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Thread: Hope for adults with moderate scoliosis?

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    Default Hope for adults with moderate scoliosis?

    Hi,

    So I am 23 now and I've been living with scoliosis for the last decade. It wasn't until recently when I became increasingly aware of it and it really started to bother me, a lot. Obviously it wasn't serious enough back in the day since nothing was done about it, I merely got a diagnosis. I used to be extremely anti-social in the past but currently I'm in the process of changing my life to the better. I joined college last year and I'm doing fine in that regard, but when it comes to picking up an activity (I tried various sports etc.), my condition is clearly preventing me from doing so (I'm having trouble doing even basic exercises such as pushup, situps etc....) So last week I had a doctor's appointment. Jesus, such a terrible experience! He didn't even bother to measure my curve, said it was around 30 degrees and that I was not eligible for a surgery because wasn't "bad enough". And that's about it, I was done in 2 minutes. Now I'm getting really frustrated cause it's already bad as it is and I really want to do something about it. Not only does it look bad but I'm also experiencing lower back pain plus some discomfort while lying in bed and trying to breathe (it's not really painful but I'm constantly aware of it which makes it difficult to fall asleep!). So I've done a bunch of reading, found out a few stories about people having undergone surgery despite the moderate curve. But then again, I gotta admit I don't like what I read about the whole surgery process and the disability that comes after it so I'm not even sure I want to have a surgery. But I sure as hell do not want to leave it as it is and be forced to live with scoliosis for the rest of my life. - I don't mean to be insensitive, I know there are much worse cases than mine, but still.....
    Please, help me out here...if I understood correctly, spinal fusion is the only available treatment option for adults, right? I'm living in a less developed country so I'm not sure if more attractive options are being used elsewhere.

    Thanks !

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    Default Re: Hope for adults with moderate scoliosis?

    Hi there,

    Whereabouts in the world do you live? There are various methods you can try to help reduce pain and improve your posture, making your scoliosis less apparent. Take a look in our Nonsurgical forum There are various forms of targeted physiotherapy and techniques such as the Alexander Technique which are all reported to be helpful.

    Most people who have spinal fusion don't regard themselves as having a disability due to it, by the way. The majority have the surgery and go on to live their lives without even thinking about scoliosis anymore. We have seen many people come and go here at SSO - once they've recovered from surgery they have no need of a scoliosis support forum anymore, but since some of them have become good friends we (the mods and admins) have stayed in touch via Facebook etc you might like to look at the "Things you CAN do with a fused spine" thread at the top of the General Forum to see all the different activities people have been taking part in post-op.

    Toni xx
    37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.

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    Default Re: Hope for adults with moderate scoliosis?

    How on earth could your doctor estimate your curve at 30 degrees without even sending you for an X-ray? The mind boggles
    Me, a Mod? Nah ... I'll always be a rocker

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    Default Re: Hope for adults with moderate scoliosis?

    Quote Originally Posted by GillyG View Post
    How on earth could your doctor estimate your curve at 30 degrees without even sending you for an X-ray? The mind boggles
    You and I both Gilly, really silly to say such a thing.

    I think you should try and have another appointment with a different doctor to try and get a referal to a specialist and to also get an xray to see what its like. As noone can really say what size it is just by looking.

    Anyways, welcome to the forum and i hope that you get the help needed here

    Jay
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

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    Default Re: Hope for adults with moderate scoliosis?

    Hey, thanks for the answers. I'm from Croatia, btw. Forgot to mention, yeah of course I had an x-ray prior to the appointment and the doctor in question is the top surgeon in country when it comes to scoliosis but he doesn't want to deal with "no surgery" cases so he seemed rather cold and distanced. I've heard he acts the same towards every patient, noone gets to have their questions answered cause the appointment literally lasts for 2 minutes.
    I looked up the conservative method section, they seem like attractive options but since it won't remove my curve it doesn't satisfy me in a long run. But neither does spinal fusion either, really. The fact that the topic is named "things you CAN do...." already implies that you're limited, kind of. If you have metal rods placed in your spine and your and your intervertebral discs removed and you permanently lose flexibility (that's the best case scenario, I read many people report at least some type of pain after the surgery), this is indeed a disability in my eyes. Hopefully you understand my point of view because I can see why it's easier for people with bigger curves to choose a surgery over conservative treatment, it's basically their best option. I really don't know what to do, wish the doctor had discussed it with me and at least considered the possibility of operating on me.
    Lastly, I'm wondering if there are some new surgical methods on the horizon? From what I've read, the procedure remained the same for the last 50 years (fusion)....That really saddens me.

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    Default Re: Hope for adults with moderate scoliosis?

    Quote Originally Posted by mateja23 View Post
    From what I've read, the procedure remained the same for the last 50 years (fusion)....That really saddens me.
    In a way this is true. As it still consists of inserting rods into ones back and screwing them in etc. But they way it is all undertaken HAS changed in leaps and bounds since the very first type of rods (The Harrington ones) which was a single rod secured at the top and bottom of the spine. And so now from what i know, is they are now made of something different, in this case Titanium, and are the same shape as your spine (so the follow the natural Lordosis and Kyphosis of the spine) and are attached to every vertabrae the rods go along. And so meaning it is more stable than the old method. Now they have/ are developing a new rod which i know of one person has had iserted made out of Chrome Cobolt, which are even stronger than the Titatium ones.

    I'm unsure of if they are looking at trying to do it all in a different way. But im sure someone else with more knowledge will know if this is the case or not.

    And it has gotten really safe now to under take, mainly because of the development of Spinal Cord Monitoring, which are electrodes attached to you in various places, which send signals to your surgeon that there's something wrong and he needs to loosen bits up bit.

    Hope this helps in some way.
    Jay
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

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    Default Re: Hope for adults with moderate scoliosis?

    Quote Originally Posted by mateja23 View Post
    Hey, thanks for the answers. I'm from Croatia, btw. Forgot to mention, yeah of course I had an x-ray prior to the appointment and the doctor in question is the top surgeon in country when it comes to scoliosis but he doesn't want to deal with "no surgery" cases so he seemed rather cold and distanced. I've heard he acts the same towards every patient, noone gets to have their questions answered cause the appointment literally lasts for 2 minutes.
    I looked up the conservative method section, they seem like attractive options but since it won't remove my curve it doesn't satisfy me in a long run. But neither does spinal fusion either, really. The fact that the topic is named "things you CAN do...." already implies that you're limited, kind of. If you have metal rods placed in your spine and your and your intervertebral discs removed and you permanently lose flexibility (that's the best case scenario, I read many people report at least some type of pain after the surgery), this is indeed a disability in my eyes. Hopefully you understand my point of view because I can see why it's easier for people with bigger curves to choose a surgery over conservative treatment, it's basically their best option. I really don't know what to do, wish the doctor had discussed it with me and at least considered the possibility of operating on me.
    Lastly, I'm wondering if there are some new surgical methods on the horizon? From what I've read, the procedure remained the same for the last 50 years (fusion)....That really saddens me.
    Hey Mateja.

    I wish I could give you a solution to your problems. Unfortunately, I don't think anyone can, and even if they could, I wouldn't know it myself >:. I don't know quite what you've gone through, but you seem to be in a lot of emotional pain right now.

    I really feel for you. I'm also 23, and I've dealt with about 30 degree double major scoliosis for about the same amount of time you have (though I was only recently diagnosed).

    Don't let anyone ever tell you that mild/moderate scoliosis is always easy to live with. The medical profession can seem to abandon you once the back pain goes away, even if cosmetically it doesn't look attractive to you. Psychologically it can be a pain: even when you're not in pain it's frustrating to have one hip higher, one shoulder higher, or your head tilted to one side all the time. It can make shopping for clothes a right nightmare, and it also knocks your confidence a lot (you and me both). There are definitely more people living with mild scoliosis than you'd think (the media only tends to focus on the very major cases, making it seem like people are either bent double or are "miraculously cured"), and lots of them have good and bad days. In fact, sometimes having a minor scoliosis can be just as damaging psychologically as a major one; I know the fear of having to always "hide" my shoulders and hips for fear of being seen as different. Mentally that can really screw you up, filling your head with thoughts of being "unworthy" or "deformed". Disguising scoliosis and trying to "fight" against it with exercise are both helpful sometimes, but thinking too much like that can really make you feel ashamed of your appearance.

    I think a good thing to do to beat that is to accept you have scoliosis, but just wear what you want anyway, even if it highlights your scoliosis. You're beautiful, right? Not being ashamed of your body is important for your mental health, and those people who might judge you for not looking like an idealised fantasy woman can stick a rusty pike up their bungholes!

    Don't beat yourself up if you can't be "strong" (that sounds patronising, sorry, I just mean that would be as society would put it) all the time, and feel free to do something different if it brings you peace. Sarah Michelle Gellar has worn clothes that show her pretty pronounced scoliosis, but she's also openly said she has Body Dysmorphic Disorder, for one.

    Hang in there :3

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    Default Re: Hope for adults with moderate scoliosis?

    Hey Mateja,

    The thread is called "Things you CAN do with a fused spine" to highlight the fact that people aren't really limited as they think they might be following surgery. There is a popular misconception that you will suddenly find your movement restricted following surgery, but once you have healed up you will most likely not feel restricted much, if at all. Plus, years ago, we were given a long list of activities to avoid - this is no-longer the case. If you read the thread you'll see just how many activities our members have been doing post-op - from bungee jumps to horse riding to skiing!

    You can choose how you view the surgery, it's up to you. I feel that if you decide it will give you a form of disability then you will probably struggle more than someone who is looking forward to getting back to normal after they have given themselves time to heal.

    I hope you find more peace with yourself as you get older

    Toni xx
    37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.

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    Default Re: Hope for adults with moderate scoliosis?

    WingGuru,

    Thanks for your kind words, really appreciate it. You're right on point, some things I could not have said better myself!
    I consider myself as being diagnosed only recently as well, as during my adolescence years I literally knew nothing about it nor I really cared. It might have worsened over the years, too, since I was only sitting in front of PC watcing tv shows, movies and playing video games. But then I decided to change my life to the better and have a fresh start. Despite the bad odds, I joined a top university, currently studying in a very competitive field (molecular biology). So I don't easily accept "no" as an answer and I most certainly don't want to be condemned to live with scoliosis for the rest of my life. I did accept it (kind of), but I definitely hope it's not a fixed thing and that it might change in the near future. Why is it so wrong to have that kind of hope?
    Even on my "good" days, I'm constantly reminded of my condition. For example I can't sit for long in class (or at home, studying) without feeling constant pain and discomfort in neck/back, which sometimes makes it really hard to focus. I'm really ambitious, looking forward to having great grades so I could join a phd program after graduation. Scoliosis makes it really hard to achieve my goals. Very few things I do are painless and "normal". For example I can't even carry shopping bags, the back pain is always there. When it comes to buying clothes, I'm not even concerned about buying those that would reveal my twisted spine cause I don't even like wearing those types of clothes. And I don't think anyone noticed that I have scoliosis, ever. It's not about the others, just about me.

    Tonybunny,

    I value your opinon, but I completely disagree on most points. I never said or thought that people are completely crippled after the surgery. The thing is, I can ALREADY do all these things you mentioned and much more, probably with some deal of pain but I could do them. Surgery would fix my spine but I would most certainly lose flexibility, permanently. When it comes to sports it would be either "can't do them at all" or "can't really do them". I would never be competitive in anything and I would be able to only do things half-well, not even close to normal people with unfused spines. That's the only truth and you people have been lying to yourselves if you think otherwise. Can you even jump normally? (you don't have intervertebral discs that absorb the pressure). Not even talking about sports here, but you certainly can't do simple exercises as many of them involve some type of bending or twisting the spine?
    If the surgery was available to me, I would consider it only for cosmetic reasons since pain-relief isn't guaranteed anyway.

    By the way I found something about "fusionless" surgeries, I think that's what I was looking for.
    http://www.utwente.nl/ctw/bw/educati...nished/Talsma/
    http://www.beckersspine.com/spine/it...body-tethering

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    Default Re: Hope for adults with moderate scoliosis?

    Hi Matesja,

    Yes, I can jump normally I had my first fusion aged ten and after that I took part in all school PE activities including high jump, long jump, long distance running etc etc - every single thing my classmates did, with no restrictions. I was on the school hockey team for a while.

    Of course, fusion does limit the amount your spine can bend and twist. My point is that this isn't usually enough for someone to feel very limited after surgery.

    Of course you can already do the things in the "Things you CAN do" thread! People with unfused spines would be expected to be able to do them. However, those facing fusion surgery often worry that they will be very restricted after surgery, so that thread is there to show that it is very possible to do such activities as horse riding (we've had competitive post-op riders here), skiing and even bungee jumping.

    Are you still growing? VBS (tethering) surgery can only be done in a growing spine, as it utilises your growth to help pull the spine straight. This treatment is available in the USA.

    Certainly it's usually better to have an unfused spine than a fused one, if your curve is stable. There are few people here who have surgery purely for cosmetic reasons.
    37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.

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    Default Re: Hope for adults with moderate scoliosis?

    Since your curve is too small for surgery anyway, it might be more productive to look at nonsurgical methods to help improve your pain and posture There are various targetted physios methods, as I mentioned, and techniques such as The Alexander Technique.
    37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.

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    Default Re: Hope for adults with moderate scoliosis?

    Quote Originally Posted by tonibunny View Post
    Since your curve is too small for surgery anyway, it might be more productive to look at nonsurgical methods to help improve your pain and posture There are various targetted physios methods, as I mentioned, and techniques such as The Alexander Technique.
    Certainly. I've already looked it up and there is a certified Schroth therapist in my coutnry, think I might schedule an appointment. But as I already mentioned above, none of the conservative methods fix the spine and as such can satisfy me only temporarily.
    Do you provide links about advancements in spinal surgery on your website? I can't seem to find any. It would make it a lot easier than searching on google. In the meantime, until an attractive option for me comes up, I will look for options that would make life with scoliosis more bearable. I will also keep an eye on success stories here, these are always nice to read.

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    Default Re: Hope for adults with moderate scoliosis?

    Oh and btw, do you guys get pictures of your xrays on a cd or something? Unforunately mine is on a film so I can't post it.
    It looks very similar to one i found in the other thread, from member jamielisabeth: http://s1023.photobucket.com/user/ja...?sort=3&page=1

    Mine is also in thoracic area, convex to the right but it's noticeably less degrees than hers, I think.

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    Default Re: Hope for adults with moderate scoliosis?

    We post about advancements in spinal treatments when we hear about them, and sometimes include links if there's a website with more info. You'd need to do a search in the forums if you're looking for something specific though.

    The most recent advancements in spinal instrumentation have been in the development of growth rods for young children (under the age of 11) who still have a lot of growth remaining. In the past ten years we have seen the innovation of surgically-lengthened growth rods, and in the past year we have seen the advent of MAGEC magnetically-lengthened rods which don't even require surgery to lengthen them. Other innovations are the VEPTR (a rod that attaches to the ribcage, and is used to help young children with large curves that are causing thoracic insufficiency syndrome) and Vertebral Body Stapling, as mentioned in the article you posted - though I have not heard of this being used outside of the USA as yet.

    Whilst fusion surgery has remained the standard surgical treatment for Adolescent Idiopathic Scoliosis for fifty years, the instrumentation used has greatly improved. The article you posted about a proposed fusionless instrumentation states that the rods that are used today are the Harrington, Luque and Cotrel-Dubousset rods. These rods haven't actually been used in the UK or US* for at least 20 years, as they have been superseded by more modern rods that are much more effective. They are more stable, give better corrections in all planes (they can be contoured to follow the natural kyphosis and lordosis of the spine) and are able to derotate the spine, which the older rods could not do.

    I hope this is interesting to you!

    Toni x

    * I appreciate that things may be different in Holland where the writer is at university, but I would be very much surprised if this is the case.
    37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.

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    Default Re: Hope for adults with moderate scoliosis?

    Quote Originally Posted by mateja23 View Post
    Oh and btw, do you guys get pictures of your xrays on a cd or something? Unforunately mine is on a film so I can't post it.
    It looks very similar to one i found in the other thread, from member jamielisabeth: http://s1023.photobucket.com/user/ja...?sort=3&page=1

    Mine is also in thoracic area, convex to the right but it's noticeably less degrees than hers, I think.
    Here in the UK you can pay a set fee to have all of your notes, scans, x-rays etc copied and sent to you. You can also usually take a photo of your x-rays whilst they are displayed on the light box or computer screen during your consultations - most surgeons are happy for patients to do this. Since most x-rays are stored in digital rather than film format now, some surgeons are even happy to copy x-rays onto a memory stick for you.

    Do you have your actual x-ray film in your possession? I managed to take a pretty decent photo of one of my old film x-rays by taping it up onto a window
    37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.

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