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Thread: Will the disease ever halt?

  1. #1
    Join Date
    Apr 2006
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    227

    Will the disease ever halt?

    I'm having a hard night tonight...I don't let myself do this too often, but will this disease ever stop? At age of 12 I had a Harrington Rod inserted - now, 20+ years later my spine looks as bad/worse than it did at age of 12. My hubby commented the other night (totally not trying to be mean - as he knows how sensitive I am about my appearance) that my back is looking a lot worse in terms of curvature in just the last few months. I've already seen my specialist - he says I can have surgery whenever I give him the go-ahead. The thing is, I don't want to do surgery again. My surgeon was surprised to see that my back wants to curve so bad, it is taking my rod along for the ride My curvature is back up to over 65 degrees. If I have surgery again, does it mean that in another 20 years I'll have to have another, and in another 20 another? I hate to feel sorry for myself - but will the curving ever stop? Does anyone know? SERIOUSLY - do any of you know if this curve will ever stop? (I think my doctor is surprised at how active I am - his fear is that if I don't have the surgery I will end up not being able to be active).

    The vain part of me doesn't want more scars. Apparently they would now have to go in through the front as well as the back. I don't want to risk complications when I'm functioning pretty well.

    I've seen 2 other doctors for second opinions and they want to operate yesterday after seeing my x-rays. I'm so lost.

    Any support, any words of knowledge, any response would be appreciated.

    Feelin a bit down in the dumps.
    Always Smilin' (on the outside at least)

  2. #2
    Join Date
    Sep 2005
    Posts
    877
    There is much better technology out there since the Harrington rods. Hopefully, you will have a new surgery with all the new tecniques and it will be your last surgery. Only the surgeons can give you an idea if this will be your last. But there are a lot of adults on here who can probably advise you about this, as well. Don't get discouraged. Everything will be okay.
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

  3. #3
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291
    No, it doesn't halt just because we think it's time or that it's bad enough.
    My uninstrumented spine lost it's correction and I needed a revision at age 60.

    Here is a forum for persons struggling with the same problem:
    feistyflatbackers

    http://health.groups.yahoo.com/group...guid=135288070
    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

  4. #4
    Join Date
    Apr 2006
    Posts
    227
    Thank you both so much for replying...I try to keep positive about the scoliosis but it's hard sometimes. I wish there was a magic cure out there for scoliosis (and pray that my kids haven't inherited it). I can't imagine, Karen, going through the surgery at age 60. I can't even imagine it now. I think the thought just scares the bejeebies out of me At least there is no rush - when I have a stiff day and my family notices they ask me how my back is - I always jokingly reply that "it's still there". I do tell my mom that she did what was best for me at the time and that I'm thankful that I had 20- years of "normalcy". She got choked up when she went with me to my last appointment this past summer - she hadn't seen an X ray since i was a teen - I kept it together for her - I don't think she or my dad could bare it otherwise. I joked around with her - she replied that my dad hates it when I joke about my back - I told her the only other alternative in my book is to feel sorry for myself and where will that get me? Not far - based on my last 2 evenings.

    THANK YOU BOTH FOR READING AND RESPONDING. Without this board, I felt so alone. My family is SOOO supportive but they don't KNOW what it really means to have scoliosis. They don't know the physical and emotional pain. (I had truly never met anyone else with severe scoliosis before). Whoever set this site up is a godsend. Truly thank you for your words of reassurance. Life could be so much worse and I know that. Self-pity never does do much for a soul other than to release a relief valve from time to time.

    Thanks again.
    Always Smilin' (and doin' so a bit better tonight)

  5. #5
    Join Date
    Aug 2007
    Location
    From seattle WA
    Posts
    55
    It is true, the methods are much better now than they were 20 years ago, even 7 years ago. The harrington rod procedure does not use as many attachment sites, and the rods are slightly flexible. They do not generally use that procedure anymore exactly because of your case and many more out there that have had failed stabilizations.

    I'm going in for surgery next month, and I am getting a little nervous about it, but I know that when I'm pretty well back to my normal life, I'll be so happy that I took the plunge and went for it. Only you can make the decision, but you have to trust yourself to make the right one.
    Rosie
    2001 T-sp 58* L-sp 55*
    2007 T-sp 64* L-sp 67*
    Surgery Dec. 21 2007
    Posterior fusion T3 to L3

  6. #6
    Join Date
    Feb 2004
    Posts
    43

    To Rosie1108

    Rosie,

    I was just wondering why r u having revision surgery is it because of curve progression or pain? I myself am seein a surgeon on the 6th of Dec to see if everything is ok have a 60 degree curve and any movement is obviously bad for my physcial appearance and lately I have noticed that my right shoulder blade sticks out slight futher as the ribs underneath appear to be more humped. I also experience pain while lying flat and have not properly lied down in a bed for nearly 3 years now.

    Amanda

  7. #7
    Join Date
    Apr 2006
    Posts
    227
    Oh my gosh, Amanda! I thought it was just me that couldn't lie flat in bed! It is SOOOO uncomfortable that I manage to lie flat for about 15 minutes before curling up on my side. My right shoulder is now significantly higher than my left. My left shoulder blade is sticking out and my ribs on my left side feel like their squished whenever I sit or lie on my left side(this keeps me on the run Why is it that even after reading everyone's I'm still shocked that I'm not the only one out there???!!!! I looked in the mirror the other day and was shocked at what a freaky mess I'm turning into (sorry for harsh words...but truly that is what I was thinking)

    Rosie, thanks for your kind words about surgeries. All I know is what has been done. It all seems so experimental - like no one can really figure out answers that I worry that if I do the surgery something will go wrong and I'll end up worse than I am now. I will most definitely be thinking and praying for you on the 21st! Please let me know how it goes. It's the people on the board that give me the courage to do what I know I should. I am making an appointment with a specialist in my area after a recommendation from ahberry.

    THANK YOU EVERYONE!

  8. #8
    Join Date
    Feb 2004
    Posts
    43
    Yeah I am the same. I think I am the only one cause all of my friends have straight backs and they look great . I know what u mean about lookin in the mirrior and thinkin what the hell am I turning into.For me I am very panaroid about what doctors say because they put me off having the operation for years never telling me that I had a very stiff curve and would be difficult to correct.Had they given me all the information I would have had the operation years earlier so now I keep a close eye and it and dont take their word as the last word I investiagate myself and ask loads of questions.

    Good luck with your operation and I hope it goes well.,What exactly are u having done?

  9. #9
    Join Date
    Apr 2006
    Posts
    227
    Right now I'm not having anything done...I'm too chicken. I've seen 2 specialists...the first said he wanted to fuse my entire spine from neck down (and that was on my first visit! no hello how are you My original specialist (from when I was a child) has suggested 2 more rods to be inserted in addition to the one I have - we didn't go into a lot of detail as I really wasn't ready to hear that - I think I was hoping either for an easy fix or for them to say I'm ok (We can all dream a little can't we?) So, I have a lot of thinking to do.

    May I ask how old you are Amanda - I know you said you would have done it earlier had you known what you know now. I know I better not wait too long but I'm so nervous. I know it'll get harder the older I get. I am going to try to see one more specialist by the beginning of 2008 and really sit down with my hubby and work and make some decisions. With 3 kids and a full-time career it'll be hard to put my life on "hold"

    Thanks again for the reaffirmation that I'm not completely nuts
    Have a great weekend!
    Always Smilin' (and I have been doin' a lot more of that smilin' this week thanks to you all

  10. #10
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    Question scoliosis surgery "experimental"???

    It all seems so experimental
    always smilin'

    Scoliosis surgery is definitely not "experimental". I had an old form of surgery in 1956 which kept me pretty much OK for over 40 years until lack of hardware caused loss of correction as my fusion weakened with age. Over the years many improvements were made.

    The right surgeon/hospital is the key as well as a good "fit" between patient and doctor. Here research/ and additional opinions help. Talking to other patients of a particular surgeon is a great help.

    Unfortunately, if the curves continue to progress in adulthood, they keep doing so unless stopped by surgery. So far no alternative approach as been shown to permanently stop or improve progression in adults. There are many alternatives which reduce pain but the insidious slow progression marches on 1-3 degrees a year.
    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

  11. #11
    Join Date
    Feb 2004
    Posts
    43
    I am 32. Had my original surgery when I was 20 and then the instrumentation removed when I was 25 and castoplasty at 26 but as I said had I known that I had a very stiff curve I would have had the operation when I was 18 as my back increased almost 20 degress in that 2 years.
    I think u r right to get a number of different opinions before deciding on what to do will let u know what my surgeon says when I see him on the 6th of December and this group is great for getting everybody's else opinions and advice.

  12. #12
    Join Date
    Oct 2004
    Location
    massachusetts
    Posts
    20
    Smilin'

    You also might like to check out the Flatback_Revised forum that I co-moderate. The membership is generally made up of "1st Generation" Harrington Rod patients (mostly in their 40-50's). Like you, they are now dealing with and facing another huge spine surgery (somehwhat unexpectedly) later in life. Most of us have (or had) flatback and a few are dealing with curve progression as well.

    http://health.groups.yahoo.com/group/Flatback_Revised/

    Take Care, Cam

  13. #13
    Join Date
    Apr 2006
    Posts
    227
    Thanks Cammaltby...I have tried to go to the flatbacks site a couple of times but had a hard time maneuvering around the site (I'm a little less than tech savvy)...it sounds like I need to try again. I am a harrington rod (1982) - so not sure that's "first generation"

    Thanks again for everyone's support. Love to hear how things go for you Amanda.

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