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Thread: Hello....New And Need Advice!!!!

  1. #1
    Join Date
    Jun 2005
    Posts
    9

    Hello....New And Need Advice!!!!

    Hello...My name is deborah and i was first diagnosed with scoliosis when i was eleven years old. I had some kind of experimental electralysis treatment done. It didnt work. My parents got a divorce and everyone sort of let it go until i was sixteen and found my curve was at 42 degrees. The doctor followed it for another six months and found it was getting worse by the month, so i had a harrington rod with a spinal fusion done. That was in 1990. There wasnt really any aftercare, after my surgery. Because of my age....17....the doctor didnt believe in pain meds. No brace. No pain management. No physical Therapy. Just...have a nice life. I was completely released from care. My surgery was the beginning for me. I have since had more pain, muscle spasms, chronic fatigue, circulation problems, stiffness in my entire body, numbness in my limbs, joint problems, keloid scarring, reoccuring infections, migraine headaches. I have had two children. One was born with hydracephalus/ cerebral palsy and had to be shunted. My other child was born hearing impaired. I have gone back to several other orthapedics during the years and basically was told, to lose some weight and learn how to deal with the side effects. Ive never been able to get any answers from anyone. Sorry this is so long but i would be interested to see what others that have gone through the surgery have been through.

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,801
    Hi...

    Unfortunately, many general orthopaedists and even some spine specialists don't know or don't want to refer patients to the appropriate doctors. You need to be seen by someone who has a lot of experience treating patients with prior scoliosis fusions. Where are you located?

    Regards,
    Linda

  3. #3
    Join Date
    Jun 2005
    Posts
    9
    i suppose....ive been in and out of my doctors office and have had five ervisits in the last year. Any time i bring up my back as a possible culprit, i basically get blown off. I stopped seeing anybody for a lot of years but i now have two special needs kids to take care of and i cant be sick. If u think there is someone that can help me it would be worth a shot. Im convinced at this point that i will die young. Ive been that sick for that long and it seems to be getting worse as i get older.

  4. #4
    Join Date
    Jun 2005
    Posts
    9
    oops...sorry, i didnt answer your question. Im in central florida between orlando and tampa.

  5. #5
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,801
    I've had several good reports on Anthony Moreno:

    http://www.floridaspineinstitute.com...sp?did=1&bid=1

    I doubt that all of your problems are caused by your scoliosis or your rods, but certainly back pain, neck pain, leg pain, and fatigue could be attributable. My advice would be to be careful not to overwhelm any one doctor with all of your complaints. If you get to see Dr. Moreno or another scoliosis specialist, talk to him about your spine and leg pain, but not the other things unless he asks. I know from experience that it's difficult to know what is causing what. Hopefully if you take care of your spine, some of the other problems will resolve as well. If they don't, at least you'll be able to understand that they're probably not related to your spine.

    Good luck.

    Regards,
    Linda

  6. #6
    Join Date
    Jun 2005
    Posts
    9
    Thanks....i will look into it when i have insurance again.

  7. #7
    Join Date
    Apr 2005
    Posts
    913
    Hi mdeborah8,

    I have experienced and still experience a lot of what you describe. Like Linda said it is best to consult another ortho. Headaches are usually a sign of neck problems, I have had acupuncture and ostheo treatments to help me with them, as well as physiotherapy for those and other symptoms as well, like leg pain, sciatica, etc. I don't know if you do any exercises but they do help with pain a whole lot, as well as fatigue. Walking, swimming, stationary biking, to name a few, all in moderation, and of course whatever you feel helps you and is best for your type of pain. I also don't sleep well due to pain and the fact that I'm an insomniac by nature, so I do take a relaxant before going to bed, it helps sometimes. All these little things combined with seeing a specialist that will listen to you, will help a great deal.

    Don't despair, I know what you mean about thinking your life won't be as long as it should be b/c of the pain, I often think I'm getting older than my age(I'm 34) and can't handle it all but then there are ups and downs, wich is normal

  8. #8
    Join Date
    Jun 2005
    Posts
    9
    Thanks Sweetness....i got really burnt out on the whole medical field in my early twenties. I was either told to go on a diet or prescribed antidepressants because obviously i was "depressed". The chiropractor i tried to consult wouldnt even touch me because of the liability due to the rod. Needless to say i am depressed now, after all the years of living like this.

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