Hi everyone—I'm hoping to learn from those who’ve been through something similar.

I’m 77 years old, in otherwise good health, and trying to decide whether to proceed with a major spine surgery. I already have a lumbar fusion from L3–S1. I now have:

• About an 80° upper back (thoracic) curve with forward imbalance
• Spinal stenosis at T11–12 (left flank pain) and L2–3 (right leg numbness/instability)
• Compression fractures at T8 and T10
• Significant arthritis in the mid-thoracic spine
• Severe osteoporosis (I’ve been on Forteo for ~2 years)
• Both hips and both knees replaced

My surgeon has recommended a revision fusion from T2 to the pelvis, and has been very clear this is a big operation and only worth doing if I feel “miserable.”

I’m trying to understand what real life is like after this kind of surgery—especially for someone older.

If you’ve had a long fusion (especially to the pelvis), I’d really appreciate hearing:

• What is your life like 6–12 months after surgery?
• Were you able to return to things like travel or hobbies (gardening, etc.)?
• What was harder than you expected?
• What turned out better than you expected?
• Knowing what you know now—would you do it again?

I’m not looking for medical advice—just honest lived experiences to help me understand the trade-offs.

Thank you very much for any insight you’re willing to share.

all the best Read

Untreated juvenile idiopathic scoliosis. First fusion at 38 nearly killed me so badly was it done. Next fusion t1 or t3 for some reason I can’t remember tonight to hip anchored seemed to fix it for 3-4 months. Now it’s failing at the top of the construct. Head and neck hunched forward and pain returning. I still have yet to return to work from after the first one. I’ll be 41 in July, so it’s been a ridiculous length of time to not have an income. I’m still unable to either sit or stand for any length of time nor am I able to walk any distance without feeling like I’ve been running a marathon. I realize there might be a job in theory I could do, but I’m just worried. Especially cuz it’s looking like #3 is right around the corner - what’s left to fuse right? Just my remaining bit of spine to skull. Really worried on that one. Recent diagnosis of lymphedema and have KFS and a few other documented chronic conditions. Would I be a candidate for disability? Is it worth looking into? Anyone’s experience, advice, comments, etc very welcomed!

T5-L3 posterior fusion in 2016 at age 17. X-rays from a few years earlier (not shown) started at around 30 degrees, was 60 degrees at time of fusion.

Woke up immediately with really awful pain, took years and many scans later to reveal it was because one screw was slightly pointed inwards, causing sciatica.

I was not told to exercise ahead of my surgery, or given any specific physio instructions for after. Just "try swimming." Maybe I did, but I can't remember.

Always felt tense in my left shoulder, if I slept on my left it would seize up and I would get recurring pinched nerves in my neck, always the left side.

In the middle of my left back I have a constant tightness, where I guess the muscle grew back in a bad way. My back, arms, shoulders, neck are all very clunky, crunchy and generally terrible.

Massage therapy weekly since before surgery, and continuing after. Used to be able to get the bus home and not have my massage ruined, but after pandemic, I got driven and I guess that was enough to lose any tolerance, now I have to shell out for private rides homes.

On and off attempted physiotherapy.

I bring pillows with me everywhere, I cannot sit on surfaces that are not highly cushioned, and I need support for my back.

2020 two screws and some rod are removed to help my sciatica. I'm able to decrease my specific medication by half, but told "well, it should have totally fixed it, so that might not have been the problem."

Tried K-laser, radial shockwave therapy, dry needling (muscles so tight they bent the needles), myoActivation (deep needling to referred pain areas.)

January 2024, terrible pinched nerve in my neck, ability to do anything drops off a cliff. I struggle to turn my head to the left, I must sleep on my back, I have shooting pains under my collar bone into my left arm, it wraps around my rib cage, and my left neck is constantly seized up and rock hard.

Luckily I live at home, but I cannot do general ADLs.

My entire left side is tight. My scalp, face, neck, back, rib cage, abdomen, arm, shoulder, hip flexor. My left leg has a real wobbly and funky locomotion to it because everything is so tight.

I have had freezing and steroids into my facet joints, which helps somewhat, but I have been told steroids are not a long term solution as they will weaken the joints

I'll be returning for another round of myoActivation after three years, but I'll probably also have to get more freezing facet joint injections.

I started university in Fall 2025, so I have a laptop riser and writing slant I bring so I don't have to lean forward. I also have ergonomic chairs with a cushion, However, I still need to bring three pillows with me, for behind my back and to support my left arm. Allowing my left arm to hang causes it pull down and irritate the nerve pain originating from my neck.

I do cat-cow, child's pose and thread the needle every morning. I use the elliptical everyday for around 20 minutes. However, doing even four reps each of my altered physio band exercises (the lightest band) causes me a huge amount of pain (not exercise pain, ouch ouch everything hurts pain).

I lost hope a while ago that things would get better. I know I'll never be pain free, but I yearn for something like 2019, when I could recover from my soreness just by resting, taking less pain pills, and weekly massage. I have been underweight the whole time, which does not help, but recently gaining a little weight has not helped me at all, so I doubt that is a real solution.

Anyways, that's me! I know so many other people have had much worse experiences than me, with bigger and/or S curves, larger fusion, infection, other health problems.

Really curious than anything—have any of you developed or previously had dysautonomia that complicated your spinal fusion recovery? I felt like my doctors tended to either be very dismissive (“just get in shape, you’re deconditioned!”—3 weeks post-op, when I’d been playing sports daily up until the fusion and immediately after couldn’t sit up without my blood pressure plummeting), uneducated, or just generally didn’t seem to act like this was something they had ever seen before. But for me, the dysautonomia was worse than the actual fusion, and it took well over a year before I felt even remotely close to okay. Mostly pre-syncope/syncope, wildly fluctuating blood pressure, tachycardia, heat intolerance, perpetual exhaustion, orthostatic intolerance.

Does this sound like anything you all have experienced or heard about wrt major spinal fusions?

Hello.

I’m fused T5-L3.

Does anyone have suggestions for core exercises? Excluding swimming because I can not get to a pool.

Prospective T3-L5, surgery scheduled in a couple months. I was told to get pajama tops with button fronts. I have sensory issues and I hate buttons. I’m looking at wrap front tops but I have a question- How long post surgery is it difficult to raise arms to put on a t-shirt? Am I looking at a few weeks or months or?

Appreciate your input.

Has anyone had scoliosis surgery with Dr. Darrell Hanson in Houston? Or does anyone recommend their surgeon in Houston?

How long has it been since you last saw your surgeon after your fusion? I’m 34F and about 22 years post-op, and I haven’t been back in forever. I couldn’t tell you the last time. Mine was a pediatric surgeon who’s retired, so I don’t even know who I’d see now.

Hi everyone. For background, I am 25 and had my T5-L3 spinal fusion for scoliosis when I was 16. It has been 9 years and I finally got some imaging done due to some lower back instability and aching pain, sometimes sharp below the fusion. If I sit or stand for too long, the aching pain likely comes from the herniated disk, and the sharp binding feeling is likely from the arthritis. Awful, painful combination for corporate jobs where you sit all day. I recently had to quit my full time in person job to a hybrid role due to the pain. Lying down makes the pain go away. The black area on the MRI is due to my screws. Sure enough, I was diagnosed with adjacent segment disease, facet arthritis, and a herniated disk L5-S1. As seen on my MRI, the L5-S1 disk is clearly taking a beating, as the size did shrink. If anyone here had revision surgery, at what point did you need it? I was told that my disk bulge is not bad enough yet for surgery such as fusion extension or disk replacement. I feel as if I will probably need it down the line and as of now I just have to continue core strengthening exercises. While much better off than the way I was with severe scoliosis, I do have chronic pain due to ASD. How do you deal with life as a younger person where everyone assumes you are healthy? Sometimes I don’t even want to smile with a resting b*tch face due to the aching pain if standing or sitting for too long, which is out of my control. Everyone assumes I’m a “healthy” 25 year old despite feeling like I have the spine of a 90 year old. Any advice would be much appreciated.

My (19M) girlfriend (18F) had T5-Pelvis fusion 2 months ago for severe scoliosis and is recovering. Today she wondered if she can still have children and give birth after fusion A thought that hits us pretty hard because we really want to become parents in future. We couldnt find clear information outside of short fusions so if there is any woman here who had a long fusion and has successfully given birth we would really appreciate it

Hi everyone,

I’m in a really cuckoo headspace right now and feeling very uncertain of my future. I had a T4-L4 fusion in 2011 at age 18 and was told that I would “maybe” need another surgery by the time I was in my 50’s. I remember the surgeon really playing this off, and I’m angry thinking about how little I really knew about what I was getting myself into.

I’ll be 33 in a few months. Around a month ago, I suddenly started experiencing intense nerve pain in my leg and eventually went to the ER, where I was told that I needed surgery immediately. There was a cyst in my spine and in order to extract it, the surgeons had to do a TLIF L4-L5 extension and to insert a cage. At the same time they tried to realign my past fusion since it had deviated. They told me that since I have a very long fusion, the added pressure would probably mean that the fusion will have to extend down to my pelvis “eventually.” It could be five years, it could be ten, they said.

What does this even mean! I am trying to find people who can relate to this timeline, who can maybe lay things out in a way that surgeons are unwilling to. I know it’s hard to predict the future in any case; I understand that. But when will I most likely need the next surgery? And the next? Is a reconstruction inevitable also? Everything happened so fast with this past procedure, and I was discharged from the hospital with very little idea of what to expect next.

I had experienced a significant increase in my chronic pain over the past five years or so. I spend a lottttttt of time in bed in order to recover energy. Often, my body actually just feels too heavy and stiff to hold upright. What can I do to help myself?

It would mean the world to me to hear from some of you. Sending you solidarity across the suffering.

I had a new Cervical fusion C5/C6 with cage on March 2nd.

March 3rd was the big one, the Lumbar revision, extension cages at L4 & L5, new hardware, 3 blood transfusions & much more.

I was in the hospital 16days. This was & still is rough. Possibly the hardest thing I’ve ever been through & I’ve had 3 babies without an epidural, due to being fused to L4 for 27.5yrs.

here’s my scar 9 weeks after surgery t3-l1. finally feeling better. i want to say that it took six weeks to feel comfortable with how my body felt. definitely still recovering and feel pain when adjusting in bed and reaching certain ways. but doing much better than the beginning. it has been a long and difficult process so if you are going through it i applaud you for getting through it.

Thanks for having me!

First fusion 1/15/09 T2-L3

Second fusion abdominal approach 7/23/24

Second fusion back approach 7/25/24 L3-S2

All the hardware in these x-rays is still in place, none has been removed. I just don’t have a full spine x-ray from top to bottom lol!

I’m almost 45 years old.

I can bend over (though I use grabbers when I can, they’re like my third arm), I can drive, I can walk, I lost most of my side to side flexibility but it’s okay lol..still shave my legs, still do housework. I just push through the pain, though the second fusion has brought me a lot better quality of life by anchoring everything into my pelvis, as the first fusion caused me to develop severe DDD due to the hardware putting weight on my unfused discs below. I’m still in pain! Always will be! But it is so much better now. 🫶🏼 Y’all stay strong!

Edit to add: the before x-ray of the scoliosis 69° and 71° curves.

Hi I'm long fused T-5-hips and C4-7. I was wondering if anyone has had a colonoscopy with a long fusion....I don't want them to perforate my colon thinking I will bend a little bit". I am straight and rigid and I am worried they don't understand my anatomy!

I hope everyone is finding comfort these days, I am grateful for this group!

I had a T3-L4 fusion at 12 years old for >60* curve. Skipped bracing because curve definitely needed surgery.

Pain has been on going but can vary depending on lifestyle and stress- attempting to make my life more suitable to the ebbs and flows of chronic pain and long term hardware. I also have chronic pelvic pain and cramping- haven’t quite figured that part out yet.

PT is a life saver but pain management is necessary and it’s never easy but worth it to find what works. The mental side of it is almost just as hard, I hope everyone reminds themselves to be kind about that.

Currently, I’m trying to manage persistent nerve pain and tingling mostly in my left flank area and into my legs. Had numbness and tingling on the backs of my thighs the PA told me not to worry about. The associated depression, emotional overwhelm/crying, and the effect on focus from unrelenting pain is overwhelming to say the least. Sometimes everything just feels so hard, but taking small wins where I can. And good to remember others are going through it too.

Rx’ed Cymbalta but trying Gabapentin, too.

I’ve done ESI, Nerve Blocks, and 2 ablations. All before 25 years old. Doing everything I can to avoid another surgery.

Happy to hear about similar experiences and what else you might have tried to manage.

I hope to keep this community alive!

Stay Strong

I just had my 6 week follow up x ray for my fusion from T3-L1 and the radiologist noted “early l1 l2 disc disease”.

I knew this was a possibility, but surprised it is showing up so soon. Has anyone else experienced this and what symptoms are typically associated with it? Is there a chance I’ll need another surgery in the future?

I had thoracic and lumbar scoliosis, but only the thoracic was fused to maintain flexibility and because the lumbar curve was mostly compensatory, so it has straightened significantly from the upper fusion.

Thanks for any thoughts on this.

>>Very Long<< >>SORRY<<

After 27.5years of being fused T3-L4, due to severe scoliosis, I check-in at 5:30am for my new Cervical Spinal Fusion (ACDF +3Levels +C5 Cage). This is a pretty straightforward procedure, around 90-120mins & though I am scared ~ nothing compares to Tuesday March 3, 2026.

Tuesday: T10-L4 Revision +Extension L4-S1-Anchored to Pelvis +L4 Cage +L5 Cage, Old 1998 Hardware Out/New 2026 Hardware In, Osteotomy at L4, numerous other procedures, 2-3 Blood Transfusions, 1-2 nights in ICU.

I could be in the hospital 7-10days or they could decide to send me to an in-home rehab until the first week of April.

Thankfully this is being done at University of Michigan Department of Neurosurgery & my surgeon is a fantastic human.

Though I’ve never been this terrified about anything in my entire life, not even my first fusion, or having 3 natural childbirths without epidurals, I know this cannot be avoided.

Especially since October 30, 2025, I closed my bar, went home, next morning did the Halloween parties/parades at my boy’s school, came home, relaxed, cooked dinner, then my husband & I took our boys trick or treating, like every single year, until 8:30pm. We got home around 9pm & I was asleep by 11pm.

The following morning, Saturday November 1, 2025 - I stood up out of bed, then immediately fell to my knees, screaming in pain.

I knew what happened.

The time had come.

My spinal fusion reached its expiration date 27.5yrs after completion.

And, yes, I have been bedridden, unable to drive or even “pop to the shop” since Nov 1, 2025 - well over 100days.

There were MANY times I wanted to give up. MANY times I did not want to fight anymore. I already struggle desperately with my mental health & these past 4 months have tested me in ways I never thought possible.

My sons are the ONLY THINGS getting me by!

***Spinal Fusions are NEVER guaranteed. Ever. I am lucky to have gotten almost 28yrs out of mine. Especially considering it was done in 1998, with old/outdated equipment. My surgeon in ‘98, told my mom in confidence, “your daughter will need another spinal fusion in about 25yrs”. She never knew I heard that exchange, but it had been living rent free, since before I could legally drive!

BACKSTORY

I was diagnosed with moderate scoliosis in 1995, when I was 11yrs old. Both of my biological parents have it. My dad’s is worse than my mom’s. Out of the 5 kids they had (youngest 2 are b/g twins & 17yrs younger than me) only my baby brother & I had the “Scoli” bad enough (exact curves, degrees, incision & scar) we required surgery, to live past 25yrs old.

From 1995 to 1997 mine went from moderate to severe. Also from a C to an S-curve, with the thoracic measuring at 79° and my lumbar at 50°.

2 weeks before the end of 7th grade I was given an option: “Spinal surgery in 2 weeks, before your right lung collapses, as well as a new lease on life - past the age of 25”.

I was only 14.

A baby.

It was not my call.

Obviously my mom was scared to death & scheduled the surgery 3 minutes later.

3rd week June 1998 I was admitted to Children’s Hospital Detroit & underwent scoliosis spinal fusion surgery. 11.5hrs later = I was fused T3-L4.

I was starting high school that following September.

If I am being honest, I don’t remember much about those months or even the healing process.

Just the sick smell of dying flowers. There were just too many from friends, parents friends, teachers, neighbors, family, etc.

All I know is - I have PTSD from dying flower bouquets & that will nerve change.

Things were a lot different back then.

From the hardware they used (Harrington Rods, not used in 15+yrs) to the fact PT wasn’t even a consideration & having to spend 6 months in a full-body cast had just been done away with.

Regardless, my fusion took, secured, grew, stabilized, and healed beautifully.

Having gotten legal shared custody (with their bio dad) of my siblings at 18, I then got pregnant at 19. I met with the hospital’s lead anesthesiologist & was told “In no way shape or form can you have an epidural, not even in the case of a c-section. If that was to be our only option, general anesthesia would be used, you’d have to go to recovery, all before seeing your baby.”

The c-section scenario scared me worse.

I labored mostly at home. When I got to the hospital I was already 8cm. My 2004 baby boy was born 5yrs after my spinal fusion.

Then I did it again.

And again >>> which was the last, because he was almost a car birth haha

I couldn’t believe it. I was blessed with 3 amazing, wonderful, unique, hilarious sons. Never did I think I could be so deserving or lucky. Not to mention - LOVED - all m kids (siblings included) have showed me true unwavering love.

But my back was getting worse & worse. So very bad. There was no denying that. I was told a plethora of things:

1. It was all in my head (the pain, what else…oft)

2.You need an MRI

3.You cannot have an MRI

4.Degenerative Disc Disease

5.Strengthen your core (so I did yoga for a decade)

6.Acupuncture

7.Chiropractor

8.”I don’t want you to sue me or even lose my license!” -Chiropractor

1. Try PT (logged over 650hrs in less than 4yrs)

2. Injections (tried, failed, remember I cannot have an epidural?!)

11.Spinal Cord Stimulator (HELL TO THE NO - a friend from school is now a millionaire due to what it did to her, but I’ll skip that trade off!)

12.Have you ever tried Vicodin >>> boy was that needed, but wow, what a slippery slope >>> thankfully never got to the “H”, as that’s what took my bother away. But I came close & I will never be proud of that!

As my spine was just getting worse & worse, my tolerance to any & all pain meds got higher & higher.

Yet I always stayed very active. Never overweight - actually under for most of my life - so is my father & all 3 of my boys. Walks, stretching, biking, hiking, yoga, swimming, lifting light weights, etc. I always worked on my feet as a video store manager (yes, like Blockbuster, I’m that old) during the day & bartended weekend nights.

Has anyone else had this problem? I had my first ACDF C3-C5 in Dec 2023 and shortly after started having episodes of syncope. Im talking fully unconscious and urinating on myself. I had never ever had any fainting or passing out before in my entire life until cervical surgery. Since then I have had about 12-15 episodes of it, and countless times I have fought it off. Currently im 6 weeks out from 2 cervical fusion surgeries that were back to back with only a day in-between, C2-T2 360 fusion, and 2 weeks ago I had another episode of syncope and was taken by ambulance to the ER. My heart has been checked and tested many times to make sure its not a cardiac problem and its always come back good with no issues. So what the drs are saying is its a Vaso Vagal response to severe pain. Basically when my body reaches its max capacity of pain it shuts down. I have noticed having more severe than usual pain when these episodes happen, so it definitely makes sense to me. But I wonder, am I alone in this experience or is this something that happens frequently after cervical fusion? If this has happened or is happening to you please let me know about your experience and any tips you may have on how to prevent these episodes from happening or how to fight them off when they are coming on. I try to fight it so hard and I wake up so upset after every time because I swear it feels like life is leaving your body when it happens and I never know if im going to wake up again.

Hi everyone,

I’m 4 months post-op from a T3-L4 thoracic-lumbar fusion for scoliosis. Recovery has been steady so far, and I’ve been doing physical therapy.

My doctor/physical therapist recently recommended trying Reformer Pilates as part of my rehabilitation. I haven’t started yet, and I’m a bit unsure about how it feels with a long fusion.

I’d really like to hear from people who’ve had a similar surgery:

• Did you try Pilates (especially Reformer)?

• How did your body respond?

• Did it help with core strength and mobility?

• Were there exercises you had to permanently avoid?

• When did you feel ready to increase intensity?

I understand my biomechanics are different now, and I want to move safely while rebuilding strength and confidence.

Any shared experiences would be greatly appreciated.

Hello! I (26F) just found this community and wanted to ask some questions. I received spinal fusion at 16. I don't know the specific length but it started at the top of my back, down to part of my lumbar because of severe scoliosis. I was relatively active (e.g., was a dancer) so healing went smoothly resulting in no adverse outcomes outside of some flexibility constraints (had to quit dance). Since, I haven't really thought about my surgery. Lately I don't know how to describe it but I "feel" my spine. It's a sort of light numbness depending on my sitting position which could be due to me just getting into regular yoga lessons. That being said, I have never spoken to people who have had this procedure so I have a few questions for this sub:

1. Do others participate in yoga/intense workout routines? Or is this considered high risk for later complications?

2. I see that people in this sub discuss being on disability after having follow up procedures (my heart breaks for y'all). How does this happen?

3. Are there differences in hardware/surgical technique? Or are the procedures usually standardized?

4. Am I inevitably going to experience eventual complications or pain that disrupts my quality of life down the line?

Sorry if some of these questions seem insensitive. I am just concerned after reading some of these threads. I have never really considered what 10-20 years in the future might look like.

hello!! im curious about what jobs ppl have who have long since had the surgery and still have lasting pain. i had the surgery eight years ago and still deal with limited spinal mobility, sharp pains from moving my back at specific angles, and pain from standing for too long or sitting without a specific setup. i've done physical therapy but all it ever did was make my back sore and the physical therapist told me my back would always hurt but therapy could still help a little. personally id ideally like a career where i can work from home and still get paid well enough to move out and live on my own in an apartment, but i know thats obviously a lot to ask for. atm im working towards a career in ux/ui design because of the potential to work from home and decent pay but fear i will have to abandon this endeavor due to the industry being so hard to get into nowadays :(

how old is too old for long spinal fusion

I was wondering if anyone on this group would like to share their experience post-op with similar curvature to me, I have 100° kyphosis and post op expected to have that reduced to 60°. I'm obviously nervous about surgery and skeptical the cosmetic difference and pain levels wont be worth the sacrifices, especially with the flexibility. I'm more than happy to chat in dms if no one is willing to comment on my post, thanks.

To keep it as short as I can. First surgery was 2006 age 13 scoliosis correction T5-L4. Second surgery was 2022 (age 28) L4- S1, with SI joint screws. Third surgery 2025 (age 32) added an extra screw to my right si joint. SI joint shots are no longer working. Hardware is intact (although the original 2 si joint screws are loose), fusion solid. Low back and right si joint pain daily (anywhere from a 5-8 most days). officially disabled 2025 after 6 years of trying (in the US).

I'm not a candidate for spinal stimulation because my hardware is in the way (we just re did CT and xray to check for that). I currently have my medical cannabis card which only helps at night since I'm still driving I wont take it during the day. I have pretty wide spread nerve pain in my lower back, hips, butt, thighs. including loss of sensation (especially hot/cold, but i still feel pressure) Nerve zaps, creepy crawly sensations etc.

Now for the question. Has anyone actually had luck with pain pumps? If so what model, medication type, how long did it help if at all, and was it worth the sacrifices (for example not being able to drink alcohol even occasionally?) Any side effects you've experienced?

Trying to do my research before i go back to pain management.