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  • Spastic Diaplegia CP options, thoughts and advice.

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    Old 10-03-2011, 10:03 PM   #1
    ashleyns
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    Spastic Diaplegia CP options, thoughts and advice.

    I have been looking into options for surgeries that can help with Spastic Diaplegia. I am 22 years old and have started having some problems and other things that have made me want to try to see if there are any options for help. I have been reading about SDR and seen some pretty amazing things come out of it. I had a experimental surgery when I was 12, but I honestly think it made things worse for me. I am pretty sure it was the tendon lengthening surgery, but I don't know for sure because the only person that would know for sure can't remember. All I know is I have 3 scars on each leg to remind me about it.

    I really just want to know if anyone my age or around my age has had SDR or any other surgeries and their honest opinion about it. I also would like to know of some good doctors in NC are because that is where I am from. I seen Dr. Koman at Wake Forest Baptist Hospital when I was younger but I do believe I am too old to see him now.

    Any thoughts, opinions, or advice is welcome!! I am just really wanting some information from people who experience this!

     
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    Old 11-07-2011, 05:14 PM   #2
    nwmom
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    Re: Spastic Diaplegia CP options, thoughts and advice.

    Hi there--they have a new Dr. at Wake Forest Baptisst Health where Dr. Komen is who does SDR. He trained with Dr. Park in St. Louis (who does a minimally invasive, highly successful SDR technique). I asked Dr. Park on ******** about the Dr. here, and he said he highly recommends him. Good luck!

     
    Old 02-15-2012, 02:14 AM   #3
    Aviaja
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    Re: Spastic Diaplegia CP options, thoughts and advice.

    Hi

    I'm really sorry to hear that your CP is getting worse, also because of your young age, it also makes me think - when looking back at your medical history - that perhaps surgery should be a last resort for you. My advice for you, would be to try excercise yourself, go to the gym, lift weights, start jogging and get a physio therapist.

    I have CP diplegia myself and 6 years ago, i was in the same situation as you. My cp was getting a lot worse, i was really sore, when i tilted my head forward when sitting down, i could feel it all the way down my spine and i would get so nausious, because i was so tight in my body. i could barely tie my own shoelaces, even when sitting down, because my muscles was getting so weak, that i could barely lean forward, and staying there long enough to tie my shoe, was a serious struggle. I couldn't sit up for very long, because of a weak back, and i could barely take a step up for example on the bus or subway. It was bad...

    Then i started jogging, lifting weights, during physiotherapy. I lost 16 kgs, i run 5 km faster than average, faster than my friends, and i can compete with other "normal" people who are also in great shape. My life in general is so much easier, i am no longer chasing my next nap, now i'm chasing goals, setting new ones, living life.

    My advice to anyone, would be to always try something natural...first.
    Let me know what you think.

    Take care
    Aviaja

     
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    Tags
    adult, cerebral palsy, north carolina, selective dorsal rhizotomy, spastic diplegia



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