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Thread: anyone out there with 65-75 degree without surgery

  1. #1
    Join Date
    Feb 2007
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    24

    anyone out there with 65-75 degree without surgery

    My son was seen a month ago and found out he has Scoliosis...21 years old and was never found before. He saw a specialist yesterday and he said 75 degree... before it was 65, a month ago. The difference was he said was because of where he read the x ray. My son has no pain..he has said no surgery... but I am scared of the future for him. He"s tall and skinny and in excellent health as far as we know.Is there anyone out there that has not seen an increase in this size of curve... men especially.I read a lot about the newer brace but I do not see him wearing this, at least at this time.Was wondering if weight problems or other conditions caused the increase or if it was just plain gravity. I see some people at 70 fit and trim and very upright and then I see others very stooped over but they do not have scoliosis. ( But some has had back surgeries) I see quotes of 80 per cent of curves this size will get worse.... we are wondering about the 20 per cent or 10 percent if you read elswhere that do not get worse. We do realize hes young and surgery will be an option for quite a few years but worry about curves being so bad that surgery will not be an option. Thank you for any responses. Mom Barga writing under my husbands name!

  2. #2
    Join Date
    Oct 2005
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    Chicago north suburb
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    Hello and welcome,

    Yesterday I noticed a member had a birthday and turned 57 (my age) so I read through his past posts. He has not posted in a while, but what I found interesting is that he talked about his 75-degree lumbar curve that has pretty much stabilized. His doctor is not recommending surgery because this man is not experiencing pain. He had an e-mail address posted so I contacted him to see how he is doing since his last post three years ago. He tells me that he is doing fine, wears a support brace while working and keeps fit by ballroom dancing 3-4 hours a week, and his curve has not progressed anymore. I myself have a 75-degree lumbar curve and am having second thoughts about surgery. I would require a very long fusion and I’m not sure I could deal with total loss of flexibility. In addition, while I have discomfort in the evenings, I have no problem working full time. I noted that this man’s doctor is Dr. Chris DeWald in Chicago. I have seen his associate Dr. Kim Hammerberg. And now I’m wondering if these doctors take a very conservative approach and don’t push surgery unless they feel it’s absolutely necessary. When I last saw Dr. Hammerberg, I expressed my concern that I could have a 100-degree curve by the time I’m 65, and he just said “naaa”. Another point of interest is that I re-read Dr. Michael Neuwirth’s “The Scoliosis Sourcebook” and he states that once curves get large (70 to 80 degrees), progression slows down. This has given me a lot of pause for thought in my own situation. And since I’m not in significant pain, maybe it would be better to take a “wait and see” approach rather than agree to a big, life-altering surgery.

    Chris

  3. #3
    Join Date
    Feb 2007
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    We are going to get the book you mentioned. I have only been reading for a month on this but I never read about a slower progression after a point, that is interesting. I did read sometimes the spine fuses naturally over the years because of the wear ( I think that is the word they used). I found that interesting,sometimes I feel the body finds its own solution. The surgeon yesterday talked about fixing the rib hump... that is not a concern of my son....I guess he figures he made it to 21 before anyone noticed... and he is not into just looks... although those pretty girls turn his head every once in awhile. I know for some on here cosmetic is very important and I understand that and I am not making lite of it. He is a hunter and fisherman and works 40 hours a week lifting very heavy parts (75 pound parts, only a few times has he ever said his back hurts and usually it because he lifted the parts that require 2 men to lift ! ) We are trying to get him to change jobs though just because of the lifting is hard for anyone. Thank you so much for replying and letting me know there are other men living with these curves. Great to know there are conservative Doctors too. I have seen information anywhere from 40 to 65 when surgery is recommended.This has just shaken our whole family to the core, we have four sons and he is our oldest.The only trouble he has ever gave us is a messy room and he has been very vocal about not having surgery! He says I can work, shoot my guns and I do not hurt and I think I look ok and I am not having any other nerve problems... so why do surgery. I guess I find myself asking the same!

  4. #4
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    Sep 2003
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    NJ
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    What happens when significant scoliosis untreated??/

    Here are 2 abstracts from the National Library of Medicine describing studies of adult curves which are not treated:

    1: J Bone Joint Surg Am. 1983 Apr;65(4):447-55. Links
    Curve progression in idiopathic scoliosis.Weinstein SL, Ponseti IV.
    One hundred and thirty-three curves in 102 patients who were followed for an average of 40.5 years were evaluated to quantitate curve progression after skeletal maturity and for prognostic factors leading to curve progression. Sixty-eight per cent of the curves progressed after skeletal maturity. In general, curves that were less than 30 degrees at skeletal maturity tended not to progress regardless of curve pattern. In thoracic curves the Cobb angle, apical vertebral rotation, and the Mehta angle were important prognostic factors. In lumbar curves the degree of apical vertebral rotation, the Cobb angle, the direction of the curve, and the relationship of the fifth lumbar vertebra to the intercrest line were of prognostic value. Translatory shifts played an important role in curve progression. Curves that measured between 50 and 75 degrees at skeletal maturity, particularly thoracic curves, progressed the most.

    PMID: 6833318 [PubMed - indexed for MEDLINE]1: Spine. 1986 Oct;11(8):784-9. Links


    Natural history of untreated idiopathic scoliosis after skeletal maturity.Ascani E, Bartolozzi P, Logroscino CA, Marchetti PG, Ponte A, Savini R, Travaglini F, Binazzi R, Di Silvestre M.
    A total of 187 random cases of untreated idiopathic scoliosis, seen from a minimum of 15 to a maximum of 47 years after the end of growth, were reviewed. All curves increased after skeletal maturity (average progression: 0.4 degrees per year). Thoracic curves tend to progress more than lumbar, lumbar more than thoracolumbar, and thoracolumbar more than double major curves. Pain was present in 114 cases (61%) and appeared more frequently in women, after pregnancies, and with fatigue. Cardiopulmonary symptoms were present in 42 patients (22%), especially those with thoracic and thoracolumbar curves greater than 40 degrees. Psychologic disturbances were found in 35 cases (19%), mostly female patients with thoracic curves greater than 40 degrees. The cosmetic appearance of these patients at long-term follow-up was better compared with that at the end of growth, even though the curves progressed. Patients with decompensation of the trunk at the end of growth seemed to improve with time. In an unselected group of patients with severe curves a mortality rate of 17% was found, twice as much as in the Italian general population.
    PMID: 3810293 [PubMed - indexed for MEDLINE]

    These studies are old(1983/1986) and done when adult scoliosis rarely treated. So, basically, all they could do was watch and document progression.

    With the advent of adolescent treatment less and less adults must live their lives with progressive deformity and pain. Notice the increase in mortality.
    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

  5. #5
    Join Date
    Feb 2007
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    I wonder about other health problems they had like cerebral palsey and muscle diseases, or if they smoked etc.How can one ever do a study on just Scoliosis....so many things come into play.I just read about another study of untreated and the outcome was not as grim of these two. I am not doubting you that surgery has its place and may be best for him at some time or maybe RIGHT NOW but he is saying NO.To be truthful I am scared to death of the surgery and just as scared if he does not get it.One day my husband and I think just get it over with and the next we think maybe he should wait. But at 21 all we can do is give him our love and support and information.

  6. #6
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    Jan 2006
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    near Philadelphia
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    Surgery is a very frightening proposition and one that I fought for a long time. However, I was told by a top scoliosis specialist that even if my 70-deg. curve were to stabilize, I would still run into progressing trouble down the road with bulging and rupturing discs and nerve involvement because of the extraordinary wear and tear on my spine that the curve causes. I also have the beginnings of a big sideways shift on my curve from the discs growing unstable. ANother factor for me is a very high degree of rotation, which will eventually impact my diaphragm and lungs.

    I'm 51 -- almost 52. Some days I feel okay, other days it feels like a big effort -- and painful -- just to hold myself up. I occasionally also have mysterious and worrying pains in my legs at night. So....all things considered, I think fusion is a risk I need to take for my large curve.
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

  7. #7
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    Sep 2003
    Location
    NJ
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    Lightbulb

    I wonder about other health problems they had like cerebral palsey and muscle diseases, or if they smoked etc.How can one ever do a study on just Scoliosis....so many things come into play.I just read about another study of untreated and the outcome was not as grim of these two.
    Michael Barga

    A good study will differentiate between "idiopathic scoliosis" and other forms such as scoliosis resulting from other factors such as polio, cerebral palsy, congenital deformities, syringomelia etc. There are such studies targeting those groups only and progression is far worse. The studies I posted were over a very long time up to 47 years.

    Of course you're scared; my mother faced this 50 years ago when I was 13 years old. Yes, I had an old form of surgical treatment involving casts, spine fusion and a year in bed!!! My curve was 100 deg and that surgery, far riskier than today, saved my life. Neighbors gave her all sorts of opinions:"she might end up paralysed don't operate--educate her instead" ---as if I would live long enough to use the education.

    My suggestion for your dear son: check to see if there is a scoliosis support group in your area or perhaps he can chat on-line with other chaps in the same boat.
    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

  8. #8
    Join Date
    Feb 2007
    Posts
    24
    Thank you all for your responses.Singer I will remember you in our family prayers as you get ready for your surgery.One has to do what one thinks is best in each individual case. If I thought he was having pains in his legs from Scoliosis I would be concerned. 51/ 52 is still young,I am sure you will do fine.I actually met a lady in her 70's who could of had surgery but she didnt want to stay in a nursing home for a couple of weeks and has decided not to have it. She decided to have her daughter get the surgery when it was experimental, her daughter was with her that day.She said she had never had back pain but she was so bent over toward the front..... she said she had never had any trouble after the surgery though.... her mother was a lot staighter than her.The mother was a really snappy dresser( said she dressed to hide the curve) and looked so good for being in her 70's... she did tell me she had worn a "girdle support thing" for about 20 years, called it her dear friend. Her daughter said her mothers degree was high but never told me the actual numbers.I hope at 70 I can move like her and have such an upbeat personality.
    Karen, this woman's daughter was about 50 or so she must of had her surgery about the same time.Not for sure how old she was when she had it though, told me she does not remember much about it.Guess there is nothing as strong as a Mother's love, very brave Mothers to make the decision for surgery years ago.
    Last edited by Michael Barga; 03-10-2007 at 12:06 PM.

  9. #9
    Join Date
    Jun 2006
    Location
    Euharlee, Georgia
    Posts
    449
    My mother asked me 30 years after my surgery if I regretted it and I told her no. Because I have a "C" shped curve, I was told that with the shape and progression, I would not make it past 30 years old. I had no regrets about my surgery or my daughter having the same surgery. As a mother, you worry about your children. This surgery changes your life - whether it is for the positive, it is up to you and your child.
    T12- L5 fusion 1975 - Rochester, NY
    2002 removal of bottom of rod and extra fusion
    3/1/11 C5-C6 disc replacement
    Daughter - T7 - L3 fusion 2004

  10. #10
    Join Date
    Feb 2007
    Posts
    24
    There would be no question about the surgery in my mind if I was told like you that my son would not make it to 30 years old.It truely was/is a life giving surgery for cases like your's.I would have no regrets either! I was just shocked ( age wise)when I met this woman that she was still being offerred the option of having surgery in her 70's. Her Doctor is highly thought of and recommended.In her case it was not a life and death situation yet but she said the pain issue was bothering her some. She just felt like she did not have time to mess with the recovery in the nursing home right now....I got the impression she was a go getter senior citizen, who never stopped.She even said "Well I might have to have it later." It was just so encouaging to me to know that my son had time down the road for surgery to be still be an option, even though recovery might be harder and longer.The surgeon we saw said he had time too so that was reassuring and right now it was not medically needed.

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