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Thread: Spotting other people with scoliosis

  1. #1
    Join Date
    Jan 2006
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    near Philadelphia
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    1,260

    Spotting other people with scoliosis

    It seems as though ever since I made the decision to have the surgery I keep seeing older people zipping around with severe curves, seemingly doing very well. This messes with my mind a little. Today I saw an old lady in the supermarket who obviously had the same kind of curve I do -- one hip was way higher than the other -- and she was very, very short. She was walking okay, but she was leaning pretty heavily on the shopping cart. I wanted to talk to her in the worst say but I didn't have the guts. I wondered if she was in pain... if only we had a crystal ball and could see where we would be in 20 years if we didn't have the surgery!!

    Okay, enough rambling. Nothing's changed....I'm still having the surgery. Just wanted to get all that off my chest....
    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

  2. #2
    Join Date
    May 2004
    Location
    Houston, Texas now live in Colorado Springs, CO
    Posts
    544
    Hi Chris,

    I have often wondered the same thing! The other day I was using a cane because I was out shopping by myself. I was mainly running (Walking is about the fastest it gets.....and that's pretty slow) into a couple of stores to see if they had a certain item. Of cource they didn't, but I saw something else! An older lady saw me struggling with the item, my purse, and the cane and came over and said, "For the next time, it's easier to get a shopping cart when you go in a store than using a cane." I told her that I had found that out! I just wasn't planning on buying anything (famous last words!) today so I didn't get the cart. We got to laughing some and went our seperate ways. I think next time that I see someone I'll bring something up. We had a nice little chat.
    Theresa

    April 8 & 12, 2004 - Anterior/Posterior surgery 15 hours & 7 hours
    Thorasic - 79 degree down to 22
    Lumbar - 44 degree down to 18
    Fused T2 to sacrum
    June 2, 2005 - Pedicle subtraction osteotomy @L3 7 hours
    MAY 21, 2007 - Pedicle subtraction osteotomy @ L2, extended the fusion to S2 and added pelvic instrumentation 9 hours

    FUSED T2 - SACRUM 2

  3. #3
    Join Date
    Aug 2006
    Location
    texas,dallas area
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    136
    yeah everytime me and my mom are in a store she will comment to me,look at that lady leaning over, struggling to walk ,she reminds me if i dont get the surgery how much pain ill be in.
    Trudy T60 L70 posterior surgery feb.8th 2007

  4. #4
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,293

    I don't envy them!!!

    I am now 64 having had a successful revision 4 years ago.
    Had I NOT had the surgery I would have definitely been in pain, disabled and not able to work or be there for my husband, my 90 year old mom, my children and grandchildren. This also would have meant financial ramifications since my husband's company stopped paying for spousal medical benefits after he retired and I am not yet eligible for Medicare. Since I am able to work we can easily swing the group payments.

    Since my surgery I have traveled to Europe 3 times and hiked in the Alps. I have been gainfully employed, lately almost full time, at the profession I love.
    I've been able to help my elderly mom. I am pain free.

    Don't kid yourself. Progressive scoliosis in adulthood is insiduous and gradually can rob one of quality of life. The curving does not stop because it's reached a certain magnitude or you've reached a certain age. With increasing life spans perhaps this is more relevant than in the past.

    I also hate to think of the burden I could have been on my husband and family.
    Just my experience.

    Will see Boachie on Mon for my annual check and thank him again.
    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
    Dec 2006
    Location
    San Diego, CA
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    82
    Thanks, Karen, for your post. I am 59, and have struggled with scoliosis pain since I was 12 1/2. In the past several years my pain has become constant. I recently was referred for an eval by an orthopedic surgeon, who ordered Xrays. We discovered that both my curves have progressed at least 10 degrees, and now I'm scheduled for surgery on April 24. My mother had a fusion when she was 70 because of her progression but it was in many ways too late for her. I had been avoiding the idea of a spinal fusion, since my mother's pain increased afterwards. But she had already lost 5 inches in height and had developed congestive heart failure (I suspect her progression was at least partly responsible.) Her doctor waited too long to refer her for surgery, and it only corrected her curves minimally.

    I've been concerned about my pain not improving after my surgery, but just becoming different. I'm so glad that surgery helped you so much. I'm trying to keep the faith that it'll help me too.

    Thanks,
    Brynn

  6. #6
    Join Date
    Oct 2006
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    I live in Cedar Park, TX which is a suburb of Austin, TX.
    Posts
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    Yeah, Karen!

    Wow, you give me hope for a complete recovery! At 50 I was beginning to think the recovery would not be worth the benefits but if I can have half the gains that you have had, I would be happy! Going for my 12 week check-up next week and I am still in pain and have muscle spasms and burning all day. I hope I progress as well as you did over time.

    Thanks for the positive story.

    Joan

  7. #7
    Join Date
    Dec 2005
    Location
    new jersey
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    850
    When I first decided on surgery & was scared to death at age 46, I read what Karen Ocker had posted & it helped me thru it all! Thks Karen!!
    To Brynn: Try to stay in the best shape you can be in. I really do feel I prepared well by eating a really good diet, exercising etc...It's how we can do our part & the surgeon will do the rest! Ly
    http://lynnebackattack.blogspot.com
    fused T11 to L-5/aug 1st/Dr. Boachie/Kim@HSS-NYC

  8. #8
    Join Date
    Jun 2006
    Location
    Kona, Hawaii
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    Thank you Karen! You give us "older" scoli girls hope! I know that it is rare to be completely pain free like you, but hey, if you can do it, so can I! I'll be just past my 58th when I have my surgery at the end of March, and I can't wait to get to the other side. I feel my curve is progressing as I'm sitting here. I can feel the changes since 8 months ago when I realized the pain this time wasn't going away.
    I was once active like you, but no longer can walk but a little before the pain and I cannot accept that as my future forever! I want to also be there for my grandchildren, husband, etc. Thanks again!
    Berta in Hawaii

  9. #9
    Join Date
    Apr 2005
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    913
    Hi Chris,

    I know what you mean, I live not far from an elderly community and I often see women with large curves and kyphosis. One in particular is the sweetest, and really one of the most beautiful woman I have ever seen in my life. She walks every single day, come rain, shine or snow, and a LOT. She feels good and that means that for some, a large curve doesn't always mean a lot of pain.

    When I made my decision, I had a lot of pain and wanted to take a chance to see if my pain would get better, even if the doctor had no guarantees. That's one of the main factors that comes in deciding for surgery, IMO.
    35 y/old female from Montreal, Canada
    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

  10. #10
    Join Date
    Dec 2006
    Location
    San Diego, CA
    Posts
    82
    Lynne: thanks for your helpful suggestion, to exercise and focus on becoming as healthy as possible before surgery. I read your blogs. What a wonderful idea to share your story with others! It helps me for sure.
    To everyone who is posting on this Forum: You are all wonderful! I've never experienced until now the feeling that I'm not alone as a scoliosis "sufferer", but part of a great big family. Your experiences and knowledge have made me feel so much more prepared for my upcoming surgeries (anterior, then posterior a week later.)
    I spent a few weeks scared to death about the surgeries, then I realized fully how important it is for me to work on my attitude and my health to get me through this as fast and successfully as possible. I am gathering CDs that use guided imagery to prepare people for surgery. I'm working with a hypnotherapist. And I'm starting to exercise more. Although I've been eating a healthy diet for quite some time I'm paying closer attention to this now as well. My pain clinic doctor agrees that the mind-body connection is real, and that preparing oneself for surgery both physically and emotionally (as much as any of us can, it's certainly individual) is important.
    So........I just want to thank you all and to tell you how much you are appreciated.
    Take care,
    Brynn

  11. #11
    Join Date
    Oct 2005
    Location
    Chicago north suburb
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    772
    Hi Chris,

    Re spotting other people with scoliosis, I have to admit it's only rarely that I see somebody else with this disease. For so many years as I've walked behind people, I would find myself studying their backs and wondering if they knew how lucky they were to have beautiful straight spines. I always felt like I was the only one with this deformity. I think we will obviously see much more evidence of bent spines in the elderly because the aging process presents problems for all of us. A perfect example is the late great Pope John Paul II. Here was a man who was a picture of robust health in his youth to mid life. Disease ravaged his body in his latter years twisting his spine into a very noticeable deformity. Nonetheless, he carried on till the end.

    Chris

  12. #12
    Join Date
    Jan 2006
    Location
    near Philadelphia
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    1,260
    Chris -- I also find myself envying others their straight spines...but who knows what WE might have that THEY might envy...you know??

    Brynn -- I was quite interested in your mention of hypnotherapy. May I ask how this is working for you? I would do anything not to feel scared to death.

    On the recommendation of Karen Ocker, I've signed up with a private pilates instructor who works with other scholiosis patients to try to get my core and legs strong before surgery. My knees are not the greatest (I'm 51, with some arthritis), so it'll be interesting to see what I can accomplish.
    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

  13. #13
    Join Date
    Jun 2006
    Location
    Kona, Hawaii
    Posts
    101
    I'm always "checking out" other's nice straight spines and wonder if they even realize what it's like not to have one.....and how could they? Many don't even know what scoliosis is, and the ones that do know some, don't have any idea of the pain, mentally and physically. I share some with friends, but don't want to "whine", so I just end up in silent pain everyday....not wanting to go out much, because if I do, there better be plenty of places to sit, comfortably!

    Sweetness, I can't imagine that sweet elderly lady you talk about that walks daily has no pain! Maybe she is so used to it and keeps it inside? I do find my pain tolerance has gone way up, and realize sometimes when I'm just doing normal small chores, that I hurt and feel exhausted, and I keep going. And then I almost callapse on my couch and want to cry!

    It's interesting how when I first get up in the am, when my pain has not set in yet, (short lived lately), my back acutally feels a little bit straighter, and then as the day goes on, it gives out, like it can't hold my body up any longer. Forget doing anything in the evening, but laying on the couch!
    Berta in Hawaii

  14. #14
    Join Date
    Apr 2005
    Posts
    913
    Quote Originally Posted by berta@aloha.net


    Sweetness, I can't imagine that sweet elderly lady you talk about that walks daily has no pain! Maybe she is so used to it and keeps it inside? I do find my pain tolerance has gone way up, and realize sometimes when I'm just doing normal small chores, that I hurt and feel exhausted, and I keep going. And then I almost callapse on my couch and want to cry!

    I know what you mean, and know many people are this way. I didn't say this lady had no pain, I mentioned she doesn't have a lot, as I see her being very physical and as she has mentioned to me, I believe her. I know many people who can live with scoliosis without it affecting their life MUCH, and I know some who prefer living with a lot of pain instead of having surgery.

    Speaking for myself, having had three surgeries I have opted to try to lessen my pains, as I'm the opposite of not tolerating pain as well as I used to, if I remember how much I had in my teens, and how much I tolerated then. I also didn't want to continue living with a large curve, and knew that wasn't healthy and it actually started to scare me(regarding affecting lungs and heart, among some of the side effects).
    35 y/old female from Montreal, Canada
    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

  15. #15
    Join Date
    May 2005
    Location
    Wheeling, WV
    Posts
    1,105
    I can relate to everything that you all have said. Even as a young adult, I could spot a person with scoli.

    When I was in my early 20's I worked with a women that had it and she knew I did, just as I knew she did.

    Having been in the hospitality business all my life, and having scoli, I always went out of my way to accommodate anyone with any kind of problem. In that sense, having this condition has made me so much more in touch with anyone with any kind of disability, and it's made me a much better person.

    Shari

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