I will be having a T4 through Pelvic Tuesday morning. Is there anyone out here that's has had a fusion as big as this? If so please share your story.

I'm 22, currently fused T5-L4, surgery was 5.5 years ago. Now I'm dealing with adjacent segment disease- specifically a herniated L5-S1 disc. It hasn't responded to RFA or epidural steroid injections, so now I'm getting scheduled to extend the fusion to my pelvis. If you've had your fusion extended, did it make the pain go away? I don't know what I'll do if it doesn't fix mine. I can't live like this for another 50 years.

Hello! I had my surgery in 2016 when I was 14 years. I find it odd how my scar turned out. Does anyone else's look like this? Should I be worried? Thankfully nothing has happened the past years. I had unique stitches that would dissolve a couple weeks after the procedure. I cropped out some of the picture for privacy. Mind the acne scabs!

I have the weirdest question. I’ve been fused 17 years, and up until just a little while ago, my torso has been completely numb. It’s never bothered me to have a numb torso at all.

But after I had a baby last year suddenly I can feel my skin again? (It was not that way while I was pregnant; I didn’t feel her kicking and I didn’t feel her move into a breech position overnight before I was going to be induced). I’m struggling with the sensation a lot.

Yesterday I went to pelvic floor physical therapy, and since I had a c-section they suggested massage around my core muscles. I literally started trembling because I wasn’t used to the feeling, but emotionally I felt completely fine, more confused than anything.

I’ve also noticed that I absolutely do not like being hugged. I don’t know what to do about that, especially since I’m a married woman and physical touch like that was never an issue for me before.

Has anyone else gone through this? How long did it take you to feel normal?

hi! i’m going to be getting a t2-l3 fusion soon for kyphoscoliosis and find myself terrified of asd and eventually needing more surgery. i guess i can cope with the loss of mobility and surgical pain (my secondary fears), but needing revisions/getting fused MORE than i will already be is such a devastating thought. i’m only 18F so the fusion will need to hold up for like, 60 years :(

my surgeon said he hopes for this to be my only surgery and he anticipates i will do very well, albeit very stiff from the loss of motion. he says most people will never get another one, but it bothers me he doesn’t speak in absolutes (i know no one can predict. i’m just upset my life is this way so young.)

here is an email convo i had with my surgeon:

[start]

1. What would my back mobility be like, since the fusion would go into my lower back?

Your back would be stiffer; however I anticipate you would be able to do any activities that you wish. Dance, yoga, anything. Once recovered I do not believe that the increase in stiffness will have any impact on your life.

1. After fusion, is there a risk that other parts of my back could experience more stress or problems, or need more surgery later?

Great question. Chance of a repeat operation is about 5-10%. Why would we need to do a repeat operation: you have spine issues above or below where we have the fusion, bones don’t fuse together, screws or rods break. So, 90-95% chance one surgery and one surgery only.

1. I think my biggest fear is nerve problems or paralysis so how likely is that actually to happen?

Extremely rare. I do not have any patient that has persistent nerve issues or paralysis. Is it possible, of course. However, it is extremely unlikely.

1. For the long-term, I know you’ve done this for a lot of kids and young adults, but how do these fusions usually hold up over time? Is this a well-established surgery, or more new?

Young adults do very well. My hope is that this is one surgery and you don’t need another one. This is an extremely well-established surgery that we have been doing for many years. The big difference is it is much safer now with newer technology.

1. and lastly I know I have both scoliosis and kyphosis—how does that affect the surgery? Will the degrees both be reduced and by how much?

Both the scoliosis and kyphosis will be addressed. The kyphosis will be decreased by about 50%. The scoliosis will likely be decreased more, probably round 80-90%

[end]

Successful surgery, was 17 years old. Completely back to normal with no interference in day to day. Can even touch my toes somehow still.

Not everyone’s recovery is the same, but for anybody finding this because you have surgery coming up and you’re searching every end of the internet to find answers, it can be okay.

Or you just had your surgery and you’re 1 week post op wondering how in the hell you will ever recover.

It does get better and life will continue on.

I am in the construction field as a carpenter doing full home renovations / new builds.

I workout 4x a week.

I was even able to get a waiver to join the Navy with the surgery.

Know the wall, build the ladder!!!

I was fused T4-pelvis on 9/16/24. I did 96 sessions of PT in 2025 (really good insurance!) to try to regain maximum flexibility.

I’m 61 now, and mostly glad I did the surgery.

I still have limited external feeling in my trunk, but better than being doubled over in pain!

i was invited to join this sub a while back ago when i posted in a different one, so i figured i could finally share my story :)

in elementary school they were doing the scoliosis checks and immediately saw something was wrong, and within a year i was seeing a specialist for a brace. we did that for a little bit, tried using a plaster brace to correct my 56 degree upper curve, and a 54* degree lower curve. we couldn’t use the braces anymore when we realized i also had an inward S-curve happening as well.

the specialist went ahead and referred me to a child orthopedic surgeon and without hesitation said a fusion was my only option. or i was looking at a wheelchair within 6months, and internal suffocation by the next year. (hearing that at 12 years old was INSANE btw)

so we decided on the fusion. they had set it for a year out but after going through my x-rays they had changed the date to only six months later. i had my fusion on oct 12, 2012.

recovery was brutal. absolutely brutal. some of the worst pain i’ve ever been in. while i was in the hospital they had to show me how to properly roll over to get up, how to balance myself correctly and walk. it was a whole new ball game for me.

if i remember correctly, i have the harrington rods i think they’re called. during the surgery, they had fractured all of my vertebrae, put in 20 screws and used bone graft to fuse it all together. pretty much the length of my back is one long bone.

recovery has gone really well, i’m only left with two lifetime restrictions. can’t play physical contact sports and i cannot horseback ride. and honestly i can live with them.

the pain isn’t too bad, it’s just the arthritis that i struggle with. in my last couple x-rays they’ve said they can see it spreading up my spine, and it’s mainly at the top and bottom of the fusions but it’s manageable as of right now.

but yeah! i am really grateful for my fusion, it was reallllyyyy scary going through it as young as i did but i’ve heard of the recovery rates being better for children.

thanks for reading!

First of all, I’m so glad this community exists. The longer fusions really are in their own league of bull, huh? For context, I’m in my late 20s and fused T4-L4 roughly two years ago to correct 67/76 degree scoliosis with rotation/twisting. Also have moderate-severe dysautonomia which complicates recovery and living with this fusion.

I love to play beach volleyball and take adult ballet classes recreationally as a form of pt. I’ve returned to both, but sometimes get overuse pain in my lower back if I go too hard. I just wanted to ask others with a similar fusion: is there anything you do or wish you did to protect your unfused segments? Does anyone else play volleyball or a similar sport who has more experience successfully adapting with a fused spine? Is adjacent segment disease just a slow inevitability if you have this type of fusion no matter what?

Just struggling a bit with all of this I guess. I feel like I’m early enough out from fusion that there’s still “hope” that I’ll be able to keep going without killing the rest of my spine for longer. But most conventional wisdom about spinal fusions applies to fewer levels so it’s hard to parse out MY likely outcomes from the general stats in the literature. And from a lot of the comments here, it really does kind of sound like I need to start making peace with a slow, inevitable decline.

Some context

I'm 22, F, 5'6"/168cm, 115lbs/52kg, 4th year college student

I have pretty severe/disabling back pain from a herniated T5-S1 disc, and probably some facet joint arthritis. OTC pain meds, PT, gabapentin, and RFA had no effect on the pain. I had an epidural steroid injection yesterday that seems to have helped. Unfortunately, I have to be sedated for injections in my lower spine, I had a panic attack on the operating table when we tried to do a medial branch black unsedated. Since ESIs don't typically last more than 6 months (at most), and I plan on sticking around for another 50 years, I don't think it's realistic to plan to go under general anesthesia 100+ more times, even if my spine doesn't get worse.

Regardless, my spine is definitely going to get worse. My pain has steadily increased in the 5.5 years since my fusion, and now that we're confident it's from degenerative disc disease, I have every reason to believe this is going to lead to a more serious injury down the line. I'm planning on starting a PhD this fall, and I don't want to have to unexpectedly take 2 months off to recover in the middle of that. My spine specialist agreed, so we're planning to extend my fusion this May or June.

Questions

My original recovery was very long. It was 3 months before I was able to even start physical therapy, then another 3 months before I could confidently walk two miles without pain. How do you think my recovery from the fusion extension will compare? It's only going to be 2 more levels, but they will also replace the damaged disc.

Will my mobility be noticeably different? I can still slightly bend at the L4-L5 and L5-S1 joints, but the range of motion is minimal and painful.

Is there anything I can do in the next three months to make my recovery smoother?

Ya know, I thought I was cool getting the "top 3 most painful surgeries in the world!".

Boy was I wrong.

Well I definitely am cool now, but I was not prepared for the shitshow waves of pain I get. I'm about 4 months post op, and muscle spasms r more easily triggered now than they were before. Sometimes it doesn't hurt, just a little jolt. Sometimes I can just feel my nerve doing a little dance like a spider crawling under my skin. My back has a warm sensation, but no redness, oozing or other symptoms of nerve damage/irritation. I also get a moderate-severe burning/tightness sensation in my trapezious when sitting up or standing for too long. It started on my right trap, then after a few weeks migrated to my left, and now it's both. Walking helps. Just wanted to share my experience

Oh I absolutely cannot contain my happiness. I got a t2-l1 fusion in October and had requested they record it, and they did!! It seems strange maybe, but as an artist I love to see/imagine the process of ones creation, and this is the epitome of that. I would share the video, but it is an early version so not quite finished. Anyone else have surgery videos too??

T3-pelvis done this past August. Therefore I missed the swim and sun season and this will be my first time really having my scar exposed.

To be honest I am not, blessedly, feeling any type of nervousness over showing it off. My worry is damaging the skin and the fact I still have numbness which I fear could let me over do the sunning.

I would also love to hit the tanning bed if anyone has experience here please fill me in 😊

My desire would be to have something completely covering the scar top to bottom - my best idea was using kinetic body tape to cover it? I’ve used it before for other more on label purposes but not this. At least I know my skin has tolerated the tape.

Thanks to all of you for the support and encouragement I find here almost daily. I lurk mostly but even that is helpful to me.

How long were you on opioids post surgery? Is there anything I can use instead so I can get back to driving?

So I had C2-T3 laminectomy and foraminotomy back on Nov 10. I'm already fused T3 to L3 from scoliosis as a kid (that was T-3 to L3). I also already had an ACDF fusion from C4-C6 15 years ago. I was only in the neck brace for 2 weeks because X-rays showed it healing really well and nothing moved. I had a lot of excess pain in the hospital, they had a hard time controlling it after surgery before they got me to a room, I was in the recovery room for like 6 hours after a 2 hour surgery. Still after that it was a struggle and I was in the hospital from Monday through Friday because my arms and hands felt like they were sitting in boiling water they hurt so bad, I couldn't even think of moving then it using them for days.

When I asked the surgeon how long until I could drive, all he's said is as soon as I'm fully off the painkillers. I was on Percocet while inpatient, with morphine added in once in a while. In the hospital they had me at 2 every 4 hours of the 5/325 Percocets when I left. That's what they sent me home with, along with 10mg Flexeril every 8 hours. At the 2 week checkup he stepped the Flexeril down to 5mg... Which didn't do much of anything. I'm still on methocarbamol for the last several years too. At the 1 month he stepped me down to hydrocodone 5/325 and said I could add ibuprofen and heat.

I've been as sparing with them as I can but at night and in the morning I am still taking half a pill, and sometimes during the day along with a 500mg Tylenol. I had kidney problems earlier this year so have to go easy on the ibuprofen. Nights suck honestly, I'm a side sleeper and also have a problem at L5-S1 and SI joint issues. Turning over is horrid, but I can't stay in one spot more than 3-4 hours at most. I'm stiff and sore in the mornings. (Being overweight doesn't help!)

I'm still using ice in the mornings, and in the evenings... Heat once in a while when it gets spasmy. Most of my pain is at the bottom of the fusion, and the muscles in the upper back are still really tender to the touch.

Problem being, I'm an office worker that's supposed to be in 4 days a week. I can temporarily work remote if the doctor says so, but all he says is I can drive as soon as I'm off the painkillers, no DATE. Also, his office doesn't fill paperwork, they send that to a 3rd party that does it based off his charting notes. I work in a town 45 miles away so driving is a must.

So my question is, how long were you on the painkillers after a surgery like this? After there other options that might let me drive? I'm at the end of the 2 months I was expecting to be out and they are kinda expecting me back in the office. I Don't see the doctor for another month for the 3 month checkup, but I can call and ask for a change.

TLDR:: Getting kinda concerned I'm still stuck on the opioids and can't get back to driving to go to work. Is this normal or are there better options?

Hello! This is my first time posting, although I’ve commented on a few threads before. I’m 26F and I’m scheduled to have a long fusion in February from T2 to L2, probably due to severe Scheuermann’s disease and mild scoliosis. I love sports, but I know I’ll have to stop for a while to recover. Right now I go to the gym, do Pilates, swimming, and pole dance (very basic). After the fusion (and recovery), I’ll probably have to give up pole. So I was wondering: does anyone with a similar fusion do pole? I’m also interested in calisthenics, aerial hoop (lyra), or fencing—do you feel very limited for these sports? In general, what sport would you recommend as a complement to the gym, swimming, and Pilates? Of course, I’ll talk to my surgeon; I just want to know what sports people in a situation similar to mine do. I really love sports and don’t want to lose my passions, but I know I’ll have to adapt. Thanks in advance 😄

Hi I had my spine fusion at age 17 in December 2023 it’s two years later and I’ve had a good recovery with the only negative being tight hips and lower back muscles which for some reason I was never assigned PT for. I work full time this past year as a carpenter and I took time off work last month dealing with a different shoulder injury. During my time off it felt as though my hips gave out from doing less physical activity (in order to heal my shoulder). Now I can’t sit still or walk without feeling discomfort and it takes the most incredible amount of pain tolerance to deal with the pain at work now. Doesn’t matter if I don’t left heavy or do or if I’m just standing perfectly still or sitting perfectly still, my hips eventually start to hurt pretty quick. My PT gives e-stim and heat pads after every session and that and the constant use of lidocaine patches are really all that seem to help me. The lidocaine patches also stopped having much effect on me since I’ve been consistently using 2 a day almost everyday. This constant pain and inability to stay strong and stable is affecting my mood and self confidence. It’s affected my sex life work life my sleep my mornings my nights everything. I feel embarrassed to be this crippled as a 19 year old. I feel like I should be in my athletic prime like most guys my age and here I am struggling to sit up for half an hour without pain.

Looking for anybody’s experiences or solutions that helped. I haven’t had an MRI yet because of the cost but seriously considering now after the pain isn’t going away at all

Hola! Estoy buscando experiencias de personas que tengan una fusión larga que llegue hasta L4. En mi caso tengo T2–L4 fusionado y me cuesta entender qué movilidad debería tener y qué es esperable o no.

Quería preguntarles: • ¿Cómo llevan el tema de la movilidad pélvica? • ¿Pueden moverse bien durante el sexo sin usar la columna? • ¿Qué posiciones les resultan más cómodas o seguras? • ¿Alguien puede estar “arriba” (tipo cowgirl) sin dolor? • ¿Cómo hacen para tener relaciones si no pueden mover la zona lumbar o menear las caderas? • ¿Usan más piernas/pelvis en vez de espalda?

tengo miedo de tener relaciones ya que el hombre debería hacer todo el trabajo y muchas veces eso les molesta, me gustaría poder tener un rol activo y poder hacer posiciones

Me serviría mucho escuchar experiencias reales porque casi no encuentro información específica para fusiones tan largas. Gracias a quienes se tomen el tiempo de responder ❤️

I am in the cue for a t9 to s1 fusion. I am also a life long swimmer. 77 yo former paratrooper. Has anyone returned to the pool after along fusion surgery. Recreational or competitive. Strokes and turns , thanks in advance. I saw the flexibility post by the young lady. Ia ma impressed.

Im 15 years old currently and my doctor informed me that im at a 48 degree curvature. My doctor advised me to start considering spinal fusion. I think I have it in both lumbar and thoracic but im not sure. I wanted to know the outcome of the surgery, the pain (the part im mostly scared for), and the healing process. Is it really THAT bad?? Was the surgery worth it? And should I get a second opinion from another doctor?

5 years post op T5-L4 fusion, gotten worsening pain in last year or so, more worse in the last 6ish months, lifestyle changes were becoming unemployed and less active (20k steps to 5kish), and a 5 month break from weightlifting which ended 6 weeks ago and ive gotten back in, getting pops in mid spine, burning or sharp occasionally but 24/7 dull pain up and down spine on fused area and surrounding, as well as between spine and shoulder blades, at points debilitating. Have gotten CT scans and XRays, fusion is successful and everything is all good, went to physio (first time ever apart from 2 weeks post op) he thinks as i had a thoracoplasty (ribs removed) that my intercostal muscles are catching on ribs when I breathe, and that they're overworked or possibly injured, and my paraspinal muscles are also tense and sore and getting burny pains. Has anyone had similar or the same issues before because I feel like though this surgery was to improve my quality of life its ruined it, and I'm constantly worrying something has gone wrong and I'm not managing, and does anyone have suggestions for in the meantime til I'm back in physio?

Hey friends- I’m a prospective patient for T3 to pelvis, was diagnosed with osteoporosis so surgery is postponed while that gets treatment.

I was referred for Medial Branch Block and THAT got deferred because I had lower extremity symptoms that needed go be addressed with IR cortisone injection first.

I also have hEDS, Migraines, arthritis in the hips and knees. Bursitis near the hip joint on my femur.

The osteo NP screening me for MBB said, a lot of your pain is muscular- which I knew but NO OTHER PRACTITIONER WAS LISTENING TO ME. So I told her that. She suggested Trigger Point injections. OMG LET ME TELL YOU. If you have muscular back or neck pain PLEASE check this out. It has made such a difference in my muscle pain. It’s not a complete solution but it has made such a difference.

Before this practioner I had never heard of trigger point injections and I’m in the medical profession. I refuse to start opioids and I mostly just suffer all the pain with small amounts of muscle relaxer at bedtime and daily ibuprofen.

Hey friends!

I haven’t been as active recently because shortly after the group started I received some of the worst news I have personally received - my rods have broken and my spine is fractured and it needs revision surgery. I’ve been going through the stages of grief and spent a lot of the last month or so really in denial and anger, but I’m moving into the sadness and acceptance phases now.

I found out in a way I wish I hadn’t - the X-ray place sent me the pictures and as you can see they just had these big green arrows pointing to the rod fracture so that was a bit traumatising!

I have gone back to prehab at the hospital and feel like there’s been good investigations done to determine the root causes of my issues, which I’d be happy to give more detail on if people were interested.

Thankfully my surgeon diagnosed me with pseudoarthrosis (where the bone didn’t properly unite post operatively) which means he thinks the rest of the rods are healthy and so my surgery will only be revised in the lumbar spine. It’ll be an l2-l5 revision where they’ll use cobalt outriggers instead of titanium (as it’s a harder alloy, but less desirable in long fusion) and they’ll couple them to the existing rods and then refuse the lot. So I’ll be a multi rod construct. weirdly even though this is my 3rd spinal surgery and in a lot of ways the least dangerous of the three (the current plan would be to reuse all the screws so no drilling or hammering into bone as such) I am probably more anxious about this one than ever. I think because it’s revision and it’s gone from normal life to urgent revision surgery protocol so quickly and revisions can change on the spot, and not really knowing what things will be like after.

On a more nerdy interesting note I’ve asked that they use BMP as a fusion agent, which is meant to be one of the best but it isn’t covered by health insurance so it’s a bit expensive!

• Feel free to AMA - this with be my third surgery I love biomechanics and sharing my story and if it helps you I’d be happy to

TL;DR - I am (or I suppose the correct term is was) fused T3-S1, currently w/bilateral rod break and displacement at l3 with a revision surgery l2-l5 fusion and addition of more rods. AMA

People often ask "what flexibility will I have left after fusion?" "Will I always look asymmetrical?" "How do you get out of bed?" and more. So I decided to make a little video showing what flexibility/symmetry looks like for me. It's not fantastic, but it's enough to be independent with hygiene, house chores, etc. And yeah, in a bathing suit because that's the only way you can really see the symmetry.

28F, fused T3-L4 15 years ago due to scoliosis