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Thread: My son

  1. #1
    Join Date
    Jun 2004
    Location
    Nanaimo, BC, Canada
    Posts
    6

    My son

    Hello!
    I am the mother of a 31 year old son, who was diagnosed with congenital scoliosis when he was 2 years old. I knew as soon as he was born that something was not right. His stomach was leaning to one side, and was larger than normal. But when I mentioned it to doctors and nurses they just laughed at me and said that he was perfectly normal. I had this nagging feeling all along, and when he started to walk at 10 months it was very obvious that he leaned. However, several doctors kept telling me that his hips would adjust by the time he was four. No one took me seriously. When Daniel was two, I happend to mention my deep concern to a friend of a friend who got in touch with the Shriners Hospital in Portland, Oregon, and within two weeks my son was diagnosed by specialists. Now the long journey started.
    First it was a spinal fusion, and a brace for a long time. Later he underwent surgerys, halotractions, a harrington rod, braces and body casts. Needless to say, he went through a lot, but he was allways a trooper. I, as his mother was aware of that he would encounter a lot of problems in his teens, as his body is very deformed, and your apparance is important at that age. There was never an issue being made of that, but I knew it would happen. However, how could I put myself in the position of a 15 year old boy? When Danny was eighteen, he got involved with heavy drugs. Later he became a heroin addict. Fortunately he has kicked the habit with a lot of trials and errors. We know that there is a lot of research being done in the field of scoliosis, and hope that something can be done to help my son to improve his physical apparance as well as coping with the discomfort. He told me he is willing to go through anything. We were told, when he was twelve that there was an operation that could straighten him, but the risks were to big for me to decide. Now, he has decided for himself, and I will do anything to help him. I am sorry this posting became so long, but is there anyone out there who know of any specialists that could help. I am so glad to have found this site, and thank's for listening/reading.
    Christina

  2. #2
    Join Date
    Apr 2004
    Location
    new jersey
    Posts
    323
    Dear Christina,
    No post is to long for this forum...so welcome...I'm sorry to hear your son had such a hard life living with scoliosis...it is such a sad story, one of many on this forum...I can give you support and ask that you read everything you can on this site ...Check out other links and read from that...Look for the best surgeon in your area and see what options hold for your son at this stage of his illness. I wish the best only the best..good luck.
    CONNIE


    Surgery June 28th 2004
    fused T4 -L3
    Hip graft
    Grown 1 1/2 inches
    25/o upper T 15/o
    53/o T 15/o
    37/o L 6/o
    Dr. Micheal Nuewirth
    New York City

    August 6, 2004
    Pulmonary Embolism
    complication from surgery

    January 2007 currently
    increasing pain at the T4/5
    point irratation heardwear

  3. #3
    Join Date
    Jun 2004
    Location
    Nanaimo, BC, Canada
    Posts
    6

    Thank's

    Thank you Connie;
    I soo appreciate your kind response. It has been so many years without any support and understanding for Danny and me.
    Thank God for the internet.
    Hugs, Christina

  4. #4
    Join Date
    Jun 2004
    Location
    Nanaimo, BC, Canada
    Posts
    6

    doctors appointment

    Hello again;
    In Canada, you can only see a specialist on a referral from your family doctor. Thank's to this forum I got the name of a specialist who deals with adult scoliosis in Vancouver, BC. I phoned and was told by his office that it could take between 1 month to 3 years to get to see him. Danny has an appointment with his doctor tomorrow, and I am going with him, as I am not sure that he will be able to relate to the doctor how desperate he is to get help. His doctor put him on a "puffer" because he is now experiencing shortness of breath due to his curvature, he is also having a lot of pain and have problems sleeping as his rib hump is getting more severe. And as I said before, he wants nothing more than finding help for his psysical apparance. It has got to the point when he does not even want to be seen in public.
    Could anyone give us advise on how to ask the doctor to present the referral to the specialist so Danny can get on his priority list. I am afraid that Danny's concern over his apparance will give the doctor the wrong idea, as no one can understand the hell Danny has gone through unless they have lived with it, and that includes doctors. Danny deserves help with the scoliosis, and that means everything and anything that is available.
    My heartfelt thank's for any advise. Christina

  5. #5
    Join Date
    Jun 2004
    Location
    Ireland
    Posts
    35
    Hi Christina,
    Sorry I didn't get to see this post before your son got to see his family doctor,but I totally understand where he's coming from. I'm 36 years old and was born with idiopathic scoliosis.Like your situation my mother's concerns were brushed aside and I was 7 before I got a brace for my back.It was an old style Milwaulkee and was a disaster. My follow up was non existent and we were led to believe that scoliosis surgery could not be done on a child.
    I finally found a hospital willing to help when I was 15 and was measured as having a 110 degree curve.Following A failed Halo traction (caused damage at L4/L5) I had an uninstrumented fusion which acheived no correction. My lung capacity is 50% and I use the inhalers as well to improve my breathing.My rib hump is still deteriorating but I am unable to find a surgeon willing to take down the old fusion and redo it all.
    If your doctor still hasn't written the referral letter he should emphasise the degree of curvature and the increased breathing problems your son is experiencing.To protect his breathing is the main priority. I can understand the cosmetic effects of such a large curvature but It doesn't bother me too much due to the fact that I have spent the last two years on the scoliosis message boards and found it to be a great help.I am married with two small children and work full time and i have never let scoliosis get the better of me.I wish your son all the best with his search for the right consultant.Please let us know how he gets on.
    Sinead.

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