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Post op with seizure disorder

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  • Post op with seizure disorder

    When I had my surgery in 1976, I was on a Stryker frame for 12 days and surrounded by 17 pounds of plaster for 6 mos. From reading posts, it sounds as if the surgery itself has not changed much, but the post op has. It concerns me a bit because our "boy" appears to be headed for surgery. Jon is 23 and autistic. He walks, walks, walks. Communication is at about the 6 mos level and over-all development is at about 1.5 years. He has almost no personal safety skills and will not understand "being careful". He has an active seizure disorder with intense grand mal seizures 1-2 times a week. Has anyone else been through post op with someone who has a seizure disorder and who has no idea how to protect himself to allow the grafts to heal? Do they put any kind of "jacket" on for protection? Will seizures dislodge the bone grafts and prevent them from healing properly?

    We'd appreciate any kind of feedback.

    Deb, Jon and Nancy

  • #2
    Hi...

    I'm so sorry for you and your son. I can't imagine how difficult it must be to make this type of decision. I think I'd much rather go through the pain myself than to watch my kid who doesn't understand what's going on, go through it.

    The newer implants are fairly strong and it takes a lot to dislodge them if they've been anchored well. Also, many doctors put their patients into a post-op brace. It sounds like that might make sense in your son's case.

    Best of luck with all of this.

    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
      Linda,

      Thanks for your concern and for your feedback--but you don't have to feel sorry for us. Jon has made us better people and really gives us a good perspective on what is important in life. He is a sweet and gentle person (not to mention handsome) and there is no better feeling in the world than when he looks me directly in the eyes and smiles. We have certainly had our challenges with him health-wise, and I guess the frequency has helped us deal with being supportive rather than pitying(sp??) him in his tough times. Not to say it is ever easy to see him in pain or discomfort. We do have a bit of a buffer because neither Nancy nor I gave birth to him. We originally got him as a foster child 16 years ago. Thirteen years ago, we freed ourselves of the beaurocracy and just took him. It helps not to have to say to myself, "I brought this child into the world and now look at the pain I've caused." We've enriched his life and he's enriched ours. We've become an extension of his natural family rather than a replacement. And since I've been through the surgery myself, I'll be able to empathize with him some and understand more of what he is going through. And we know that surgery now is going to prevent more complications in the future. His upper curve is now at 60 degrees after having increase from 45 in the past few years. We put off the surgery as long as we could, and I do have some regrets about that. I was at around 20 degrees when I had my surgery, and because of that, it was easier. Once I was out of the brace and stopped growing, the curve started increasing. The doctor recommended surgery immediately because he said it would only get worse. With Jon, we have had to deal with concerns about his understanding, tolerance and other medical problems, as well as getting Medicaid and medical professionals to see him as a "different" person rather than a "less than" person because of his developmental limitations. If the surgery had been done sooner, there wouldn't be so much of a curve to correct and it would be more flexible than it is now.
      But we'll get through this, too. We'll get more details from the Neurosurgeon on Tuesday! Wish us luck!!

      Deb, Jon and Nancy

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      • #4
        Hi...

        You have a great attitude. I'm sorry that I gave you the impression that I felt sorry for you in general. Although I've never had to deal with this personally, a good friend of mine has a Down Syndrome child and I now what a huge blessing he is. I'm only sorry that you have to make a decision that is bound to cause pain, and that you probably won't adequately be able to have Jon understand why it's all happening.

        Was your surgeon Hugo Kiem? He's the only one I've ever heard of who would even consider fusing someone with a curve < 40 degrees.

        Anyway, best of luck with all of this. I hope that Jon's surgery is completely successful, and that he has an easy recovery.

        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


        • #5
          My doctor was Arthur Pappas. He was the team doctor for the Red Sox for many years. He saw Jon when his curves first started showing and had him in a Boston Brace for a few years, but it really didn't do much good. He really needed a Milwaukee because of the upper curve but he has some other issues that did not make it workable. At that point, Dr. Pappas was seeing very few patients, I think because he had one foot in retirement and the other was still with the Sox. When we moved from NH to FL, needless to say, we no longer saw him. That's when we started getting attitudes that Jon was "less than". Attitudes toward people with disabilities are so different down here than in New England. I still haven't gotten used to it--and I hope I never do--so I guess that's why I'm a bit sensitive. We do appreciate your support and I'm glad I found this site because things are just so different now than when I went through it. He'll know he's not alone, but he has so many other things that will make his experience very different. My gut feeling is that they will likely keep him very drugged for the first several days. They had to do that once when he had a bad pneumonia. I don't know if they considered it a drug-induced coma. If not, it was certainly close. At any rate, we should find out Tuesday!
          Have a happy 4th.

          Deb, Jon and Nancy

          Comment


          • #6
            Hi...

            It sounds like Dr. Pappas was a general orthopaedic doctor. I cannot recommend strongly enough that Jon should be seen by a doctor who specializes in scoliosis. Hope that's what you've found. If not, here's a list:

            http://www.srs.org/directory/

            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


            • #7
              Actually, in the 70's, Dr Pappas was one of the most respected orthopedic surgeons regarding scoliosis. We considered ourselves lucky when I got in, and I have no complaints. Since then the scoliosis surgery seems to have transitioned into the neurosurgery realm and has gotten much more specialized. Jon's surgeon we are seeing on Tuesday is a neurosurgeon who does a lot with scoliosis at the University of South Alabama. The bottom line is, if we don't feel comfortable, we'll find someone with whom we do feel comfortable before anyone cuts into our young man!

              Deb, Jon and Nancy

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