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Thread: Hi, i'm new and have a couple questions

  1. #1
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    Feb 2005
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    Hi, i'm new and have a couple questions

    Hi. this is my first time here, so let me give a little info.

    Im a 21 year old guy. i have about a 40 degree curve in my spine. it was first noticed when i was probably 11 or so. it didnt start to really bother me till i was about 16/17. i've only had 1 form of treatment and that was a fluke chiropractic therapy. it didnt seem like it was helping because i was still in pain, so i stopped going.

    my scoliosis is affecting my self esteem and self image. everytime i bend over, there is a hump on my back. i get nervous about bending over in public. my hips are uneven, my shoulders are uneven, and im only about 5'4 in height. i believe its due to my spine being curved. whenever i stand, im hunched over. whenever i sit, im hunched over. i dont want a hunched over back anymore. another thing is, im afraid to have a girlfriend because i dont want her to see my messed up back and then think im some kind of freak.

    i dont have medical insurance yet, but when i do, i plan on having surgery. i really want my back to be corrected. i dont want to be 40 years old, have a hunched over back and still stand at 5'4. its making my self esteem really low and i just want to be normal. if i have sugery, not only will it make me feel better about myself, but hopefully it will help me grow taller and have a normal looking back/body.

    i have some questions for the people that have had surgery......

    What do they do to correct the curve in the spine?

    Is there alot of pain of surgery?

    Does surgery help you live a normal life and help your life/self esteem improve?

    is there any complications years after surgery?

    i cant think of any other questions right now. last night, i was reading some websites about scoliosis and just thinking about my back problem made me cry and feel sorry for myself. and then i got really teary thinking about if i have surgery, my life would completely change because i will no longer have to be self concious about it or i wont have to worry about people saying bad things about me because of my back.

    having surgery would be the best thing that would ever happy to me. it would make me feel so better about myself.

    is there another forms of therapy that are non-surgical and that actually work to correct the curve or is surgery that only sure thing to correct it?

    well. i look forward to hear what y'all have to say. thank you for allowing me to open my heart and tell alittle about me. i really hope to have surgery sometime in the near future and improve my life.

  2. #2
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    420toker...

    You can see an over-simplified version of what's done during posterior scoliosis surgery here:

    http://www.understandspinesurgery.com/

    (click on Understand the Procedures, enter your ZIP code (use 94108 if yours doesn't work), click on a surgeon's name, click on Patient Education, enter your email address and click on I Agree. When the animation starts, click on Spine, then Scoliosis, then Derotation with Instrumentation.

    There is often a lot of pain after scoliosis surgery. Most people find the pain relatively tolerable with heavy narcotics. I can almost guarantee that there will be at least a few days where you wish you hadn't agreed to surgery.

    While surgery can help with your self-esteem, I worry that you're putting too much hope in a surgical procedure. I don't mean to be insensitive, but you might want to talk to a therapist about your feelings. I think that just about everyone with a significant curves has times where their body image really suffers. It's a pretty crappy hand to be dealt. But, in terms of bad things that can happen, it's really not all that horrible. I hope you'll eventually learn that the people that count in your life don't care a bit about your back or your height.

    So in this world
    Of the simple and odd,
    The bent and plain,
    The unbalanced bod,
    The imperfect people
    And differently pawed,
    Some live without love...
    That's how they're flawed.
    From "Flawed Dogs" by Berkeley Breathed


    How much height you gain will depend on how many vertebrae are involved in the fusion, how large your curve(s) are, and the type of procedure done. Even though I had two relatively large curves, because I had to have 4 discs removed for my surgery, I only gained 1/2".

    Since you're so self-conscious about it, I strongly urge you to find a surgeon who routinely performs thoracoplasties (a procedure that reduces the rib hump) along with scoliosis fusions. A "normal" posterior scoliosis fusion will reduce your rib hump somewhat. Unfortunately, some patients complain that their rib humps return over time. I believe that with a properly performed thoracoplasty, the rib hump will not return.

    While most people have normal lives after recovering from scoliosis surgery, some people have bad outcomes. You can find links to abstracts of some published studies on one of my web pages:

    http://www.scoliosislinks.com/Outcomes.htm

    Hope some of these answers help.

    Regards,
    Linda

  3. #3
    Mary Lou Guest
    I agree with Linda completely. Let me add that Scoliosis surgery is not to be taken lightly and it is a very big, risky sugery and should not be done just for cosmetic reasons.

    My daughter had surgery in December-Kyphosis was about 72* and Scoliosis was about 46* and still progressing. She is fused from T-3-L-2 which is a big fusion and she only gained 1/2 inch in height. She is only 4' 10 1/2" inches tall.

    Remember that some doctors won't even consider surgery until your curve is 50*. To be honest with you, most people won't even notice your back unless you tell them about it and if they are your friends, they won't care what your back looks like! And as for a girlfriend, if she would care that much about what your back looks like, she isn't worth having around!

    You mentioned your self esteem. Have you thought about the fact that you will probably have a very long scar running the length of your back after surgery? What about the scar you will have if they remove bone from your hip or if they do an anterior/posterior surgery?

    I'm not trying to give you a hard time, but there is so much to consider before having surgery. Hang in there and keep asking questions.

    Mary Lou

  4. #4
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    Originally posted by Mary Lou Scoliosis surgery is not to be taken lightly and it is a very big, risky sugery and should not be done just for cosmetic reasons.

    To be honest with you, most people won't even notice your back unless you tell them about it
    im not thinking about surgery just for "cosmetic reasons". that plays a big part in it, of course. but i also want to have it done for when i grow older, the curve might get worse and i read some cases where the spine can poke into the lung/heart area and you can be killed or have breathing problems, which i do sometimes. when i breath in, it hurts in my chest/rib cage area.

    and yea, people can notice my back is messed up without me telling them. all you have to do is look at the way i stand and how crooked my shoulders and hips are.

    im always the brunt of jokes. people are always sayin garbage about my height and in effect, it does a couple things to me.

    1) ticks me off.
    2) messes up my self esteem and self image.
    3) makes me depressed because i dont have a normal looking body.

    i've battled depression through my teen years and still to this day. it's mostly because of my back, but other things factor in on my depression.

    i know surgery is a major thing not to be taken lighty. when i get health insurance, im going to see a spinal surgen and see what he thinks.

    if surgery is not an option, i hope there is non-surgical treatment that actually works.

    thanks for the comments.

  5. #5
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    Brisbane, Australia
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    What do they do to correct the curve in the spine?
    i had a rod put in with some screws going were disks went
    Is there alot of pain of surgery?
    i got hardly any pain at all
    Does surgery help you live a normal life and help your life/self esteem improve?yes it helped me... even tho i have a scar (which i think is awesome & better than having a hump or whatever) my self esteem incresed.
    is there any complications years after surgery?
    umm i dont think so

    ps i gained a few centimetres in height, & i havent regretted having the operation at all and my curve is now down to 7 degrees
    Last edited by pink_jazmin; 03-03-2005 at 11:00 PM.
    *ANGIE* 14-15 y/o
    had operation in september 2004
    a rod was put in:T10-L3
    My curve was 50* & is now 7*
    "All that glitters is not always gold & diamonds in the rough do not always shine"

  6. #6
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    Feb 2005
    Location
    Wales, UK
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    My experiences

    Hi, I had my surgery 10 months ago, just after my 19th birthday. I couldn't decide whether or not to have my surgery and my mum definately didn't want to me to have it done.

    My scoliosis affected my self esteem and self image aswell. Like you I had uneven shoulders and I was only 5'2 and a half. I also had a forwards curve which made my shoulders roll forwards and made me look like I had a hump on my back.

    I met my boyfriend a year before my surgery. When I told him I was waiting to have surgery to straighten my spine, he said he'd never noticed anything was wrong.

    I had my spine fused and titanium rods and screws inserted to straighten in. I also had torticollis (tightening of the muscle in my neck) which was corrected at the same time. I was in a lot of pain after the surgery, which was mostly due to the bad reaction to my painkillers.

    The surgery has definately changed my life, mostly for the better, however I have swapped one type of pain for another. Before my surgery I used to get pain in my right shoulder and pins and needles and numbness down my right arm. Now I get pain in my left arm and down my spine.

    I think the surgery has improved my self esteem, I go out with my friends more and I don't feel like I've got to wear baggy jumpers to hide my 'funny shape'.

    It has stopped me from lifting things but not much else.

    I would say that you should bear in mind the fact that you'll have a long scar after the surgery and I'd also advise you to see a few doctors/surgeons before you make any decisions. What was right for me may not be right for everyone.

    I hope this is some help to you.

    Laura
    Last edited by laurad; 04-28-2005 at 04:02 PM.

  7. #7
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    I probably could have written most of your post!

    Hi, my name is Lois and this is actually my first post on this forum. So glad I found it!

    Anyway, I'm 26 years old and I have scoliosis. My curvature is pretty bad and I was supposed to have surgery this past winter, but I couldn't because I have a 15 mos old son and no one could help me w/ him after I had the surgery. So I'm waiting til he's about 5 or so.

    I did want to address a couple things in OP's post. First, I TOTALLY understand the whole self esteem issue and not wanting to bend over in front of people. I feel like the Hunchback on my really bad days
    I also was worried about what my bf would think. Yes, he did notice it (you can't help but not to, because the curve is so bad) but he still finds me attractive because I'm more than just my back

    If your dr gives you the go ahead for the surgery, I say go for it. I don't know if it will make your height any taller (not much anyway) but the curve could get worse over time and you don't want that to happen.

    Well, sorry to have rambled, but I really feel for you and wanted to let you know that your not alone in your feelings.

    Lois

  8. #8
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    Interesting topic, men don't normally notice a woman's back. I can't remember the order, but I think it's hair, face, boobs and legs ? The back doesn't even make the list !

    Women on the other hand, may notice a man's upper physique.



    Celia

  9. #9
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    Hi Celia...

    People don't notice NORMAL backs. When your body is abnormal as most of ours are, it's hard to not notice, especially without clothing.

    Regards,
    Linda

  10. #10
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    Mar 2004
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    Linda,

    I am surrounded by people with scoliosis. My husband, daughter, sister-in-law and mother-in-law all have it. The only one with severe scoliosis is my mother-in-law and because she has a double curve, she looks balanced. I've never seen her naked or in a bathing suit, so I can't comment I know what you mean though. My husband has lumbar scoliosis and you really can't tell. When I first started going out with him, I noticed his belly button was off centre. I thought it was unusual, but I didn't say anything. He does weight lifting and jogs - he has the physique of an eighteen year old His sister is beautiful, although she has moderate scoliosis she looks great in a bathing suit ! Her boyfriend doesn't care about her scoliosis.

    I'm not trying to discount people with severe deforming scoliosis, I don't think that's the majority though - I could be wrong.




    Celia

  11. #11
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    Apr 2005
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    forseel76@yahoo

    This message is for 420toker:

    I understand how the scolyosis could affect the way you feel about yourself and how it could make you feel self conscious. We all want to feel that we are normal. As a young teen I couldn't tuck in my blouse and didn't understand what was happening to my body. It was out of control. I couldn't dress the way I wanted to and look good. As time went on my condition rapidly digressed to the point my mother and aunt knew there was something terribly wrong with me. I believe the main issue is your health. You're a young man now and surgery would be much easier to handle in your early 20's than in your .... say 30's or 40's. Yes there is alot of pain following this surgery. I remember the first 4 days especially as being horrible. As a teen I made the decision to limit my intake of drugs to deaden the pain. At the same time it's good to allow your body to rest and heal after the initial surgery. I believe I was 4'10 1/2" when I went in for my first operation and when I got off the Stryker fram I measured 5'1 1/2" and I'm still at that height - unless I shrunk.
    Do all the research you can. Prepare yourself as much as possible. Keep a positive outlook when that time comes. Just remember, the procedure today is so much better than when I had mine. They were still experimenting and learning how best to do the surgery......... One good thing - I don't think you'd have to spend time on the Stryker Frame anymore. That's some consolation!

  12. #12
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    Apr 2005
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    Reply For Toker!

    Hi, Toker

    I just had to respond when I saw your letter. I am now 48 yrs. old and did not have any treatment for my scoliosis that was discovered when I was 10. I am not really sure if my parents didn't want to bother with it, or if they just thought that it wouldn't be much of a problem. I wish someone had done something or told ME to do something when I was younger. I now have a daughter with similar issues and I have advised HER to take care of it now!

    The gnawing, ache-type pain started when I was about 30ish. I fluffed it off as "old age" and the bent over position that I had to maintain as a bench jeweler. When I was 40, the real pain started, but I did not have sufficient insurance as I was self employed, so I didn't do much about it except sit in a hot tub (helped out the associated muscles, but not the actual problem) and go to a chiropractor. I wasn't sure what the pain was from..........I did not relate it to the scoliosis. ( My parents didn't think it was that bad, so it didn't occur to me until much later)

    Then, at 45, I realized what the pain was from. ( I was now graduating from nursing school) By this time, it was INTENSE. I couldn't sit for long, walk for long, lay in one position for long, etc...before the blazing pain would shoot down my leg. After a couple of X Rays and an MRI, I knew that I had accidentally "crushed" my lower spine over the years and the vertebrae had started to grate together. My bone was wearing out, discs were pushed to one side and it was pinching the nerves. The pain was excruciating. I could no longer work, much less walk.
    My leg was becoming atrophied because it was now becoming non-weight bearing, I was using crutches and a wheelchair. It was horrible. The pain would put me on my knees at any given moment.

    I highly suggest that you do something about it NOW before it gets worse. I had posterior spinal fusion done from L3 to S1 using allograft ( donor ) bone with screws and rods. I wish that something had been done much sooner. I really do. Things always seem to be harder when you get older.

    I am now 3 months post-op and have my final appt. tomorrow. I feel much better and can now walk upright. One of my worst unsuspected problems was building my atrophied leg back up to speed. I am careful with my back and don't lift more than 20 pounds. I expect to have full "life" priviliges by 6-9 months. I am very grateful.

    Prior to surgery, I lived on pain killers and they didn't touch the pain. It was a horrible way to exist. Now, I am down to three 5 mg vicodin per day and using Ultram as an adjunct med. That wouldn't have touched the agonizing pain I had prior to surgery.

    I URGE you to find a qualified surgeon and have something done ASAP before you get to the point that I did. I affected EVERY aspect of my life. I lost my job because I couldn't work on hydrocodone ( unsafe ), I couldn't walk, I couldn't do anything. Long term use of hydrocodone will affect your brain tremendously.........I ended up making terrible life decisions and lost my marriage........( this may be extreme, but it happened to me!) because of the depression caused by chronic pain and the long term use of narcotics. It's a vicious circle.

    Toker, compared to the possible consequences, the inconvenience, temporary discomfort and pain caused from the surgery is well worth it.

    As with anyone, a couple of doctor's opinions would be highly suggested, but I am giving you MY scenario. I've also seen my same or similar story unfold with other patients. I am only giving you MY OPINION.

    Best of luck to you,Toker
    Adena

    P. S.
    If anyone has any idea how long I am going to be waiting for my graft to take hold to the point of my being able to return to work, PLEASE let me know!!! THX

  13. #13
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    Adena...

    Your surgeon should be the one to tell you when it's safe to resume activities, including going back to work.

    --Linda

  14. #14
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    Toker~
    I understand completely how your back can effect your self esteem. I had many many problems in school with being made fun of and lost many friends (who obviously weren't true friends) everytime I had surgery. In my case, I didn't have a choice about surgery, it was that or the doc's said that I would crush my heart and lungs by the time I was 12 (first surgery at 10). I am very self concious about my back and my scars but much better than I use to be. Surgery is a tough decision to make and it's not easy. One thing to remember is that you are not alone. I'm hopeing that you have your family's support but even if you don't just looking at this forum should remind you that their are many others out there that once felt alone too. Depression can be a big part of anyone's life who has scoliosis, I have been on anit-depressants and see a therapist for almost 5 years now and I think that that would probably be very benifical for you as well. Just get all the information that you can to make the best decision for you and your son. Welcome to the forum!
    Jennifer

    26 years old. Diagnosed with severe Scoliosis/Kyphosis and CMT at the age of 8. Have had a total of 6 surgeries, 4 on my spine and 2 on both of my feet. Including rod removal surgery. I am fused from T-2 to T-12.

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