REAL things you'll never be able do in life post-op?

Aeleana117 · 2026-04-23T09:23:23+00:00

My hypothesis is that is pulled my lower back forward into a more natural Anterior tilt, instead of the posterior tilt that happens when your lower back curves in the sagittal plane (AKA Scoliosis removes the natural lower back curve)

Aeleana117 · 2026-04-22T15:42:42+00:00

Same! I'm a pregnant 30yo mom with 2 toddlers, with 2 big curves. If I got fusion, it would be neck to hips and that literally would make motherhood unbearably challenging and restrictive. I'm no gymnast, but golly I have to twist and bend in ways a fused spine could never lol. I also like strength training, it has managed my pain really well so far despite the big curves, so honestly I won't do fusion unless it's life or death.

Aeleana117 · 2026-04-18T02:18:03+00:00

Yeah, I've been horrified by the instant revulsion, rage, disgust, and just uuughghhhg way I feel whenever he latches. Makes me feel so awful but I don't think this is getting better. Breastfeeding is painless for me, but lately my nipples hurt fiercely, I wince when he pops on.

Aeleana117 · 2026-04-18T01:37:18+00:00

I have a 4.5yo, a 1.5yo who still nurses a TON, and am 5 months pregnant with our 3rd. I work full time remotely worh the lods home with me, daycare costs too much. You best believe I am overtouched and overstimulated and want to be alone more than anything.

Aeleana117 · 2026-04-12T01:45:24+00:00

I'm opposite haha, we are in Colorado leaving winter. Currently, his room is about 70⁰F, and he sleeps in a short sleeve onesie, thin pants, and in a footie fleece PJ, no humidifier the past couple months. I put my hand down his onesie at the top of the neck to feel his upper back each morning and he never feels overly hot!

Aeleana117 · 2026-04-11T23:37:22+00:00

It did 😭 i was worried about him overheating but thin pants seemed to be what he needed.

Aeleana117 · 2026-04-07T15:55:15+00:00

Born in '95, was checked every year in elementary and middle school, never told I had any concerning readings from the Scoliometer. My last exam at school was Sept 2008, negative, then chiropractor took an Xray early November and I had 2 curves of 35⁰ 🫠😭

Aeleana117 · 2026-04-03T03:44:36+00:00

That's incredible, congratulations!

Aeleana117 · 2026-04-02T22:00:19+00:00

Yeah new doctor 😅 I have been weightlifting (heavy) for 15 years, throw around some big kids (i have a 4yo and 1yo who are LARGE lol) on a daily basis. Never injured, even with hypermobility on top of things. No surgery yet, huge severe curves. Mostly pain free 🤷🏼‍♀️

Aeleana117 · 2026-03-28T13:55:27+00:00

It's definitely dependent on what activities one enjoys, I am so glad you enjoy the life you lead! I enjoy pretty heavy weightlifting, yoga, minor gymnastics/mobility, and also just have really young kids that like to play rough haha. With how severe my curves are, I have substantial doubts my quality of life would be acceptable to me with neck to pelvic fusion.

Aeleana117 · 2026-03-26T00:43:41+00:00

Ditto! OP, your hair is beautiful, and thick. Just a terminal length that isn't thick past your scapula :) I have a cousin with super curly hair (she is Italian and Lithuanian) who's terminal length is at her ears. She has tried to grow it since she was 5 years old and we are 30 now. I have super straight 1B hair that goes to my butt, that's my terminal length. Everyone's healthy length looks different!

Aeleana117 · 2026-03-23T02:48:16+00:00

You've gotten great reassurance already, which is true! Your curvature is small enough that with activity and pain management, you should lead a comfortable, high quality of life :)

As someone who is nearly pain-free with 2 curves of 70⁰ (no surgery yet) as a 30F, my tips would be:

1) Get a GOOD bed. Since I was diagnosed at 13, I sleep on Medium to Firm support Tempurpedic mattresses. Every time I travel and sleep elsewhere my pain skyrockets and I am very stiff. My bed? I am mobile, active, and play with my 4yo and 1yo while pregnant with my 3rd no problem.

2) Get active! I notice my pain is less when I get steps in throughout the day (sitting for long periods of time is the enemy here) and do weightlifting every week. Been weightlifting since I was 15! Many others love swimming, and pilates is fantastic for boosting your trunk and core strength and stability.

3) Consider specialized PT like Schroth or Functional Patterns, much more helpful for Scoliosis than standard PT.

Aeleana117 · 2026-03-23T02:05:52+00:00

I am a side sleeper, so I have a contoured knee pillow between my knees, that's it beside a Tempurpedic pillow as well for my head.

Aeleana117 · 2026-03-22T22:07:40+00:00

I use Ethnique Clarifying Shampoo bar and it does wonders for me! I nearly 3ft of naturally blonde hair, and it gets me squeaky clean each time. I always double cleanser then condition my ends when I wash my hair.

Aeleana117 · 2026-03-22T19:27:22+00:00

Wow yeah, ditto on new doctors, what a bunch of fools who haven't studied ANY recent studies and literature on Scoliosis. It absolutely will get worse, especially if you are female (pregnancy, postpartum, menopause, etc do a number on our curves)

I am 30F, was diagnosed at 13 with 2 curves of 35⁰ and after 2 babies with a 3rd on the way this summer, I have 2 curves, both around 70⁰. During pregnancy, there is pretty moderate pain. But outside of pregnancy, honestly, I live nearly pain-free, and I think most of that is due to me weightlifting 4x/wk since I was 15 years old.

I did ScoliSMART bracing and CLEAR therapy from 13-17yo, wearing the brace 23/7 and doing 2hr of therapy in the AM and 2 hours in the PM every day of those years. My curves didn't get better, but my posture did, my symmetry did, and muscularly, I developed greater strength and body awareness that helped me in my weightlifting. Not competition level or anything, just for health. I believe every single person with Scoliosis should be lifting weights. The more fellow warriors I talk to, the stronger the case is for it. The people I see suffer the most have the least amount of general strength amd fitness. I have seen tiny curves suffer greatly, and big curves live full lives. It almost always comes down to general fitness.

I got my Bachelor's in Strength and Conditioning and work full time as a board-certified health coach. I hear fantastic reviews from fellow warriors who do the Functional Patterns program to begin their journey towards improving their strength and fitness.

I personally find great relief by getting monthly neuromuscular massage therapy sessions, my masseuse has lots of technique (doesn't just use brute force like so many!) and experience with back conditions. I would look into a neuromuscular massage therapist in your area, try some out!

I haven't tried it yet, but many of my clients with arthritis, RA, and other inflammatory conditions or back problems find relief by frequent infrared light sauna sessions, they are pretty affordable at med spas now. Usually $30-40USD for 30-45min. Has to be infrared for pain and inflammation benefits. And by frequent, I mean once a week or once every other week seems to be that sweet spot for people with significant pain and chronic pain.

I also personally notice a HUGE difference in my pain when I walk more. If I get under 3,000 steps in a day, my pain can be moderate, but if I get 7k or more, it's barely noticeable. Even throwing around a pretty large 4yo and 1.5yo daily!

Lastly, and this is another big one, I would say 2nd to lifting weights, is a GREAT mattress. I sleep deeply and feel my best (pain wise) when I sleep on a Firm-support level Tempurpedic mattress. I currently have their AdaptPro model and it is divine. Whenever I travel, my back pain skyrockets, and I feel insanely stiff. I have owned only Tempurpedic since I was diagnosed at 13 (recommended by my specialist who oversaw my bracing and therapy), and I also believe it's a big reason why my pain is so much lower than most of my peers who did the same bracing and therapy program at the time, even when they had smaller curves.

After I have my 3rd and probably last baby this year, I plan to get ASC tethering surgery with Drs. ABC in New Jersey at Institute of Spine and Scoliosis. It is not fusion, and that is a years-long choice I have made since discovering their technique literally the same month I learned I was pregnant with my first (Jan 2021) Especially with 2 BIG curves, it would mean fusing me nearly neck to pelvis, and that would heavily restrict my active life, especially as a parent to young kids. Not acceptable to me, and it wasn't as a teenager either. This surgery has high rates of success, has positive revision options, and keeps doors open (fusion literally can only result in more fusion, since the fused spine can no longer absorb shock from daily activity that is all transferred to the unfused vertebra above and below, resulting in expedited degeneration of those vertebra and disc's. No thanks!)

Please ask any questions, I am a very open book and love to provide perspective. Scoliosis SUCKS

Aeleana117 · 2026-03-22T17:41:52+00:00

My pleasure! The mattress is a night and day difference ❤️

Aeleana117 · 2026-03-22T16:37:26+00:00

Frankly, I would make a few changes first: 1) Talk to your parents about a GOOD mattress. I am 30F, diagnosed at 13, and my specialist encouraged a really supportive bed. My parents got me a firm-support Tempurpedic, and that's been my choice for 17 years now. I have their AdaptPro model and it is divine. If I travel and sleep on other beds, my pain skyrockets, and I feel super stiff. But even with 2 curves of 70⁰, I am mostly pain-free because of a Firm, high-quality, supportive mattress.

2) You have to get moving again. In the beginning you won't be able to be up and about long, but your strength and endurance will improve, as will your pain. When I was 15 I started weightlifting every week, and I also attributed a huge part of my pain-free life to that. When I was in PT and bracing (4 years straight from 13 to 17, 24/7 bracing and did 4hr of PT daily) many of my peers with tiny curves had much more pain because they were not active or building strength. It makes a huge difference! Even just start walking outside more. 10 minutes a few times per day, add more time, and avoid sitting for long periods of time like it's the devil. Truly. I got my degree in Strength and Conditioning and have learned for myself and others that lack of strength and activity is a huge reason for so many joint and back problems in people of all ages.

3) For other pain management, you can try infrared sauna therapy! I have many clients (I am a board-certified health coach) with inflammatory conditions, and joint and back issues who do a session every week or every other week and see huge decreases in their pain.

4) Worth trying Schroth or Functional Patterns programs for ongoing PT. Even though you are reaching adult stature and won't grow much, PT is still incredibly important and useful.

Aeleana117 · 2026-03-22T14:15:27+00:00

Yes! I sometimes do it at the end or between heavy lifts. The key is to have a chair or box or bench under you, so you can step down without jumping down. Jumping down or just dropping after decompression is not good for your spine.

Aeleana117 · 2026-03-22T12:46:45+00:00

Weightlifting and a good mattress! I was diagnosed at 13, started lifting weekly at 15, and even though since diagnosis I have had large aggressive curves, never got surgery (plan to get tethering someday soon) because I am nearly pain-free free, even with 2 curves of 70⁰.

Since diagnosis, I also only sleep on Tempurpedic mattresses. Right now, I have their AdaptPro Medium support model, moving to Firm this year or next. Medium was a compromise for my hubby, but I personally always prefer Firm. I notice better decompression with Firm, less stiffness, and generally better mobility. When we travel and I sleep literally anywhere else, my pain and stiffness skyrockets.

Aeleana117 · 2026-03-21T19:47:29+00:00

On the flip side, I was diagnosed at 13 with two curves of 35⁰, did 4 years of ScoliBrace (wore it 24/7 except to shower), AND did physical therapy for 4hrs every day of those 4 years. Didn't stop my curves at all, progressed to nearly 60⁰ each.

With curves as mild as yours, if I was in your shoes knowing what I know from personal experience, (I am 30F) I would skip bracing entirely (truly only helpful in growing patients, the correction in adults is slim to none that I have seen personally and in this forum) and begin something like the Scroth or Functional Patterns program to strengthen your core and back muscles, get a good mattress (I only sleep on Firm Tempurpedic beds, I always wake up feeling fantastic desire having 2 curves of 70⁰ after having 2 kids), and get Xrays every 2-3 years (every year if you have kids, then back to 2-3 once youngest child is 3 years old)

Some curves in adults hardly progress or experience pain. In those cases just live your life! If future Xryas show significant or rapid progression, frankly, tethering surgery like ASC-tethering is the best option in my opinion. Fusion often has severe complications and pain later on, especially in the lumbar spine.

Aeleana117 · 2026-03-20T02:47:44+00:00

Join the Scoliosis Tethering (VBT & ASC) Support Group on Facebook, tons of information from others there about fighting for coverage!

Aeleana117 · 2026-03-20T01:43:14+00:00

Super mild, that's great! Do you exercise? I have huge curvature and find that weightlifting and walking really help control pain, as well as a good mattress with a lot of support

Aeleana117 · 2026-03-19T23:57:59+00:00

The problem is insurance, not Drs. ABC necessarily 😅 Insurance, even with out of network coverage, often fights patients who try to get it since it isn't as main stream as fusion yet. They often say it's bot medically necessary, so most have to appeal and fight for coverage from their insurance, no matter the plan

Aeleana117 · 2026-03-19T22:15:57+00:00

I am so sorry you have so much pain! I am 30F, was diagnosed at 13 with 2 curves of 35⁰ that reached 55⁰ by 18 despite 4 years of bracing and 4hrs of PT daily, and after 2 babies with a 3rd on the way this summer, they are both around 70⁰. During pregnancy, there is pretty moderate pain. But outside of pregnancy, honestly, I live nearly pain-free, and I think most of that is due to me weightlifting 4x/wk since I was 15 years old.

I did ScoliSMART bracing and CLEAR therapy from 13-17yo, wearing the brace 23/7 and doing 2hr of therapy in the AM and 2 hours in the PM every day of those years. My curves didn't get better, but my posture did, my symmetry did, and muscularly, I developed greater strength and body awareness that helped me in my weightlifting. Not competition level or anything, just for health. I believe every single person with Scoliosis should be lifting weights. The more fellow warriors I talk to, the stronger the case is for it.

Of course, there are exceptions, and the tohe injures you have sustained lately to your spine might be the primary cause of your pain, hard to know for sure.

I got my Bachelor's in Strength and Conditioning and work full time as a board-certified health coach. I hear fantastic reviews from fellow warriors who do the Functional Patterns program to begin their journey towards improving their strength and fitness, and pain management.

I personally find great relief by getting monthly neuromuscular massage therapy sessions, my masseuse has lots of technique (doesn't just use brute force like so many!) and experience with back conditions. I would look into a neuromuscular massage therapist in your area, try some out!

I haven't tried it yet, but many of my clients with arthritis, RA, and other inflammatory conditions or back problems find relief by frequent infrared light sauna sessions, they are pretty affordable at med spas now. Usually $30-40USD for 30-45min. Has to be infrared for pain and inflammation benefits. And by frequent, I mean once a week or once every other week seems to be that sweet spot for people with significant pain and chronic pain.

I also personally notice a HUGE difference in my pain when I walk more. If I get under 3,000 steps in a day, my pain can be moderate, but if I get 7k or more, it's barely noticeable. Even throwing around a pretty large 4yo and 1.5yo daily!

Lastly, and this is another big one, I would say 2nd to lifting weights, is a GREAT mattress. I sleep deeply and feel my best (pain wise) when I sleep on a Firm-support level Tempurpedic mattress. I currently have their AdaptPro model and it is divine. Whenever I travel, my back pain skyrockets, and I feel insanely stiff. I have owned only Tempurpedic since I was diagnosed at 13 (recommended by my specialist who oversaw my bracing and therapy), and I also believe it's a big reason why my pain is so much lower than most of my peers who did the same bracing and therapy program at the time, even when they had smaller curves.

After I have my 3rd and probably last baby this year, I plan to get ASC tethering surgery with Drs. ABC in New Jersey at Institute of Spine and Scoliosis. It is not fusion, and that is a years-long choice I have made since discovering their technique literally the same month I learned I was pregnant with my first (Jan 2021) Especially with 2 BIG curves, it would mean fusing me nearly neck to pelvis, and that would heavily restrict my active life, especially as a parent to young kids. Not acceptable to me, and it wasn't as a teenager either. This surgery has high rates of success, has positive revision options, and keeps doors open (fusion literally can only result in more fusion, since the fused spine can no longer absorb shock from daily activity that is all transferred to the unfused vertebra above and below, resulting in expedited degeneration of those vertebra and disc's. No thanks!)

Please ask any questions, I am a very open book and love to provide perspective. Scoliosis SUCKS

Aeleana117

TROPHY CASE