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Thread: Hello, I'm new.

  1. #1
    Join Date
    Jun 2005
    Location
    Austin, TX
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    96

    Hello, I'm new.

    Hello and thank you to everyone for this wonderful message board. I have stumbled upon this in my web searches for scoliosis care and am amazed by how similar what I have gone through is to what I have read.
    I was in a brace for a year at age 14 and had surgery at age 15 (2 harrington rods from right below neck to L4 or 5...not really sure). I am 29 now.
    The reason I have been looking up info about scoliosis is that a year after my surgery I was "fully released" from my doctor's care and I have not been checked since. Last week I decided to go to a chiropractor and the first thing she had me do was take x-rays. They seemed pretty normal to me, but I have discontinued chiropractic care and plan to see a scoliosis specialist I have found here in town.
    I am really impressed as to how much you all know about your backs, and am feeling like I have neglected mine. I find it odd that I have not been having regular check ups on it, and was curious to how much most of ya'll get your backs check?
    I already appreciate all of the information I have found here...Thanks!!!

  2. #2
    Join Date
    Apr 2005
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    92

    Wink

    Regarding care- I was in a Milwaukee brace when I was a teen-ager. My parents and I were told there would be no change in my curveature.
    When I decided to start a family I went back and was told should only have 1-2 children. I did not go back again until I was almost 40 after two children and I had noticed some changes. Then I started returning every year and a half to monitor. Just a couple years ago I noticed significant lower back pain so pt was prescribed. It really along w/ some home exercises seemed to help.
    In January after cleaning floor tile- I could barely move- extreme pain! It did lessen by the end of the first day but still stayed with me. PT was prescribed but did not seem to help in fact seemed to make it worse. Now I'm scheduled for a MRI to determine if there's nerve damage. According to the dr it will decide how much longer before the BIG and dreaded surgery.
    So I would have to say pain has been the main factor in when I scheduled dr appt. so don't feel like you've neglected your back. Awareness is the main thing- that you learn how to take care and manage it.

  3. #3
    Join Date
    Mar 2005
    Location
    NJ across from NYC
    Posts
    329
    Rachael, When I had my surgery in 1981, after my cast was removed that November, I went back for a six month checkup and that was it. I never was told to follow-up. In 1997 my back started up again and only then did I second quess myself thinking I should have been checked from time to time but I was never told to. I thought my back from safe from everything since I had the Harrington Rod, etc. That is certainly not the case! So you are not alone. Good luck. Lynn
    1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
    2000 Partial Rod Removal
    2001 Right Scapular Resection
    12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
    06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,793
    Hi Rachel...

    I'm not a medical professional, but based on what I read from other patients, I'd recommend that you be seen by a scoliosis specialist every 5-10 years unless you start having more pain or if something feels like it's changed.

    Regards,
    Linda

  5. #5
    Join Date
    Jun 2005
    Location
    Austin, TX
    Posts
    96
    Thanks for your replies. I have scheduled an appt. for Friday to have everything checked over with a scoliosis specialist. The nurse I spoke with told me she has several patients that tell her "I had rods put in 20 years ago and have never had them checked..." and they do those check ups frequently, so it made me feel better. I just feel weird making an appt when I'm not in a lot of pain. I've had mild pain ever since the surgery and I'm so used to it, it seems normal, but I think it is worth it to have a check up every year or so, just to make sure nothing out of the ordinary is going on back there...with the exception of all the out of the ordinary things that are alreday going on!!!
    I have a question...you guys that post your x-rays...do you download those, or do you have your own set of x-rays(I can't imagine scanning them in?), or how are you posting those? I have one set of x-rays from `91 that I was supposed to give to my pediatrician, but that was at the age when I stopped going to a pediatrician, so I just ended up with them accidentally. But I wasn't sure if I have the right to keep my latest ones, or who the "belonged" to.

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,793
    Hi Rachel...

    I think many of us take pictures of our x-rays when they're up on the light box at the doctor's office. If you get copies of your x-rays, you can put them up over a white sheet in a sunny window to take pictures.

    I personally think that seeing a scoliosis specialist every year or two if you're not having any problem is exposing yourself to too much radiation for no good reason. I'll be curious about what your doctor recommends.

    Regards,
    Linda

  7. #7
    Join Date
    Apr 2005
    Posts
    913
    Rachael...

    Welcome aboard Speaking for myself, after having my two surgeries in '97 and '99, the ortho told me that he was done with me and no need to go back unless I had pain. A few years later, I had a lot of neck problems and so I wanted to see a new ortho since mine had not only left town but I also wanted a new ortho that had more bedside manners. He told me that after having the surgery, all scoliosis patients should get check ups every two years to check if the hardware is still in place, and discuss any changes, if there are any, but that's his opinion, every ortho could differ of course. Not all chnage in harware shows up on X ray anyway, as I have a broken rod and it took a year to show up.

    As for X rays, I keep all mine with me. I decided this after I changed orthos and also keep the ones from before the surgeries, from adult age though not adolescence.
    Last edited by sweetness514; 06-20-2005 at 02:07 PM.

  8. #8
    Join Date
    Jun 2005
    Location
    Austin, TX
    Posts
    96
    Yea, every 2 years or so seems reasonable, and I wouldn't take x-rays unless we thought something was wrong. It just seemed weird that I was released at 15 and I had barely begun puberty and I grew until I was 19. I gained 3 inches from the surgery and grew another 3 the next year. Nobody has checked since I have finished growing and "settled" into adulthood!
    I talked to my hospital this afternoon and I am getting all of my records, plus they may be able to put my x-rays on a cd for me. I also had the options of having a copy of the film, but I think if they can do cd's that would be more practical.
    We'll see!
    Harrington Rods in 1991 at age 15
    Surgery at Scottish Rite in Dallas, TX

    Fused from T-4 to L-3

  9. #9
    Join Date
    Apr 2005
    Posts
    913
    That CD thing sounds cool, never heard of that before.

    I was operated on at 26, but I was supposed to at 18, although backed out since I barely had any pain. They discovered I had scoliosis at 12, and so all the orthos I consulted told me that it is best to wait to get the surgery when most of the growing is done, at 18 and up. But my guess is it depends on what type of scoliosis a person has, if it started before the teenage years and is more problematic.

  10. #10
    Join Date
    Jun 2005
    Location
    Austin, TX
    Posts
    96
    Just wanted to post an update...
    I had my first check up since about 92 or 93 on Friday, and everything went well. The doctor said the surgeon who did my surgery did a really good job. We discussed a few things. My curve has progressed since the surgery due to a growth spurt I hit that year...I don't know the numbers, but I estimate the 18 degree curve is probably around 25-30 degrees now. Doc said that is normal if I grew after surgery, which I did. My hump is due to my rib cage being twisted. My surgery did not fix this because they used hooks, but the way they do it at Scottish Rite now is supposedly better.
    He also suggested I do pilates for strength rather that yoga because of the chance that yoga puts a lot of strain on my unfused vertebrae. He also says if I work on strengthening my core it can only help me have good support.
    That was about it. He recommended I get checked every 5-10 years unless I have some trouble.
    Unfortunately my x-rays are too old to have them put on cd, but I am getting copies of all my old paper work and a few x-rays from the hospital.
    guess that's it. If anyone wants more info on my type of surgery, the Scottish Rite Hospital, or being active with rods, feel free to email me at:
    rachaelmwillis@sbcglobal.net
    Harrington Rods in 1991 at age 15
    Surgery at Scottish Rite in Dallas, TX

    Fused from T-4 to L-3

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