Results of surgery from T1 to pelvis scoliosis

Hi @franpat1950 and @francine498

I had T4 to Pelvis fusion along with SI joint fusion for my severe scoliosis. The first surgery (anterior- ALIF) on 12/30/2025 and the posterior surgery on 1/2/2026. I am 65 years old. No other exacerbating health issues….pretty active….but the scoliosis had worsened to where I felt my insides “squashed” and got out of breath quicker and could feel my right lower rib bone bounce off my hip bone when trying to jog. The worst thing was the nerve pain. I would get this searing pain from my left back & through my left pelvis and down my left leg to the extent of which I could not sit for more than 5-10 minutes without squirming, yet could not stand in a grocery store line without wanting to sit after a few minutes or give up and leave. Sleep each night was a matter of turning over from back to side to back to other side every 20-30 minutes. I knew it would only get worse with age.
I am now 6 months post-surgery. I am not gonna’ lie. The 1st 6 weeks were pretty miserable with my lower back, then the next 8 weeks were very uncomfortable for my upper back (like mid spine & radiating through my shoulder blades). The best relief I got was walking as much as possible, sleeping in a recliner for the first 6 weeks, being able to rest in the recliner & take naps in between my walks, and taking lower doses of Oxy, muscle relaxers, & 300 mg Gabapentin. Weaned off all but Gabapentin by 3 months & off the Gabapentin at 4 months. Physical therapy is the best thing ever…I go twice per week & do home stretching & assigned exercises 5 times per week.

My back can be frustrating….always has a “pins & needles” feeling for now and feels like a 2x6 board down my back. I use a grabber tool to pick stuff up off the floor because I cannot squat low enough yet…and I use a sock aid & extra long shoe horn to put on shoes & socks.
Other than that, I can breathe soooo much easier, that searing awful nerve pain is gone, & I think I am a total of 2 inches taller (according to my best friend’s measurements of before & after), so I actually look rather “normal” ….lol!!!… and my clothes fit! That is even nice for a 65 year old!
I know I still have a long way to go …a year for general recovery & 2 years for full recovery, but I feel like I’ve given my life a chance at better quality & more active living. Had my surgery at Mayo Clinic in Rochester. Dr. Sebastian specializes in spinal deformities, and he also works with a team of doctors….vascular surgeons and those who do nerve monitoring during the surgeries. Best post-surgical hospital care afterwards….far more encouraging & attentive than any hospital I’ve ever seen….and I can say that as a former med-surg nurse. So, anyway….best of luck….feel free to ask any further questions….and “enjoy” my before & after pics.
You’d best feel very confident in your surgeon….go for someplace that has a world-renowned reputation…..and that is why I went to Mayo (although I know there are some other great hospitals & surgeons, too,)

@elainep i have i choice to do L4 /L5 with another dr
.instead of t1 to pelvis...There would be a chance I'd need another surgery down the road.but so less invasive..my pain is from stenosis at 4/5 ..trouble walking..what are your thoughts

@elainep Dr S was my guy while I was living in MN. He did a fine job with my decompression surgery. He offered T10-S1 fusion at that time but I have needed to work myself up to it. I would have been better to do this at that time.

Hi @francine498 😊….sounds like you are a very fit lady only a few years older than I am.!!! You want my thoughts?! Ok….here goes:

Your scoliosis is not as severe as mine was….which was approx. 55+ degrees on top & 75-80 degrees on bottom. (As you can see from my “alien life-form x-rays”..🤣

My surgeon could not fully straighten my curve due to age & associated bone loss & probably some rotational issues with my spine.

I knew my prognosis for my future & maintaining an active lifestyle was not promising….& my daily pain level was getting concerning & exhausting. I forgot what it was like to get a restful sleep. So, I felt I should not wait any longer to address my curvature…cuz more complications arise with age.

That being said….. I am not sure why a surgeon would want to fuse you T1 to pelvis at this point, but I am also not a doctor.

I always lean towards “less is better” and staying as active as possible to maintain health.

I would seek out additional opinions at world/renowned research hospitals like Mayo Clinic, or Mt. Sinai. etc. (I don’t know where you live, so I don’t know which hospitals to mention)..

my personal opinion ….and yes, this is just my opinion,… is to stay away from local, smaller town/city spine surgeons……not that they aren’t good surgeons, but perhaps they don’t have enough experience in unusual/outlier medical cases and severe spinal issues….they are only used to the factory assembly line of correcting everyday, average anatomical problems. Kind of like a surgeon who performs hip replacements all the time, but has never dealt with the nerve issues that come with hip replacements on someone with severe scoliosis…& thus, very stretched nerves and anatomical defects.

Not sure if this helps….but my thoughts & worries are with you. Spine surgery is a huge and scary decision….do research on your surgeon choices as much as you can before making a decision.

@elainep hi..my dr is Christopher Hamill at ub orthopedics..Buffalo ,NY..I live in Lewiston outside of Buffalo...He has a good reputation...And mayo clinic said there's nothing they can do that i can't get at home...I sent all test results n images to them....I'm left not knowing where to turn.

@francine498

Once again, this is only my opinion, but if Mayo Clinic puts a stamp of approval on him, then I think that is a good sign…perhaps it says he is not only very good at what he does, but that yours is a procedure in which nothing unusual or complicated is anticipated.

I understand your anxiety, though. Perhaps consult with one or two more surgeons, and see if they suggest the exact same surgery as this surgeon.

@elainep my nephew is a pain management dr at mt Sinai..he showed my mri..cat scan...xray...to surgeon...today....they said I could do L4/L5 and see how it goes....Maybe in thr future I'd need L2 or L3

@francine498 feeling like do lesser surgery...so much relief..not so stressed anymore...I can handle that
...thank you sooo much !!

Dr wants to do t1 to pelvis..id like to hear peoples success or not success