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Thread: several concerns flat back syndrome & xrays

  1. #1
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    Apr 2004
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    several concerns flat back syndrome & xrays

    Forgive the long post, but I thought it necessary to inform you of my past surgical experience(s). Before asking my questions.

    The time was 1994 - I'm a farmboy, live in the country and have a farmboy build (stocky, barrel chested 5' 9" at the time). I never played sports in school or did squats in any of my workout routines because I always had trouble with my back. Of course doctors and everyone else blamed it on me being a big kid (240 to 250 at the time). At this point in my life I just wanted to get in better shape.

    Around the start of my senior year in HS I was really starting to drop weight and get in shape. My plans were to join the military after graduation so according to them I needed to drop down to 200lbs... I started noticing my back hurting more and more. To the point where I could only stand on my feet for no more than 10 to 15 mins and my back would just start to ACHE.

    I did a good amount of cardio, as much as I could tolerate (pain wise) and dropped to 215. After constant complaints of my pain and downing aspirin constantly our family physician decided I should see an orthopedic doctor. After that appointment my life changed forever.

    I was diagnosed with scoliosis. I nearly passed out when I saw the x-rays. My curve was somewhere between 50 and 60 degrees (I forget exactly now). From just below the middle of my back to between my shoulder blades my spine probably kicked out to the left more than 4 - 5".

    Being 17 at the time I was led to believe (by doctors) it was too late for conventional methods of cure (traction or braces). Their excuse, I was pretty much done growing I had to have surgery.

    So the day after my HS graduation I was scheduled for a full back surgery to correct my scoliosis (1994). It was by far the most grueling thing I've ever gone through. The doctors and nurses wouldn't explain anything about the procedure. No one would explain ANYTHING about the procedure, recovery time, you name it! The whole thing had my family and me in the dark wondering and worrying.

    After spending 10hrs under the knife, 7 days in the hospital, and about 300 stitches later I was home. Much to my surprise I was just over 2” taller afterward (now 5' 11").

    I wasn't in a brace of any kind despite what my mom could find / read about the procedure. I was barely managing getting in and out of a seated position. Well two weeks after the surgery I was brushing my teeth and leaned forward enough to spit without getting it all over myself and just felt CRACK - CRACK - CRACK from my hips to my neck. I was instantly paralyzed with pain and fear. I couldn’t move my right leg without pain shooting up my back and into my neck. It took over two weeks to get back into the hospital (we heard excuse after excuse why so and so doctor wasn’t in, etc. etc.) I had to urinate in a jug because getting out of bed wasn’t worth the pain involved in getting up.

    My mom had to tie a large mixing spoon to the headboard, which I used to tap on, because it hurt too much to yell for her if I needed something in the middle of the night.

    Anyhow, I had a 2nd surgery because what happened was the rods broke loose from my lower spine. If I leaned forward at all you could see them pressing my skin out! So as you could imagine having already known what I had to go through for the first surgery, to now endure that all over again. The 2nd surgery wasn’t as time consuming but what the surgeon did was wire tie the rods to my lower spine. So now my x-rays will show wire wrapped around the rods and my spine. The rods used in the procedure appeared (by examining x-rays) straight with hooks of sorts. This time they opted for a brace. They flew some guy in from PA, he measured me, and the next day they had a 2 piece (front / back) plastic cast form fitted for me which was held together with velcro straps. I do have to say it was VERY comfortable.

    I already had my senior party planned so I came home from the hospital the day of my party (freshly off morphine).

    Barely being able to dress myself, being a prisoner at home basically…afraid to drive that if something were to happen I’d have to do it all over again. 12 months later I started driving again and managed to get a job.

    Nearly 4 years after the surgery I was a svelte 260. I was in the best shape of my life. Then I started having trouble again…I started getting this fire like pain right between my shoulder blade and spine. It was unbearable. I ended up taking prescription steroids for several months to get rid of it. The cause of the pain was unknown…I figure it had something to due with them having to reattach those muscles after my surgery.

    Skip ahead a few years:

    My back doesn’t trouble me as it did pre-op, but my number one problem is I no longer have a “small” in my back. I know it sounds weird, but my back is completely straight, it does not curve inward above the butt. So it feels as if I’m constantly holding something out in front of me or as if partially bent over all the time.

    I never really noticed it until about two years ago. I honestly feel it's gotten worse. Back in '94 during my first surgery the Internet wasn't as profound as it is now. So just spur of the moment I decided to do some research...especially thinking I may have fallen victim of malpractice.

    Now I'm finding out there IS such a thing that describes my current condition...Flat Back Syndrome!

    I was feeling great, but now I feel as if my health is diminishing. I still workout but everyday chores especially if I’m on my feet a long while will totally wipe me out. I'll be aching. I'm not too fond of the idea to undergo another surgery especially (from what I've read) the pros may not out weigh the cons.

    So I’m wondering if there are any other alternatives?

    Secondly, after reading up more on x-ray / radiation exposure the same hospital where I underwent my surgery, must have taken over 40 x-rays without taking any of the precautions / measures I've read here (rare earth screens, facing away from the machine, etc.)

    I apologize if I sound like a basket case, but this really bothers me. Having to see my mother endure severe cancer treatment and reading statistics like "You're 110% more likely to have cancer if you exceed X amount of radiation exposure" has be shook up.

    Should I be concerned or am I just being paranoid?

    In all honesty I feel lied to, misled, and treated as a guinea pig.

    Sincerely,
    Jason
    Last edited by JPL; 04-19-2004 at 12:49 PM.

  2. #2
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    Sep 2003
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    Northern California
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    Hi Jason...

    Have you not been to a scoliosis specialist in recent years? I'd recommend that you find someone who has a lot of experience treating patients with prior scoliosis fusions. You may need more surgery, but wouldn't you rather have the surgery and be out of pain then not have the surgery and never feel better than you do right now?

    Since you can't change the amount of x-ray exposure that you had in the past, worrying about it probably will only have a detremental effect. And actually, 40 x-rays actually isn't very much in terms of scoliosis. Kids who were diagnosed with scoliosis at a very young age, routinely had 8+ x-rays each year for many years. Today, x-ray techs should use gonad shields to minimize the effects.

    In response to your comment that "I was led to believe (by doctors) it was too late for conventional methods of cure", research shows that curves greater than 40 degrees are not helped by bracing.

    If you post your geographical area, people here can probably give you recommendations for scoliosis doctors who specialize in treating patients with prior fusions.

    Good luck!

    Regards,
    Linda

  3. #3
    Join Date
    Apr 2004
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    4
    Thanks for the reply.

    I live in South Eastern Michigan.

    At the time we were led to believe I was treated by a "specialist". I forget the doctors name however, I do know the procedure was done at Children's Hospital in the metro Detroit area.

    I won't bore you with details, but both my folks and I were confused why I'd be treated there being a young adult. It basically turned into a catosprophe which I can only describe as hell on earth and will never forget for as long as I live.

    Your help / suggestions are greatly appreciated.

    -Jason

    p.s.
    Oh I just thought of something. Do you believe this may be considered "elective" surgury? I'm wondering if my insurance will cover it or if I'll be elligible for short / long term disability from work while I'm recovering?
    Last edited by JPL; 04-19-2004 at 01:28 PM.

  4. #4
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    Sep 2003
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    Northern California
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    Hi...

    I'm sorry that your surgery experience was so horrid. I think most kids don't have such a hard time. Your experience may make it mentally difficult for you to undergo additional spine surgery.

    Almost all scoliosis surgery would be considered elective. However, I've never heard of an insurance company denying the claim. Short-term disability varies by state, but I'm guessing that you'll be covered during your recovery.

    I haven't received confirmation of this, but I suspect that Dr. David Montgomery in Royal Oaks has a lot of experience in treating patients with prior scoliosis fusions. He might be a good place to start.

    I'd like to recommend that you read a new book "Scoliosis Surgery The Definitive Patient Reference" by Dave Wolpert. It should help you formulate the right questions to ask. It will also help you understand what you'll go through if you decide on having surgery. You can buy the book on this website, or directly from the author at http://www.curvedspine.com.

    Regards,
    Linda

  5. #5
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    Apr 2004
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    Linda, thank you again for the information. I will most certainly take your advice and give that book a once over. I've also noted your Doctor recommendation.

    Jason

  6. #6
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    Sep 2003
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    Northern California
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    Hi Jason...

    Just for the record, I'm actually not recommending Dr. Montgomery, since I don't know him or any of his patients. I do know, however, that he did a spine fellowship in Minnesota, which is often an indicator of excellent training.

    Good luck with your search. I hope that you find relief from your pain.

    Regards,
    Linda

  7. #7
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    Apr 2004
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    Gotcha.

  8. #8
    Join Date
    Apr 2005
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    8
    JPL-
    I can't tell you how many xrays I've had. I'm 35 and was diagnosed with scoliosis when I was in 5th grade. I wore a Milwaukee brace for 3 years, then had two herrington rod surgeries followed by casts for the trunk on my body. I'm sure xray technology is alot better now when it was 20 years ago when I had a zillion xrays. I've recently been diagnosed with flat back syndrome and looking for alternative methods to avoid surgery. I've tried physical therapy. It does help some but what the PT was doing (ie: stretching my legs/back) could lead to a weaker back in the future. I'm not real big on taking prescriptions everyday. I do lean forward some but I'm not sure it's that noticable to strangers. I'm at a crossroads myself looking for alternative methods.
    Mindy

  9. #9
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    Apr 2005
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    10

    Unhappy

    Hi I live in Pensacola Florida and I've posted to a few threads with my own knowledge. I'm a little concerned about this "flat-back syndrome" can you explain what it is???
    Here's a short description of me...I was diagnosed in 1993 for crippling scoliosis I had the rare "S" curve and was almost at a 90 degree angle (87 I believe) anyway, they fused a steel rod on 3/4 of my spine and 4 compression screws, also I had my left rib taken out and fused to my rod because it was overlapping my hipbone. It was an 8 hr surgery and I was only 14. I was in the hospital for 20 days because they punctured my diaphram and it collapsed my lung which is still collapsed partially. I am now almost 26 and have 2 children, unfortunately I had to have both of them completely natural and I only had pain when the weather changed or my normal spasms until I had my children now I'm pretty much in pain all the time...I just deal with it I've been dealing with it for 11 yrs because my mom wouldn't give me pain medicine after I came home. I take Tylenol every once in a while if my spasms get bad enough, it puts me to sleep.
    I just want to make sure everything is ok...I haven't been to a doctor for scoliosis since 1998 but I think something else might be wrong...a doctor and a radiologist said I still have a pretty bad curve and it looks like the bone may be deteriorating. Is this what flat back syndrome is??? Any information will help, maybe even a good doctor around here to talk with...
    Thank you, Kristie
    Last edited by kmhane; 04-28-2005 at 12:47 PM.

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