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Thread: 21 year old son just found out, Mom is a mental mess

  1. #16
    Join Date
    Feb 2007
    Posts
    24
    Linda, I will look around and see if I can refind it. It was not on a ( miracle cure site) it was on list of things that can ( or maybe may was the word used) influence curve progression, maybe at one of the Spinal/Ortho Clinics I have been reading, ...it had like size and type of curve, when curve started,being a woman, menapause and overweight.I think pregnancy was on there too. I know being overweight is hard on anyones back so maybe it just helps gravity along.I just remember when I read it I thought if Michael takes after his Dad that will not be an issue ( 20 pounds in 27 years and started underweight!)and neither will menapause, hormones or pregnancy.Of course he failed the size of curve!!I have been on probably a thousand sites/pages since this has hit our family, some has been all hype and hard sell, some has been stupid!. I do not think this was a study paper though it seemes like it was at a personal Doctor/Spinal Clinic..web page so maybe its his/their opinion too..I do remember it was talking about adult reasons for considering surgery, not for children.What made me think of it was another member from Canada said she was expecting to be told to have surgery but the surgeon told her to lose weight and get in better shape and the Dr said something about United States does surgery too soon and too often. ( Those were not the exact words but close)Of course the free health care system of Canada might influence him too....I did not mean to imply losing weight would help people curves not progress....after reading on here it seems like some progress no matter what.Also had a man say his curves have stayed the same for years and his was in the 60 degrees and I think he said he was in his early 60's... 61 or 62 I think.I just have to wonder why his stopped without surgery and he said he had no pain either. Guess I am wanting answers and all I get is more questions!

  2. #17
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,287

    Question some curves progress and some not??? Why?

    Some recent research seems to indicate that there is a genetic component to(idiopathic) curve progression-in other words some curves progress throughout life no matter what(unless stopped by surgery or adolescent bracing) and others just stop at say 30 deg. A recent publication by the Scoliosis Society I get at home shows even more research indicating this.

    This is such a dilemma and a maddening mystery. All we can do is deal with what we are dealt with.

    In my case there is scoliosis in both sides of the family-my mom's, sister, brother and girl cousin and on my dad's side a cousin's daughter. I was perfectly straight until 11 years old and by age 13 my curves(3) progressed in a malignant fashion to 100 deg thoracic. I was a healthy, athletic child who swam, did ballet, loved gym, of normal weight, climbed trees and slept on a firm mattress without a pillow.

    Go figure.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  3. #18
    Join Date
    Feb 2007
    Posts
    24
    I was wondering if anyone had ever read about having a spinal tap as a child, could ever play into it.Someone told me Hitler caused Scoliosis to happen in some people .....some of his weird experiments on the spine. ( I DO NOT KNOW IF THIS IS TRUE, ) Michael stopped breathing at five weeks and I did CPR and when they got him to the hospital he had a spinal tap to rule out some diseases.They called him a near sids baby and sent him home with a monitor for a year.We have done a lot of research on both sides of the family and can not find anyone except a niece with I think was a 10 degree, she never was braced and never got worse.My husband had 13 siblings so we have a lot to compare with on that side.I knew most of my Great Grandparents and their brothers and sisters and never remember anyone being curved or disfigured or anyone talking about it.Most of them was as straight as a whip, skinny very active bunch, some lived to be over 100. I do have a third cousin that has severe cerebral palsy due to being born very early who is showing signs.Wow Karen, you have quite a history in your family, it would seem in your case genetics came into play. I had to laugh about the firm mattress without the pillow.If my Dad was still alive he would of said get that boy a good mattress AND EAT HEALTHY.If only that would cure it.....have you ever heard about race coming into it? Having Native American in my background ( those Great Grandparents I never knew, have seen pictures though )I was told by my Doctor that certain diseases are more common in some races.Which I guess would be a genetic link of sorts...so many questions and not answers.I want to thank everyone for their information, support and sharing.How wonderful the net can be!

  4. #19
    Join Date
    Feb 2007
    Posts
    24
    Linda, I found this page about being overweight. Not for sure this was the original page I saw though. http://www.scoliosis.org/resources/m...tscoliosis.php Adult Scoliosis by Nancy Schommer, author of Stopping Scoliosis

    Because so many adults have contacted the NSF, we asked Nancy Schommer, author of Stopping Scoliosis, to provide us with an update about adult scoliosis. In the course of her research, she interviewed Dr. David B. Levine, Clinical Professor of Orthopedic Surgery at Cornell University Medical College and Director of Orthopedic Surgery at the Hospital for Special Surgery in New York City. Following are excerpts from their conversation.



    --------------------------------------------------------------------------------


    Q: Dr. Levine, is it possible for an adult, a person 21 years of age or older, to suddenly "get" scoliosis?
    A: It's possible but extremely rare. When it happens, it is usually because the patient has experienced some sort of trauma, such as a fractured spine, or because the person develops a neuromuscular condition like muscular dystrophy, or a metabolic condition like osteoporosis that softens the bones. Most often, however, adult scoliosis develops in adolescence, and is the "idiopathic" variety, which means it occurs for no apparent reason.

    Q: Will untreated adult scoliosis get worse year after year?
    A: I've followed patients for over twenty years, and have found that probably 60% of adult patients do not get worse. Of the remaining 40% about 10% show a very significant progression, while the other 30% will show a very mild progression, maybe less than one degree per year.
    Q: Are there any factors that can decrease or increase one's risk of progression?
    A: Yes, there are. The person who is sedentary and overweight is inviting problems.

    Q: What treatments are available for adults with scoliosis?

  5. #20
    Join Date
    Aug 2005
    Location
    S. Jersey
    Posts
    16
    Quote Originally Posted by Michael Barga
    I was wondering if anyone had ever read about having a spinal tap as a child, could ever play into it.Someone told me Hitler caused Scoliosis to happen in some people .....some of his weird experiments on the spine.
    I doubt very much that a spinal tap could cause scoliosis... however, I do know that a laminectomy (in which they remove the back bones of the vertbra that go over the spinal cord) may as it can reduce the support in one area... most likely in relation to Hitler he was doing some serious messing with the spine, not just needles...

    Also, with weird ribs sticking out, is it possible Michael's father had scoli, since the twisting can make the ribs more prominent on one side of the body... Sometimes rotation of the spine causes more obvious problems than the side to side curving does... My son's ribs weren't affected but his spine twisted below the ribs, and you could see 1/3 of his ribcage on one side and 2/3 of it on the other side, with the opposite in the back... rather than seeing half and half with the sternum and the spine in the middle like normal...
    Connie - Mom to Billy 5
    (CRS/VACTERLS incl. tethered cord, IA, single kidney, hemisacrum, levoscoliosis with hemivertebrae (fusion T11 to S2/hips 8/06), extra left rib, hypospadius, hypoplastic left leg w/clubfoot and 4.5cm length discrepancy,GI issues) conni60640@aol.com, http://members.tripod.com/conni60640-ivil/
    TC support group http://health.groups.yahoo.com/group/LMC-TCS/
    Congenital scoliosis support group - http://health.groups.yahoo.com/group...liosisSupport/

  6. #21
    Join Date
    Feb 2007
    Posts
    24
    The reason I asked about the spinal tap was when I asked the surgeon he really did not say no way, just kinda slipped around the question and said oh no I doubt it very much....etc..I do remember how hard they had it doing a spinal tap on him.I was in the room.My husband was told as a child he had ( floating ribs) never have heard that term since..its like his lower ribs stick out funny on one side...but it does not look like Michael's... his shoulders are even and when he bends there is no rib hump....He did see a Chiropractor ( this one is an actual medical Dr too!)many years ago and there was some rotation noted? and he was told his back looked like he had jumped out of a plane with no chute. But they never said Scoliosis and from the back one can not tell like you can on mIchael.They did tell him to expect a lot of trouble down the road and he would get worse as time went on( could not believe he had not been in pain for years.It has been almost 12 years and he has not ever went back, never has hurt again. He had strained his back at work.He is 52 now. We have heard for years that Michael and his Dad walk just alike...it is a very distinctive way of walking/standing.My son was working at his factory and a Driver who had never met him walked up and said you have to be Mikes son.He had worked with my husband years before!!He never saw his face it was the walk. Its not a handicapp type of walk..its hard to describe..their stride is very long and its in their back position too...My other sons walk like him too but not as extreme as Michael.Michael even said the other night I bet Dad has it too just a different way AND OF COURSE he brought up the fact that Dad does not have trouble like they predicted...at least not yet.

    scoliboymom, been following your updates about surgery... will keep you guys in our heart and prayers

    Beckymk,thinking of you guys and I can relate about the surgery questions and fears.Eye glasses here too...I keep thinking what if down the road they find problems with the eye surgery...I think of hormone replacement therapy and how viewpoints have changed on that.I wish sometimes as a family we did not question things so much but we can not help it.I think it is born into me and maybe I passed it along to the boys.We have never followed the crowd along quietly....not saying we do not follow sometimes but it has never been quietly??!! We do have some good discussions on the way.

  7. #22
    Join Date
    Jul 2004
    Location
    Central Texas
    Posts
    62
    I haven't been on this board for quite a while. (Came back on today to check out what has been said about spinal fusion patients and roller coasters.) Having had a son diagnosed with scoliosis, I wanted to respond to you.

    1. Guilt. Oh I can so relate. I found my son's scoliosis the summer after 9th grade. (He did not like to go shirtless either.) Because he still had some growing to do and the curves were so advanced, surgery was our only option. (And now, three years later, I can't even tell you his numbers! - even though I thought I'd never forget them.) I cried every day for a long time because I felt so guilty about not having caught it. (Our orthopedist was very sweet and said that many parents don't catch it. He said he's had patients whose parents were doctors and that the scoli was caught by someone else.) So take comfort in knowing others feel the guilt.

    2. Because my son has asthma, he had to see a pulmonologist before surgery. She required an x-ray. The x-ray showed that his scoliosis was squishing one of his lungs. Just wanted to throw that information into the discussion; scoliosis can affect other organs and that may create a greater need for surgery.

    Good luck to you and your son on his decision. As I said, my son had the surgery in 2004 and, so far, we have not regretted the decision and would do it again but I am aware it is a BIG decision.

    Susan

  8. #23
    Join Date
    Mar 2008
    Posts
    68

    Thanks For Sharing

    Thanks for sharing what you are going through. I am a mom of a girl diagnosed with 26 degrees at age 6. She is 10 now and surgery is in August. I have the whole gamut of feelings. Guilt, anger, depression, etc. It's so hard being a parent. I so wish it were me instead. With my daughter's case, she has a hump forming and if we fuse now (she's still growing) we can avoid messing with the lumbar spine which is where I think a lot of later pain may come up. Anyhow, I am just looking for support--I was in tears a lot today (just found out curve went from 33 to 49 in last 5 mos.). Thanks and take care.

  9. #24
    Join Date
    Mar 2008
    Posts
    68

    10-year-old 49--no Pain

    My daughter who was diagnosed at 6 with a 26 degree curve, then went to 33 Oct. 2007 and March 2008 has gone to 49 in just 5 months. She does not experience pain.

    She does get tension in her trapezius / shoulder particularly when playing piano and she does get 3 migraines/year but no pain. Anyhow, this is similar pain/tension to the rest of us.

    One reason I am opting for surgery now is to avoid involving her lumbar spine which could happen if we wait. Now it is just thoracic. I have read research that shows a lot of pain when the lumbar spine is involved and becoming a chronic condition sometimes starting 5-10 years out but making life very difficult.

    Take care I've got to run now. Will read posts later.

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