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View Full Version : My Scoliosis Story ( A Man's Struggle )



depressedman
05-25-2012, 02:31 PM
Hello Guys , first i'd like to thank that recent yahoo article about scoliosis that gave me an idea to search for a scoliosis support forum , I searched years ago but there wasn't much back then , so thanks to this forum and to Joe for accepting me here.


I'm not good in expressing my thoughts so here it goes... When I was still young , I hardly noticed anything different from my back. It was in grade 6 ( 12 years old ) when I stretched my arms as far as I could on both arms and then looking at my back in the mirror , I noticed there was something wrong with my shoulder. My uncle who's a doctor just told me to correct my posture ( no clue it was scoliosis that time ) and i'll be just fine.

It was when I was 15 when I started to grow fast during the summer. I always noticed why I look weird in my pictures , my head was like leaning to the other side and I wasn't facing straight in pictures. Still I choose to ignore it and it doesn't seem to look that bad. Last year in highschool , 16 , again i grew a few more inches and my scoliosis progressed even further. This was the start of my struggle. When I began to be conscious especially when im not home , at school , mall and any other public place. I keep thinking about my back and how some people would say something that I slouch. I come from a country where a 6 foot male ( and up ) is an uncommon height and you will "easily" stand out in the public crowd , and you hear people saying you are so tall, are you a basketball player or something. My fear of people saying something about my back kept me from enjoying my last days in highschool , it was a painful struggle knowing my condition will only worsten if I don't do something about it.

So it was in 1st year college that I finally decided to talk to my parents about it and it's been my kryptonite for a few years now. So we went to see the an ortho doctor and I was hoping that he would suggest I use a brace but he told me it was too late , my bones are already mature and he couldn't do something with my curvature. I think it was around 30-40 that time. The physiatrist also measured my curve and suggested to my P.T some scoliosis exercises. Everytime I go in hallways in school I'm always nervous , I have heightened hearing so I can easily hear if people are saying something behind my back ( there were times when I could hear them that it would really make me sad ). In classes , I usually sit at the back and I would be so nervous if the teacher would call me to get my paper's or speak in front. You see , I have no problem in public speaking in a large audience , it's just that going there to that point ( in front facing the audience ) , people will get to see my back.

I'm a type of person when I want to do something I do it , but because of my fear , it draws me back into sadness. I should have been active in the student council , or played in the basketball varisity , or took law or medicine or wear tshirts or just relax while walking in school and not rushing like there's no tomorrow , but I couldn't =( I know for some people it's just a state of mind , or try to ignore what other people say about you , but it's hard. It's really hard... I don't know if some guys here can relate to this but if there's one way to cure scoliosis ( or I didnt have one ) , I would have been 200 percent better than what I am today.

Anyways after college , I still have social issues with my back. I always wear short sleeve polo's or long sleeve polo's folded 3/4 and it has to be a dark color , or has a pattern or the cloth must not be visible. I know some guys here might think it's weird but It's my way of coping up with my fear. Sometimes I also carry a bag so it hides my back , not sure if it works but it makes me comfortable wearing it in public when going to the mall. My relative, who's a young ortho surgeon who has operated in a lot of spinal cases ( and some scoliosis cases ) suggested that I be operated last year. My curvature was already severe ( I think 55 - 60 degrees ) and he told me it needs to be corrected. I have no doubt in his abilities but an operation would never be thesame. I'm afraid of not being to move freely like in playing sports , and having a scar on my back or even any post-conditions that might happen after the surgery. So this is me now , a man who has no fear in life except when someone looks/comments at my back.


When Im facing infront of people I have no problems ( not sure why but I somewhat seem normal in front or people dont notice it ) until I turn my back. My back doesn't really hurt except when I stand for too long, like 2 hours or more when I put my hands on my hips to ease the pain a bit. I know my life has been unsymmetric for years now but im still hoping there's a cure to my fear , and reduction of my curvature .I have seen an article a few years ago about a patient who was treated during the 1900 - 1930 ( not sure what exact date ) and this girl was not operated but instead she was given a set of stretching exercises to correct her curvature and was considered successful. I also saw a youtube video that yoga can help with scoliosis , and I read of a news article of a male yoga teacher who has scoliosis , and been practicing for 3-5 years, corrected at least 5 percent and he grew an inch or so. I haven't tried yoga yet or visited a chiropractor. But im saving up some funds for abroad hopefully next year , to have my back checked by a chiro there in the states or maybe a yoga scoliosis instructor. My last resort would be operation , but I really hope it won't happen. It might correct my fear, but I would never be thesame.

figgy
05-25-2012, 07:47 PM
Hello,

I hear you and I've been there. Like you I was diagnosed too late and so my only option is surgery. I had a 60* thoracic curve when I was diagnosed at 18. I am 23 now. Also like you I was teased throughout school (called a gorilla!), my posture was always commented on, I was always being told to stand up straight. Until about a year ago, I was very very self conscious of my spine, very conscious of what I wore (like you, dark colours, baggy shirts) and would get very depressed about my scoliosis, my pain and my appearance. My passion is dancing, but I quit because I was so horrified by my shape. And also like you I absolutely did not want surgery, afraid of getting metal in my spine not being able to move as freely. So you can see our cases are very alike!

However! Now I stand tall, I have gained self confidence, I dont worry about what people think and I am in no pain (check out my thread 60* scoliosis and pain free to save me repeating myself! Also check out my then and now pics on that thread to see how my posture has improved :)!) Why? Because I took responsibility for my own happiness. You are the only person who is responsible for that. It is probably not possible to improve your curve without surgery, but it is certainly possible to improve your posture and your attitude! Iyengar yoga is awesome, as is Bowen therapy, massage, regular exercise, stretching, hiking, dancing, perspective, good food, friends, travel and fun :)

depressedman
05-25-2012, 10:59 PM
About iyengar yoga, do you need a scoliosis expert to do the poses or all poses are fine ? Btw I can't see your pics



Hello,

I hear you and I've been there. Like you I was diagnosed too late and so my only option is surgery. I had a 60* thoracic curve when I was diagnosed at 18. I am 23 now. Also like you I was teased throughout school (called a gorilla!), my posture was always commented on, I was always being told to stand up straight. Until about a year ago, I was very very self conscious of my spine, very conscious of what I wore (like you, dark colours, baggy shirts) and would get very depressed about my scoliosis, my pain and my appearance. My passion is dancing, but I quit because I was so horrified by my shape. And also like you I absolutely did not want surgery, afraid of getting metal in my spine not being able to move as freely. So you can see our cases are very alike!

However! Now I stand tall, I have gained self confidence, I dont worry about what people think and I am in no pain (check out my thread 60* scoliosis and pain free to save me repeating myself! Also check out my then and now pics on that thread to see how my posture has improved :)!) Why? Because I took responsibility for my own happiness. You are the only person who is responsible for that. It is probably not possible to improve your curve without surgery, but it is certainly possible to improve your posture and your attitude! Iyengar yoga is awesome, as is Bowen therapy, massage, regular exercise, stretching, hiking, dancing, perspective, good food, friends, travel and fun :)

JenniferG
05-26-2012, 01:53 AM
Welcome to the forum and I hope you can gain some insight, some empathy and some good suggestions. There are many here who have excellent knowledge of scoliosis and others who have loads of experience to share.

It's so sad reading of your social torment, one which seems to affect men more than women, from my few years on this forum.

"My last resort would be operation , but I really hope it won't happen. It might correct my fear, but I would never be thesame."

No, you would never be the same, but nor would you want to be, from your post. Instead, you'd be straighter, more confident and, after healing, probably be able to do anything you can now, though some things would be done slightly differently. Importantly, you would live with the knowledge your curve won't continue progressing.

If you have specific questions, ask away, and in the meantime, hopefully more men who have suffered in the way you have, will join in with their understanding. Because you are not alone.

figgy
05-26-2012, 03:01 AM
About iyengar yoga, do you need a scoliosis expert to do the poses or all poses are fine ? Btw I can't see your pics

Re Iyengar yoga, look for a small class setting and look for a really knowledgable instructor who has good anatomical knowledge and ideally experience with scoliosis because depending on your scoliosis some poses have to be amended and some are more beneficial than others.

figgy
05-26-2012, 03:06 AM
13231324

re pics - ^^

depressedman
05-26-2012, 04:02 AM
That is one sexy back =)

I have some questions about operation.


a. After operation, you'll be limited in body movement right ? So nothing really physically intensive for ex : basketball , situps , boxing , etc ? Or go to the gym and lift weights is not possible ?


b. My uncle , cousin ( both md's ) and my other cousin who's has a ( ortho md ) if I don't get operated I wont be having problems in the long run. Im still 28. My ortho md cuz wants me to be operated so it would stop the curvature and prevent any future back complaints.


c. About chiropratic - if you have a 50-60 degree curvature can it be lessened ? If it has been successful for you , can you recommend who/where ? I'm trying to list them down for my future trip.

Kat3573
05-26-2012, 04:19 AM
Ur story is almost like mines!!!! But I'm much younger than you

I told my parents and they were like your fine then last minute we go to a doctor and he suggested surgery I'm scoliosis is VERY visible like one shoulder is a couple inches higher than the other my ribs stick out I lean towards two different sides
I'm NOT exaggerating
Who cares on what people thinks about your back it part of you and u shouldn't be ashamed of yourself! Who cares what people think it's not like your going to marry them (unless u r then I don't know why to tell you). I used the freak out about my back but my friends were really supportive and now I don't give a dime on what people thinks

Everybody in my class know some people r supportive and some people aren't but I just ignore it I honestly don't care if it's 30-40 it shouldn't be that visible I gave a friend who's 33* and you can't even tell! But again it depends on how decompensated u r ( I'm like 1.6 I think)

Hope u don't mind that I'm under 18 (this form is for 18+ but I
Wanted to see ur thread)

rohrer01
05-26-2012, 04:07 PM
Depressedman,

Welcome. Your story is similar to mine, except I'm female and much older! I'm 43 and was diagonsed late, although I complained for years about pain in my upper back and neck I never got checked out until the summer before my senior year at 16. I don't have the slouching posture. I "had" one shoulder so elevated that I eventually had to start altering my clothing to fit me. Otherwise, anything with a strap would fall off of my low shoulder. I eventually started having chronic pain that was increasing. I thought I would try chiropractic for pain since my approximately 40* curve wasn't large enough to be operated on. I went through the treatments for about two years and the pain was still increasing. I also noticed that I stood "balanced" in that one shoulder was no longer higher than the other, but the ribs on my "low" side were starting to protrude. I went back to my spine specialist and low and behold the chiropractic "treatments" had WORSENED my curve and turned my once single major into a double major curve. Now it is just a matter of time before I'll need surgery. I strongly caution you NOT to go to a chiropractor. I was told never to go back by several doctors (even ones that supported my decision at first). Please, please, please be careful. I am now in more pain than when I started, still not at surgery level, and I'm twisting (my belly button is about 2cm off center. I'm very "curvy" on one side of my waist and straight up and down on the other side. I've learned what kind of clothes conceal it, so that no one notices, but I know. My husband tells my that I'm beautiful, but that's what husbands are supposed to do! =) My flexibility had decreased significantly also. So with that, you don't have to have fusion to be limited. Twisting from side to side is limited. I can't turn my head very far to the left when compared to the right. I can't put my chin to my chest anymore OR tip my head far enough back to get that last sip out of a pop can. All of this happened after chiropractic. My curve was broken loose then started to progress.

I'm doing what I can. I started exercising at home and now at they gym. I'm trying to gain some muscle mass to help strengthen my spine in hopes of getting rid of pain and slowing or stopping progression. But in reality, there is no real proof that exercise helps with anything but pain. There are a few on the forum using it to help their still growing kids that seem to be having success, but without knowing the actual path that their backs would or would not progress absent exercise, it's hard to really know. I say this because one of my sons had juvenile scoliosis that completely straightened on its own and he no longer has any curve. He didn't have any treatment at all.

Anyway, I'm not trying to make you feel hopeless. Surgery is a huge step and it scares me, too. But if given the option, I would probably eventually go that route myself, just not now (I'm not mentally prepared for it). IF you decide to have surgery, I would advise being in the best shape you can be (if it's not urgent) to make your recovery easier.

Best wishes for a happy future!
Rohrer01

Jenna.KB
05-28-2012, 06:01 AM
Hi all,

Welcome to depressedman sorry to hear you felt so conscious at college etc. Like Kat3573 says you should be ashamed of who you are, let people look or make comments they don't know you! I found out I had scoliosis at 12 and put on weight and wore baggy clothes to hide my shape but as time went by I realised if people looked or passed comments it hurt a bit but they couldn't really hurt me if that makes sense. I just have the attitude that I am lucky to be who I am and have the friends and family I have, there are always people in a worse position than you both medically and physically. Also I bet you will see your differences far more than anyone else. When I'm in a bikini my shape is so obvious but in clothes everyone but scolioisis sufferers say they can't tell there is anything wrong. You just be you and ignore all the negativity!.
Re: Yoga-
By way of background. I have a S shaped curve, the bottom curve was worse so was fused when I was 13yrs. It stabilised the bottom but not the top. I had a severe rib hump on the right and needed a costioplast to try to correct this. I also had yrs of physiotherapy to correct my posture because my head and hips were'nt in line. In 2010 I noticed my pain getting unbearable so tried different medication, less exercise, massages and yoga. Whilst the moves are addapted for people with scoliosis I found my pain was a lot worse after yoga sessions. I kept going to classes once a week for a few months then realised the bending and stretching was too much and was causing too much pain.
I have never heard that yoga or chiropractic has decreased curves of your size and don't see how it could (sorry). My top curve has npw began moving again, now at 104 degrees and is pulling my bottom curve out even though there is a rod there so if I rod cant keep my top curve still I don't think yoga would either.

Re: surgery.
Even though I am now having to have full fusion with possible pelvis fusion my op when 13yrs is the best thing I've ever done. I got straighter, taller and my pain decreased. After surgery you are very limited but after 8-12 mths I was back exercising, having fun etc. Until my curve started to get worse in 2010 I have had no problems bending, twisting, stretching, lifting weights etc. I would definately recommend surgery
(sorry for the long post)
Jenna

Pooka1
05-28-2012, 07:39 AM
Hope u don't mind that I'm under 18 (this form is for 18+ but I
Wanted to see ur thread)

The only way you are ever going to get any answers is if you post in the adult section. There are so few kids in the kid section and adults are not allowed to post there.

It would be cruel to tell you you can't post anywhere you want given what you are dealing with.

so_shy
07-18-2012, 04:00 PM
I'm a type of person when I want to do something I do it , but because of my fear , it draws me back into sadness. I should have been active in the student council , or played in the basketball varisity , or took law or medicine or wear tshirts or just relax while walking in school and not rushing like there's no tomorrow , but I couldn't =( I know for some people it's just a state of mind , or try to ignore what other people say about you , but it's hard. It's really hard... I don't know if some guys here can relate to this but if there's one way to cure scoliosis ( or I didnt have one ) , I would have been 200 percent better than what I am today.

I'm male and I can definitely relate.

My life basically ended in early high school.

I have a two scoliosis curves, one lower and one upper, and I have kyphosis. All my curves are mild to moderate, so I'm not a candidate for surgery. But the mild to moderate is how all the doctors over the years have defined it. I look in the mirror and it's "huge" to me. And I know it is as bad as it looks -- not just because of what I see in the mirror -- because of the comments I've gotten over the years.

My biggest problems is a protruding hump on my right side ... a hump that, and I know this may sound crazy -- but a hump that protrudes horribly ONLY when I extend my right arm to perform some activity, like extending my arm to shake someone's hand, or reach out to picture on a wall to adjust it, or swing a tennis racket. When my right arm as down, at my side, I am round-shouldered. But the minute I raise my arm up and out, the scapula comes flying out, and I have this huge pointy hump, and I just want to smash it, smash my scapula. Inside, I'm yelling at my scapula, to "stay in," "stop flying out". I hate my hump ... the hump that comes out only when my right arm is extended. And I've never come across anyone else with this particular kind of problem. It's usually,from what I read, when a person bends over, that their hump shows. Or some have a hump all the time. Mine is just weird. My arms at my side, no hump, no protruding right scapula. My right arm raised and extended in some activity, and OUT IT COMES, my shirt looks like a missile was just fired, it likes like some monster just popped out of hiding.

I'm in my early 40s now. The feelings you described I experience too. Fear and depression. I am not married. I don't date. Have never really been involved with a girl, or people, in a social sense, because I avoid life. I just can't stand myself.

I've written on here about finding shirts with wide-necks to make my back look less rounded, in that a shirt that is tight around the neck -- which most men's shirts are -- highlights my kyphosis. And I was hoping to find wide-neck shirts with material that are some how loose fitting so as not to cling to my hump "when it comes out from hiding."

Anyway, I just exist. I don't have any support from family. (That's another story. Whenever I did try to open up in the past, family members would just make it worse by saying, "Get over it already." There was no support. So I've learned not to share the emotional pain because all I got, or would get, is rejection, not sympathy, or actual help, whatever that help might be).

I hate myself. Every day I wake up immediately feeling horrible. All I think about is, I WISH I COULD JUST PUT ON A SHIRT AND NOT LOOK LIKE A FREAK. I wish this stupid scapula would stop jutting out when I use my right arm. (I'm very careful when I am outside, out among people, to keep my right arm down, I literally try to avoid using it, that is, I walk like a zombie with arms at my side, and when I have to open the car door, which means extending my right arm, I do it ever so quickly, and immediately drop my arm to my side again, to get my scapula back in its cave, so to speak.

here's a pic, showing the two views of my back, one with my arm down at my side, the other, with my arm raised, and the right scapula shooting out:

http://i1188.photobucket.com/albums/z404/flahblosteem/00000zzzzz.jpg

Alistair
11-10-2012, 03:54 AM
I'm in my early 40s now. The feelings you described I experience too. Fear and depression. I am not married. I don't date. Have never really been involved with a girl, or people, in a social sense, because I avoid life. I just can't stand myself.

Similar story to you and the thread starter, I'm male too, I'll be 40 next year, I've learned to live with my scoliois but there's not a single day I don't think how much better my life would be if something could be done about this, every single aspect of my life.


About iyengar yoga, do you need a scoliosis expert to do the poses or all poses are fine ?

This looks to me meditation stuff, in which ways can it actually help my spine?

LindaRacine
11-10-2012, 12:36 PM
Similar story to you and the thread starter, I'm male too, I'll be 40 next year, I've learned to live with my scoliois but there's not a single day I don't think how much better my life would be if something could be done about this, every single aspect of my life.



This looks to me meditation stuff, in which ways can it actually help my spine?

Hi Alistair...

Sorry to hear about your issues with how your back looks. Because large scoliosis curves are fairly rare in males, the sense that you're alone is amplified. I hope you find a way to deal with it.

Elise Browning Miller, who teaches Ivengar yoga for people with scoliosis, has managed to make her back look almost completely normal. She almost certainly has not permanently reduced her curves, but she is able to hold her spine straight by stretching and strengthening certain muscles. You can find out about her program at http://www.yogaforscoliosis.com. She trains other trainers, and has a list of them on her website. She also has DVDs that are available HERE (http://www.amazon.com/Yoga-Scoliosis-Elise-Browning-Miller/dp/B000AB0Z4A/ref=sr_1_1?ie=UTF8&qid=1352568909&sr=8-1&keywords=yogaforscoliosis).

Regards,
Linda