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Thread: Moderate? Really??

  1. #1
    Join Date
    Dec 2009
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    27

    Moderate? Really??

    Hi everyone! I need some help. I'm 38 years old. When I was about 10, I was diagnosed with scoliosis. From what Mom and I can recall, I had curves of 60 and 30 at some point...I seem to recall though that at the end of a few years of bracing my worst curve was 30. Overall, I was happy with the results of my brace.

    It's been 20 years since I have been to a doctor for my back. Pain and stiffness just seemed par for the course when options are surgery or pain medications--or so I thought.

    I finally can't take the pain anymore. At the end of the day I'm completely stooped over. I went to a physiatrist and I just had x-rays done...a high curve (like between the shoulder blades) of 34 and a low curve of 38. I'm starting physical therapy on Wednesday.

    Can anyone give it to me straight? The doc said we'll try this therapy, but it's pretty likely that at some point I may need some surgical instrumentation. I know everyone is different, but it feels like I'm in an awful lot of pain...and I'm quite "curvy" for someone who only has "moderate" scoliosis. This seems pretty serious to me.

    I'm a really up, happy person, but I'm just SAD about this. I feel like the road ahead is a painful one. I am not a complainer, but I can't get over feeling like no one understands how much pain I'm in and even the x-rays make it seem rather unremarkable.

    I'd really love to talk about this to anyone out there. Despite a fantastic hubby, I'm feeling pretty bummed out about this, and it would be nice to hear from someone who understands.

    Thanks!

  2. #2
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Welcome, Cbeem.

    My pre-op story sounds exactly like yours, even down to the age of diagnosis and bracing.

    I lived with back pain my entire life: It literally felt as if my shoulder blades were being pulled in opposite directions. I had cervical discs above my structural curve that were perpetually protruded 3mm. I tried every tool in the traditional (and not so traditional) pain management arsenal. Out of desperation, I finally began to investigate surgery at 39.

    While we all make our decisions for our own reasons, I can tell you this: Not for one single minute have I regretted my surgery. Sure, I was in a different kind of pain when I woke up after the procedure, but it was immediately evident the all too familiar pain that had been my lifelong companion was *gone*.

    Physical therapy is a good first step, and I'd recommend you find a reputable pain management doctor (they're usually anesthesiologists) if you haven't yet. Definitely see one before you even consider surgery as an early option for such a small curve. While a lot of people think all a PM doctor will do is prescribe meds, that isn't the case.

    Procedures like rhizotomies (RF ablation ... the medial branch nerve that carries pain impulses is burned) can work miracles for some people. As can facet joint injections, nerve root blocks, epidural steroid treatment, etc. etc.

    Acupuncture works for many people. Myofascial release, deep tissue, a/shiatsu and trigger point therapy can have substantial effects.

    I know how badly scoliosis can hurt. If I understood your post correctly, however, it would seem you have a lot of treatment options to try before you need to consider (or even worry about considering) surgery.

    Hang in there ... it's going to be okay - one way or another.

    Best regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  3. #3
    Join Date
    Dec 2009
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    27

    Thanks.

    Thanks. I really appreciate it. I think I'm onto a decent approach--it's a group of spine specialists in New Hampshire--they've got all sorts of docs and do some of the alternative things you mentioned. You're right...lots to consider before I get ahead of myself and worry.

    It just feels like it's a "such a small curve" as you say and yet I feel like my life is not my own.

    Thank you. I'm looking forward to spending some more time on the forums and learning more.

  4. #4
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
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    Let me clarify ... :)

    Quote Originally Posted by cbeem View Post
    It just feels like it's a "such a small curve" as you say and yet I feel like my life is not my own.
    When I said "such a small curve", I only meant it in the context of surgery. Criteria for adult surgery is typically a 50 curve with documented progression: Some surgeons (not all) will consider fusing a stable curve like mine that held at 48-53 my entire adult life. Generally speaking, 38 is not a curve many surgeons would fuse - although that isn't set in stone.

    I definitely didn't mean to minimize the effects of your curve, and especially the pain it can cause. My back hurt virtually from my diagnosis at 10, and living with it all those years makes your sentiment "my life is not my own" ring very familiar: You live through the pain, but it's *always* there ... day in and day out.

    People just don't understand what you go through every day because you DO go on and live your life. They don't understand that you can hurt that badly and still function. They don't understand it hurts equally whether you choose to live, or curl up in a ball. They simply have to point of reference to understand, but I do understand. You aren't alone, even though it may seem so.

    It's impossible for me to even explain how shocking it was when my pain vanished, and I'm hoping your future holds that same weird, wonderful disbelief.

    I'm excited at the multitude of options you have ahead of you. It may sound crazy, but you're actually in a good place. Have faith, and keep us posted!

    Best regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  5. #5
    Join Date
    May 2009
    Posts
    3,745
    Hi Cbeem
    welcome to the forum....although i guess folks would rather not need it(if they didnt have scoli), but thank goodness for it!
    i have not had surgery...yet...i have a 40 degree thoracic & 61 degree lumbar curve...i have rotation...& spinal stenosis...& degenerative disc disease (herniated discs 5 years ago started a downhill slide!) & severe arthritis of the spine....

    i go to 2 really good pain management doctors...botox shots control the pain in thoracic area, cause it freezes the muscles so they cant spasm or bunch up....not too much has helped the lumbar, where my severe pain comes from...have had epidurals, facet block, nerve ablation & sacroiliac shots...the sacroiliac shots worked best for me, but i think it just depends on the doctor finding the right spot, where most of the pain is originating from....the facet blocks & nerve ablation helped for a few months...the epidurals not much....but then again, all these measures give temporary relief at best...i have never had relief for more than a few months, & am grateful for that! the botox shots last the longest...about 3-4 months....acupuncture never helped my back...nor did P.T., though i didnt find one with scoli experience...have been given a name of one in nyc that i may be investigating...but i dont have much faith in P.T. for my situation....i also dont have much faith in chiros...though i think some people do....

    i would strongly suggest you seek out a good pain management doctor....just a consult alone might be helpful to see what they think they can help you with.....

    best of luck
    jess

  6. #6
    Join Date
    Mar 2009
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    Central VA
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    Me, too

    Hi Cbeem,
    Thanks for writing. Living with scoliosis is a long and often confusing road, of trying to find out what works, and there is always the looming question of surgery. I am 34/49 as of last May and will find out in May how I've held, improved hopefully, or hopefully not progressed. I have become best friends with the gym - I am there at least 4 days a week. I have a wonderful gym that offers strength/core machines, yoga, swimming, sauna, whirlpool, etc. I have really availed myself of all it has and I am just today encouraged that I have discovered how to "pull up" out of my left lumbar "bending". Yes, it's scary and the x-rays will tell the truth, but I have gone from unbearable pain that prevented much home activity besides my office job, to no pain, no med (I have a NSAID Rx if needed). PT got me started, the excellent gym trainer good with backs took over, and I am pretty encouraged. As they seem to wonder if the risks outweigh benefits of adult scoliosis surgery these days (my Dr is a researcher also in the SRS), I am dedicating this year to living with and loving my back. Thanks for sharing, again. We need each other! --Christina

  7. #7
    Join Date
    Mar 2009
    Location
    Central VA
    Posts
    190

    Ps

    Chbeem, hi again. I wanted also to encourage you that you have not drifted that far from the progress you made after the brace years. I had a Boston brace for a year in high school (that was all I could take) and my curve reduced at that time from lumbar 34 to 19. Like you, I did not follow up for quite some time. At 20 years, I had an xray done in a major city and was told that "they don't measure curves anymore" and they sent me home with no follow up. Due to increasing pain, I sought all kinds of treatment for the next 8 years to no avail. I finally ordered current xrays, and come to find out, those previous xrays showed 34 lumbar with degeneration(the Dr. measured that one also when I came in for my recent xray). My current curve also now showed 49 lumbar PLUS 34 thoracic). I was sick over it. Anyway, this is just to encourage you-- I am now virtually pain-free due to my exercise regimen, even at that curve level. I did a lot of core strengthening along with spinal stablization exercises, and I had some soft tissue manipulation done on my upper curve symptoms (shoulder/neck/face tightness & pain). I have a TENS unit. I work out faithfully. I hope to never have to need surgery. I hope you find success!
    Last edited by dailystrength; 01-07-2010 at 12:26 PM.

  8. #8
    Join Date
    Dec 2009
    Posts
    27

    Thanks so much!

    Thanks, all. I really appreciate your stories and support. I started PT. I had to finally tell them that they need to do more with me because if they wait until I'm not having any pain, it'll be a LONG wait.

    Christina, I'm actually joining a gym sometime this week or next. I feel like getting strong is all I can do--although I'm also trying not to put it so much on me, y'know?

    I went back to the physiatrist. I think I need a second opinion. I mean, I don't WANT surgery, but I want to fully assess where my curves are right now. (Mom swears that she gave ME my childhood x-rays years ago, but they are certainly somewhere at her home...ugh) They only did front-facing x-rays. And the diagnosis was: A T2-T7 thoracic levoscoliosis is present estimated at 34 degrees. A T8-L2 dextroscoliosis is present estimated at 38 degrees.

    When I asked the physiatrist about the additional curve in my neck that wasn't mentioned he said that was just a compensatory curve. Shouldn't they measure that?

    They didn't take any side x-rays and didn't measure the twist of my spine at all. There is one point where it seems to me that it pretty radically twists. When I pointed it out (on the copy of the x-rays I brought with me), the physiatrist was pretty surprised by that and asked if I had ever had a trauma. Sheesh. (If I can figure out how to attach the upper thoracic x-ray I will)

    He also said injections, accupuncture...all the other things that they had toted as options...wouldn't help me. So, basically he wished me luck and said I should join a gym and learn to swim.

    I'm feeling a little abandoned, but I also think well...I don't want surgery, so what do you want? A cheerleader to say it will be okay? I don't know. As of now, I'm joining the gym. They have a pool there. And daycare! And, maybe I will even learn to swim correctly. I'm also considering calling a specialist down in Boston to get a more thorough diagnosis so that I have something to work with and can check back to see if things have progressed or maintained.

    Thanks all. It's so comforting to talk to someone else about this--someone who knows.

  9. #9
    Join Date
    Jan 2008
    Location
    NC
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    8,901
    Quote Originally Posted by dailystrength View Post
    Chbeem, hi again. I wanted also to encourage you that you have not drifted that far from the progress you made after the brace years. I had a Boston brace for a year in high school (that was all I could take) and my curve reduced at that time from lumbar 34 to 19. Like you, I did not follow up for quite some time. At 20 years, I had an xray done in a major city and was told that "they don't measure curves anymore" and they sent me home with no follow up. Due to increasing pain, I sought all kinds of treatment for the next 8 years to no avail. I finally ordered current xrays, and come to find out, those previous xrays showed 34 lumbar with degeneration(the Dr. measured that one also when I came in for my recent xray). My current curve also now showed 49 lumbar PLUS 34 thoracic). I was sick over it. Anyway, this is just to encourage you-- I am now virtually pain-free due to my exercise regimen, even at that curve level. I did a lot of core strengthening along with spinal stablization exercises, and I had some soft tissue manipulation done on my upper curve symptoms (shoulder/neck/face tightness & pain). I have a TENS unit. I work out faithfully. I hope to never have to need surgery. I hope you find success!
    I'm glad you posted about how PT controls your pain. We don't get too many testimonials like that but I think it happens more than you can tell from the testimonials.

    As to your bracing, I think it was expected to return to the pre-brace angle of 34*. But what is amazing I think is that you held at that angle for 20 years and then progressed 15* in the next 8 years if I understand your time line.

    This is yet another case of a curve (34* at maturity) that isn't supposed to progress to near surgery territory but still does.

    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."

  10. #10
    Join Date
    Jan 2009
    Posts
    93
    jrnyc, who is the PT in NYC that has been suggested to you? My daughter has been going to a PT for pain. It helps a little but the PT is not a scoli specialist. Send a private message, if you'd rather.

  11. #11
    Join Date
    Feb 2009
    Posts
    25
    Hi cbeem,

    I don't post often but wanted to say hello and tell you that you are definitely not alone! I am 39 and we have very similar stories. Looking at me, no one could ever tell that I have scoliosis and I really don't talk about it with anyone. Sometimes I am in pain all of the time, sometimes I can go weeks and be fine. I am very active and that has helped a lot with pain. I am wanting to get into swimming this year as well because it may help, or it may not. Yoga has helped me a lot, as well as weight training and staying on the lean side. I have two little girls, my youngest just turned 3 and I know my pain will lessen when I'm not picking her up so much.

    It is frustrating not being able to do things that other people can for me (I finally gave up running a few years ago), but I try to stay positive and figure everyone has something physical that gives them grief. Mine just happens to be scoliosis.

    Feel free to pm me. I don't have any friends in real life with scoliosis so it's nice to be able to talk to someone that can understand the frustration.

    Oh, I also wanted to add that I have been seeing a physical therapist for the last 10 years. I have major pain when my joints are out of alignment (SI joints mostly) and the pt can put them back.

  12. #12
    Join Date
    May 2009
    Posts
    3,745
    Hats off to anyone who can join a gym!! i just quit mine after not being able to go, due to pain, for over a year!

    i would not take a physiatrist's word...would get another opinion...i dont know about no shots helping...why not? did this person say exactly why? is it the location of the curve? or the degree? or what...? since the botox takes care of my thoracic pain for now, i am thrilled...just wish something could help the lumbar as much! but i will have facet block & sacroiliac injections jan 18th, first time since 2008...we will see how much that helps...since i am going to see dr anand on a 6 hour each way trip to CA on january 25th.....i sure hope the shots help!

    jess

  13. #13
    Join Date
    Apr 2005
    Posts
    92

    botox?

    Hello!
    You might have said in an earlier post- but where are you going for the shots and what is the cost? I am still experiencing annoying thoracicger two years after surgery. Doc said it might be due to scar tissue.
    Thanks!
    CSC
    Idiopathic Scoliosis; Wore a Milwaukee brace; Told by physician it would not progress
    S curve; Surgery date: January 29, 2008!!

  14. #14
    Join Date
    Apr 2005
    Posts
    92

    Exercise

    Biker Chick,
    Should have enclosed this in the earlier post but it's early here in Arizona. At least that's my excuse and little sleep. My pain did not start until my early 40's. Put off surgery for as long as possible with waiting for my children to grow up and the doctor's advice. Started working out at Curves five years ago before surgery. It really helped physically and emotionally. Increased my leg and core strength, flexibility,and made me feel like I had some control. Worked out the day before surgery! I'm still continuing with it. I kept walking as much as possible- where I live it's more like hiking. Lots of ups and downs with mountains and hills. There are days when it's painful and then I go slower or don't do quite as much. My point is every bit of exercise helps.
    I will need a second surgery but will try to put it off as long as possible. Don't want to lose my remaining mobility in the lumbar region. It's a constant battle as far as I see it. Just hoping for a pain-free day again! My understanding is that a lot of people do after surgery. Just wasn't one of them. Oh, well. If you look around you most people have some type of cross to bear.

    Take care!
    CSC
    Idiopathic Scoliosis; Wore a Milwaukee brace; Told by physician it would not progress
    S curve; Surgery date: January 29, 2008!!

  15. #15
    Join Date
    Mar 2009
    Location
    Central VA
    Posts
    190

    Progressing curve

    Quote Originally Posted by Pooka1 View Post
    As to your bracing, I think it was expected to return to the pre-brace angle of 34*. But what is amazing I think is that you held at that angle for 20 years and then progressed 15* in the next 8 years if I understand your time line. This is yet another case of a curve (34* at maturity) that isn't supposed to progress to near surgery territory but still does.
    Hi again. Yes, I am reading up and doing all I can to help myself- last year I ordered tons of books from half.com and such i.e. Back Care Basics & Structural Yoga Therapy. Since I have dedicated this year to focusing on my back, I am going to start a journal in my blog to track the progress. I feel in a way it is a mind/body battle, and I did some relaxation exercises from SYT yesterday to help ease the anxiety of muscle tension and vice versa.

    Anyway, I wanted to reply that yes, the time frame you thought was correct. In '78 I was diagnosed with 34 lumbar and in '80 I was stable at ~20 after the brace; in '00 I was still 34 (fairly stable) but in '08 I was 49 lumbar & 34 thoracic, a progression of 15 degrees in 8 years. One specialist I saw (from Scroth training persuasion) last year pointed to hormones as the culprit as it was the beginning of "the change of life" --much as hormones at the first "change of life" occur when it begins. Interesting... so many theories. Thanks for commenting on this, btw. I was overcome with emotion when I learned of my current angle, and know that more awareness needs to happen. I think we are getting there slowly. Scoliosis cannot be ignored.
    Last edited by dailystrength; 01-10-2010 at 12:53 PM.

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