Love this group! I'm so glad to read stories that sound sooo similar to what I've experienced!

As for my "story"....... I've had rods in, then out, all within a period of 5 years.

In 1999 (6th grade) one of my teachers noticed that my left shoulder was always much lower than my right. (looking back, you can see this in elementary photos too!) She referred me to the nurse, who contacted my mom to take me to a specialist... to which they then discovered I had an S-curve... ~50 degrees at the top, ~20 at the bottom. The doctors said that if they didn't fix it while I was young, it would get worse and start to cause issues with my rib cage/ lungs etc.

I had a spinal fusion to fix just the top part of the S, and they used 13 inch Herrington rods. The scar goes straight down the middle of my back. I'm very fortunately to have had a good recovery, aside from all the basic activity restrictions and an occasional case of what I like to compare to "restless leg syndrome" that went on every night for months after the surgery, and I still occasionally get when times are stressful (weird?).

Fast forward to 2004, senior year of high school. I wake up and have a huge lump between my shoulder blades- I'm talking like 1/2 a baseball was sticking out of my back. My parents think its a cyst so we go to a local doctor. He schedules outpatient surgery and drains it... turns out it wasn't a cyst. It was an infection. We head back to the specialist and find out I have a major staph infection. He says it must have been "laying dormant" all these years and maybe I got bumped the right way to make it active. (I was very active in sports and cheerleading.)

Long story short... they performed emergency operation and removed my Herrington Rods (my white blood cell count was so high at the time of reading, they were surprised I wasn't showing any signs of illness). The rods were apparently all corrodeded looking from the infection. I had to be on intravenous IVs for a month after, pic line and all, but fortunately to this day I'm still standing tall, active, and healthy... and I have my stainless steel Herrington's in a plastic baggie as a reminder.

My right hip still sticks out as a result of the surgery, and I still have about an ~18 degree curve on the bottom part of my back, but I just feel very blessed in general to not have had any complications and I hope it continues that way. I do worry about when my husband and I decide to have kids in a few years... especially after reading some of these stories.

Anyways, it was so great to read everyone's stories and OP- thanks for creating this group!:flowerforyou:

I am really beginning to wonder if I had this at a younger age and it just went undetected? The first time I even heard I had a curve was about 10 years ago when I was having a dexascan for bone density. The guy doing the scan asked me if I knew I had a curve. So I just thought it was caused from the bad spine I have. I was really surprised at age 50+ to hear I had scoliosis. I thought, wow that is a childhood thing, not an "old" lady thing. I thank you all for your posts here. I have not been here in a few months reading any and today decided to look around. I wish you all well with the problem and hope someday there will be an easy fix. I am looking at spinal fusion in the near future due to severe leg pain I have been having.
Oh yeah, my spine is also rotating to the left.

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Not all schools are good at looking for/catching it. We never had a screening at my school. My mom actually noticed mine because she had a childhood friend with a severe case, and that's when I started getting treatment (a brace). If we'd waited for a school official to catch it I probably would've ended up needing fusion.
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I couldn't agree more! The school did not catch mine and told a good friend of mine she had scoliosis when she didn't. Since it's hereditary, I have no idea why no one was keeping an eye on me. I got my daughter regular x-rays while she was growing up, knowing that almost everyone in my family has it.

I hardly see any doctors anymore, just because I live in a small town and no one knows jack crap about scoliosis.I'm just over them giving me wrong information and not helping me. But I used to go to chiropractors and later to orthopedics. Now I try to just go get a massage when the pain gets intolerable.

I have heard that the hormones in pregnancy can sometimes cause a curve to progress, but the research isn't totally solid.

Hi all. I've known I have scoliosis since jr, high when they did the checks for it. Nothing was done about it and now at 34 years old I have a 70 degree curve at the top and 40 degree at the bottom. I didn't have a full back xray until Dec. 2012 and had no idea it was so bad until then. I knew it affected me severely, having to go to pain management for years now. I have a repeat xray in December of this year to see what the change is. I have had 6 babies, and now am trying to lose about 50 lbs.

Hi everyone! Wow, I can't believe I've been on here for a few years now and just thought to look for a group of others like me!

I've had scoliosis since junior high. I've never been braced or had surgery. It was talked about a lot when I was young and I sometimes wish my parents would have went that route. I'm currently 34 (35 in a few days) and I have two boys. One pregnancy was more difficult than the other, but for the most part they were relatively uneventful despite what my chiropractor had predicted. I'm 5'3" and about 50lbs heavier than I probably should be. I don't know what my curvature degree is, honestly I think it's been awhile since that's been measured. It's an S curve and I have that very distinct shoulder drop. Nothing ever fits right. People always ask me what's wrong. I have to explain to my children all the time why this hurts or why they can't lean on me...I hate it!

I have a lot of pain in my lower back currently, left side just above my butt cheek. Also, my hips are very bothersome, my right knee is causing pain again, and my hamstrings on both legs are so tight that they have become a real pain in the neck! I see my chiropractor every other week and it's helped a lot. I don't do much more than that for pain...I don't like to take medication for it. I try to stretch.

I just don't know what to do for exercise! My doctor has said no running, jumping or anything jarring. I currently walk as much as possible (which sometimes isn't much because of the pain) I just don't know what to do? What has worked for you? I get so frustrated when I see people losing all kinds of weight and I want to be like that, then I remember I physically can't. I try not to let it bother me, but no one seems to know what this feels like!

I'd really like to purchase an elliptical or a recumbent bike. Doc also said anything where I'm leaning forward is not good either, so he thought biking in the traditional sense might be a bit too much. Weight lifting I'd be very curious about, love to join a gym but it's not an option just yet. There is a very small one in town, we've been wanting to look into it, but the nearest decent one is 10 miles away!

Welp, here's my life story... At 7 years old, I had scheuerman's disease (2 vertebrae were too close together) but my mom was told it was nothing to worry about & no doctors monitored it. At 13 years old, I began complaining about a sore upper midback (Sometimes begging to stay home from school) but I was never taken seriously by doctors. Finally at 15 years old, I was diagnosed with scoliosis -____- The x-ray horrified me as mild as it was.


Left: Summer 2004 & 15-years-old, "28 degrees." Right: July 2012 & 23-years-old, "11 degrees."

- In 2004 (grade 10 - Almost 16yrs old) doctors found a 28 degree S-curve & claimed it would not move. I was sent home with some wimpy exercises like situps & superman raises. It didn't help & I stopped, but luckily my back pain alleviated a bit in the next year probably because I had stopped growing at 5'7". I had uneven hipbones.

- In 2006 (1st year college - 17yrs old) my back pain was at an all time low for now, but I started getting really bad pains in my sternum. Doctors checked my heart but discovered my spine was probably pulling at my ribs & my heavy school bag was aggravating it more. My mom bought me a schoolbag with a seatbelt-like strap (Crosses diagonally in front) which helped a bit.

- In 2008 (Starting university - 19yrs old) I was using a messenger bag (with same strap style) but began getting the sternum pains again. I was told to switch back to a regular schoolbag which would distribute weight on my back more evenly. My spine slowly began to ache again but not as bad as when I was 13-15. I started kickboxing on a whim & that alleviated A LOT of my day-to-day back ache. My instructor noticed I did sit-ups crooked & certain twisting exercises were more difficult to do on one side.

I also saw a chiropractor for a couple months which helped with pain a lot but I could not afford him & there was mixed opinions about whether he was doing more harm than good. I could not afford him after my dad's insurance coverage ran out for me. I noticed that year that I shrunk from 5'7" to 5'6 1/2"

- In 2010 (Still university - 21yrs old) I began noticing unwelcomed changes in my body. When lying flat on a floor, the left side of my ribcage began protruding more. In photos of my back, my right shoulder blade was lower & my crooked spine was more visible. This scared me since I was told my spine would not move anymore so I pushed for another x-ray. Doctors said it had gotten better by 7 degrees & was now 21 degrees instead of 28. It looked worse to me & I was skeptical because the x-ray was taken lying down instead of the usual standing up, but I said ok and left.

- In 2012 (Graduated - 22yrs old) I was doing Crossfit, metabolic resistance training & Stronglifts 5x5 with no problem, as well as running. In weightlifting, I noticed one arm & side of my body was way more flexible than the other, and when raised, one arm did not go straight up. I also noticed I could feel a pull on the right side of my upper spine if I tilted my head down which wasn't there before.

In September all Hell broke loose. I was in a new school for a language program which required me to sit at a desk for 7hrs a day (I was accustomed to college/uni schedule of only a few hours a day & much walking around). This AGGRAVATED my scoliosis like mad to the point where I couldn't fall asleep because of pain & Advil no longer worked. I had to leave certain school field trips because sitting on a wooden bench or plastic chair caused insane pain within 2hrs. I begged my doctor for codeine & she eventually gave me a prescription for it, as well as nightly muscle relaxers. I try to only take them under extreme pain.

- I had another x-ray that year (Pictured at the top of this post, on the right) & made sure it was done as I was standing up. I was told my spine magically cured itself to 11 degrees (From 28 degrees in 2005). I was skeptical of their results once more because it still looked worse to me & I was told scoliosis never "gets better" & isn't even supposed to move after I finished growing. They said my spine is correcting itself bur I have more pain than ever. I also noticed the vertebrae in my upper body are more bunched up than they were in 2005.

CURRENTLY, I have been on a search for a specialist in adult scoliosis for months because of pain. I've had 5 referrals
- 1 specialist never responded
- 1 orthopedic surgeon said he was the wrong kind of doctor for me
- 2 occupational therapists I called passed me off to someone else
- 1 physical rehabilitation centre said they only treat people in wheelchairs
- 1 physiatrist said they never received my referral after I called months later, so I sent a 2nd one that they said they received. 2 months later, still no call & I left another message yesterday.

I had scoliosis (55 degree curve top, 31 degrees bottom) that put me in a back brace from ages 10-15. Needless to say it didn't work and 2 weeks after I graduated high school I had a spinal fusion surgery. My spine is now fused with 2 rods and 8 screws from T-12 to L-3. I have had several setbacks in my journey, including a secondary diagnosis of spondylolisthesis in the L-5/S-1 area, resulting in nerve damage and a lot of pain. It just so happens the problem is right below my fusion where all of the pressure lands. I am currently 23 years old and trying to lose a little weight (20 lbs) to help take the load off my spine and help build some strong core muscles. My doctor has told me that if losing weight and pain management doesn't work then I will need to fuse my spine straight to my pelvic bone. Not something I am interested in! Many people have it worse than I do for sure, but I am worried about how bad my back could get in the future after having kids and natural wear and tear on the spine. It feels good to know I am not alone in my scoliosis journey and would love to hear from other people in a similar circumstance.