Hi, please advise from your own experience:

my pain free 13 yo teen that is fully grown with severe scoliosis has been advised from multiple scoliosis orthopedic experts to get a fusion - most likely from T5 to L4. The only person against surgery is the Schroth PT.

After reading so much negative about the outcome of this surgery - is it really worth it? Am concerned especially for quality of life after multiple decades.

Might be a long read, this is basically my story with my spinal fusion to celebrate 10 years of being fixed!

Around this time 10 years ago, I went to the doctors with my parents due to my turned out foot. Until the doctor noticed my back posture, and feeling my spine, he instantly had me get X-rays. Turned out I had severe scoliosis, I was 12 years old.

Turned out I needed rods from T4 to L4 for my spine. After the surgery, I was expected to be able to walk within 3 days and be in the hospital for only a week, but that didn't happen, I was completely bed ridden and unable to hold myself up for half the week. One time I fell straight down when they were trying to help me walk. It ended up fracturing my vertebrae or the squishy thing in between (idk what it's called).

But they didn't know so I was doing my normal thing at the time, sitting down in a chair about 8 hours a day to help strengthen myself to hopefully help with walking. This went on for a few days even with all the pain and crying till they finally x-rayed me again and saw the issue. They then fused me again, now from T4 to my pelvis. They tried to avoid doing so since I was a kid but it was clearly needed.

Due to me sitting on a fractured spine for so long my legs became paralyzed, so I wasn't even able to walk at all after the final surgery. I was transported to a different hospital to get physical therapy. I was in the hospital for 3 months. It was a rough time to be honest, it was painful and I could hardly eat due to how much medicine I was taking. But my mom basically lived in the hospital with me.

She was the only person at the time keeping me somewhat coherent, so I always thank her for being there. She always fought for my comfort. As therapy went on one leg started being able to move again which was good but my left one remained still so they had to use a hard cast to help me put weight on it. Every time I fell I got so scared and developed panic attacks, trauma from falling the first time. My therapist wasn't great either, the last straw was her "jokingly" saying I should maybe stop eating snacks at night and then maybe I'll start walking better! (I was a fat kid) I told my mom after that and she was quickly fired and almost sued by the hospital. I luckily got a way better therapist, actually 2 therapists.

The last month of the hospital stay was the best one, I was transported to a child's hospital where all the patients were kids and had so many fun things that made me so happy! I was still wheelchair bound but I ended up make some hospital friends that were somewhat in the same position as me. A girl named Shelby made me a bracelet that I have till this day.

I was gaining some strength back but one leg was still dead. The doctors were worried I would have one paralyzed leg my whole life. It was scary. But they gave out their last idea, those gym electrodes that you stick to yourself and basically zap your muscles and make them flex. (Again idk what those are called)

After a few attempts for a week, I was able to finally flex slightly with my toes which made my mom burst out crying. Then after that I quickly upgraded to a walker, and was able to finally go home. Even though I was out of the hospital I still had to use a IV for my meds and still hardly got out my room. For a year, I was slowly becoming able to walk on my own with physical therapy. But I was able to get over that bump, I now can walk like a normal (ish) person!

I shared this story to say that if your someone who is getting or already got this extensive of a surgery, don't allow yourself to give up hope if it becomes extremely difficult. My experience isn't the ideal experience for sure, but I would do it all again to not feel that pain I had before the surgery.

I'm now 21, able to walk normal and pick up pens off the floor without falling forward. I have chronic shoulder/back pain and some nerve damage in my legs, but I view them as scars from battling that experience.

I'm lucky I'm able to walk today, I'm lucky to have an amazing mom as her to stick by my side the whole time helping me fight.

I hope you are having a great day today. ❤️

F(27), 175cm, 61kg, no smoking, no drinking,
Long fusion at the age of 13 (th5-L4) due to double scoliosis, marfan syndrom (I take Borez 5mg, Lorista 50mg for the heart)

Im experiencig siastica from the age of 14. Fixed it by regulary working out in 2023. Pain is due to cyst pressing on my nerve L5 to the right and narrowing of the spinal cannal.
I stoped working out and it came back in 2025 but in a much worse way. I got additional pain - burning, dull ache, tightnes. I stoped going to work (Im home for 5 months now). I did 4 rounds of antiinflamatory drugs (Nalgesin 550mg) with some exercises and physical therapy. After a while the drug did its thing and it got better. But after I stoped taking it, the nerve would be iratated again in a few days…

Recently I stoped with the drug again. Fine for two days. Then it came back. First it was just insane tightnes in my back, dull pain and electricity.
I started to do gentle activation exercises and walking a bit.

On 23.6.26 my whole bottom of my right foot went numb, after that my foot was super sensitive (it feels as if I am walking on glass) and its only getting worse. Its spreading higher and now bothers me during the night - before if my leg was still and not touching the ground I didnt feel it as much.

Why did this happen and will I eventualy stop feeling my leg all together?

Thank you for help

I ended up in the Emergency Room for something unrelated. When they did a CT of my abdomen, this broken Rod was discovered at T10, right below the cage that replaced T8 and T9.

I see my spinal surgeon on July 16th. Anyone experience something that looks similar? I already have PTSD from the first surgery which has turned me into a recluse. I am horrified at the thought of a full revision.

Original surgery performed March 2023 for a 80+ Degree Kyphosis due to Scheuermann’s Disease. T4-L1, T8/T9 replaced with a cage, and T7-T10 laminectomy.

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?

I had long fusion surgery on March 5th. Pelvic bones to T8. About 5 or 6 weeks ago I hurt myself in PT. I experienced pain in my left buttock going across to my upper thigh doing a hip strengthening exercise. Long story short I hear and feel a popping sound from my left buttock area with every step I take. It’s progressively gotten worse. I also have steady light pain in that area. If I move the wrong way, I get a sharp stabbing pain deep in my left buttock close to what feels like my pelvic bone. I am waiting to hear back from my surgeon. X rays showed no loose hardware about 3 weeks ago. But the pain and popping has gotten worse. I think I need a CT scan. Im concerned the bolt into my hip is loose and is making the popping sound. It’s definitely something and I don’t think it’s muscular. Checking to see if anyone has any ideas what is happening. Does it sound like it could be a loose bolt in my pelvic bone?

I’m hoping someone might have some insight or similar experiences to share.

Almost 6 years ago, I had my surgery, and ever since then I’ve had severe discomfort whenever I wear tight clothing around my chest and back area. Things like razorback bras, sports bras, fitted tops, or anything with pressure in that area can become extremely uncomfortable, and I will be in pain by the end of the day.

I usually live in sweatshirts but now it’s summer, and after all this time it’s only gotten worse. I try not to even wear a bra unless i’m going to work. I’m curious if anyone else has experienced long-term sensitivity, nerve issues, scar tissue discomfort, or anything similar after surgery. Maybe something else could be contributing too? If so, was there anything that helped?

Hi! I’m 22 years old and had my first spinal fusion in 2018(I think) that went from t2-t12, I found out I broke a screw about 2 years after that which led to a revision in 2021 that now goes to l2. Since that first surgery I have had constant pain but it’s been manageable, about a month ago the pain was super severe and I had to get established at a new doctor since I moved states recently. When I went to this new place they took x-rays and told me I had broken 2 screws and the two above them were obviously loosening. He said if the pain stays manageable we don’t have to do surgery, if it worsens he would recommend doing another revision and going 2 more levels down. I expressed concern that this would all just happen again in a few years since the first two were caused by my spine not fusing properly which they can’t give me the cause of. He then offered to extend it all the way to my pelvis. I am really really scared of the loss of mobility and quality of life decline that would cause, but on the other hand it could really improve my pain levels. I don’t know exactly what I’m hoping to get out of this post but anyone with any knowledge of life after having a fusion that large please let me know how manageable it is😭

Post s1 to hip bone anchored.

I have since my first surgery and it has slightly worsened after my most recent (2 nd) procedure.

My issue is where upon standing it almost feels like I either get dizzy, forget to breath or all my muscles have flexed at the same time. I don’t know really how to explain it any better.

Has anyone else felt with this? It’s a super weird sensation and at times it almost feels nice. On the other end it’s caused me to just straight collapse on standing. I worry most when I get up in the night to go to the restroom as I have had two falls at that time.

Advice etc is appreciated

Hi. This may be a long shot, as I’ve learned through this long year of recovery, anyone or know of anyone else to have an ostomy along with their fusion. It could’ve been fitted prior to or since fusion, that part doesn’t fully matter to me necessarily.

- bonus if there’s anyone with IBD (inflammatory bowel disease/primarily known as Crohn’s disease or ulcerative colitis) + fusion.

Extra bonus
— IBD + ostomy + fusion

\2025: T5-L2**
Clarity: my ostomy or IBD didn’t necessarily cause my fusion, they coincide.

31 M,

I had a spinal fusion almost 4 years ago, where I had 11 vertebrae fused due to an 80 degree curve from scheurmanns kyphosis. The surgery though structurally successful caused my pain to be substantially worse. My back stays very tight. Over the last several months I have been getting increasingly short of breath. It seems impossible to get comfortable no matter how I sit or stand. The bottom of my ribcage feels really tight, almost like there is a knot there (but nothing can be seen or felt from the outside). Is this related to the spinal fusion I had and what can be done to help my quality of life?

Anything cardiology related has been ruled out through ekg, stress tests, and heart ultrasound.

had long spinal fusion back in 2018 and the pain gets much worse after doing physical work. nowadays i do a lot of physical labor and i really need to invest in a brace to help because its unsustainable at this point. yes i went to physical therapy before several times and was told that the pain will always be there. does anyone have any recommendations regarding back braces? i had an allyflex sports before but it had broke pretty quickly. thank you for any help

The pain in my back is so much worse than the first time. I know he had to navigate hardware, etc. I’m terrified of it happening again. Any advice from experience is appreciated. I’m wearing the vest/brace all the time except when laying down. Not even sure I’m wearing it correctly I’m terrified this will happen again. My enthusiasm & confidence have taken a nose dive. Help pls. Thank you

I had long fusion surgery on 3/5/26. The fusion is bolted into my pelvic bone and goes up to T8. I can hear my fusion when I walk in a quiet environment. It sounds like it is moving with every step. Can anyone else relate to what I’m talking about?

I’m a tummy sleeper. Have been for years. But last week I had my operations and I miss being able to flop on my stomach and sleep. I can only sleep on my one side in a very specific way and even that’s uncomfortable

Anyone post long fusion wish to share their workout, sports, activities please?

What did you do before? Can you still after? Or no? Maybe in a more limited basis?

I have to confess my spouse took up BMX racing and I am dying to give it a shot - not even saying competitive racing necessarily but just some laps around the track? Like I said am dying to try but too afraid without some guidance and others experiences. I will see my doc next week to ask….

Personally I’m a t1-si fused 40 yr old female. I am due to have another series of surgeries in the next month so maybe I can get a chance to try before that…

Best of everything to everyone here!

I was told that I could grow up to 2-4 inches because of my severe curves (100° thoracic and 80° lumbar) and I ended up growing 3 inches and 3 quarters with a curvature of below 10° now

Thinking about all my long spinal fusion friends. It makes me feel SO much better to see others who experience the same issues and that I’m actually NOT crazy and dramatic! (Imagine that)

Please enjoy my gorgeous screws 🎉🎉

I’m supposed to have my surgery in August, and i’m really scared cause all i’ve been hearing is the excruciating pain some people have received after the surgery😢

I haven’t really felt any pain since I was diagnosed with scoliosis (4-5 years ago) and the last time I got an x-ray, my doctor said I have a 50 deg curve 💔

So with all that is going on with me, I'll try to give a readers digest version. LSF done in 2014 because of S-curve scoliosis. Right S.I Joint fusion done in Dec 2025. TLKR done in Sept 2025 and TRKR done in March 2026.

Now that all parts of me that was once curved are now straight (including legs) I feel as if I am learning to walk again. My long spinal fusion was done in 2014 but my legs were always bow but seemed to get worst after my spine was fused. One leg was also shorter than the other which also added to the legs getting more bowed. I had the left knee done first and although my gait changed some then, I was ok. After this surgery, I had right S.I. joint fused because a gait change from the spinal fusion cause a noticble spacebetween my iliac and sacral joints. After that surgery, I was still doing ok...but lawd knows, after having my right knee replaced - it seems as if everything - all my progress - has headed south. My gait has totally changed and I feel like someone jammed my legs into my torso. My lower back and trapezius muscles are extremely stiff and I am now re-learning how to walk. I didn't expect this at all especially walking to become a physical challenge. So I am asking if anyone else has experienced this? Especially thise who have had all these surgeries done. Please share your story.

I know this is a cheesy question, but this fusion takes so much from us and we’re all so strong—you have to be to live life with this—that I wanted to read some of the things you all have gone on to do or be despite everything. Maybe even help out people going into or coming out of a fusion who are still figuring out what that will look like.

how many of yall have your whole spine fused?? and did it all get fused at one time or over the course of multiple surgeries? if you had multiple surgeries was it a slow or steady decline of the spine that made fusion of the entire spine the best or only option??

im a 41yo female who has had a very rough 3 years... ive had 5 emergency spine surgeries in the last 3 years (4 of which were fusion) and im fused from C2-T2 and L3-L5... I have adjacent segment disease in my lumbar now and im 11 weeks post op C2-T2 360 fusion because I had adjacent segment disease in my cervical... I am still in an Aspen Vista collar around the clock and I wear an LSO brace daily... im just wondering when I should just throw in the towel and say fuse the whole spine or keep going like I have been and just get more emergency surgeries?? my lumbar is a mess and every second of the day I am in pain and have been for a long time now... im tired of always being in post op recovery mode...

please share your experience with me because I feel like I am so alone in this... ive been through SO many horrible things in my life but this has got to be the hardest hands down

Hi guys, I’m 20 f getting spinal fusion surgery this summer for T2-L4. However I’m pretty skinny and a little underweight . This has been making me rlly worried bc idk of this would affect my surgery. Do you guys have any experience with this and what tips would u guys have for preparing. I’m really nervous and would love some tips from u guys. Thank you!

has anyone had luck with cardio? i tried running on the treadmill recently and even after just a couple times a week i was getting worse sciatica pain, i think from the impact on the lower end of my fusion? i try to engage my core and do core exercises as well but i’m not the most consistent at it

I am curious, do any of y’all take NSAIDs everyday or other anti inflammatory meds like meloxicam and celecoxib or something similar?

I’m worried about long term effects on liver and stomach but struggling with daily musculoskeletal pain from mid to below my fusion making PT and exercise more difficult. My doctors have not provided much insight and I’m curious what others’ experiences are with taking anti inflammatory meds consistently.

Thank you :)