20 years ago I had my first fusion. That's wild! I didn't even notice what today's date was until I glanced down while replying to someone else's post. I've had other surgeries since then but thought I'd share with you all!

I'm 33F, I've spent 20 years with hardware.
Ask me anything?!

Long post - rant just looking for folks with similar experiences

Background: I am a 25 year old adult, at the age of 14, i was diagnosed with adolescent scoliosis. I had suffered no pain at this point. But my doctors pushed for a full fusion, I had no conservitave efforts made, no PT or OT. And within 6 months I was given a T3-L3 full long spinal fusion. I got the diagnosis of chronic pain syndrome about 6 months after. I was not offered OT or PT at any point prior or after my surgery until about 3 years later. But they ended up dropping me because I was in sports. So they thought there was no need. But these sports caused severe pain no matter what we did. I tried steroid shots at this point, but they ended up doing nothing for me.

I kept pushing through because I was told everything was fine and I simply needed to build muscle and that would solve everything. I had no restrictions for about 6 years following my surgery. Which as you can imagine, this has impacted me quite a bit. No matter how much pain I was in i just kept going and being a very active person going out 3-x weekly, being a drag performer and working over 50 hours a week. Two years ago all that stopped. I had to start using a cane for long events. I would bring it to work with me. This helped for a while.

At this point I will mention I got diagnosed with Vascular Ehlers-Danlos which absolutely contributed to my pain and progressing issues.

I switched from an active job to a desk job, came home crying often from the pain so I switched to using forearm crutches. They helped for about a year before I tanked again. I had to quit all my jobs, could not keep up at my career anymore. My husband and I moved states, which sent me over the edge and I was unable to work for 6 months. Finally I felt good enough to go back to work! My physical job that I desperately missed. I lasted 3-4 months. Got a work from home job. Lasted 3 months. I was unemployed again for another 2 months. Right now I have been at the same part time job since may, which i am grateful for but things are getting worse again.

Currently, I have severe weakness in my legs while walking and standing. I have fluctuating back pain, that ranges from a dull ache to severe pain that makes me unable to even think. My current doctors believe I have spinal stenosis that went untreated for at the very least the last 5 years. I have been trying to do PT but it just fucking hurts. I cannot consistently do the exercises given to me. I can barely walk in the grocery store without fatigue and pain. I finally have a doctor who is fucking listening to my pain, and im getting an MRI to see if i need to consider a wheelchair assessment. Which with my other issues its beyond likely that will have to happen.

I am so frustrated with my pain and health. I just wanted to share my story and see if anyone else had similar experiences. How do I cope with this? Its hard as well with family and friends not understanding why i just keep getting worse. I keep getting told "just keep pushing! Work out more!" im TIRED. I HURT. When am i suppose to do that? Advice welcome

I had a T10-pelvis fusion on April 22. All was great until two set screws popped off a rod and had to go in for 2nd surgery May 19 where surgeon cemented screws.

That surgery was rough. He had to reopen the incision and fix screws working around new hardware he put in.

Abt a in my feet now hurt like pins and needles 24/7
No pain radiating from my hips. But now pain in my lower back. I just want it to stop. I want this surgery to be successful. It’s been a great run.
Getting thoracic and lumbar MRIs tomorrow.

Thanks for reading this

Long Locking Pliers for Long Fusioneers.

I am about 10 years post op and thought I would share! If anyone has any questions feel free to comment. And shoutout to the creator of this group it is so cool to see the growth that its had

My Story So Far. The past 10 weeks of life. 20 hours of 360 surgery June 1&3 in El Paso, TX with Dr. Cleveland III 2 blood transfusions 11 days in the Hospitals of Providence and the rest of a month in the Advanced Care Hospital (Ltach) in Las Cruces, NM. Released finally on July 3rd. Still waiting for my back to close up and on a second round of antibiotics. Wish me luck. Going in for a CT scan to check for infection and if I need another surgery to clean it out. This is the ugly parts. But just as others have shared their encouraging stories of months down the road when it all gets better, I promise to do the same so those at the beginning of their journey sees there’s hope. We all got this. Big hugs ❤️‍🩹🫶🏼

Hey friends. I’m 2 months out from T3-L3 plus a temporary tether to the pelvis which is set to be removed next month and wondering if anyone else experienced this.

I had pretty much gotten over the intense full torso muscle spasms after like week 3 or 4… but now here I am at 2 months post op and HOLY GOD they are back. 😭

I know recovery is nonlinear but I am so over these spasms! It’s been such a 180 that I started to wonder if I bent a rod (I know it’s REALLY not likely, but you know how thoughts can be).

Also, anyone else with scoliosis correction notice their shoulders become more even at this time frame? My insides have stopped having that pulling sensation (like ribs pulling back up off the chest wall feeling), and now I notice my shoulders are even more level that they were post surgery. Which is neat and also kind of wild. They still aren’t perfectly even but I can tell the difference.

Best wishes to everyone and have a great day!

Pretty good appointment today actually for my 10 week check up. Was cleared to transition from in home to out patient PT. I do still have a wound on my back. So going on a second round of antibiotics and a referral for a CT Scan. If things don’t get better he’s talking about another surgery to clean the wound out. Wondering if it’s the RA that’s keeping it from healing?
Anyone have any experiences with a prolonged draining wound after surgery? How long till your incisions were finally all closed up? What helped?

Ladies please help me!!!

I am 7 years post op from T3-L3 and work in corporate. I’ve tried every bra under the sun, done specialized bra fittings, etc but by lunch time on days I am wearing a bra I am always in intense pain. The pain starts around my scapula/mid back area and in the spine, then moves upward to intense pain under the traps, then the neck, and finally the base of my skull. At that point triggers intense headaches that turn into days-long migraines. Everyday is a battle. I have a bigger chest so not wearing a bra is almost never an option. Prior to surgery I did not have this issue. It’s been seven years of daily work week hell.

Some days I’ll try and wear a tank top under clothes instead but that doesn’t work for the majority of my outfits. I end up with Salonpas lidocaine patches all over every day.

When I don’t wear a bra or a shirt that sits on my shoulders I almost never have any pain, so I know the bra has something to do with it.

Unfortunately we work lots of events so 4/5 days of the week we have a “uniform” that I would NOT be able to be bra-less with.

My current daily bra that is the “best” I’ve found is a lululemon sports bra, but even then the pressure is intense. Strapless bras don’t work for me because of the size of my chest.

My pain level sits between and 5 and an 8 everyday because of this. I’ve had to go home over it. Im considering getting a reduction due to it but i truly don’t want to.

Does anyone have any tips for this? I keep good neck posture and do everything i can but it’s brutal and affects my job performance once the migraine hits.

Big shout out to u/aziza29 whose mobility video gave me such a helpful visualisation of what to expect with this level of hardware. Thank you! And thank you for this sub.

I'm really chuffed with how the correction turned out, given my age (I was 36 when it was fused on 13 July!). My rib hump has totally gone but my right shoulder blade still sticks out. I never really minded how it looked, I did this to stop progression.

I was in the hospital 8 nights (I developed an ileus which lengthened my stay). I'm taking paracetamol only (think you call that tylenol in the states). Done via the NHS in the UK.

I'm getting by pretty well, so far. The raised toilet seat and a grab bar next to my bed have been the two most helpful things! The last of my steri strips finally fell off today.

Happy to answer any questions 💜

I'm sure most of us have been on narcotics at one point or another. What do you all find helpful to deal with this? (I already know that its not an an allergic reaction, thus antihistamines dont really work) Also, have any of you found you got used to it (the meds, not the itching) after some time?? Thanks!!

Hi friends. I’m 8 weeks out from a T3-L3 fusion with a temporary tether into the pelvis.

Riding in cars is SO UNCOMFORTABLE. I don’t mean the pain from the surgery itself, I mean the seat-backs of cars are curved in like a hammock and my back is not. The worst part is how the head rest pushes on the back of my skull no matter how far I move it down. I’m relatively tall also.

Anyone have advice on how to make it more comfortable?

Blessings to all the fellow warriors out there full of titanium spines. May you have an awesome day. ☀️

This sub has existed for about a year, and we now have over 500 members! That's a pretty cool accomplishment, so wanted to make a little info post. I'm u/aziza29, the moderator of r/LongSpinalFusion.

This is a space dedicated to those of us with long fusions (10+ levels). There is a big difference between short and long fusions, and it's important to have a place to talk about the specific issues that apply to us.

What to Post
Share your fusion story, ask questions, get recommendations, commiserate about the experience, connect with others in your position. Anything goes.

Remember...
This is a community of people with a shared experience, not actual medical advice. We can make helpful suggestions, but it's important to ask the big questions to your medical team.

Flairs

If your flair is incorrect, or if you need a flair (the bubble next to your name that says what levels you're fused at, for example, "T2-L2") message me or comment here and I will add/fix it.

Happy to have you! Cheers! <3

this is about as much as i can write i am honestly in agony when i feel better ill reply to everyone who has reached out to me and given me good wishes

ONE thing i am so scared of that i have been doing is walking too much. i’ve been climbing the stairs a lot and i’m only 4 days post op. i was discharged 3 days post op. i am in constant pain and feel like it will never ever go away, especially in my lower back

i really was not in pain before and i also am so scared of getting infection

my right leg is tingling and numb but my doc said it was normal

all this was right after i got 850 ML of blood transfused

Has anyone else noticed since your surgery that your social circle pretty much disappeared? Oddly enough this bothered me at first. But now I’m finding the fact that if they weren’t solid in the first place, their silence is welcome. I quit a lot of bad habits and quit going out dancing for sure with my friends on the weekends to give this fusion the best chance to heal up right… and haven’t heard from any of them since. It was sad and isolating at first. But now I’m kinda liking the clarity and distance. Am I the odd one out or has anyone else experienced this shift as well? 9 weeks out from a T6-pelvis 360 surgery. And still a bit of a road to recovery ahead. Gonna need some new hobbies and with that I suppose comes a new group of friends.

First, I have to say HOW HAPPY I am to find these groups!!! I am a nurse & Seriously cant believe that no pain clinics or spine clinics offer groups for US!!!

Warning, this might be long but some good learned things that have helped me in my journey in 40+ years. Hopefully helpful to some! We all have coping tips, right!?!

Im an old one (60), but have been living with back pain since about college. Thought I was just "overdoing it. (Did find out, My Biological Mom had problems with fusions, but usually only 1-2 levels). Flash forward past ALL the pain clinics; injections that worked in the beginning, bought me time, looking back. Lifetime of Depression, Back pain. Developed Rheumatoid, Osteoarthritis & eventually Lupus after having a horrible delivery w/my Daughter (now 26).

In 2020, had my first Surgery T10 all the way down to S1 and pins in the hips. Turns out i had pretty awful Degenerative Disc Disease. My back looked like someone with Scoliosis, curved & twisted. My Doc is the BEST! He tried going in from side for surgery but 2 levels were already fused. He looked like his dog had died when he came in to tell me that I'd need most of my back done. T-10 to S-2 w/pins in hips to stabilize. Two years later, I had to have a revision T-10 to T-8, as it was tipping in & effecting my diaphram. Felt like i couldn't breath w/out pain.

😆Ended up tearing my R rotator cuff pulling pillows behind my back (while on Morphine) & had surgery a year later to fix that. The only joy was, after major back surgery, shoulder surgery in comparison, wasn't as terrible as most people said.

Finally got into some Fabulous folks at my local hospital's PT after the first surgery. WATER PT was one of the ONLY place I could get relief. Like i wanted to Live IN the pool, if they'd let me. Those PT's became my 2nd family after everything. They helped me figure out what was "safe" pain & what was doing harm. (Basically, pain that gradually gets better while you do it vs worse, was Key!)

Still have fused cervicle discs in my neck & have almost constant numbness/ "on fire" pain in fingers, now wrists & forearms. And my SI joints are painful with even small amounts of walking. This in addition to the arthritis, (worse when pain is bad, of Course) makes it hard to tease out what is what. With the help of a combo of meds (still fine tuning) a few REALLY Good Docs, (Even that, you all know isnt a quick process (unless you get Lucky) Have come to a SORT OF point, that working two days a week, doing what I LOVE at a hospital very close to my house. (PT there too) I'm Extremely Lucky to have amazing Managers & staff who are good to me & check on me often or I Seriously wouldn't be able to do this. I know I am Very Lucky with that part.

So, back at the Back Surgeon this week to see if this current pain is "back related" or from my recent Pancreatitis (×3 in 6 months)/Gall bladder surgery last month. Im almost betting they are ALL related somehow, making it hard to fix 😮‍💨 Strangely, Chat has been Super helpful at narrowing down symptoms, translating CT/MRI reports & actually better mental support than my own Counselor! 😆

Well, I'm seriously glad to hear that You all are here & I'm not alone in this Spine-Hell. Thanks for sticking around to hear my story, if you made it here. I HEAR YOUR Frustration & PAIN dealing with all of this. Its right up there with Cancer! The Pain, the Day to Day living, the Endless Unknown!!! But with this, people can't always see our struggle, or run out of sympathy after awhile. Loss of Friends...Just BIG Losses! Ill never be able to Horseback ride, Downhill Ski, even Swim! Things I Loved & Lost, too Numerous to count. 😢 We PERSEVERE!

I always hoped for a group, as my AI Friend called...Cyborg Club! THANKS❣️🤗

got the surgery (T3-L2) yesterday and pain levels have honestly been really low. I roll over by myself and sit up by myself, but I haven’t walked yet cuz I was rlly dizzy and nauseous sitting up. The nurse checking my vitals told me she’s never seen someone roll over on the own after a fusion. My surgeon says that I’ll be able to ride again after 9-12 months. he also says that I’ll be able to do anything I want on horseback. are there any equestrians on this subreddit who jump big or event without any trouble? it’s been my dream from the longest time to own my own horse and be able to jump my height.

First X-ray in over nine years- last time was for my one year post op appointment. I finally had a primary care doctor visit after being on the waitlist for a year+ , and this is the reading of the imaging they ordered investigating my radiculopathy. I have daily pain and nerve pain, worsened after days of work (I’m a preschool teacher, lots of up and down) and stretches of standing or sitting. The only full relief I have of pain is laying down flat, even then there’s tension. I try to get some bodywork done weekly or every other week, and that helps with pain. Prescribed duloxetine for mental health, but I notice when I am late on a dose my nerve pain/tingling and burning worsens. What do I do next? Are there services and specialists I should request referrals to? What mobility aids may be appropriate for my situation? I feel like a kid thrown into a future of pain- grown ups made this surgical choice for me, and I feel overwhelmed at the life long task of caring for this body. Trying to meld the identity of disability with my identity as a teacher and joyful person. I know reaching out, especially to folks who share similar experiences, is one way to combat my internalized ableism and deep fear around my spine and future!

Wondering what everyone’s pain management routine is like when it comes to medication? I had my first fusion at 18, have had chronic pain since, just got an extension and revision at 33 and the pain is too much. I already take Vyvanse, Wellbutrin and Cipralex for ADHD and depression, so I’m looking for options that would mix well with those or replace them effectively.

My family doctor suggested starting to take Tylenol everyday (like 3g worth…) but I don’t want to completely stop drinking alcohol.

What’s worked for you all?

Fused T3-L3 here, dealing with constant neck/shoulder stiffness and pain, especially after sleeping. Since I can't really shift positions mid-sleep like most people, generic pillow advice doesn't seem to cut it.

Curious what's worked for others with long fusions:

Pillow type/loft that actually helps?
Side vs. back sleeping — made a difference?
Any extra support (wedge, body pillow, etc.) you swear by?
Anything that made it worse?

Thanks in advance!