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Scoliosis but don't seem to be getting much help from doctors

Posted , 6 users are following.

scott1757
scott1757

Hi I'm a 28 year old male and I have been diagnosed with scoliosis according to the doctor I've had it since I was young but no one picked up on it. My spine is an s shape and also my rib cage sticks out a lot on my left side. I've been told something different by every doctor I've seen. I've been told by 2 doctors I should stop doing my job (ground work) and have now been told by a different doctor today that I'm fine to carry on doing this job. I'm in constant pain in my lower back the pain is like burning and the right side of my lower back gets very swollen. I can't stand up for too long, sit down for too long, bend over or lift anything heavy without being in agony. The doctor I saw today has told me the pain in not due to the scoliosis but didn't say what the pain is or why I'm having it. I've not had any X-rays or scans and I've not been referred to a back specialist. I would like to know if anyone knows what this pain is and why I'm having it, if it's safe to carry on doing the job I do and what I should do next.

Thank you

0 likes, 13 replies

13 Replies

  • chris00938
    chris00938 scott1757

    Posted

    Scott I'm so sorry to hear about the awful pain you're in.  I'm no expert but fumbling through on my own scoliosis (not as bad as yours, I'd guess) led me to a TENS machine.  That worked miracles for me and after using it for a few days the pain went for ages until I went to physio which started it up again, but a few days of the TENS again sorted it.  I THINK it's because my pain was down to trapped nerves because of the scoliosis.  IF yours might be the same cause, it might be worth a try.  I hope you can get something to help, anyway.
  • Jay91157
    Jay91157 scott1757

    Posted

    Scott, You do get pain with scoliosis so don't be told any different. I see the top consultant at Stoke Mandeville Hosptial, world famous for its spinalunit.The first question I was asked was  I getting any pain? Yes I was.  Your job is a problem as every time you jolt the spine it is like sending a thunder bolt through it. It does sound like what Chris is saying is correct. I had sugery this year and right now am suffering much the same as you. I have even had problems bearing weight on my left leg. The physio think it may be a trapped nerve, so  today the physio dept loaned me a tens machine. I would ask to be referred to a scoliosis specialist, that is your right. Doctors do not have the in depth knowledge for this condition. I assume you do not know what degree your curve is either. Generally 40- 50 degree curve they consider operating. Push to see a consultant and then you will get x rays and probably an MRI. Best Wishes
    • scott1757
      scott1757 Jay91157

      Posted

      Hello Jay, thank you so much for getting back to me. No I have no idea what degree the curve is all I've been told is its severe and that it's caused my ribcage to twist. I've been told I will probably need an op but absolutely nothing is being done about that. I've also been told by 2 of the doctors I don't need to have X-rays or a mri because they can see just from looking at it how bad it is but I don't feel completely satisfied with that. I'm going to try and see another doctor and push for a X-ray and a scan because I just have no idea where to go from here.
    • chris00938
      chris00938 scott1757

      Posted

      Just another thought Scott.  Has anyone checked your leg lengths to see if they're both the same length?  I was told one leg was 2cm shorter than the other so needed the shoe raised on that leg, and was told that would help to stop the scoliosis getting worse.
    • Jay91157
      Jay91157 scott1757

      Posted

      HI Scott, Scoliosis can be detected by the simple test of bending forward and touching your toes with straight legs. It will show the hump on your back known as the Cob. You say your rib cage is twisting, again this is normal for a scoliosis patient. Although your doctors can telll by looking at you how bad it is they cannot tell by the naked eye how big the curve is. They can estimate it but only xrays and Mri will conclude that. My curve was 71degree top and 48 degree bottom. Due to time my back naturally stiffened up and so when surgery was done in Feb they could only correct top curve to 38degree, bottom curve nearly straight. I would suggest you start researching consultants in your area who specialise in Scoliosis, or look on Scoliosis web site. I also looked on BMI hospital web site as many of those surgeons work in the NHS. I would then return to your GP and ask for a referal, they cannot refuse, it is your right to have medical treatment at all levels. It will probably take months for this to come through anyway. You have to be forceful or take someone with you who is. The build up to surgery takes months as many test, x rays and MRI's have to be done, and it is  definitely not to be taken lightly. Try and get somene to  take some photos of you standing and bending with no top on. You will at least get a sense of how much your scoliosis looks like. Don't let your GP fob you off as the longer it is left the worse it will get. Nothing stops Scoliosis except surgery. The spine keeps bending but noone knows at what rate. This can only be monitored by the specialist. Chris has a good point about the  leg length, but not everyone gets this. I certainly did not.

      Just another thought Scott, I  initially saw my consultant   in the private sector through BMI. It cost me £250 and an xray approx £50.00 he then discussed the possibilty of surgery and then transfered me over into the NHS. It might just be another route you could consider.   It took just over a year from seeing him to surgery on the NHS in my area. I am assuming you are in the UK. Another reason your GP's may not be wanting to refer you is the cost will come out of their budget, if you decided to have surgery.  Let us know how you go. Best Wishes

    • scott1757
      scott1757 Jay91157

      Posted

      Thank you for taking the time to write this it's very much appreciated and I'm going back to my doctor as soon as possible
    • sarah35048
      sarah35048 Jay91157

      Posted

      Hi Jay,

      Would you be able to let me know who your consultant was?  I was diagnosed at 11 but told nothing could be done.  I'm 42 now and generally keep myself fit and healthy, but after having my second baby my curve got rapidly worse and the back pain less manageable. I can't exercise for fear of doing more damage and in the last 4 months my top right hand side of my back has just popped right out and i now have a hump which is visable under a t shirt and it wasn't at the beginning of this year.  I'm scared to go down the wrong route and just hit brick walls.  It effects my every day life, my family life and my personality.  If you've had a good experience with a consultant would you share his/her name?

  • anthony35638
    anthony35638 scott1757

    Posted

    I am 6 weeks post op an for many years was told that my constant pain an tight chest was not due to my shermans deases (curviture of the spine) since my opp my breathing is much better an have had no pain.(other then tender scar) i am 18 an hoping to be back in the ring at the 6 months post opp

    I would seriously consider surgery,of course this is just my opinion

    Best of luck mate

    • sarah35048
      sarah35048 anthony35638

      Posted

      Hi Jay,

      Would you be able to let me know who your consultant was?  I was diagnosed at 11 but told nothing could be done.  I'm 42 now and generally keep myself fit and healthy, but after having my second baby my curve got rapidly worse and the back pain less manageable. I can't exercise for fear of doing more damage and in the last 4 months my top right hand side of my back has just popped right out and i now have a hump which is visable under a t shirt and it wasn't at the beginning of this year.  I'm scared to go down the wrong route and just hit brick walls.  It effects my every day life, my family life and my personality.  If you've had a good experience with a consultant would you share his/her name?

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