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  • Possible Surgery**scared**plz Help

    My name is Mark and this is my story. I know that some of you really might not care about whatever happens to someone you don’t even know, but I am begging you to read on and any comments will be appreciated.

    At 13 years old, I had a curve (upper back) of 70 degrees and I was diagnosed with both kyphosis AND scholiosis. For the next 3.5 years (including right now) I have been struggling with a back brace and was able to bring down the curve to 50 degrees.

    Now, being 16.5 after following the doctor’s instructions down to the letter (exercises and brace was followed to the letter!), for many months, I went to the doctor a couple of days ago only to find that my back had gotten one degree WORSE (from 50 to 51)!

    Right now, I am very angry AND frustrated since I did all this work, only to get WORSE results.

    Here is a re-cap:
    A) Came with 70 degrees at the age of 13
    B) After 3 years curve went down to 50 degrees (16 yrs old)
    C) Half a year later (doing everything perfectly), curve gets one degree WORSE! (16.5 yrs old)

    My doctor informed me that 50 is the surgery boarder, and although I did do a good job coming down from 70, I am STILL at the surgery boarded, and like I said VERY frustrated right now that it is getting worse when I am doing more work than ever. Also, I only have about 4 more months until my spine stops growing!!!!!!!!!!

    My questions are the following…

    1. In my case, do you think I still have a chance at 51 degrees to avoid surgery, have approximately only 4 months left before my back stops growing.

    2. Should I have surgery… will I always feel as if something is in my back or “stuck in my back” or feel “weird” or abnormal…what physical abilities will I loose and how will this effect my job in the future?

    3. About the scar, they said its from neck down, will it look huge and ugly or will it be small and light. CAN YOU PAY MORE TO HAVE THEM MINIMIZE YOUR SCAR (EX. LASER), and will creams help to reduce appearance?

    Thank you so much! I am so sorry for so many questions!

  • #2
    Hi Mark...

    I feel your frustration. Having scoliosis can really suck. The way I try to look at it is that it's easier having scoliosis than lots of other conditions.

    I had surgery 12-1/2 years ago. The scar is very thin and slightly lighter in color than the surrounding skin. I sort of think of it as a badge of honor.

    You'll need to verify this with your doctor, but I suspect that your curve will actually revert to the 70 degree mark when you discontinue your brace. Braces only rarely permanently affect curves. Your time in the brace wasn't wasted however. Wearing it has allowed you to grow considerably while keeping your curve from getting larger. It may not seem like much, but it's something.

    Best of luck if you have surgery.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

    Comment


    • #3
      I would just like to add my 2 cents worth.
      If 10 different doctors measure the curves on the one set of x-rays, chances are you will get several different degrees of curvature, and none of them are really wrong. Every doctor measures differently and using different points. Even the same doctor may get slightly different results. 1 degree is not really that much, considering how much you have corrected it with the brace.
      Congratulations on being so sucseful with your brace, by the way.
      My personal opinion is wait to see what happens after you stop growing. Keep going to check-ups etc, but don't rush into the surgery.
      Let us know how you get on. You have found a great place for support. Ask any questions you have, or just 'air' your feelings.
      Best wishes.
      Cheryl.

      Comment


      • #4
        billz45...

        We all listen to anyone who writes in on this forum whether we know them or not. We've all been a new comer at one point or another and we've all "vented" here often. So, welcome and I'm glad you can get some of this off your chest.

        My 13 y.o. daughter also has Kyphosis and Scoliosis, which is called Kyphoscoliosis, and she is having surgery December 7th. Like Cheryl said, every doctor will measure your back differently. My daughter's Kyphosis was 79* when diagnosed last year. She has no breathing problems, etc. Her main problem and reason for surgery is that she tried a Milwaukee brace and also a Boston brace. Although she is almost done growing like you, her Kyphosis and Scoliosis curves have continued to progress.

        Here's my advice to you: Don't rush into surgery. Surgery is not something to be taken lightly. Do keep going to your doctor for routine check-ups to watch the curves. Your curves may not increase much more. If you feel comfortable with your appearance and the curves don't increase, don't worry about surgery!

        Mary Lou

        Comment


        • #5
          Thank you all....

          And those of you who DID have the surgery could you please describe how you FEEL right now. Different? As if something is "stuck" in your back? Uncomfortable? Completely Normal? What can you not do (specifically reffering to my case, please)

          Comment


          • #6
            Hey Mark.
            I'm 21 and had scoliosis surgery a year ago...

            1. It's hard to say... My scoliosis was diagnosed at 19 yrs old, and worsened RAPIDLY (about 40 degrees change in under 6 months, no reason for it). Your spine might be stable. It may not be...

            2. My back feels very normal, and I had a pretty large fusion (t2 to L1- Twelve levels. Only ones left unfused are four lumbar vertibrae, and one at the top of my fusion). I still have numbness over a big part of my back, but if I try to bend, I don't feel like there's something holding me in place, like I've got a brace on or something... I personally lost no physical abilities. In fact, I'm better off than I was before my surgery. My back always hurt. I haven't been able to touch my toes since i was TEN because it hurt. I can touch my toes easily. I was an avid runner before my surgery. I'm not quite up to par yet since I'm technically still supposed to be taking it easy, but I'm still able to do it. And my job is VERY physical. I am a horse trainer. I work with untrained and partially trained horses on a daily basis. It takes physical strength to be able to handle this. I was worried at first that I wouldn't be able to do it. But I can.

            3. My scar is almost invisible... Except for the top... I developed a small area of infection, or my body rejected one of the interal stitches, so it opened up and is wider and more noticeable. I wish it hadn't happened, but it's not so bad. One of my dear friends had the same surgery several years before, and I actually couldn't even FIND her scar! I don't know how well those creams work... But the scar is seriously very minimal.
            Blair

            Dec 15th, 2003 @ age of 20
            Posterior Fusion and CD Horizon instrumentation T2-L1.
            Surgery by Dr. Herkowitz- Beaumont Hospital of Royal Oak, Michigan
            Excellent correction of 52 degree single left thoracolumbar curve. Slight curve remains in unfused lumbar region but seems stable.
            February 5, 2005- Failed Scar Revision Surgery
            September 17, 2005- 2nd Failed Scar Revision.

            Comment


            • #7
              My daughter had sugery 6 1/2 months ago. She was fused fromT4 to L4. I asked her last night if she could feel anything in her back. When she asked why and I told her about you, she really thought about and said:
              "Yes I can feel stuff. If I try to bend, I can't, I can feel 'something' holding me back. Sometimes if I move differently I can feel it. "
              She is very thin and lost quite a bit of weight while in hospital, when she first came home she said that she could feel the rods when she laying down. But described it more like she was laying on something. She still has a lot of restrictions and is not allowed to twist or anything yet.
              Because Amber's fusion goes right down into the lumbar region (I think there is L5 then it's your tailbone) she has lost most of her bending ability.
              How much movement you have later on really depends on how large the fusion is. From what I have read anyone whose fusion stops at or above L2 can still bend pretty 'normally', The lower the fusion goes the less bending ability.
              Her scar is around 21 inches long and is pale pink, though it is fading fast. Something she is not pleased with as she likes her scar and wears it very proudly. I think she likes to show it off.
              She also gained 2 inches in height, making 5 foot 11 now.
              Next time you see your doctor ask if the surgery was to be done where would the fusion be. That will give you more of an idea as to your limitations.
              Best wishes.
              Cheryl.

              Comment


              • #8
                Endoscopic?????

                Hi this is Mark again....

                I think that my curve (currently at 51 degrees) is in the middle ("S" shape) and as you know I have both scoliosis AND kyphosis (spelling?).

                Does anyone know if in Canada (Ontario, Toronto) this endoscopic procedure is done???

                Comment


                • #9
                  Mark,

                  Only a doctor who's a scoliosis specialist can say for sure, but from what I've read, the best candidate for endoscopic surgery is someone with a "C" curve in the thoracic region. If you don't meet this criteria, I would not count on the minimally invasive technique being appropriate for your situation.

                  Susanna
                  Susanna
                  ~~~~~~
                  Mother of a 17 year old daughter. Her "S" curve was 40 degree thoracic from T3 to T9, and a 70 degree rotatory thorcolumbar from T9 to L4. She was operated on March 9th, 2005 by Dr. Boachie-Adjei at the Hospital for Special Surgery in NYC. She was fused from T11 to L3, using an anterior approach, and the major curve corrected to 20 degrees. She's doing great!

                  Comment


                  • #10
                    Billz,
                    You're not alone!
                    I'm 18 on Christmas Eve 2004.
                    Back in June 04, i was diagnosed with kyphosis mostly lumbar and my scoliosis went from 44 to 48.
                    I'm waiting to see an adult scoliosis surgeon due to the fact Children's Hospitals only allow up to 17 years of age.
                    Get another doctor's opinion and delay time. Perhaps your x-rays show that your spine is done growing. I don't know how to say this but back in Dec 2003, my doctor said my spine is finished growing. Then, i got a 2nd opinion in the same hospital but different doctor, and he said my spine still is not finished growing and will grow to 18.
                    Last edited by Justin; 12-15-2004, 02:21 AM.

                    Comment


                    • #11
                      Oh yea. 1 more thing. Find a doctor that is well known, experienced and nice.
                      My new adult scoliosis doctor will be Dr. Marcel Dvorak, MD, FRCSC

                      He's supposed to be one of the leading spinal doctors in Canada. He was the head of the surgery team that fixed former BC premier Mike Harcourt and Steve Moore of the NHL Colorado Avalanche who got sucker punched by Todd Bertuzzi.
                      This is a little blurb on him:

                      "Currently head of the academic division of Spine, Department of Orthopaedics, U.B.C., Dr. Dvorak confines his area of practice to adult spine surgery. Research areas of interest include, spine trauma, arthritis and deformity, post-graduate spine education, surgical databases, quality assurance, and surgical outcome studies. He is a founding member of the AO/ASIF North American Spine Education Committee. He is a clinical assistant professor in the Department of Orthopaedics at U.B.C."

                      I just found information on him and guess what my self-esteem and stress for rushing into surgery has been solved. Having a very succesful doctor that can boost your self-esteem is very important and can help you make the correct choice in the long run.

                      One of his patients:
                      http://fivefootnine.diaryland.com/040218_56.html
                      Dr. Dvorak called in some of his colleagues to take a look, and they all took turns commenting on my X-rays and looking at my back, telling me how amazed they were that I managed to get 100% correction. Then Dr. Dvorak did something I still remember so clearly - he put his arm around my shoulders, smiled at me, and said, "Yes, she's my poster child. My perfect poster child."

                      If you somehow can get referred to this doctor when you're 17-18+. You're bound to feel confidence since you live in Canada, scoliosis is not considered a cosmetic surgery so you are 100% covered
                      Last edited by Justin; 12-15-2004, 04:30 AM.

                      Comment


                      • #12
                        I have problem in MIDDLE of spine only (dont know correct name), SO U THINK I WILL STILL be able to bend properly or twist fully as right now?

                        Comment


                        • #13
                          If they don't fuse any lumbar vertebrates then i think you will not lose any bending abilities.

                          Comment


                          • #14
                            Thank you very much for ALL your responses!

                            The middle of my spine is at 50 degrees (went from 70!) and quite frankly, the doctor is NOT sure what to do about it since it is not severe enough for surgery, but it is not exactly a little curve either…very confusing for everyone.

                            My current problem is the brace. I am 16 (male) and I have SO many other things to do…I am supposed to wear it 12 hours a day at this point. My schedule is VERY routine and I find it EXTREMELY draining:

                            4pm – come home
                            5pm- back exercises
                            6pm – brace (until next morning!)

                            I don’t go ANYWHERE because of the brace and it can get VERY depressing sometimes. My life already kinda sucks as it is, and now this…well couldn’t get any better!

                            Regarding the surgery…they will NOT fuse lumbar (lower back) as my only problem is in the middle of the spine…that area kinda pops out. I really would like to know if I will be able to bend and get things as I always do and be able to twist as I always have….I don’t want to feel as if something is “stuck” in my back.

                            Also, with the brace situation, knowing my background do you guys think I have ANY hope with JUST the brace itself (see first post)???

                            I am writing a log down for bracing every day…but VERY frustrating!!!!!!!!!

                            ANYONE WITH MIDDLE OF SPINE FUSED ONLY PLEASE GET BACK TO ME!
                            DO YOU FEEL “NORMAL”? CAN YOU BEND 100% *TOUCH YOUR TOES*? Thanks a lot and love u guys!

                            Comment


                            • #15
                              Hi

                              You have a lot of questions, and some simply do not have an answer. I'll try the ones that I can kind answer (I hope), and I do have one question for you

                              Why "My schedule is VERY routine and I find it EXTREMELY draining:

                              4pm – come home
                              5pm- back exercises
                              6pm – brace (until next morning!)

                              I don’t go ANYWHERE because of the brace and it can get VERY depressing sometimes. My life already kinda sucks as it is, and now this…well couldn’t get any better!"

                              I am really curious at this one, not at the amount of time you have to wear it, but why do you let it restrict your life so much. I can't begin to imagine what its like to be a guy wearing a back brace since its stereotypically a "girls" thing. But in the same breath....... I know I would have had an easier time fitting in with "guys clothes" which most are pretty baggy instead of the "girls fashions which are tight, sometimes skimpy and don't lend themselves to wearing a brace as well. And if there had been a choice over brace working longer (keeping curves stable or reducing the curves) or surgery I would choose the first one in an instant :-)

                              As you would have seen in my signature, I'm one of the "middle of the spine" fusees. My spine is fused from T2 to T11. And yes....... i can touch my toes. This did not immediately happen post surgery, it was not until about a year and a half. Being able to do this was "helped" by having no lumbar verterbrae fuse :-)) but I do know people with shorter thorasic fusions and people who aren't fused who can't touch their toes. It took lots of physio, and lots of stretching muscles in my legs to keep them lengthened, andd.......lots of walking. If I become slack and lazy, I lose the ability to touch my toes. As for twisting, i personally can't twist particularly well, its one of those time I feel something "stuck in my back" but if there's a situation where I need to twist, and I can't quite twist, i work out a way around it.

                              Do I feel normal??, yep I feel 110% normal. There is very little I won't do in life, and I hate when people say "you can't do it". Looking at me and some of the stuff I do, you wouldn't know I had fusion surgery unless I told you or saw the scar. I think you'd find if you asked most people with fusions (regardless of length) as time went on post op that they'd feell pretty normal as well, and if they found they couldn't do something anymore they'd work out a way to get around it.

                              The scar...... well its had five years to perfect itself, and except for a bit up the top (which opened post surgery and oozed lots) so that bit's a bit fatter and yuck, the rest of the scar looks really reallly nifty. It was done by internal stitches and is light reddy pink in colour.

                              And I can feel your frustration too in the lots of diffrent areas. But as my parents told me one day, surgery (in my case it was realistically a when not if as i got older) yes it was likely to be inevitable, but you had to wear the brace (9 years in total) because we simply didn't know. It could have worked, and might of not, it was a chance that had to be taken.

                              Alison

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