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Thread: Curve progression after harrington

  1. #1
    Join Date
    Apr 2008
    Posts
    10

    Red face Curve progression after harrington

    Hello All

    I'm a new member and frankly feel very foolish having never researched the pain I've been in for many, many years.

    My scoliosis was detected by "accident" (family doctor was on vaction and I wasn't well). My surgeon decided to operate when I was 12 (1974) and by all accounts the procedure was a "success". Spinal fusion, harrington rods (1 either side) and bone graphs. After 3-months in a body cast in hospital I was sent home, significantly taller and with a brace. I healed quickly and my 9-12 months of brace wearing was reduced to less than 3 months. My only restriction was gymnastics (Dr equated to rolling a "flat tire"). Lots of pain during puberty but I still tried most things, skiing, hockey, baseball, parasailing and lots of dancing!!. I guess my family's motto "suck it up princess" helped me enjoy my teen years.

    Once I hit 18 the pain lessened - at least for a while, but never completely disappeard. At 28 I had my son. No new issues during my pregnancy, just what I'd always been dealing with. Within a year I was told I would need more surgery, but because of the danger at that time it would be best to delay it as long as possible so technology could improve. That was 1991.

    In 1995 I was transferred to another Province (yes I'm Canadian), the pain continued with increasing intensity, however I could never get a referral to see a surgeon - they just kept pushing "drugs". My have been to be stoned, or to be in pain. None acknowledged that my issues might be beyond their payscale - until this week.

    I went to a new clinic, they took xrays (first since '91) and I was shocked. We've all seen our xrays over the years. My last set showed 2 rods with the spine in-between (and the rods were parallel) - NOT ANYMORE. First of all the shorter rod is now on an angle, but what's the most frightening is that the spine is curved. I didn't think that was possible. I know I'm not a doctor but straight is straight, and curved isn't.

    My question is have any of you had this happen, and if so, what (if anything) did they do to help eleviate the pain and progression. I now finally have a referral to "the best guy in the Province" - the waiting list is at least 12 months, however the clinic were going to request it to be expedited.

  2. #2
    Join Date
    Jan 2008
    Location
    United States
    Posts
    127

    Wow!

    wow i'm SO sry 4 u! idk, but it seems like ur in a mess! i'll definitely b prayin 4 u! just trust God and everything will b ok! good luck, and God bless u! TTYL!
    Valerie

    Age: 18
    Hi, my name is Valerie, but you can call me Val or V.
    I wore a Boston Brace from 2007-2010
    My curves were 30 and 31
    I now have only a single curve which stands at 35 degrees.
    I owe all of my blessings to The Lord!
    I am very thankful with where my spine is at right now.
    I want to meet some new people on this forum!
    Don't be shy...
    Feel free to message me if you would like to chat!

  3. #3
    Join Date
    Aug 2007
    Location
    Auckland, New Zealand
    Posts
    185
    I had a slightly different situation, I had curve progression after a newer surgery. The junction at the top of my rods and spine had a big angle, due to curve progression. I ended up having a revision, which was not what I wanted to be doing at my young age! But, 5 months out, I am feeling really good and know I did the right thing. I too had been in increasing amounts of pain, and tried everything I could to manage it in terms of meds, pilates, swimming, accupuncture etc. I did really well keeping the pain somewhat manageable, but I did need surgery. What are they saying about your curve? Do you need a revision? 12 months is a long time to wait to see a specialist, you should try and see another surgeon as well, just because when you are dealing with a revision, you really want a second opinion.
    1994 curve at age 13, 70 degrees, untreated
    2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
    2007 26 degrees junctional scoliosis
    Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
    msandham.blogspot.com

  4. #4
    Join Date
    Apr 2008
    Posts
    10
    NZ Girl
    What did they do with your revision surgery and how long was your recovery. I agree 12 months is way too long, but by Canadian standards it's actually quick. There is an extreme shortage of surgeons in general, and even less who do backs - at one point there were only 3 or 4 who did backs in Alberta. This was part of my frustration, as I knew before I moved that things were getting worse, but I didn't know how difficult it would be to get a referral.

  5. #5
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    370
    Hi Sunny:

    Sorry to hear about your back.

    A year sounds like way too long to wait to be seen....

    I'd write to your local MPP if you can't get an appointment sooner than that.

    Ruth in Ottawa
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  6. #6
    Join Date
    Aug 2007
    Location
    Auckland, New Zealand
    Posts
    185
    Hi sorry for the late reply! As you may be able to tell from my name, I'm based in New Zealand... there isn't technically a shortage of spinal surgeons, but there is in terms of skilled scoliosis surgeons. It's the low base-rate phenomenon, where you have a small population, so the small number of people affected means the surgeons don't get heaps of exposure. My surgeon was probably the best avaliable for scoliosis, and he had done hundreds of scoli surgerys, BUT... I didn't dare ask if he had done many revisions, because I knew the answer wouldn't be loads! But, there were no other options except paying hundreds of thousands to go overseas and have it done. I am happy with my decision to stay here and have it done.

    For my revision surgery, as my original surgery was anterior, they did a posterior approach and fused and rodded above and below the existing instrumentation. I am almost 6 months post-op now, and feel about 80% of where I would like to be. I think about 5 months was a turning point for me, as once you hit about 3 months it slows down. You just realise gradually that you are doing better... and staying up longer, getting less sore, and doing more exercise etc. Yesterday I swam 500m with fins, and felt a bit sore last night but 100% ok today! That is a milestone! I'm just about to start a new thread for how I'm going, so have a look. I tend to post in the main section because there are so few revision folk!
    1994 curve at age 13, 70 degrees, untreated
    2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
    2007 26 degrees junctional scoliosis
    Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
    msandham.blogspot.com

  7. #7
    Join Date
    Apr 2006
    Posts
    227
    Sunny45 -
    I thought I was reading my biography...such similar lives...I was the active never slow down girl too. I had surgery in 1984...and over the last few years have had A LOT of pain (especially in winter! - probably some arthritis set in - at age 37 - not fun Anyway, I finally went in for X-rays and almost fell over - I looked like a total snake - I didn't know a spine could literally curve like that. I saw 3 different specialists - 2 of whom were willing to operate tomorrow if I gave consent (I thought that was a bit rash). My original surgeon said that the amount of curvature I've had since surgery is rare but operable - I just have to give him the word. So, I've been toying with saying "yes" for 3 years but I'm TERRIFIED! I've been through the surgery before and remember every single detail! (I believe mine was also considered a success - with rapid recovery) but at this age - I'm not so sure I'm strong enough physically or emotionally. So, I keep putting it off. I know I'm prolonging the inevitable.

    Sunny, I would be sure to be with a surgeon you're comfortable with. While curvature isn't good, at our ages I don't think (and I'm sure others may correct me) but I really don't think that surgery is as life and death as when you are an adolescent. I'm not sure the curve progresses as rapidly. I have monitored my back for 3 years now and there has not been a lot of movement -although this last year I am noticing a LOT of crookedness so I won't be shocked if it's progressed a lot recently (my hubby is a bit shocked by how tilted I am). I would just make sure to at least keep it X-rayed regularly until you can meet with a surgeon you're comfortable with.

    You are definitely NOT alone in this - if you do a search on Harrington Rod on this board - you will see (unfortunately) that a lot of us are in your boat! Hang tough - I wish you the best.

    Always Smilin (At least on the outside)

  8. #8
    Join Date
    Sep 2007
    Location
    Geneseo, NY
    Posts
    133

    peaked rod

    I was told recently by a scoliosis specialist that my rod has "peaked", causing me to lose 2" of height due to the increased curve. I'm not in much pain, just have difficulty walking. The nerve supply to my quadriceps seems to be irritated, limiting my walking ability. Techniques are better today, and this doesn't happen with newer fusions, I was told.
    1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

  9. #9
    Join Date
    May 2008
    Posts
    169
    Oh my goodness. I have never heard of a peaked rod. Honestly I cant believe what you guys are going through, I mean I am in pain, but curved spines after surgery, and all the other problems.

    My heart goes out to all of you, I am honestly shocked, and saddened for all of you.

    Lorraine. xx
    Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
    Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

  10. #10
    Join Date
    Mar 2008
    Posts
    5

    Talking curve

    i'm 28 and on O2 and my doc. says to live out my life because surery to to dangerus. my curve is 100 degree. so if you have to go or see someone els to find someone able(hightly skilled) and willing to help you do it. I had my full fuse. in 1992 at 75% after surgery. Now om on O2 so I pray that you get the help you need to live A full life, pain free.

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