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Thread: I'm new, college student contemplating surgery :/

  1. #16
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    Having Scoliosis fusion surgery is a life-altering thing, as metal rods are placed in your spine and it will never bend or move in the same way again. I had the surgery when I was 21 for a lot of the same reasons you state, but unfortunately, this is not an operation you want to do for cosmetic reasons. If you want to be honestly informed about it, please read the "surgery should be last resort" link I started.

    Best wishes,

  2. #17
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    Marissa,

    A lot of people with good outcomes move on with their lives and don't post on any forum. If you draw your conclusion from reading online only, you may get a distorted picture. This forum is a great source of information, but please remember that it doesn't represent the whole population because a big share of happy patients with good outcomes is living their lives and we never hear from them.

    This doesn't change the fact that scoliosis surgery should not be taken for cosmetic reasons only and you should be aware of all the risks. I agree that there is no long term data on success of this surgery, but I believe it is reasonable to expect that spinal fusion with instrumentation may need a revision later in life. Knee and hip replacement patients are told that they will need another surgery in 15-20 years (or whatever number it is). I don't think that the fact that there might be another surgery down the road should be a shock to spinal fusion patients.

  3. #18
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    Quote Originally Posted by Irina View Post
    Marissa,

    A lot of people with good outcomes move on with their lives and don't post on any forum. If you draw your conclusion from reading online only, you may get a distorted picture. This forum is a great source of information, but please remember that it doesn't represent the whole population because a big share of happy patients with good outcomes is living their lives and we never hear from them.

    This doesn't change the fact that scoliosis surgery should not be taken for cosmetic reasons only and you should be aware of all the risks. I agree that there is no long term data on success of this surgery, but I believe it is reasonable to expect that spinal fusion with instrumentation may need a revision later in life. Knee and hip replacement patients are told that they will need another surgery in 15-20 years (or whatever number it is). I don't think that the fact that there might be another surgery down the road should be a shock to spinal fusion patients.
    Those points are excellent.

    By the way, no scoliosis fusion surgery is done for purely cosmetic reasons because insurance would never pay for cosmetic surgery and especially not extremely expensive cosmetic surgery.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #19
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    Quote Originally Posted by Irina View Post
    Marissa,

    A lot of people with good outcomes move on with their lives and don't post on any forum. If you draw your conclusion from reading online only, you may get a distorted picture. This forum is a great source of information, but please remember that it doesn't represent the whole population because a big share of happy patients with good outcomes is living their lives and we never hear from them.

    This doesn't change the fact that scoliosis surgery should not be taken for cosmetic reasons only and you should be aware of all the risks. I agree that there is no long term data on success of this surgery, but I believe it is reasonable to expect that spinal fusion with instrumentation may need a revision later in life. Knee and hip replacement patients are told that they will need another surgery in 15-20 years (or whatever number it is). I don't think that the fact that there might be another surgery down the road should be a shock to spinal fusion patients.


    Well said Irina!

    Tamena

  5. #20
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    I don't have anything to add to the good points that everyone else has made, but just wanted to welcome you to the forum.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  6. #21
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    Thank you to everyone that replied, sorry its taken me so long to go on but I was really busy with the holidays and whatnot.

    I understand everyone's points, I have an appointment on the 7th to discuss surgery & you guys have helped me a lot with some of the questions I want to ask my surgeon. As for the depression thing, I've always been a heavy sleeper, so I'm not sure if that has anything to do with it. I also suffered from an eating disorder that started a few years after my bracing started. So i've always had body image issues. I just hate scoliosis and wish the surgery would make everything go away. Also, my neck pain has stopped completely! My mom bought me a memory foam pillow and it has helped so much. I spent the night at my friends last night and slept with a regular pillow, and I woke up with the same neck pain as before. So I definitely think the new pillow helped.


    Anyways, thanks for everyone's feedback & I'll keep everyone posted on my decision.

    Also, has anyone done the Schroth treatment that was mentioned? And I'm still kind of confused on overall flexibility, can you guys bend your back at all?
    Last edited by turfxo; 01-02-2013 at 01:47 AM.
    Marissa Renee. 18. College. Norcal.
    Minnesota braced 2006-2010.
    Thoracic 28* Lumbar 43*

  7. #22
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    Quote Originally Posted by turfxo View Post
    Also, has anyone done the Schroth treatment that was mentioned?
    Literally tens of thousands of people have tried Schroth. It was invented by a lay person in Germany over 90 years ago. Today in Germany, it is still a fringe treatment and surgeries go on as usual. There is no evidence Schroth has prevented a single fusion.

    Now as PT, it probably is effective for some pain as opposed to stopping progression in adults. But any good PT would address pain, you don't need to pop the exorbitant amounts Schroth purveyors charge.

    If anyone challenges any of these statements, ask them for evidence. Also ask for a money back guarantee.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  8. #23
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    I just wanted to highlight what you said about neck pain because there are a few here with neck pain.

    "My mom bought me a memory foam pillow and it has helped so much. I spent the night at my friends last night and slept with a regular pillow, and I woke up with the same neck pain as before. So I definitely think the new pillow helped."

    If this is something that could so easily help others, it deserves to be reiterated!
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  9. #24
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    Marissa,

    You won't be able to bend the part of your back that is fused AT ALL. It becomes one solid bone like the bone in your leg. However, whether you will have flexibility in your back depends a lot on what levels will be fused. If you are fused T10-L2, for instance, you will probably still have a lot of flexibility. If you are fused T2-S1, you will have hardly any in your back, except your neck. I would guess that being young, you won't be fused to the sacrum, so you will retain a lot of flexibility. But you should absolutely ask your doctor about that. I have a teenage acquaintance who was able to do flips in the swimming pool the same summer she had surgery. I, on the other hand, can't bend to get clothes in and out of the washer. So, bottom line, it varies a lot, depending on how many and which levels are fused.

    Best,
    Evelyn
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

  10. #25
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    Quote Originally Posted by turfxo View Post
    Also, has anyone done the Schroth treatment that was mentioned? And I'm still kind of confused on overall flexibility, can you guys bend your back at all?
    The balanced advice above from many people who have had surgery is excellent.

    I have a young daughter who's been doing Schroth for 18 months. We don't only do Schroth, but it is an integral part. Several adults with whom I share what we do have are also experiencing success, especially with aspects of Schroth. What can be achieved quickly is relief from the muscular pain caused by imbalanced posture. For example, by working the asymmetrically contracted areas (top left, bottom right quadrants in a right thoracic, left lumbar pattern), the opposing diagonal muscles are relieved.

    A caution: I agree with Sharon (Pooka) that the purveyors of a DIFFERENT METHOD, Nu Power Schroth, are unlikely in my opinion to reduce anything except your bank balance. I refer to the methods of KATERINA SCHROTH.

    I looked at your x-ray. Pelvic adjustment, a la Katernina Schroth, can unload your lower curve, bring your lumbar spine towards the mid-line and begin to relieve those loaded muscles on the lower left. With your protruding right hip, your curves are being loaded because of your habitual posture. You might consider buying the Katernia Schroth book and teach yourself these basics. Certainly a lot less expensive than the 'clinics'.

    As for stopping your curves progressing and achieving correction, that is achievable. It is not easy to commit and follow through on what can achieve improvement. Some of that is discussed here: http://www.scoliosis.org/forum/showt...race-mentality

    Regards
    Tom
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

  11. #26
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    Marissa, i hope you have a chance to consult with a few different doctors...
    their medical advice is what i suggest you pay closest
    attention to...
    few can be objective when viewing themselves, and for younger women,
    body issues seem more common...
    no one else will view you as harshly as you do.
    believe me, to others, you look fine...but knowing or even believing that
    is often of no help to the individual judging themselves.

    jess

  12. #27
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    Important question for your surgeon on the 7th!!!!

    Quote Originally Posted by turfxo View Post
    Marissa! I just looked at your radiograph and see you have a thoracolumbar curve that ends at L3 based on the measurement.

    Please ask the surgeon about where your fusion would end now versus if you wait. You are not technically in the surgical range so you might be denied surgery now even though waiting might mean eventually losing your entire lumbar.

    Please ask if you spend time trying PT if you will lose the window on only going to L3 (if that is your present window).

    If you get fused now only to L3, you may never need more surgery extending to your pelvis. L3 is sort of a critical level where if the fusion goes below there, you can be in a "countdown to pelvis" as Boachie stated it. That is, it might be a matter of as little as a few years that you need an extension because the last few discs tend to fail when fusions go to L4 and below.

    Also ask if having anterior fusion would save a distal level... maybe your fusion might only extend to L2 in which case you would likely never be in countdown territory.

    If your radiograph was for my daughter, I would be getting an answer to the waiting question and the anterior question yesterday and literally standing on people's desks to get surgery if there was any chance waiting would require a fusion below L3. If the time taken for trying PT puts you in danger of being in a countdown when getting fusion immediately would save you from that then you need to know that from the surgeon. Your curve goes to L3 and time does not seem to be on your side given that.

    Good luck.
    Last edited by Pooka1; 01-04-2013 at 10:58 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  13. #28
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    Quote Originally Posted by Pooka1 View Post
    Please ask if you spend time trying PT if you will lose the window on only going to L3 (if that is your present window).
    These are important considerations, easily accommodated. Surgery, presumably, would take some time to arrange and be done (I do not know that you need or will ever need surgery). You could start specific corrective Katerina Schroth exercise (as opposed to vague and often damaging general PT) tomorrow. What's the waiting time for surgery these days in the USA? A year? Two? Rather than "watch and wait" while curves progress, watch and correct seems wise. Compared to "watch and wait", you've nothing to lose.
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

  14. #29
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    Quote Originally Posted by TAMZTOM View Post
    What's the waiting time for surgery these days in the USA? A year? Two?
    No.

    ETA: Also, I would certainly hope people who are about to drop out of their window get earlier op dates than the few months it might usually be. I have no idea if Marissa is or is not about to drop out of a window. She needs to find that out very quickly in my opinion. Yesterday preferably.
    Last edited by Pooka1; 01-04-2013 at 01:03 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  15. #30
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    Quote Originally Posted by Pooka1 View Post
    No.

    ETA: Also, I would certainly hope people who are about to drop out of their window get earlier op dates than the few months it might usually be. I have no idea if Marissa is or is not about to drop out of a window. She needs to find that out very quickly in my opinion. Yesterday preferably.
    Wow, that's quick! Agree on yesterday. At 43 degrees and with the pelvic misalignment suggesting decompensation (methinks, perhaps, maybe), those asymmetrically supporting muscles can fatigue rapidly leaving the body without much support at all...then progression. Even at a few months out, she could try what I suggested. If she has a large postural element to that main curve, as seems so, focused work for even a few months would lop that off. Again, nothing to lose.
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

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