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Thread: "Scoliosis does not hurt" RANT

  1. #1
    Join Date
    Mar 2004
    Posts
    45

    "Scoliosis does not hurt" RANT

    I have minor Scoliosis, and I read and post on the board only occasionally--usually when I'm having some type of problem, lol.

    I hesitate posting since my curves are much smaller than most of yours on the board. I have problems with my small-degreed curves, so I super sympathize with all of you who have it so much worse than I do! <hugs>

    So, risking sounding like a whiner, here I go!

    My primary curve is 18-19 degrees (depending which dr. you ask), and is in my cervical region. I am short in stature, and you can visibly see (even though my curve is small!) that one of my shoulders is higher than the other. My left arm also hangs shorter than the other arm, and I often need to hem my blouse sleeves 1/2" -3/4" to accommodate it. Same thing with my leg--pants need to be hemmed about 1/2-3/4" shorter for my left leg.

    My range in motion in my neck is limited, and I often get neck strain on that side, and shoulder pain radiating down throughout the shoulder blade, upper arm pain, etc.

    Awhile back, I went to see an orthopedic surgeon who is a Scoliosis specialist. He treated me as though my issues were no big deal, and rx'd some anti-inflammatory meds. He was probably thinking something like, "This lady doesn't have it all that bad--most of my patients are much worse!" Yet if I'm having structural problems, it doesn't really matter how bad I have it compared to the person in the next examining room. My problems are still my problems!

    While doing yoga, I realized that my range of motion problem were getting in the way of executing the stretches properly. I mentioned this to my
    general practicitioner dr., and he recommended that I see a Physical Medicine specialist.

    One of the first things the Physical Med doctor told me during the appointment is, "Scoliosis Doesn't Hurt."

    PLEASE, SOMEONE, ENLIGHTEN ME!!

    That doesn't make any sense to me! If Scoliosis causes a person's muscles to be stretched or tightened in a way that they aren't supposed to be, and then your range of motion is decreased--yet you try to use those muscles in a normal way, then of course it hurts!

    I was so dumbfounded when she said this, that I didn't think to ask her to clarify the statement. There must be something I'm missing!

    She rx'd muscle relaxers and physical therapy. I've been taking the muscle relaxers, but always feel guilty doing so--like maybe I should just tough-it-out since "Scoliosis doesn't hurt". The PT is helping my range of motion. Yes, I know it won't cure Scoliosis, but that's not my goal--my goal is to be able to move my left arm/shoulder close to the way that I can move my right arm/shoulder. But those PT copays are adding up...

    I went for my re-check this week. Even though she phoned me with quick feed-back when my Xrays were received, I was thinking that she'd have them in the app't room and point out things on the Xrays (i.e. arthritis or whatever). She didn't. She asked me a couple questions, asked me to turn my head this way and that, and then flew out the door. She seems friendly enough, but doesn't spend much time during these follow-up visits. (Is that normal/what's to be expected?)

    So, I'm wondering: Why do drs. keep saying that Scoliosis doesn't hurt?

    dsal

    Thanks,
    dsal

  2. #2
    Join Date
    Mar 2005
    Location
    NJ across from NYC
    Posts
    329

    Scoliosis Does Hurt!!!

    Dsal - I completely understand why you are frustrated. I have ALWAYS had pain from scoliosis. I was 12 years old and would cry to my parents that my back hurt. I do not know what my curves were then but when I had my surgery in 1981 it was in the 60's, so it certainly was less than that. I'm guessing since it continued to get worse, it couldn't have been that high at 12, but I could be wrong. I ALWAYS HAD PAIN. It seemed like it was constant. I would lay on the floor when I got home from school to get some relief. The only thing the doctor did was send me to physical therapy, which did nothing. I had the same problems with the pant leg, blouse, etc. I had a lift in my shoe inside and out. I feel the same way, if your spine is curving and pulling your muscles, etc. how can it not hurt. My daughter has scoliosis, which thankfully nothing had to be done except keep an eye on her. She never had pain. You are not alone feeling this way. I ditto your feelings. I hope you find some relief and someone that will be willing to spend time with you at your appointments. That too is very frustrating. 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 - and feeling GREAT! (at 56 years old)

  3. #3
    Join Date
    Mar 2004
    Posts
    45
    Thank you for your kind response, Lynn. Yes, that was one thing I forgot to mention: I also have orthotics, mainly to lift my left foot up a bit.

    I'm glad to hear your surgery worked for you! Yeah! And I'm also pleased to hear that your daughter's Scoliosis is mild, and is causing her no problems so far. Please keep in mind, however, that aches and pains in her neck and back might insidiously creep up due to the muscle tightness that Scoliosis can cause, even though her Scoliosis is mild. My daughter also has slight Scoliosis, and she, too, was on a wait-and-see plan. She's almost 23 now. Her regular orthopedic app'ts stopped when she was 18, but I'm rethinking that now. Maybe she should still go periodically just to make sure her curve isn't sneakily progressing.

    I hope that your daughter will continue doing well! And best wishes to you, too, with this Scoliosis struggle!

    Hugs,
    dsal

  4. #4
    Join Date
    Feb 2007
    Posts
    251
    I also was told scoliosis does not hurt, but I knew better. I want to know how many of these Dr. have scoliosis to be so certain it does not hurt.

    The year before I had the scoliosis surgery, I had to have cervical surgery, when meeting with the surgeon he noticed I was not sitting straight...I told him I have scoliosis he recomended I have it checked, not his speciality. Well I had been seeing Dr.s for 5+years and continuously told I did not want to have surgery as an adult. When my husband and I insisted on seeing a surgeon for the scoliosis we ended up in my cervical surgeons office knowing he did not do this type of surgery. Lucky for us, he did have a complete set of x-rays taken but did not give us a lot of hope. but he was going to a scoliosis conference that weekend and promised to bring my file. Four months later I went back for a follow up appt and he told us he found a surgeon who would see me (still not sure why he didn't call sooner)....we saw the surgeon the following Sunday...the offices were closed which made me nervous, but he explained he had gone over all my x-rays and MRIs and did not want me to wait the 3 months it would take to get in during office hours. He also told us he believes scoliosis can cause pain!!! Maybe Dr.s will start to beleave this as they learn more.
    Patty 45 years old
    Surgery May 23, 2007(43 Birthday)
    Posterior T3- L4
    Pre surgery curves
    T-53degrees
    L-38degrees
    and a severe side shift to the right.
    Post surgery curves
    Less than 10 degrees
    Surgery April, 2006
    C4 - C6

  5. #5
    Join Date
    Mar 2005
    Location
    NJ across from NYC
    Posts
    329

    Daughter's check up?

    Dsal - you bring up a very good point. My daughter will turn 21 in November. She also stopped seeing her ortho at 18, in 2005. I wonder if we should bring our girls for a check up to see if their spines haven't gotten worse. Has anyone in our situation taken their child for a re-check a few years after their last visit? Linda/Karen - do you think it's wise to have them checked? I'm now curious to find out. Thanks Dsal for that thought. Take care, 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 - and feeling GREAT! (at 56 years old)

  6. #6
    Join Date
    Mar 2004
    Posts
    45
    Quote Originally Posted by sccrm08
    he was going to a scoliosis conference that weekend and promised to bring my file. Four months later I went back for a follow up appt and he told us he found a surgeon who would see me (still not sure why he didn't call sooner)....
    What the Heck? He sat on this info for those few months? ARRGGHHHHH!!! Probably so busy that he forgot. Yet having that info from him sooner might have saved you some time and pain. grrrrrrr.

    Quote Originally Posted by sccrm08
    We saw the surgeon the following Sunday...the offices were closed which made me nervous, but he explained he had gone over all my x-rays and MRIs and did not want me to wait the 3 months it would take to get in during office hours. He also told us he believes scoliosis can cause pain!!! Maybe Dr.s will start to beleave this as they learn more.
    Yes! A knowledgeable and compassionate doctor! I'm so glad you found someone who would listen to you, be able to help you, and then act on it! I'm glad this worked out for you!

    I'm still so baffled as to why drs. love to spit out that line, "Scoliosis does not hurt." They shouldn't need to have scoliosis to realize that a misshapen back would hurt. I don't need to get shot with a gun to know ahead of time that it would hurt...

    dsal

  7. #7
    Join Date
    Mar 2004
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    45
    Quote Originally Posted by Jacque's Mom
    Dsal - you bring up a very good point. My daughter will turn 21 in November. She also stopped seeing her ortho at 18, in 2005. I wonder if we should bring our girls for a check up to see if their spines haven't gotten worse. Has anyone in our situation taken their child for a re-check a few years after their last visit? Linda/Karen - do you think it's wise to have them checked? I'm now curious to find out. Thanks Dsal for that thought. Take care, LYNN

    You didn't ask me, but I think it's a good idea. I was reading the forum this afternoon, and read a post from someone who had a curve that didn't need bracing. She was released from her regular ortho app'ts (that monitored her Scoliosis) when she was 18. Then in the next few years, her curves progressed. Of course now I can't find that post to reference. (Maybe you'll be able to find it!) I'll bet that that young lady will recommend that we encourage our daughters to keep having their curves monitored!

    dsal

  8. #8
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,287

    Thumbs up Checking after age 21???

    Lynne, I definitely believe checking you children's back after 21. A search through this forum shows many cases of adult progression after being released from monitoring/bracing.
    This darn scoliosis is so insidious. However, finding no progression would definitely put them and you at ease. After which a regular, every 5 year, check-up has been recommended elsewhere.
    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

  9. #9
    Join Date
    Aug 2006
    Location
    Lawrence, Kansas/ Overland Park, KS
    Posts
    195
    I am 20 and my scoliosis is still getting worse. Not as fast as if I were still growing, but definitely around 3 degrees or so a year. For some reason I have also recently developed a 65 degree kyphosis along with my scoliosis and I am very rotated for the degree of my lateral curve. I am still seeing a doctor. I don't feel comfortable just letting it be. I'd prolly be a good idea to get your daughter's checked just to see if and how much her back is progressing so you have a sense of how long you should be waiting (if at all) to get it checked again so it doesn't get out of control.
    aBbiE
    22 yr old F,KU college student
    Kyphoscoliosis...
    Scoliosis (25T, 23L) diagnosed @ 14 yrs old; curves June 08 were 45T, 32L with 18 degree rotation
    Kyphosis of 65 degrees...
    I am missing a lumbar vertebrae

    Surgery 6/30/2008 with Dr. Lawrence Lenke
    Fused T2-L2


    before/after pics
    all smiles!

  10. #10
    Join Date
    Aug 2007
    Location
    Auckland, New Zealand
    Posts
    185
    As you can see from my numbers below... my curve has progressed, even though I am post surgery, I believe that it would have progressed more if I didn't have the op. I'd suggest keeping regular check ups, it's not cool to try and think that it's fine and then later on see that it has moved. You might only need 5 yearly check ups or something.
    As for the pain thing, I had an excellent and caring doctor say 'I wonder why your scoliosis hurts'. I wasn't upset by that comment because now I know that it's kind of a medical myth that scoliosis doesn't hurt. I downloaded a lecture by Dr Boachie who said 'most people with this have pain' and felt like my experience of pain had been validated. For a long time I thought that it must be all in my head, and if I wasn't such a woos it wouldn't hurt. My reason for this was I didn't notice back pain until I got diagnosed. Maybe I had just ignored it, but at 12 realising this was a big deal.
    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

  11. #11
    Join Date
    Apr 2006
    Posts
    109
    I have to say I have had the WORST experience with orthopedic docs. They told me the same thing. My curves are "moderate" at 32/30 and I am in pain all day, every day. If I stand for long periods of time the pain becomes severe. Scoliosis does hurt. I sometimes feel like telling the doc "YOU don't have scoliosis, I DO and I am telling you, my BACK HURTS!"

  12. #12
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    370
    I have a minor scoliosis and I agree it hurts. It has all my life. If I stand for a long time it is worse. My daughter is experiencing pain too.
    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).

  13. #13
    Join Date
    Jul 2007
    Location
    I live in New Milford, Ct and grew up in Brooklyn, NY
    Posts
    66

    "Scoliosis does not hurt" Rant

    I'm sorry. I've already forgotten your user name. My scoliosis has always given me pain off and on before the surgery yet I've read and heard doctors say scoliosis does not hurt. I'm confused too.

    dhansen
    ant./post. fusion Jan. '06
    T3- sacrum
    dbl.curve, T47,L43

  14. #14
    Join Date
    Nov 2005
    Location
    Lincolnshire
    Posts
    6

    Bunch of idiots!

    Hi I am 32 and like in my post I have just added Scoliosis is causing me much pain! I have been told the same "it does not cause pain" by two people now who probably dont have it themselves. Sometimes I could rip my spine out it hurts that much so take comfort in the fact that so many people here are saying YES it does bloo** hurt, agony sometimes does not describe it high enough...what a bunch of muppets these medical people can be to presume you would waste your time crying in agony!

  15. #15
    Join Date
    Mar 2004
    Posts
    45

    Scoliosis doesn't hurt

    I went in to my dr. for a re-check, and I am feeling much better. She did reiterate that Scoliosis does not cause pain. (I'm guessing that's something that med schools teach on Day 1 of classes for the spinal column. )

    Anyways, I have been going to physical therapy pretty faithfully twice a week. This is because I had a horrible muscle spasm in my left shoulder. The dr. doesn't think it was caused by my slight Scoliosis, however I wouldn't be surprised if it were. (Mainly because I have a tendency to get spasms there on a somewhat recurring basis. That also happens to be the side that is most affected by the curve in my neck, and the side where my hip is higher and my leg looks shorter.)

    The PT sessions consist mainly of strengthening my left shoulder muscles while keeping my right muscles working, too. I'm also doing neck stretches, etc. The PT then does some stretching of my neck and shoulder, which feels w-o-n-d-e-r-f-u-l !!!! I'm also doing some work on over-all core strength.

    Obviously this is not to correct my Scoliosis, but to help me be able to live my life with less discomfort and have more neck/shoulder mobility.

    My Physical Medicine dr. suggested a Home Traction Unit. I'll post a question about that in a different thread.

    dsal

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