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Thread: I'm 29 with Scoliosis from U.K

  1. #1
    Join Date
    Oct 2006
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    I'm 29 with Scoliosis from U.K

    Hello Everyone - Sorry for this long thread!

    I am from England UK, and I was diagnosed with Scoliosis when I was about 13. However, I was never told what it was until about 4 years ago. The Doctor I was seeing when I was 13 decided that my condition was not that bad and I should continue my life as normal. So I no longer went to see a Doctor and as far as I knew I just had a 'slightí curve in my spine' that had no name!!!

    So I went through my teen years playing rugby, football (soccer to some) and was involved in motor sport (having a few serious accidents). I was bullied a lot at school as I didnít stand up straight, even teachers made a lot of negative comments to me (this was over 10 years ago and bullying was just accepted then). I went to University when I was 21 and I decided I wanted to find out more about my back 'problem'. So I went to my local GP and told him I wanted to know what my problem was, and if anything could be done (this is 7 years ago now). The GP said "Nothing can be done, it's just something you have to live with, but I can give you the name of a good chiropractor to help the pain". I went to see the chiropractor who cracked and snapped my back, which didn't really do anything for me. I went several times, and the last time I went (4 years ago) a new person was there, he was the one who said "So does your scoliosis stop you from doing anything"?.......... WHAT.... it has a name!? This was the first I had heard about scoliosis.

    The final visit to the chiropractor was painful; he stopped me walking for 4 days! So I didn't go back. I then went to another GP (I had moved house at this time) and said I wanted to see a Scoliosis specialist, again the GP was unhelpful telling me there was no such thing. So I went onto the internet and found the scoliosis association in the UK, a quick phone call and I had the names of a couple of Consultants. I also had a hernia operation around this time, and I asked the surgeon if he knew of any scoliosis specialists (he himself was a top surgeon in his area). He gave me the same names as the scoliosis association, so I knew they were the ones to get in touch with.

    At this time I was experiencing a lot of pain, the pain I get is on the right side of my back, sometimes below my shoulder blade, and sometimes onto of my shoulder (I think it's called the trapezius muscle). I decided to stat swimming, which I love and does help the pain ALOT! But I am now swimming over 1500m everyday to deal with the pain.

    So back to my GP again, and I requested to be referred to the specialist. But before this I had to go to physio so a physiotherapist could refer me! So I went to the physio and eventually got referred. 4 months later I got the appointment through (with Mr. O'donoughue), I went along had a x-ray, and the didn't get the see the main man as it was 5pm and his home time!! So I saw the registrar doctor who was not helpful, didn't listen, told me to get on with my life, nothing could be done, and I should exercise more (you could tell he didn't listen to what i had said).

    Eventually he said I could go for a scan that would give a more detailed look at my spine. So thatís what I did.

    When I booked the follow up appointment for the results of the scan I asked that I did not see that doctor, but the main specialist whose clinic it was. As you may be expecting, this did not happen. I got the same person who told me again nothing could be done. This time I must say he was a lot more helpful. He said I am too old for surgery (was 27 at the time), the pain I must deal with, and the curve was not that bad. He did measure the curve but I can't remember that he said it was! He also told me what type of scoliosis it is, canít remember that either . He said it was not the common one, and that it was in me from birth! He sent me to a physio, again! To help me strengthen the core muscles!!

    So what has happened since then, well....... nothing! I am still very unhappy in life; I spend 4 years at university to be design engineer to now find that sitting in a chair is painful!! In fact sitting, standing, and lying, almost everything causing discomfort.

    If I could turn back time and change things I would like to have been told at an early age what the problem was, and be given the option for myself as to what to do. I would have definitely taken any surgery had I known what it was I had, and how unhappy it would make me. I don't feel confident, I know I look different, I have a constant awareness of the scoliosis by the pain/discomfort I have in my shoulder/back. And I really really hate the fact that one muscle (right trapezius) is so much bigger than the left. All these factors add up and make me an unhappy person. I have a great girlfriend, good job, a loving family. The only person that really knows how much this effects me is my girlfriend. When I try to mention this to my parents, they just tell me that they can't tell I have scoliosis, and thatís not the point. It's how you feel in yourself!

    Sorry to go on so much, a lot of it you will probably be bored with, but it has helped me to get some of the frustration out! Oh if I could get my hands on the Doctor I saw when I was 13!



    A few questions!

    Like I said I am 28, and one of my problems with scoliosis is the muscle difference on my trapezius from the right side to the left. Does anyone know if implants can be use to compensate?

    Also, does anyone know who the best specialist is in the UK for Scoliosis, it can be a private doctor as i don't mind spending money if it will help me!

    Does anyone know of someone who has had a scoliosis operation as an adult?

  2. #2
    Join Date
    Sep 2003
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    Northern California
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    Hi Andy...

    There are many of us who have had scoliosis surgery as adults. I suspect that the problem is that your scoliosis is too mild to be considered surgical. That doesn't, however, mean that you don't have pain. Perhaps you should consider some of the alternative therapies available to deal with your pain. For example, check out http://www.yogaforscoliosis.com.

    Good luck!

    Regards,
    Linda

  3. #3
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    Oct 2006
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    Thank you for your reply.

    I only joined this site yesterday, and already i have been given more useful information than any medical professional has given me over the years!

    Advise to anyone not from the UK: Don't come to the UK for to see Dcotors about Scoliosis!

    Thank you again

  4. #4
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    Sep 2006
    Location
    Essex, UK
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    Hi from the UK

    Hi Andy,

    I am from Essex, UK and had surgery at the age of 15 at the Royal National Orthopaedic Hospital in Stanmore, London, I'm now 31.
    Whereabouts in the UK are you?
    I have to say that on first reading your post I am inclined to agree with Linda, that your Scoliosis is probably not severe enough to warrant surgery.

    However (I am not up on names of muscles in the body so don't know what the Trapezius is - sorry) there are certain parts of the body that can show Scoliosis more than others, one is having one shoulder higher than the other, sometimes this can be accompanied by having one hip appear higher than the other (my trousers always hang funny )
    Also one shoulder blade may stick out, commonly the right one, as is with me.

    I totally understand what you are saying about the pain contantly reminding you that you have Scoliosis and I knowfor sure you are not 'too old' for surgery, take a look around this site and you will find stories of people that have had surgery up to the age of 74!!!

    Surgery is a HUGE thing to undertake, I should know because I am due for my 2nd surgery(a long story) in 10 days time and it is scary, and the Doctors will not operate until curves reach over a certain degree, I 'think' its over 45* in the UK.

    Swimming is THE best thing you can do for your back, I was a very strong swimmer when I was younger, pre-op and because of the good muscle tone in my back my Scoli was not discovered until relatively late considering I had double major curve.

    I feel that if you are in a lot of pain you should seek to see a Scoliosis Specialist, there are also excellent centres for Scoliosis at Queens Medical Centre in Nottingham and there is another that slips my mind, but I will PM you the address for a British Site that might also be of some help to you

    One last thing, try not to let Scoli take over your life, you are otherwise fit and healthy, have a girlfriend, who I bet didn't even notice you had Scoli until you told her and as you said a good job and loving family, who incidently, if are anything like mine, will always say they can't see anything wrong because they love you

    Take care,

    Kat x
    1st Surgery in 1991 aged 15
    Fused T2 to L2
    'S' curve
    Before surgery T39 L49
    Revision surgery 6th Nov 2006

  5. #5
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    Sep 2006
    Location
    Essex, UK
    Posts
    41

    I really resent that comment!

    Hey Andy,

    Quote Originally Posted by andyw

    Advise to anyone not from the UK: Don't come to the UK for to see Dcotors about Scoliosis!
    I REALLY resent that comment! I know you have put a 'smiley' with it, but I feel really offended.

    I have had nothing but excellent care in this country for my Scoliosis and cannot fault the Surgeons or the doctors that have treated me, I also know for a FACT that there are plenty of others from the UK who have had the same experience.

    I have just taken the time to write you a long and detailed reply to your original post and now wish I hadn't bothered!

    Kat
    1st Surgery in 1991 aged 15
    Fused T2 to L2
    'S' curve
    Before surgery T39 L49
    Revision surgery 6th Nov 2006

  6. #6
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    Oct 2006
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    Quote Originally Posted by RoundTheTwist
    Hey Andy,



    I REALLY resent that comment! I know you have put a 'smiley' with it, but I feel really offended.

    I have had nothing but excellent care in this country for my Scoliosis and cannot fault the Surgeons or the doctors that have treated me, I also know for a FACT that there are plenty of others from the UK who have had the same experience.

    I have just taken the time to write you a long and detailed reply to your original post and now wish I hadn't bothered!

    Kat
    Sorry you feel like that Kat, but i can only talk about my experience. I was told at an early age to get on with my life as the problem i had would never get worse and would not stop me from doing anything, and now i am in pain and constant discomfort (don't even like hugging my girlfriend because it hurts). Everywhere i turned to for help (medical professional) just turned me away and said there are no surgical operations for scoliosis!! Would you say this is good advice?

    I have been to the Orthopedic hospital in Oswestry when i was young and more recently to the Royal Liverpool Hospital. I have seen 6 GP's, 4 Physios, 3 Chiropractors, 3 Orthopedic specialists and one neurosurgeon, ALL of which told me that no surgery was available for scoliosis! Do you see why i feel like this?

    Again, i am sorry it offended you or anyone else who reads it. It is just my opinion based on what has happened to me. It is nice to hear encouraging words from you, i hope you still mean them? If you could give me the name of the doctors you have been dealing with i would be very grateful. Like i said i am only 28 (not sure why it says 29 on the title ) and it has got so much worse for me over the past few years, i am dreading what it will be like in the future.

    Good luck with your next op.

    Andy
    Last edited by andyw; 10-29-2006 at 06:06 AM.

  7. #7
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    Sep 2006
    Location
    Essex, UK
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    Quote Originally Posted by andyw

    I have been to the Orthopedic hospital in Oswestry when i was young and more recently to the Royal Liverpool Hospital. I have seen 6 GP's, 4 Physios, 3 Chiropractors, 3 Orthopedic specialists and one neurosurgeon, ALL of which told me that no surgery was available for scoliosis! Do you see why i feel like this?
    I have no idea of the reputations of the hospital you mentioned, but my Gp of recent years said that the local hospitals will not touch Scoliosis as it is specialised surgery.
    Maybe I was 'lucky' when I was 13, that my Gp back then had heard of Scoliosis and knew what it was then and then referred me to the best Hospital in Europe, but you cannot then tar all UK doctors and hospitals with the same brush just because 1 person was not told the correct information.
    I have a sneaking feeling what they actually told you was that there is no Surgey for your Scoliosis because back then it was not severe enough, that is different to being told there is no surgery for Scoliosis per se.
    You made the UK medical system sound like it is in the dark ages. Ok I know it could be better, but where else in the world do you get treatment for free?

    One more thing, no chiropractor or physiotherapist in their right mind is going to say 'Yes have surgery'
    Why? Because they then lose your business!

    I did mean those things when I wrote them, but you got my back up because the RNOH is a fantastic Hospital, the best for Scoliosis in the UK and possibly(It used to be 15 years ago) the whole of Europe, it is a teaching hospital as well which says a lot for its reputation.

    There is a good chance, if you are in as much pain as you say, that your Scoliosis has gotten worse and that you should be seen and have a new set of x-rays done. You didn't say where you are in the UK so I can't tell you the best surgeon in your area, but my surgeon is Mr Harrison at the RNOH.

    Just ask if you want to know any more.

    Kat
    1st Surgery in 1991 aged 15
    Fused T2 to L2
    'S' curve
    Before surgery T39 L49
    Revision surgery 6th Nov 2006

  8. #8
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    Oct 2006
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    Kat

    I was definitely told there was no surgery available for Scoliosis, regardless of how severe mine was, that is why i am so unhappy with the way i have been dealt with.

    I am from Cheshire, but would travel anywhere in the UK (or world) to speak to a doctor who can help me. Maybe i can't have surgery, but i just want someone to spend time discussing it with me, not just rush through the appointment and send me off for more physio (which cost the nhs money and doesnít help me, but maybe it does for some people).

    Going to my GP again next week to ask for another referral, might try to get one at the RNOH.

    Andy

  9. #9
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    Sep 2006
    Location
    Essex, UK
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    I think you should try the QMC in Nottingham as its not so far to travel, I know of several people who have had excellent treatment there and I will be able get you the name of a good surgeon, but I have to go out now, so I will get back to you later!

    Kat
    1st Surgery in 1991 aged 15
    Fused T2 to L2
    'S' curve
    Before surgery T39 L49
    Revision surgery 6th Nov 2006

  10. #10
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    Oct 2006
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    Thank you for your help

    Andy

  11. #11
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    Nov 2004
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    U.K.
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    There is definitely surgery for scoliosis in the UK when you are an adult! I had mine done in February this year in South Wales and I was 42 at the time!

    I think that earlier writers may be correct in saying that the degree of your scoliosis might not be enough for a surgeon to normally consider surgery. If you have curves of under 50 degrees, then it is not normal practice to make anyone undertake such major surgery and it is possible that the doctors etc simply expressed themselves badly by saying it was not an option (meaning it was not an option for your particular case).

    I would recommend Paul Davies who works at the Heath Hospital Cardiff and at Llandough but you will find many other recommendations from people on the Scoloiosis support website which is much more UK based.

    http://www.scoliosis-support.org/

    Good luck.
    Double 63(T)/75(L) deg curve with big sideways shift - Surgery in UK on 8th February 2006.
    Post op 30(T)/33(L)
    http://warpedwoman.blogspot.com/

  12. #12
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    Sep 2006
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    27
    Surgery is usually only advised for curves that are 50 degrees or more. Most people have the adolescent idiopathic type whereas you state you were born with it. I don't know how different things are for this kind of scoliosis. I think at some point you just have to decide to move on with your life. There is nothing wrong with seeing more than one doctor but if you have already been to some of the most renowned specialists in the country then you need to draw a line under things.

  13. #13
    Join Date
    Jan 2007
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    1

    Keep trying

    Like i said i am only 28 (not sure why it says 29 on the title ) and it has got so much worse for me over the past few years, i am dreading what it will be like in the future.
    Reply to "I'm 29 with scoliosis from UK"

    I was interested in reading your well composed story at the beginning of this thread. I hope you have not stopped checking for replies. Do not give up on your struggle to stay out of pain. You owe it to yourself to find out as much as possible about your condition and to stay on top of any new developments during your lifetime. If you can't find the cure you want, you may be able to find a way to keep your condition from progressing. I have been in several car accidents and each compounded my problems on top of my mild lumbar scoliosis.

    The reputation of a hospital is made by the individual doctors employed at the time. Find the name of the recommended doctor, not the hospital. If there has been a staff change, there is possibly an attitude change.

    The miracle cures are well covered in the media. Do not be disappointed if you cannot find one instant solution. There are many more cures being researched. People who are searching for help are probably quietly in the majority. I saw about 18 physiotherapists and chiropractors before finding one physio who could accurately interpret my x-rays and give me advice that worked. By that time, I was 38 years old. The advice was not for the scoliosis but it enabled me to manage one source of my back pain making a big difference to my quality of life. By that time I had incurred a whiplash.

    Whiplash is another condition that most of the medical profession does not believe causes pain or disability. Same for spondylolisthesis, repetitive strain injury and irritable bowel syndrome. There are many more.

    It is sadly amusing that an athlete like yourself would be told by a physiotherapist that you need to strengthen your muscles. Being told you're weak infers guilt for your own situation. It is true that we will suffer more than a person with a normal back if we get out of shape. But getting into shape will not cure the root cause.

    When I was 26 years old I was told by a physiotherapist that I had to accept that I was getting old and back pain would be part of my life. She was newly graduated and about three years younger than myself. That outrageous beginning on my medical quest was funny at the time but hearing skeptics and disbelievers and bad advice became increasingly disheartening over the years.

    I have also learned to be careful about giving advice to other pain sufferers. A couple of people tried what worked for me and got hurt. Keep trying.
    Last edited by Spicy; 01-09-2007 at 09:44 PM.

  14. #14
    Join Date
    Mar 2006
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    14
    now then andy, i'm your age and when i read your post i nearly cried which i just dont do. your experiance is almost the same as mine only i knew what i had and the incompetant doctors we have to endure here in the uk argued that i was perfectly healthy and nothing was wrong. maybe if i had parents who were loaded and paid for treatment from the start it might of been differant. i read a little of what kat had posted and frankly she made me feel sick. my experiance has been with hundreds of doctors and they back each other up even when they are wrong. i'm taking a few of those to court and hopefully they will be struck off.
    if the doctors here are so good then why are there so many scholiosis sufferers who have been misinformed and whos illness has been ignored.
    i'm not the exception the people who are treated for this are!!!!!!!!!!!!!!

  15. #15
    Join Date
    Feb 2007
    Posts
    8

    UK surgical advice for scoliosis

    We were lucky in that our GP spotted daughter's scoli straight away when we visited him for a "one shoulderblade sticks out oddly" problem -and referred her to an appropriate specialist. She was monitored for a year and then when the curve worsened suddenly, referred for surgery. The standard of care in the hospital (Royal Orthopaedic) was excellent.

    Talking to the other scoli mums and dads in the hospital last month during the surgery and recovery, it was regrettably apparent from this small sample that some GP's in the UK seem to be very poorly informed about scoliosis. One child had been treated (or rather not treated) for two years for "bad posture"! The bottom line is that there are only about 30 scoli specialists in the UK and you need to see one of those - pay if you have to - get the answers you need to get on with your life. Trust the advice they give you, but ask questions intelligently and be prepared to challenge how their advice works for you. You need to become an expert on your own condition.

    The rage that is fuelling you will not help you to stay healthy. Use that energy in other ways.

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