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Thread: Need Advice

  1. #1
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    Need Advice

    Hello everyone, my name is George, I am 20 years old from London, in my second year studying Neuroscience at UCL.
    I had syringomyelia and chiari malformation when I was younger that caused scoliosis. Cobb was 34 degrees when I was 8, now is 43 degrees, I managed progression by wearing a brace all day, and swimming to national standard. I haven't worn a brace for a few years now, but up to this point I have always made sure my posture is good. However, maintaining good posture really wears me down, and makes me really tired physically and psychologically. When I don't focus on my posture, I sink into a bad, uncomfortable position that affects my ability to spend a long time standing or sitting - which I need to do a lot of as a full time student. I also feel like my posture and constant feeling of discomfort prevents me from confidently participating in Uni life.
    I want to be able to go all day long, without thinking about my back, but in a good posture, without so much muscular pain and discomfort. I am taking time off uni to think about my options and find a sustainable way to manage my problem, so I can maximise life in my 20's.
    I am going to try a physiotherapy programme to reduce the curve naturally, however if that doesn't work, I will consider surgical options.
    I hope people with experience and knowledge can give me advice!

    Thanks all,

    George

  2. #2
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    Hi George welcome to the forum.
    I have a ton of advice. Sometimes the recovery from Spinal Surgery isn't that easy. When I had mine 7 years ago my recovery wasn't easy because the recovery in the hospital every hour you need to use a breathing machine, also turn on to the sides every 4 hours. During the recovery at home isn't to bad. Because your in a place your familiar.
    Kara
    Age 25
    Braced at 13 years old
    Posterior Spinal Fusion March 10 2010
    Age at the time of surgery 18 years old
    Preop Curves T50 and L39
    Postop Curves T20 and L17

  3. #3
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    Quote Originally Posted by Kara1992 View Post
    Hi George welcome to the forum.
    I have a ton of advice. Sometimes the recovery from Spinal Surgery isn't that easy. When I had mine 7 years ago my recovery wasn't easy because the recovery in the hospital every hour you need to use a breathing machine, also turn on to the sides every 4 hours. During the recovery at home isn't to bad. Because your in a place your familiar.
    Thanks Kara. What is it like living with a long fusion? Can you sit and stand for a long time without getting pain?

  4. #4
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    Well living with a long Fusion isn't really easy. But I have worked my way around it. To answer your question about the siting and standing the answer is no I can't sit or stand for really long because my back starts to hurt worse then it already does.
    Kara
    Age 25
    Braced at 13 years old
    Posterior Spinal Fusion March 10 2010
    Age at the time of surgery 18 years old
    Preop Curves T50 and L39
    Postop Curves T20 and L17

  5. #5
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    Quote Originally Posted by Chan888 View Post
    I had syringomyelia and chiari malformation when I was younger that caused scoliosis.
    George, What is your status now as far as your syringomelyia and chiari is concerned? I would think that someone who is "versed" in these disorders (Neurosurgeon) and (Scoliosis surgeon) combined, would make a determination as far as any surgical procedures are concerned. Are you currently seeing a specialist? I don't think that anyone here on NSF can advise or come to any conclusions on your case. Scoliosis patients should be monitored with some sort of frequency. This is something I was never any good at and have heard various comments like "Where have you been?" Uh...."Having a good time!" (smiley face)

    It is amazing that you only progressed 9 degrees over 12 years, "and" through your growth spurt....Many are not that lucky. I guess the brace worked in restraining your curves. Its hard to tell what curves will do, some progress like wildfire and some can dwell for many years. The general progression formula is 1 degree per year as adults over age 18. I progressed from 50 degees to 70 degrees from 1975 to 2008 which is 20 degrees in 33 years. A little more than half a degree per year on both curves. I had an "S" curve that was balanced.

    Aches and pains are things that we have to deal with as scoliosis patients. Some have little pain, others have a lot of pain. Surgery should always be thought of as a "Last ditch" effort since the human body is incredibly complex. If you can adapt and live with a positive attitude, that is the best scenario. I ignored my pain as much as I could back in the old days....

    When I get into trouble with pain, the first thing I do is lay down. Eat and lay down. The next thing would be a hot shower or take a hot bath. These would be the easiest pain solutions.....I have never had a pro medication attitude, but have taken various medications in my later years. This of course should be discussed with a medical professional versed in pain control.

    Exercise is always a good thing, be sure to stay active....I don't think that this should be a problem at age 20. Physiotherapy and hydrotherapy will help you feel better.

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  6. #6
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    Quote Originally Posted by titaniumed View Post
    George, What is your status now as far as your syringomelyia and chiari is concerned? I would think that someone who is "versed" in these disorders (Neurosurgeon) and (Scoliosis surgeon) combined, would make a determination as far as any surgical procedures are concerned. Are you currently seeing a specialist? I don't think that anyone here on NSF can advise or come to any conclusions on your case. Scoliosis patients should be monitored with some sort of frequency. This is something I was never any good at and have heard various comments like "Where have you been?" Uh...."Having a good time!" (smiley face)

    It is amazing that you only progressed 9 degrees over 12 years, "and" through your growth spurt....Many are not that lucky. I guess the brace worked in restraining your curves. Its hard to tell what curves will do, some progress like wildfire and some can dwell for many years. The general progression formula is 1 degree per year as adults over age 18. I progressed from 50 degees to 70 degrees from 1975 to 2008 which is 20 degrees in 33 years. A little more than half a degree per year on both curves. I had an "S" curve that was balanced.

    Aches and pains are things that we have to deal with as scoliosis patients. Some have little pain, others have a lot of pain. Surgery should always be thought of as a "Last ditch" effort since the human body is incredibly complex. If you can adapt and live with a positive attitude, that is the best scenario. I ignored my pain as much as I could back in the old days....

    When I get into trouble with pain, the first thing I do is lay down. Eat and lay down. The next thing would be a hot shower or take a hot bath. These would be the easiest pain solutions.....I have never had a pro medication attitude, but have taken various medications in my later years. This of course should be discussed with a medical professional versed in pain control.

    Exercise is always a good thing, be sure to stay active....I don't think that this should be a problem at age 20. Physiotherapy and hydrotherapy will help you feel better.

    Ed
    Cheers Ed!

    My syringomyelia and chiari malformation caused my scoliosis. In 2005 I had brain surgery which successfully dealt with the neurological conditions. That was when my scoliosis was 34 degrees. Since the operation my scoliosis has only increased 9 degrees, and I grew to 5 ft 9 so there was a fair amount of growth. Since my scoliosis is not idiopathic, if my back was opened up and vertebrae straightened out, without rods, wouldn't it just stay straight? Because the root cause of the scoliosis has already been dealt with.
    Last edited by Chan888; 11-18-2017 at 04:35 PM.

  7. #7
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    Quote Originally Posted by Chan888 View Post
    My syringomyelia and chiari malformation caused my scoliosis. In 2005 I had brain surgery which successfully dealt with the neurological conditions. That was when my scoliosis was 34 degrees. Since the operation my scoliosis has only increased 9 degrees, and I grew to 5 ft 9 so there was a fair amount of growth. Since my scoliosis is not idiopathic, if my back was opened up and vertebrae straightened out, without rods, wouldn't it just stay straight? Because the root cause of the scoliosis has already been dealt with.
    George, the only way to straighten out your spine would be with a hardware system.....

    It would be prudent to be seen by a specialist for a checkup. Even though your brain surgery was successful, I would not ignore it. They can shoot an MRI and take a look. If it takes a long time to get in in England, I would start the process now. I wouldn't assume that your root cause is completely tackled. These things can flair up, and need monitoring. (smug face)

    Your a trooper you know....

    Were your surgeries done in London?

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  8. #8
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    Quote Originally Posted by titaniumed View Post
    George, the only way to straighten out your spine would be with a hardware system.....

    It would be prudent to be seen by a specialist for a checkup. Even though your brain surgery was successful, I would not ignore it. They can shoot an MRI and take a look. If it takes a long time to get in in England, I would start the process now. I wouldn't assume that your root cause is completely tackled. These things can flair up, and need monitoring. (smug face)

    Your a trooper you know....

    Were your surgeries done in London?

    Ed
    I have no neurological symptoms, the surgeon said I should be ok the rest of my life, it won't return.
    I think I will try wearing a brace, because it will keep me in a good posture, without my muscles having to work super hard all the time to maintain it.

  9. #9
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    George, It takes a lot of effort to wear a brace.....I commend you.....and you are probably one of the few that has adapted so well at this. How many years did you brace, and for how many hours per day? All of this from age 8? Did you sleep in the brace? Tell me about your brace history....

    What kind of brace do you have? Can you post a photo?

    Come to think of it, Jay Moe had fusion surgery, an incredible procedure and he posts here and he lives in England. He is around your age and active posting years ago.....You could shoot him a PM....He would be a good person to talk to.....

    http://www.scoliosis.org/forum/member.php?502790-JayMoe


    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  10. #10
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    Quote Originally Posted by titaniumed View Post
    George, It takes a lot of effort to wear a brace.....I commend you.....and you are probably one of the few that has adapted so well at this. How many years did you brace, and for how many hours per day? All of this from age 8? Did you sleep in the brace? Tell me about your brace history....

    What kind of brace do you have? Can you post a photo?

    Come to think of it, Jay Moe had fusion surgery, an incredible procedure and he posts here and he lives in England. He is around your age and active posting years ago.....You could shoot him a PM....He would be a good person to talk to.....

    http://www.scoliosis.org/forum/member.php?502790-JayMoe


    Ed
    Cheers Ed,

    I PM'd Jay. I started the brace from age 7, wearing it all day and all night, except for a few hours when I swam or did PE at school. I did that till I was maybe 15. I never made a big deal out of it, I just got on. Only problem was it made me really hot, and I would end up wringing my undervest out at the end of the day like a pair of swimming trunks. At the moment, I'm just tired of being uncomfortable 24/7, and in pain when sitting or standing for a while. I wanna do big things, but it's hard to contend when you gotta spend so much energy standing.

  11. #11
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    I know what you are saying..... All we want is to be comfortable.....I braced as an adult and remember the heat.

    On the subject of doing big things, I say go for it. Don't ever doubt your abilities, challenges can be so rewarding. (smiley face)

    Here are a few videos I like. My best friend growing up is missing a leg, and he taught me so much about things that actually helped me with my scoliosis....nothing to do with the spine, but you get the idea....

    https://www.youtube.com/watch?v=fJ0X_uLbGDk

    https://www.youtube.com/watch?v=_1_dgZ4-Ldw

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  12. #12
    Join Date
    Sep 2011
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    242
    Hi,

    I too am in UK.

    My scoliosis is nothing like yours and neither is my age!

    Your scoliosis as it stands is under surgical thresholds as far as UK is concerned - unless there are underlying reasons - pain is not one of those reasons. I expect like me you have become aware of how little in the way of complementary targeted help there is for help with scoliosis pain, especially if you want to avoid medication.

    Physio or other manual therapy will not reduce the curve. However they will help strengthen muscles which in turn will support the spine better and may help painwise. I would not recommend a brace as if you use it for a long time the muscles can atrophy, which will defeat any physical exercise hard work you have put in. There are those who recommend a specific adult brace for pain relief but there is no evidence that they work and a mountain of evidence that they make pots of money for the provider. You will not get a brace on the NHS.

    Have you tried Alexander technique- this therapy specifically targets posture and may help.

    I think Ed offers good advice in that maybe you should see a scoliosis consultant to get a good check up and if the curve is not progressing then continue to exercise and self manage and try not to worry.

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