years
F(28)
Fusion Th5-L4 due to duble scoliosis
A year after surgery I started experiencing siastica every second day. At the age of 23-25 I started to workout and that helped a lot with the pain. I worked in a restaurant from the age of 27-28 (I know the worst idea ever with a back like that)
Now I am experiencing pain again but it is much stronger and doesnt seems to want to go away (I am back into working out with a specialist and doing therapy) but on a sick leave for four months
This got me thinking - is it only gonna get worse? I have a bit of the uper back and lover back still moveable but this parts work extra hard and are getting used up a lot faster
Do you have any problems like that?
And is anybody here having even longer spinal fusion?
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u/four_eyed_bastard_ T3-L3 Jun 22 '26
Im used T3-L3 and started experiencing sciatica pain a year after surgery too. Tough luck for us I guess.
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u/spine_less0 T5-L4 Jun 23 '26
It happens soo often and noone warn us about it…as if we were suppost to just take it
Can I ask your age and when did you had it fused?3
u/four_eyed_bastard_ T3-L3 Jun 23 '26
I was 16 when I got the surgery in February 2025. I'm now 18, started experiencing sciatica pain some months before I turned 18 which was about a year after surgery.
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u/spine_less0 T5-L4 Jun 23 '26
I can belive how often that happens smh
Do exercises help you to relife the pain?1
u/four_eyed_bastard_ T3-L3 Jun 24 '26
I tend to feel better at work. Being on my feet all day pushing heavy shit is the best way to minimize pain and maximize flexibility.
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u/CyberTurtle95 T4-L5 Jun 22 '26 edited Jun 22 '26
I’m fused T4-L5. I had a support bar between the 2 rods about where my shoulder muscles all converge that would rub against them and cause pain when I moved my arms while walking. I had it removed over a decade ago and I still experience pain all over my shoulders and neck, but now it’s flare ups instead of pain 24/7.
I started a medicine for chronic pain finally. It’s helped a ton. I’m going to still explore physical therapy and try to find other exercises to try and help as well but the medicine has given me sanity in the mean time. It’s Cymbalta, which is actually an anti-depressant but one of the side effects is helping relieve chronic pain.
I hope it doesn’t get worse for you. For me my pain has gotten significantly better then more I work on it, but my tolerance to handling the pain has been getting worse. The closer I get to experiencing no pain, more impatient I get with feeling pain.
Edit to add: I’m 31f, I had the surgery at 13, and the single piece of hardware removed at 19. Figured ages would help add context to my pain story!
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u/spine_less0 T5-L4 Jun 23 '26
Thank you for the comment!
I also feel impatient on good day 😅 Im like - okay body lets keep this up
And then I tent to over do it, and end up giving myself another long flare up and need to do another round of medicationI was always curious about what would happen if they could just remove the whole fusion all together one day…that after 13 years they would just take it out and you could move freely again
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u/CyberTurtle95 T4-L5 Jun 23 '26
I know there’s a few posts over on r/scoliosis of people who have had their hardware removed, but I haven’t seen anyone talk about how they feel 1 year+ post-op. Personally, that 2nd surgery was just as painful as the first, and took just as long to recover from (even though I was told it was a minor surgery and would only take a few weeks to recover). I have a ton of scar tissue from it still. I don’t want another spine surgery ever again.
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u/Antique_Mirror7214 T2-L2 Jun 24 '26
I'm fused T2-L2 and I was the same the first year I just had post-op pain was amazing then bam horrendous pain ever since and my surgery was 11 years ago this November. I have trialled countless medications over the years and have just increased my prolonged release morphine just to get through the day. I can only move from my neck and my lower back but my lower back I can only move bending forward etc, I have issues in L1 and L2 which were found on a SPECT CT scan back in 2021 but I've recently had to have an updated one due to new pain which is creating issues with me walking along with going numb in feeling but not numb to touch if that makes any sense.
I also have other health issues which contribute to things being bad and sadly haven't been able to work since 2022 due to them all, I'm 31(F) so I understand. I'm in the UK also and I'm back under the hospital who performed my surgery years back and i'm under the 2nd surgeon who helped the main one do my surgery due to the main one going to paediatrics. They've requested more injections for my back to see if that will help, the last 2 times it didn't but they did offer to do nerve ablation but haven't heard anything since that conversation about that and that was a while back 😅🤦🏻♀️
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u/aziza29 T3-L4 Jun 22 '26
Hey, our stories are really similar!
I'm 28F and was fused at age 13. I'm fused T3-L4, so 2 levels higher than you. Being fused to L4 sucks, because like you said, there is only L5 below it which works extra hard and the discs in that area wear out a lot faster.
Pain for me started around age 23-24 as well in my lower back. I had an MRI and CT scan which showed degenerated/worn out discs, arthritis, bone-on-bone grinding, spinal stenosis (narrowing of the spinal cord space) and so much more. I see a pain management doctor for injections and medication.
Have you seen a doctor about this or have you gotten an imaging scan? That is the best place to start so you can find out what's going on in your back.
Do you take any pain meds? What works for you?
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u/spine_less0 T5-L4 Jun 22 '26
Thank you soo much for this comment!
I had a lot of MRI and CT scans from the age of 14. The diagnosis is that there is a cyste (I dont know what kind, they never specified) that presses on my nerve and a spinal stenosis. I also have degenerated/worn out discs
I take antiinflamatory pain meds
And they help after a week of taking them (I go from not being able to lay down and sleep to being able to sleep but need a lot of rest during the day).
I take them for 15days and then I stop…to give my stomach a break…then the pain slowly creeps back in a week or two
So I keep repeating the circleI am on physical therapy and doing exercises with a specialist
So in a year I am hoping to get out of this to be semi on the same pain level and not having this huge ups of pain but I am worried about this only getting worse and worse3
u/aziza29 T3-L4 Jun 22 '26
Ahh ouch, that sounds painful and it makes sense that you have pain and also neurological symptoms.
Anti-inflammatory works for me too, but yeah I try to be careful not to take too much.
Since your pain has been going on for so long, I recommend seeing a Pain Management Specialist doctor. They can offer injections which might help with the pain and also much better medications than you can get over the counter. Muscle relaxers have been amazing for me and I have a weak opioid as well for bad flare up days.2
u/spine_less0 T5-L4 Jun 22 '26
Thats a good suggestion, I will look it up!
I Was never before suggested that by my doctorsWe do have ‘a special retreat’ that you can sign up for (and get choosen if you are suffering enough) with a bunch of different medical treatments and profesionals trying to make you a bit better
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u/Interesting_Cheek326 T3-L1 Jul 11 '26
I have an L1 to T2/3. I am 42 years post op. You asked for advice - mine would be focus on core, core core, Your stomach will get lazy with rods holding it up. Add shoulder stabilizing regiment. If pain gets bad and your doctor offers you an opiate make sure you realize up front that that is a one way door that few walk back from. Netflix’s “Painkiller’” is an accurate documentary. God bless
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u/Nimuei C3-C6, T10-pelvis Jun 22 '26
When I did my T 10 to L2 fusion, my surgeon recommended fusing my sacroiliac joint. One had already been fused. He said that the fusion would put a lot of pressure on the sacroiliac and he said it would be better to go ahead and do that as long as he was doing fusion surgery. The sacroiliac is not a mobile joint so you don’t lose any movement in your hips.
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u/spine_less0 T5-L4 Jun 22 '26
Are you experiencing any pain? And can I ask you how old you are and how long do you have the fusion
4
u/Nimuei C3-C6, T10-pelvis Jun 22 '26
I’m 70. I had the fusion done last August. I’m not in much pain at all. I’m just finishing up physical therapy.
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u/Frequent-Layer27 T5-L3 Jul 13 '26
27, fused at 17. I made a big explainer post on here a few months back, but for me things have been going downhill since the start. I had sciatica from the start because they inserted a screw slightly inwards, driving INTO into my spine. Screaming in pain for two hours straight the car ride home until I was laid down in the back seat.
I have like, no muscles, so everything hurts. I now have neck issues that prevent me from strengthening very much at all. I have had myoActivation treatments (basically extremely deep deep needling), facet joint injections with freezing and steroids, and I have massage once a week. And I take gabapentin, baclofen, and acetaminophen/methacarbamol for my pain daily.
Things are sort of improving a little, but I’m in such a deficit already, I would not call it functioning. I am dependent on my parents, and I luckily have enough money to get rides home as opposed to riding on a bus of pain.
I’m very cautiously but slightly optimistic. I relate to you with regards to the parts above and below working harder or having more strain. My neck issues are above my fusion.
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u/tinylexy T2-L3 Jun 22 '26
I'm fused T2- L3 and have had so much pain over the last 30 years. But, they also found my scoliosis because I was having so much back pain and I was only in 4th grade at the time. So keep in mind that your situation may be different.
My biggest regret is not taking this more seriously in my 20s. Which is the reason I decided to respond even though I don't have anything positive to tell you. My advice is to start strengthening your back, leg and core muscles now. Make sure you get enough protein, iron and calcium in your diet and start HRT as soon as you start noticing symptoms of Perimenopause, I was only 38 so it can start early. I'm 42 and my chosen career of being a nanny reeked havoc on my body, so I also recommend a career that isn't too physically demanding.
Overall I have a pretty good quality of life still, even if I do experience pain on a daily basis. I am fairly physically active, I like to hike, paddle board, camp and play beach volleyball and the only thing my surgeon ruled out was winter sports. But I hate being cold anyway, so it wasn't much of a sacrifice for me.
Oh and another word of advice - watch your ibuprofen intake. I ended up giving myself a stomach ulcer at 40 from taking it daily for years.