I am not trying to scare anyone going into scoliosis, just t

I am not trying to scare anyone going into scoliosis, just trying to share my story, so keep that in mind.

I am 37, and found out I had scoliosis when I was 12. Between 7the grade and 10th grade, I wore 3 sepereate torso braces. Though I couldn't stand wearing them for the 23 hour ruling by my doctor, I still wore them at least 14 hours a day, I couldn't sleep in it. I was in and out of the doctors office and orthopedics office every other week, I missed a lot of school. My curvature was a minor 32 egrees at bottom, but over the years, progressed to 52 degrees at bottom, 46 at top, and a 15 degree twist in my spine. My left leg is shorter by 1/8th of an inch, and my rib cage is contorted.

When I was 16 I was given the choice of surgery or not, the latter most likely ending in wheel chair use and partial paralization if nothing was done to reduce the increasing curvatures. I chose surgery which still had its negative possibilities, but had to make the decision without my parents input. My mother didn't want me to get surgery, and my father said it was my choice.

I ended up getting surgery 50 days after I turned 16, right after I had gotten my learners permit to drive. The surgery was 9.5 hours which started at 6 AM. I had to get 16 units of blood drawn for it previous to the surgery, as I wanted to make sure that there weren't any blood complications during the surgery. I was in the hospital for 5 days post surgery, and was sent home early because I moved to the lazy boy chair next to my hospital bed during the night. I was supposed to be in the hospital for 2 weeks. I spent the next 2 months mostly in bed. I didn't do physical therapy like I should, and didn't do any exercises (I've never been good at doing my exercises). I had home tutoring for a month of my 11th grade year before going back to public school. The worst of the bed rest was being afraid to fall asleep and move in a way to tear stitching. I has 1200 cat hair stitches, half inside, half outside. I grew 3.5 inches during surgery and my right hip is very different than my left one.

School was its own devil, being scared to bump into things and people, being allowed to leave classes early helped a bit, but being treated like I was a porcelain doll definitely didn't help my mental state. Over the last 2 years of high school, my art ability really developed, which is what I went to university for, as my art was my best friend, It didn't ask questions, I was always good enough for it, and we grew together through the pain.

I worked many retail jobs, did more than I should have to my body, and eventually my body decided that sciatica was the next step in chronic pain. It formed over the years slowly, numbness in my right foot, and slowly crept up my leg, until in 2013 during one morning at work, full blown pain set in. I couldn't work, no less walk for about 8 months. Sleep was not a possibility some weeks as well. My overall health, mental and physical tanked. Anxiety attacks and depression set in. I hadn't finished university the first time around and I set it in my mind as a goal, finish my degree. I went to physical therapy twice a week, started applications, went from not walking to a cane, to no cane and then eventually back to a semi normality. I got through classes, though struggled with focus on bad sciatic pain days, but I managed to get my Bachelors in art done in the winter of 2016.

Between 2016 and 2019, due to anxiety attacks, depression and pain, I worked a total of about 60 days. I had a supportive girlfriend at the time. Covid didn't really affect me much, though it did my relationship. Back in May of 2020 the next blip happened. The base of my scar line became discolored, became infected out of no where. My body decided that after 20 years, it was going to start being allergic to the metal within. There were complications post surgery, I lost my relationship as she couldn't support me medically or mentally, but we are still friends. The sciatic pain is gone as far as I know, though still have weakness and numbness in the leg. I have chronic tail bone pain now in its place, which is a new demon to tackle. I now have a biweekly tele-visit for therapy, go to a job advisor to help look for work, do exercises, walk a mile every other day, take zoloft for my anxiety and depression, and a load of minerals and vitamins to hopefully help move forward, I am also living with my parents, which have always been supportive of my body issues, but don't understand the imbalances of body and mind I go through daily. I have never had a normal sleep schedule, it differs week to week and sometimes daily, though I mostly find sleep around 4am. Although my zoloft helps, I still have a lot of anxieties about going out and being around people, work included. I have many body restrictions about lifting and kneeling, crawling and the such that reduce what I am capable of for being active. Among other things, I have applied to disability four times, all of which came back as denial. According to the state of Maryland, I am a capable able-bodied individual whom is capable of pulling in $848 a month (which I am not sure in what universe provides enough money to live anywhere in the state, or any state for that matter).

There is a lot more to my story but that is the short of it. Please feel free to ask any questions, I am an open book. I am also currently working with a county official to start up a Scoliosis and chronic pain support group for my area in Southern Maryland, as we do not have one. It will be starting with some sort of Zoom program most likely due to the pandemic, but once safe, transition into a in person meeting group.

1 Heart

A very powerful story. My daughter is bipolar plus has extreme anxiety. She was also refused disability compensation several times until she acquired an attorney and made personal appearances at hearings with doctor's diagnosis. Have you tried a lawyer that specializes in disabilities? Good Luck!!

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Thank you for sharing your story. You are an excellent writer :)
My sister actually has/had scoliosis. I think her curvature degree was 34. The brace worked well for her, so she has not had to attempt the surgery. She actually named the brace "Squeaky," lol! Sometimes I work on her back and it's like an alien landscape to me. Her trapezius is a monster of knots and swollen tissue. She is so tender there. Further down, the right side of her back actually humps out and it's as solid as a rock. Thankfully no pain in that area for her.
The rest of your story though I totally identify with. My chronic pain started when I was 12, in and out of hospitals/doctor offices, struggled through college, discovered working and ignoring rising pain was a BAD idea, more hospitals and surgeries, chronic insomnia, etc. Plus the massive emotional problems that come with all of this. And no luck with getting disability either.
Welcome to our support groups! *bows* Know that you are not alone in this.

How old are you and your sister? Chronic pain is no joke whether it's scoliosis or not. I have a load of atrophied muscles all over my back and most of it's in knots that his muscle I'm not really sure which is which. There's a section of my back from the recent surgery and it absolutely has no feeling and when I get goosebumps there are no goosebumps in that area.

I would have to do say that I'm not sure whether I ignored the pain or if I got used to it and because I got used to it I didn't know if I was ignoring it until it was too late. But just about every year I have new symptoms or new problems is something going on in my body and sometimes I just have to did you stir them or find some sort of way to Medicaid which I would never have to do until recently.

This year is the first year there were 20 years that I've actually been able to gain any weight and know that the metal is out I'm less worried about gaining weight and what things it could do to my hardeare.

Do either of you have Hardware?

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I just got my surgery and I have tons of questions

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Thank you for sharing the story. I have scoliosis since 12 and didn't receive proper treatment so my curve has gotten worse. I'm 25 now, just started wearing braces and it's been endless pain and bruises ever since. Sometimes I can't endure the pain and just got sick of wearing it every day, however, your story really helps me to cope with my condition, just so I know that I'm not the only one who suffered from scoliosis. Wish you the best and keep sharing knowledge about scoliosis and chronic pain!

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@renstylesp Hey fellow scoli sufferer. Hop over to the Scoliosis forum and find a great routine that I used to help me. Now my curve is almost none. I am here for you if you need more help. I suffered sciatica for over 2 years, low back pain for over 25 years, and never knew I had scoliosis until after I got the sciatica. I found a series of great pain-specific therapy routines and so far for the last 5 years each of them has worked great. I post in each of the forums.

I’m fused C4-5-6, T2 through S1.

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@Jackba57 I would suggest you seek the help of any Egoscue clinic. I used their methods to get rid of a host of chronic pains. They would be better suited to help you since you have fusions.