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  • Old scoliosis Q for Dr. Young. Sorry-need more detail

    Sorry to start a new topic on an old subject, but after seeing a scoliosis X-pert yesterday I'd like Dr. Youngs input if possible.Might help Alan too. Dr. X was highly credentialed and personable too.He x-rayed my spine sitting and again stretched out on a rack. It straightened completely on the stretch and w/o the stretch he said I had (55) fifty-five degree curvature. The good news was 1.It was very flexible. 2. The bones were x-tra large and easy to put screws in he sez.3.The bones looked healthy and 4.He sez a several hour surgery, but in hospital for one week and back to work, transfering and all in 3 weeks.. He also said it would greatly help pain in shoulders, ribs, back etc. He said no fusion on L-4 and 5 for tolerable bendability (new word). My question for Dr. Young is does it sound too good to be true??? He also x-rayed my shoulder & said my entire Rotator Cuff is gone, bones are rubbing together and shoulder replacements are done by a colleague who's only worked on A.B.'s.He said it needed more expertise than his clinic has. I told him about the wheels with the little motors in the hub and thought it might be a good thing. I can NOT afford a van (don't know if I can make co-pay for surgery) and love my Monte Carlo and a fully motorized chair is not an option until I'm out to pasture, then maybe. No offense to any motorized W/C users, but I'm not emotionally ready after 35 years. The greying hair and reading glasses are a big enuf drag.I know I already went over this on the "semi motorized W/C" thread but I didn't know if Dr. Young would see it. Sorry again for repetition..I don't know enuf about computers. Try to remember I grew up on Black & White TV. Anyway,for you guys who helped me with the wheel question, I tried the Spinlife.com and they said the Manufacturer of the Emotion wheels won't let them carry them cuz they sold them too cheap. I'll try the other sites tomorrow.Thanks. WR

  • #2
    WR, I have scoliosis too, upper thoracic is 50 degrees and the upper lumbar is 35 degrees. Is a TLSO (back brace) out of the question for you? My curve is very flexable as yours is. When I stretch out, the curve is reduced by 10 degrees in both areas, I believe that's one of the characteristics of paralytic scoliosis. Since surgery scares the heck out of me and since I can't wear a Milwaulkee brace and still be independent, my only other option was a good seating system which I finally have now. It's basically a hard molded back with lateral supports molded in. It won't reverse my curve but it eases the pain, makes me appear as though I have good posture and keeps me elongated and flexible.

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    • #3
      BIG WARNING!

      Rabbit:

      I had scoliosis surgery 23 years ago at age 14. My procedure was similar to what you describe, Harrington rods to straighten the curve, fusion using bone from the hips. I also was not completely fused through the lumbar, no fusion in L3-4-5.

      Today, I am having serious problem with pain and loss of function because of degeneration of the joints in my spine at guess where? L3-4-5, the joints that weren't fused in the original operation. Turns out that when you fuse most of the spine but leave a little flexibility at those last two lumbar joints, having that long stiff lever arm pivoting at one small point will cause that one small point to wear out much more quickly.

      I am still weighing options, but at least one neurosurgeon has recommended that I go back for more major surgery and have the fusion completed from L-3 to S-1. This procedure also has big drawbacks. Fusing the entire spine will create a stiff rod. I'll still have to bend in the middle somewhere, and with a totally fused spine I'll bend at the hips. Guess what this will cause? My hips will wear our more quickly and sometime down the road I'll probably be looking at hip replacement surgery.

      I don't know how old you are or how much mobility you have, but please consider both of these potential problems and discuss them with your doctor. I don't have a solution yet, going to see Dr. Barth Green at the University of Miami in September. I'll let you know the results. - Joe

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      • #4
        I can't sit without either a brace (corset) or being tied to the chair, so getting a seated scoliosis x-ray has been difficult. Even if my curve would be found to be worse than the 22 degrees it was measured at many years ago, I doubt anything would be done about it surgically, considering all the problems I've heard about rods.

        Dr. Young posted a message a while back about how to do a scoliosis diagnostic x-ray on a patient who's laying down. I'd assume any curve shown wouldn't be as bad as it is while sitting, due to the effect of gravity.
        Alan

        Proofread carefully to see if you any words out.

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        • #5
          tough decision

          I hate this. I had some guy sell me an $1800 Milwaukee Brace. He told me I could still transfer with it-wear clothing over it and all> I pictured some kind of magic speedo lookin girdle, cuz he said it was ultra-light space age material.NOT. Sometimes on weekends I sit at the computer wearing it cuz it does feel good to straighten out, but mobility, like Seneca said is no good.I'm 57 so my l-4 and l-5 will probably outlive the rest of me.Joe, Did it help for quite awhile? How hard was it to get used to? I've tried seating systems. One at the V.A.but like the brace, the salesman was only interested in the money. It was supposed to be no problem to disassemble, stash in the back seat and all. When it came, my physical therapist went through hell getting it on and off standing up behind the chair with both arms. Skinned her knuckles in the process and told the invacare salesman where to stick it. Another saleseman worked,with a local therapist later-actually the therapist worked,- the salesman collected the ins. check and left. Finally, the therapist transfered and everybody lost interest. I roll a towel and tape it btwn my rib cage & the arm rest.You can barely see it with my ever-present legal pad on my lap and it helps more than either system. For some reason I always start bitching in the middle. Does anyone care to comment on the back to work in 3 weeks statement???? Alan, it took 3 nurses to sit me on a stool and 2 held me on while the 3rd took the picture. Then they stretched me completely straight on the bed for a comparison x-ray. Looked like a ')' and an 'I' next to each other. I can't do anything till after the election. I'm sure my boss will win but not dead sure, we're short handed cuz one of our atty's is running against my bossand she has her last day tomorrow and we have a defector going with her.Sorry I'm so long winded. Bye and thanks. WR

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          • #6
            whiterabbit, the fact that the curve is flexible is good news. If your curvature is asymptomatic, i.e. not causing any symptoms of pain or degeneration of the bone, many surgeons would try to improve your posture through better seating and bracing, leaving the surgery for later. But, as your doctor pointed out, it may be contributing to your upper back pain. If you feel that you have exhausted all approaches, it is time to consider surgery.

            Your shoulder, however, sounds like it needs real rest and repair. I have the impression from reading the medical literature that shoulder prostheses, although much better today than before, still are not as reliable as hip and knee replacements. If you are not using a powerchair or a power-assisted, you should consider it, to prevent stressing youe shoulder (the other one). I understand that the ibot is coming out by the beginning of this coming year.

            Wise.

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            • #7
              One doctor tried to put me in a brace despite my repeatedly voicing my concerns about skin risk. Under his orders I wore the thing for two weeks, at the end of which I had no skin left on either side of my ribcage.

              I now use lateral supports on the sides of my chair, it keeps me up straight, but the curve is still progressing. It was like 35 degrees at last measurement, but that was 3 years ago.
              "The only true currency in this bankrupt world...is what you share with someone else when you're uncool." - Almost Famous

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              • #8
                Just to re-start the topic, in case any new info has come out since July.

                My balance remains lousy due to the curve, despite the corset, Jay2 back, and laterals. Typing is getting more and more difficult, as it is tough to reach the keys while flopping sideways all the time. Whether the curve is contributing to my upper back pain, I can't say.
                Alan

                Proofread carefully to see if you any words out.

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                • #9
                  Alan,
                  Thanks for the recall. Looks like not much is going on in the scoliosis area. I think mine is getting worse. My shoulder hurts all the time and my back along the side aches worse all the time. I'm going to need somehing done shortly because the pain is affecting my work. Just raising it to type this today is hard.As for the wheels, My ins. co. says worker's comp should pay but w.c.says they won't give pre-approval so the store won't order them. In the meantime I dread pushing the chair to the bathroom.

                  I just know I've got to do asomething with back and shoulders. I just hate to because I don't think my job will put up with the lengthy rehab for the shoulder. If the job go's so will my sanity. WR

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                  • #10
                    Whiterabbit,

                    What part of your shoulder hurts? The joint(s), or the blade(s)? Pain in the joint or joints may be from overuse, especially if you push a manual chair. Scoliosis won't help matters, especially if you're constantly hooking the back of your chair to try and push yourself straight (something I do.)

                    I found out that, not only is my back lopsided, my neck bones are also not arranged as they should be. Fortunately, my neck doesn't hurt (never did, even when the bones were broken. Only after my two surgeries - fusion and laminectomy - did I have neck pain, and that went away quickly when the incision, et al, healed.)
                    Alan

                    Proofread carefully to see if you any words out.

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                    • #11
                      Alan,
                      At 1'st it was the shoulder joints and all down my rib cage on the right side which is the direction of the curve. now my right shoulder blade hurts and it all pops, snaps and grates when I lift my arm above my head and when I make a turn driving. It sometimes sounds like a creaking door. I can still lift my butt up and completely straighten my arms as long as I just go straight up. The spine Dr. told me I should get quite a bit of shoulder pain relief with proper alignment.He said he could straighten a 55 degree curve to a 10 degree. If I can make it till after Jan. 1st Ill ask for time off. I don't use my $1800 dollar Milwaukee brace cuz I can't hardly move in it but it relieves quite a bit of pain when I do.

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                      • #12
                        Both my blades pop and grab whenever I move my arms. The left is the most painful, and pops more, but the right is catching up (and they feel swollen to the size of softballs, with the bones sticking through the skin.) My curve isn't as bad as yours (though I haven't had a picture of it taken seated in years, I've looked at pictures of people with varying degrees, and I don't look that bad), but, like you, it is my right side that bulges out. I'm also torqued to the right when I sit (right shoulder further forward than left), thsnks to several years of hooking my chair with my left arm for balance (my rehab didn't believe in corsets, so I didn't get one at the start of this mess.)

                        [This message was edited by alan on Oct 16, 2002 at 09:19 PM.]
                        Alan

                        Proofread carefully to see if you any words out.

                        Comment


                        • #13
                          my experience from 32 years ago

                          Originally posted by sextonjt View Post
                          rabbit:
                          Originally posted by sextonjt View Post

                          i had scoliosis surgery 23 years ago at age 14. My procedure was similar to what you describe, harrington rods to straighten the curve, fusion using bone from the hips. I also was not completely fused through the lumbar, no fusion in l3-4-5.

                          Today, i am having serious problem with pain and loss of function because of degeneration of the joints in my spine at guess where? L3-4-5, the joints that weren't fused in the original operation. Turns out that when you fuse most of the spine but leave a little flexibility at those last two lumbar joints, having that long stiff lever arm pivoting at one small point will cause that one small point to wear out much more quick
                          i am still weighing options, but at least one neurosurgeon has recommended that i go back for more major surgery and have the fusion completed from l-3 to s-1. This procedure also has big drawbacks. Fusing the entire spine will create a stiff rod. I'll still have to bend in the middle somewhere, and with a totally fused spine i'll bend at the hips. Guess what this will cause? My hips will wear our more quickly and sometime down the road i'll probably be looking at hip replacement surgery.

                          I don't know how old you are or how much mobility you have, but please consider both of these potential problems and discuss them with your doctor. I don't have a solution yet, going to see dr. Barth green at the university of miami in september. I'll let you know the results. - joe
                          i had harrington rods put in 32 years ago. I had the s curve and my shoulder blade was sticking out. Back then i wore a body cast for 9 months after surgery. I am now 50 years old. Beneath my rod i have 3 bones deteriating a protruding disk. I now have bone spurs,arthritis and deteriating disc in my neck. I have to see a spine specialist. My hands,feet,legs get numb. I was told i'd be in a wheel chair by the time i was 50. I'm not. I was a cop and i am a security officer for a hospital. I was told to have no more than 2 kids,i have 5. As for the surgery would i have it done over,you betcha ya. To me it was worth it. I don't know what the doctors will tell me now. But how i could of turned out like the hunchback and crippled the surgery was worth it. Now days you don't wear cast. I weighed mine it weighed 16 lbs. If anyone has info about later years and reconstructive i'd appreciated it. SHERRY L

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                          • #14
                            I hate this.

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