Describe your case!
DrMAvDPhD
Posts: 2,097 Member
Scoliosis affects everyone differently. Let's use this topic to compare notes, and find people with similar situations!
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I'll start:
I am now 24, and I have an S-shaped curve. My lower curve is about 40 degrees, and upper is 20-25. I wore a Boston Brace from ages 12-16. I am now on a schedule of getting monitored every 5 years, and haven't shown progression since about 7 years ago. I am hoping to not ever need surgical correction. I also have hypermobility, which often goes hand-in-hand with scoliosis.0 -
Hi everyone! I am 53 years old and was diagnosed around 12 or 13 with a mild curve. My mother noticed that I had one shoulder blade that stuck out farther than the other. The doctors monitored it through high school and gave me stretching exercises to do. It seemed to stabilize so I didn't really worry about it anymore. Fast forward to my late twenties, after my first child, I began to have lots of back pain. I attributed it to hauling a toddler on one hip and groceries in the other hand, etc. Finally went to the doctor to check it out to find that my curve had worsened considerably. I don't recall the degree at that point. I was monitored by several doctors over then years and it had progressed to an 85 degree curve when I finally found a GREAT doctor in Rochester, NY. I had spinal fusion surgery in 2005. He removed a major rib hump and realigned me fairly well, fusing my spine from T2 to L4. That leaves me with one disc left at the top and one disc at the bottom of my spine. The rest is pins and screws and fused spine.
It took me years to recover from the surgery, but it was the best decision of my life. I am currently "learning to run" this summer and have signed up to run/walk a 5K in August. I am a high school math teacher so I am on my feet a lot. If not for the surgery I think I would have had to retire as a disabled person.
Looking forward to hearing all your stories!0 -
I am 39, I was told that I had scoliosis in high school. However I had the first showings of it at a younger age I believe. I was taken in by my mom after not being able to get rid of a headache for months. When I finally went in, the x rays showed an S shape curvature. With 3/4 inch off at the hips and 1/2 off at the base of the skull going the opposite direction. They also found I had no natural curvature of the neck.
I went for treatments for about 6 months or so. The headaches went away but my hip began to hurt. I haven't been back to a doctor about my back since. But it is still very much a factor I live with. If I stand for to long it will hurt and my hips often cause me pain. Or my legs to go to sleep. My neck is always fairly touchy and I have an area in my middle back that has very little sensation.
All in all it sounds much worse than it is most days but when it acts up, I am down for the count.0 -
Hey everyone! I just found this group! I can tell you what I remember about my situation. In middle school they discovered that I have scoliosis. An S curve. I can't remember what the degrees were. I wore a brace for awhile. I hated it, it was embarrassing to have to wear it to school. I guess it wasn't really working for me, so in 1991, when I was in 7th grade, I had back surgery. Herrington rods placed along the entire length of my back. After I recovered from that, I felt great! I had confidence again. I played softball and volleyball in high school with no issues. Fast forward to 2004 when I was to give birth to my son. I was told I would not be able to have an epidural. YIKES!!! But I obviously got through that and I gave birth again in 2009 to my daughter. But my God, I had the WORST back labor. Anyway, now currently I have back pain every single day. It doesn't go away. I know that my weight is not helping the situation so I'm working on that now. I"m sure if I strengthened my back muscles more too, that would help. But my lower back pain is DEFINITELY present and it's all day, every day. I feel like I"m probably going to have to live with it forever, unfortunately. But I came here to see if anyone else knows a way to find relief!!0
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I wore a brace for awhile. I hated it, it was embarrassing to have to wear it to school.
I completely understand your point here. I was mortified when I first started wearing mine, and the teasing never stopped. I was lucky enough to only have to wear a half brace and not the type that goes up under your chin, and was able to mostly hide it with clothing, so most people never even knew I had it. But my "friends" would tease me. I was so obsessive about what I would wear to hide it :-(0 -
Ugh, same here about the back brace. I had to wear mine to school in junior high and into high school. Junior high kids are awful to begin in, imagine how much more awful they were to the kid with the back brace. Not a couple of very fun years...0
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I wore a brace for awhile. I hated it, it was embarrassing to have to wear it to school.
I completely understand your point here. I was mortified when I first started wearing mine, and the teasing never stopped. I was lucky enough to only have to wear a half brace and not the type that goes up under your chin, and was able to mostly hide it with clothing, so most people never even knew I had it. But my "friends" would tease me. I was so obsessive about what I would wear to hide it :-(
My brace only came up to my chest. I hid it with my clothes too, but you could still tell that I had one on. Now i"m just self conscious of how uneven my body is. You know, uneven shoulders, should blades, hips. My fat rolls don't match...ughh! That's why i gotta just get rid of them!0 -
Glad to find this group, as I find there are some things I need to be careful about, specifically with intensity cardio. Agree with previous post, low and medium intensity are usually ok, but running and high impact generally result in some severe back/leg pain for me the day after. I have invested in a trainer to help understand from a lifting standpoint what the 'safe' exercises are, and I find that as long as my back is supported when lifting heavy weights I am usually ok. strengthening my core has also helped a good bit in terms of post workout pain. 0 -
Now i"m just self conscious of how uneven my body is. You know, uneven shoulders, should blades, hips.
Me too- I'm getting married in October and had my first fitting for my wedding dress last week. The way my dress hits me, I look so uneven in it. Thank goodness for the fabulous seamstress at the salon who knew exactly what to do to "even my dress out".0 -
I have always had a magnificent spine. I was injured playing field hockey at the age of 13 and received all kinds of treatments and continued with regular chiropractic care for years. I married and moved out of state and found a new chiropractor. During a new patient x-ray, it was discovered that I have a significant lumbar curve to the left and neck curvature requiring traction. It was made worse during pregnancy. I carried very large twins to 37 weeks and they sat extremely low, even requiring physical therapy to strengthen the muscles surrounding my hips, back and lower abdominals. Now some days are better than others. I'm just trying to get my active, healthy lifestyle back and shed a few pounds of baby weight as well. Any exercises that are easy on the spine or low impact are right up my alley. Let me know if you have any! I also have fibromyalgia so things in the water are more comfortable too. That's me in a nutshell. I'm 29 now and just making it work as best I can. Lovely to meet all of you!0
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Hi, I just was lucky enough to get scoliosis in the ripe age of my 50's. I do not think I had it before. No one ever said I did. I have a messed up spine from neck to lower back and this is the cause for me. I am so glad to find this group here. My body is like "shoved" to the left. I can not stand straight up with both feet together. Here now I feel you all will understand when i say these things. Good luck to us all.0
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I am 38 yrs. old with a slight S curve. I was diagnosed in 7th grade. It was not severe enough for a brace or surgery. Just monitored. It didn't bother me too much til I was pregnant at 18. I had lots of lower back pain throughout all 4 pregnancies. Now, I hate how I seem to carry more fat on my right hip. I'm a little short waisted on my right side. It's sometimes hard to but jeans. My right shoulder is lower, so shirt and bra straps fall down a lot. Glad I found this group. :drinker:0
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Now i"m just self conscious of how uneven my body is. You know, uneven shoulders, should blades, hips.
Me too- I'm getting married in October and had my first fitting for my wedding dress last week. The way my dress hits me, I look so uneven in it. Thank goodness for the fabulous seamstress at the salon who knew exactly what to do to "even my dress out".
Oh, that's awesome that the seamstress knew just how to fix it! Congrats on your wedding too!
I've always wanted what I can never have now....a sexy, feminine back. Now it's just uneven and scarred.
I'll have to try ice. I've always used heating pads. It seems to help me a little, but it never lasts. I've never gone to my doctor about my back pain. I've thought about it, just never took that step. I don't really want to go on any medication if I don't have to so I'm trying to lose weight to see if that helps.0 -
I've always wanted what I can never have now....a sexy, feminine back. Now it's just uneven and scarred.
I'll have to try ice. I've always used heating pads. It seems to help me a little, but it never lasts. I've never gone to my doctor about my back pain. I've thought about it, just never took that step. I don't really want to go on any medication if I don't have to so I'm trying to lose weight to see if that helps.
This is me at "goal weight"
I hate this picture, it sent me into a 3 day slump. If, at 135 and 23%BF, I still have a "roll" on my crooked side, how will I ever be happy? I'm hoping to cut to even lower body fat now to see if it goes away, but I have a sneaky suspicion that I will always have a roll of skin somewhere and never really be happy with my "naked" body (I am pretty good at dressing to hide the crooked).
As for going to the doctor, I have had multiple doctors tell me things such as (1) Most people with scoliosis don't even have pain (yeah, right) (2) There is nothing to do but lose weight (done that, it helps, but still have pain). I usually cry at least once at a visit with an ortho because it seems like they just don't get it--the pain, the discomfort, the body image issues. Maybe it's because they have all been men?0 -
I've always wanted what I can never have now....a sexy, feminine back. Now it's just uneven and scarred.
I'll have to try ice. I've always used heating pads. It seems to help me a little, but it never lasts. I've never gone to my doctor about my back pain. I've thought about it, just never took that step. I don't really want to go on any medication if I don't have to so I'm trying to lose weight to see if that helps.
This is me at "goal weight"
I hate this picture, it sent me into a 3 day slump. If, at 135 and 23%BF, I still have a "roll" on my crooked side, how will I ever be happy? I'm hoping to cut to even lower body fat now to see if it goes away, but I have a sneaky suspicion that I will always have a roll of skin somewhere and never really be happy with my "naked" body (I am pretty good at dressing to hide the crooked).
As for going to the doctor, I have had multiple doctors tell me things such as (1) Most people with scoliosis don't even have pain (yeah, right) (2) There is nothing to do but lose weight (done that, it helps, but still have pain). I usually cry at least once at a visit with an ortho because it seems like they just don't get it--the pain, the discomfort, the body image issues. Maybe it's because they have all been men?
Oh mavd, I can so relate to you. That is just how my body is crooked, crooked. I see it, I tell my husband look at this, he does not see it, says it is just me because I know I am crooked. I have shown my ortho and he said he does see it. I had a cute, clingy black dress for our cruise and you could see it in the dress! It is frustrating to say the least. I am still quite heavy, but I tell you. I had curves when I was younger and I am getting those curves back, on ONE side! Let's hope they come up with something that can straighten us out. Good luck to you and I think you look AMAZING from the back, even with the bit of crookedness. Good job on reaching your goal weight.0 -
I've always wanted what I can never have now....a sexy, feminine back. Now it's just uneven and scarred.
I'll have to try ice. I've always used heating pads. It seems to help me a little, but it never lasts. I've never gone to my doctor about my back pain. I've thought about it, just never took that step. I don't really want to go on any medication if I don't have to so I'm trying to lose weight to see if that helps.
This is me at "goal weight"
I hate this picture, it sent me into a 3 day slump. If, at 135 and 23%BF, I still have a "roll" on my crooked side, how will I ever be happy? I'm hoping to cut to even lower body fat now to see if it goes away, but I have a sneaky suspicion that I will always have a roll of skin somewhere and never really be happy with my "naked" body (I am pretty good at dressing to hide the crooked).
As for going to the doctor, I have had multiple doctors tell me things such as (1) Most people with scoliosis don't even have pain (yeah, right) (2) There is nothing to do but lose weight (done that, it helps, but still have pain). I usually cry at least once at a visit with an ortho because it seems like they just don't get it--the pain, the discomfort, the body image issues. Maybe it's because they have all been men?
Mavd:Firstly well done on reaching your goal weight.
Have you tried the Schroth Exs method.You can google it on You tube.Also try "Rolfing Technique for scoliosis" It can help to correct the "visuals" and maybe protect the compressed nerve tissue and structures getting pinched.Also pay attention to stretching out your diaphragm muscle Breathing is soooo important with this.
I have a mild curve at mid thoracic level causing my right shoulder to drop and ribs to rotate and hump on right side but I find If I do the exercises routinely I get "straighter".
You have to think of your body in 3Dsense as rotating tight like an X at the front and weak at the back.Try and figure out what band of muscle is twisting you tight and stretch and strengthen as appropriate.
Also keep the hip joint and piriformis /glute muscles mobile and stretched on the tight side.It allows the rib hump to relax.
Hope this helps.I'm really glad I found this group 0 -
Hi all, just found this group. I am 38 y.o., diagnosed at age 15. Scoliosis runs in my family - both paternal grandparents, dad, brother, and sister...but thank goodness it skipped my daughter so far. I have an S curve that is about 40 and 45 degrees and they predict it is progressing at 1-2 degrees per year and will continue to do so no matter what. That is freaking frustrating.
I used to be a dancer & still teach and occasionally take class. Pilates helps me A LOT - I have found an instructor who gives me a discount because "girlfriend, you need it" as she says. Other than that, I do yoga, walk (running is too painful), do an occasional boot camp, bike, hike and kayak. Even still, I'm in pain every day. I have many prescribed drugs that I try not to touch, like I have to be physically incapable of walking before I do. I have a lot of years to manage my pain & I'd like to not kill my liver.
and, UGH, I totally relate to the roll - HATE. IT. I'm only 6 lbs. from my goal weight and I don't think that damn roll is going anywhere.0 -
Hi everyone, just joined this group and so far I love reading all of your experiences and knowing that I am not alone in my worries and aches and body issues.
I was 12 when they found out I had scoliosis. My dad has it too (much less extreme though), but none of my other family members have it. When I was 15 I had surgery to put a rod against my spine and screw it tight. I have a 50 degree C-curve in the lower half of my spine, luckily in the part of my back that moves the least, so I retained almost all mobility in my back. The only thing I really can't do anymore is swimming (just on my back is ok), because my spine can't go that hollow anymore (to keep my head above the water).
I think I still experience pain everyday, but it has been so long that sometimes I think I don't know the difference anymore. It's just there, you know?
Besides my large scar on the side of my body (they went in from the side) and a missing rib, I also experience the frustration of having a crooked body outline... It seems as though my upper body (from the waist up) was moved to one side a couple of cm, leaving my with a straight waist on one side, and an extreme hourglass shape on the other side.
I mostly cover it up with loose t-shirts and A-line dresses. My boyfriend says he doesn't really see it, but he does notice that my ribs stick out on one side way more than the other (quasimodo anyone?). I did ballet during the time my scoliosis developed, and because my teacher wanted all of us to have straight shoulders, one of my shoulders is much stronger/tighter than the other, since I had to hold it up so much. My teacher says that that's why she never noticed anything was wrong with me. Now, I have trouble relaxing that shoulder, so I actually seem more crooked than I am, lol...
Well, this turned out to be a long post, but I haven't been able to talk to anyone about my experience like this. So for anyone still reading: Thanks!!!0 -
mswinter, my ballet teacher has become a very close friend of mine in real life and she admitted that not catching my scoliosis is a huge regret for her and made her more aware. I keep a close eye on my own students. Scoliosis or not, all dancers find ways to compensate/hide their imbalances! I also have a huge "hourglass" on one side and hardly any hip on the other, which is a sign I look for in my students.
I sometimes wonder what it's like to not feel the way I do, if my "pain" is just discomfort and how it compares to other people. I've become used to it too. All you can do is work with what you have, right? It can always be worse. I am grateful that I can still be as active as I am.0 -
I sometimes wonder what it's like to not feel the way I do, if my "pain" is just discomfort and how it compares to other people. I've become used to it too. All you can do is work with what you have, right? It can always be worse. I am grateful that I can still be as active as I am.
I agree completely with that! Just yesterday I saw a man in a wheelchair who didn't have any legs to stand on, and suddenly it felt so shallow to complain about a little crookedness, when I can still walk and do most other things. I really believe that we have to stay positive about our scoliosis, because as you say: we can still be active! (at least the ones in this group as far as I know...)
Yay to us for trying to stay fit and lead a healthy life!0 -
Your post really reminds me of myself. Your description of the hourglass waist on one side while straight waist on the other is so me. I hate it. I have lost 4 inches in height and feel like I have been squished down to one side and totally lost that side of my waist. And "quasimodo", you bet. Until I had my surgery my rib hump was so bad that clothes would actually be too short on that side. When I would look at myself in the mirror clothes would look great from the front, then I would turn sideways and want to cry because everything was so distorted. Even since my surgery, which has straightened me out considerably, I still am self conscious about how things look. I am down to 118 pounds and I still can't wear fitted tops. I live with layers (jackets, cardigans, vests) so I can hide all my twists. Ugh! But talking with everyone here makes me feel better. I know I am not alone, and I am lucky that I can be as active as I am. Thanks girls!0
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Whoa! I'm actually inspired by the success stories i've been reading on this website (i just joined today) .. So here's my case.. I never really took backache seriously till last year, when i could barely move because of the pain.. Before that i'd assume it's probably due to lifting weight, shifting furniture, having been overworked or stressed out or just about any other reason except for a physical condition.. I was pretty active that way.. Last year the pain started and only became worse, turned out i had 3 slipped discs, L3-s1, spinal stenosis and mild scoliosis.. physiotherapy didn't help and eventually in January, i had to go for surgery.. that took care of the slipped discs, but the scoliosis is still there. According to my doctor, mild scoliosis doesn't really need surgery. i just need to lose weight in order to lower any risks associated. Problem is the only exercises allowed are walking (slow) and swimming. I'm a teacher and have joined back at work after an 8 month leave. Swimming has helped strengthen my back and stamina however, my schedule has been so busy ever since i joined back at work that i've had to skip swimming- for about a month now.. Intend to join back on Tuesday. For sure!
One more thing i'd like to share - i was a vegetarian since childhood. And post surgery, my doctor has put me off of most veggies since some of them (mostly greens) contribute to increased levels of uric acid.. So far i'm experimenting with food options which would be suitable for me to lose weight and gain health .. Really need my blood test reports to come out normal.0 -
Whoa! I'm actually inspired by the success stories i've been reading on this website (i just joined today) .. So here's my case.. I never really took backache seriously till last year, when i could barely move because of the pain.. Before that i'd assume it's probably due to lifting weight, shifting furniture, having been overworked or stressed out or just about any other reason except for a physical condition.. I was pretty active that way.. Last year the pain started and only became worse, turned out i had 3 slipped discs, L3-s1, spinal stenosis and mild scoliosis.. physiotherapy didn't help and eventually in January, i had to go for surgery.. that took care of the slipped discs, but the scoliosis is still there. According to my doctor, mild scoliosis doesn't really need surgery. i just need to lose weight in order to lower any risks associated. Problem is the only exercises allowed are walking (slow) and swimming. I'm a teacher and have joined back at work after an 8 month leave. Swimming has helped strengthen my back and stamina however, my schedule has been so busy ever since i joined back at work that i've had to skip swimming- for about a month now.. Intend to join back on Tuesday. For sure!
One more thing i'd like to share - i was a vegetarian since childhood. And post surgery, my doctor has put me off of most veggies since some of them (mostly greens) contribute to increased levels of uric acid.. So far i'm experimenting with food options which would be suitable for me to lose weight and gain health .. Really need my blood test reports to come out normal.
Hi, may I ask what they did in the surgery for the slipped discs? I have a subluxation, so the discs are rubbing over one another. They wanted to do an Xstop years ago, but it was so new, I said no thanks. Now I am reconsidering. Just wanted to know what you might of had done. Thanks. Glad you got relief.0 -
Hi everyone!
I just found this group and wanted to tell my story, since i 'got' my scoliosis in a horrible way.
When my mother was giving a birth, the doctor couldn't get me out so easily so he pulled my left arm and broke it. He also broke my nerve in shoulder that gives information to the left hand. This isn't so rare and it's called pareza plexus brachialis. Thank god i could move my hand(because some babys can't, their hand is 'dead'). From 10th day of my life i went on phisical theraphy and i stopped when i was 12 years old. I had to swimm 3 days a week 10 years(i started when i was 5). Because of pareza plexus brachialis i couldn't do everything with my left hand so i got scoliosis in S curve.
Few weeks ago i even found that my mothe could have sued the doctor... but what's the use of money we would get when this thing is something you cannot undone.
Today, i'm 21, i don't have any majore problems with it. I can't lift my left hand in some positions, but it doesn't bother me, i'm righthanded anyway
Thanks for hearing my story0 -
Hi Missklara. Thanks for sharing your students. One of my ballet students has the same condition, but no scoliosis as far as I can tell. It's nice that you have such a great attitude about it.
this message board is ridiculously quiet, I wish it was more active.0 -
this message board is ridiculously quiet, I wish it was more active.
I agree. Post, post, post!0 -
Hey Everyone,
I'm brand new to this group. And was excited to see there was a scoliosis forum already started. I am 23 years old CW: 124 and height 5"3. I was diagnosed when I was 14 with scoliosis,I forgo-ed the surgery when I was younger in order to see of the curve would stabilize or not (under chiropractors recommendation). Sadly, the opposite occurred, after years of yoga exercises, and non-surgical treatments (Lancaster spinal health clinic) I am on the list for the surgery (Canadian health care). I met with the doctor on Dec12, 2012 and am tentatively booked for next Oct 2013. They will be inserting two metal rods on both sides of my spine in order to correct the curvature of 70 degrees. I have a C shaped scoliosis which is largely focused in the thoracic lumbar regions (L4 - T10).
So that is the fun diagnosis, personally, it has greatly affected my quality of life. Most days end with a handful of painkillers and heating pads. Exercise is tough, I feel great while exercising but post workout the muscles which are not normally used Squawk! loudly. But I still aim for the best food/ exercise routine I can. I feel that it is specially important for patients with spinal disorders to ensure that their health is maintained, even though our bodies often rebel against us.
This may sound vain, but I am young still, and yes there are many days where my scoliosis does not physically hinder me. But I find some-days the hardest thing is looking in the mirror and remembering to love yourself no matter what. When I was pursuing non-surgical treatments in the US a few doctors commented that the correlation between scoliosis and self cutting, self hatred, suicide rates are significantly higher then in the "normal" population. I was blessed with a family which was able to maintain my "self love" and confidence, despite obvious deformities. However, my heart goes out to those who may have not had the same support, especially during those tough adolescent years.
I hope you all have great success with your futures
Megan0 -
Wishing you a successful surgery Megan. I'm so sorry you have to go through what you do, but it sounds like you have an awesome attitude and a lot of family support. Keep us updated.0
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Welcome to the group Megan! Fingers crossed that all goes well for you, please check in with us so we know how you are doing! There are several women in the group that have had the surgery, perhaps you should friend them for extra support!
As for your body image discussion, I think we can all relate to that. I wore a hard plastic back brace for most of middle school and high school, it was awful! I'd never heard the stats on increased risk for self-harming but I'm really not surprised. I know I went through periods of severe depression during those times.0 -
Thanks for the welcome. I will keep you all updated on any surgery updates. 0
This discussion has been closed.