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  • #1

    Surgery upcoming

    Hi my name is Howard and I am 42 years old. I have had Scoliosis from time I was 12 as I can remember. I spent many years doing the things the doctors said I'd never do, just to prove them wrong..ie....sky dive, bungee jumping and the like. Now at 42 it caught up with me. I have went from a 57* curve in 92 to a 69* today. I have degenerating bone disease in my low back and severe arthritis in my neck and low back, oh and scoliosis.

    I am in a wheelchair now and the past few months I have been going through many test. The doctors say they can put the rods in my back to fix the ribs and breathing issues but they can not and will not replace the lower disks for fear of the weight of the rods pushing them out or slipping.

    Everything I hear basically sounds like no mater what I do my life is over as I knew it and I don't even know if it would work for me. I have the appointment with the surgeon Sept 12th and I should know more. All in all I'm scared. I don't want to be paralyzed or even dead.

    My questions are many and I don't feel I'm getting the answers I need from the Medical staff. Is there a support group in Arkansas? Little Rock area? Can anyone help.

    I've been down for the last 4 years. Sleep 14 to 18 hours a day, Taking 5 oxycotins everyday along with 4 other drugs. I'm depressed and I Want me back. Can anyone help?

    You will find the MRI attached to see what I'm talking about. Any help is better that what I'm getting..

    Thank You... Howie
    Last edited by Whiffr; 08-22-2007, 06:44 PM.
    Male age 42
    Dix at 12 Milwaukee brace 13 to 15
    right thoracic curve @ 65*
    left lumbar curve @ 35*
    L3-4 endplate degenerative changes
    left sided disc protrusion at L4-5 hittin the L4 nerve root
    Cervical,Thoracic and Lumbar degenerative disc disease
    Tags: None
  • #2
    Hi Howie,

    I'm not a medical professional, but, honestly, your MRI image doesn't look that stunning. You have good lung space so that's a good sign. I would think there is great hope for you. I would hope someone could refer you to a good adult scoliosis specialist in your area, based on personal experience. If not, you can find an SRS (Scoliosis Research Society) doc on this list... http://www.srs.org/directory/directory.asp

    Dr. McCarthy on that list is a pediatric ortho, but his office may be able to refer you to a good adult specialist who would have a more positive and reassuring prognosis. I hope.

    Good luck.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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    • #3
      Dr. McCarthy

      Carmell, thanks for the reply, I know it's not the worst out there but that's why I'm here, too get answers. Dr. McCarthy is the doctor I have the appointment with on the 12th. I know I'll know more after then but I wanted some real life help from my peers. Like I said I just want me back...
      Male age 42
      Dix at 12 Milwaukee brace 13 to 15
      right thoracic curve @ 65*
      left lumbar curve @ 35*
      L3-4 endplate degenerative changes
      left sided disc protrusion at L4-5 hittin the L4 nerve root
      Cervical,Thoracic and Lumbar degenerative disc disease

      Comment

      • #4
        Whiffr,

        I am sorry to hear that you are having such a difficult time with your back and emotional well-being. It sounds like there are so many different things playing a role in the way that you are feeling. Pain is a horrible thing to have to live with. I know it seems far away (your appointment in Sept) but hopefully the surgeon will provide you with more answers on what he might be able to do for you. You have come this far and sound like such a strong, amazing individual. Don't give up on yourself. Sorry I don't have any good answers for you. I would definitely visit the website recommended by carmell.

        -Christine
        Surgery completed July, 2007
        Fused from T4-T12
        23years old

        Comment

        • #5
          Hi,
          I just want to offer you some hope and support, it sounds like you are having a difficult time at the moment. I have been struggling with the decisions around surgery, quality of life issues long term etc... I found it immensely helpful to talk to a psychologist about my difficulties, and learn some ways of coping with it. I have been doing some specific things to reduce my anxiety around the surgery and prepare for it. There are also ways of learning how to cope with pain psychologically, which in turn can reduce your pain.
          When you are emotionally a bit battered, things like pain are worse and things seem overwhelming. Other than that, you'll find some good support on the forum but everyone is different and dealing with their own stuff.
          My disclaimer here, is that I am also training to be a clinical psychologist, so I am speaking from personal experience as well as having come from a bit of a psychological background.
          1994 curve at age 13, 70 degrees, untreated
          2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
          2007 26 degrees junctional scoliosis
          Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
          msandham.blogspot.com

          Comment

          • #6
            Welcome Whiffr-

            Glad you found us- you've had such a hard road! there is a lot of information here and on the links the others will send you- Let us know how you do- Sorry you have been in so much pain... Lisa
            Lisa age 47
            T curve 69 degrees
            L curve 40 degrees more or less - compensatory
            fused to from T-3 to sacrum
            anterior and posterior surgeries completed June 1, 2007
            pushing hard in recovery !!

            Comment

            • #7
              Dear Howard,

              Also sorry to hear about your pain with confinement to a wheelchair and lack of help from medical professionals. I also suffered with scoliosis since the age of 12 which steadily got worse. I ended up pretty much like you with an increasing curve, arthritis, DDD, pain, and almost on crutches or in a wheelchair. Depression is also a very common symptom with this chronic disease.

              Usually with scoliosis, the disks are not replaced. My understanding was that they were removed during the spinal fusion in order to straighten the spine when the rods are put in. Your mri looks like your spine is crooked clear down to the pelvis, so you would probably be fused clear to the L-5 or S-1. If the doctor is not comfortable treating you, find another one who is confident!! The website you were given is a good place to start looking!

              You are not too old to be treated and regain your life back!! Many on here were successfully treated up into their 60's. Don't give up!! We are all here rooting for you!!

              Deb
              age 48
              Posterior surgery 7/24/06
              for S curve T72, L77
              50% correction
              DON'T WAIT TO GET STRAIGHT!!

              Comment

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