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losing patience and feeling more pain

Posted , 4 users are following.

Zabe
Zabe

I'm 16 years old and I was diagnosed with idiopathic lumbar scoliosis in October 2013. They told be that my growth plates were closed (and had been for years) and that my curves shouldn't progress and I wouldn't need bracing (my curves were 21 and 29 degrees). I'd only noticed the scoliosis because one of my hips stuck out and it was uncomfortable to sleep certain ways.

I had a check up 6 months(April 2014) later after complaining of a lot of pain. The doctor did X rays and my curve had gone from an S shape to a C shape, my hip was sticking out more and my top curve (21 degrees) was almost straight, however the whole spine was bent. The doctor didn't tell me what my degrees now were but they couldn't figure out why it had changed. I had an MRI, CT scan and bone scan after a suspected tumour. I was put on naproxen and told to wait 6 months when they would consider surgery (to remove the 'tumour' or to correct my spine). I had (unsuccessful) physiotherapy. I moved from Canada to England in July 2014 and had to start all over!

I had X rays and was told my curve was deteriorating but they didn't know why. I increased my naproxen as the pain was getting worse. I was sent to another specialist in a different city so he could look at me and he said he had no clue and said I had non - structural scoliosis. He said he's only seen it a few times and some cases had been solved my exercise and physiotherapy. And by simply sticking my hip in and correcting my posture (which I can do, but it hurts very much - which is what made him think that it's not structural scoliosis)I'm still not an applicant for surgery.

I was in (unsuccessful) physio for 2-3 months and have to do an hours physio three times a day.

My physiotherapist said I had a collapsed arch in my foot (which led to bad knee problems I've had for a long time) and my previous physio said I had an unbalanced pelvis. I'm scheduled to get a lift for my shoe, because I can't walk long distances (and I love to hike).

My pain is still bad and I do exercise (pilates, yoga, swimming, workouts etc) but there's only so much I can do before I feel physically sick from pain. It has affected me physically and mentally, especially as a teenage girl.

I'm not due for a checkup until August and I know that they'll tell me to continue what I'm doing now. I'm tired of not being a priority and tired of not being able to be told what's wrong with me. It is so frustrating (as I'm sure you all know) and it bothers me more and more each day.

There wasn't really much point to this, I just needed to tell somebody (as my family and doctors tell me that I'm lucky as I could have it worse).

But I was wondering if anyone has any advice for pain management? I have a tens machine and use heat/cold. Some people have recommended taping (or is that just for people who've had surgery?)

Thank you smile

0 likes, 10 replies

10 Replies

  • Zabe
    Zabe

    Posted

    I don't know how to edit it, but would an exercise back brave work at all? My pain is slightly relived with that sort of pressure so would it be worth it during workouts?
  • Lawyer
    Lawyer Zabe

    Posted

    How awful at age 16. I am not a medic, and my problem is Scheuermann's kyphosis rather than scoliosis. However, I pass on a few thoughts in case even one is of use.

    Age may be to your advantage. Your bones are still growing. It may be possible to 'train' them in the right direction.

    It sounds far too bad for correction by physiotherapy. This sounds like a cop out to keep you quiet. Physio helps me manage it rather than cure it.

    Pain relief: get something. Do not put up with it if it is bad I.e. interfering with routine life. I use Bu-Trans patches. Yes, I do not like it, but I can get about almost normally for which I am very grateful.

    Naproxen: Take care. Anti - inflammatories are useless for bone problems; they are relevant to muscles. They did no good for me and gave me duodenal ulcers- 6 months after stopping Naproxen they are still not fixed.

    Doing nothing until August sounds pointless. It is not going to get any better just by waiting and doing nothing. Have you insisted on seeing a specialist rheumatologist who will give you some straight answers as to what if anything can be done? 

  • BizzieIzzie
    BizzieIzzie Zabe

    Posted

    Hi Zabe, I am in a very similar situation myself - I am a similar age to you and have severe scoliosis. My scoliosis is relatively rare in that I also have kyphosis and lordosis, as well as it being structural so I have a twist. Like you, I have had some awful pain - without pain meds the most successful way of pain relief for me is definitely heat - it relaxes the overworked muscles and means that I can have a short break from the pain.

    Physio sounds to me like a bit of waste of time, but then I'm not a doctor! I myself tried for a year with no success so I am now scheduled for surgery in early July this year but it may work for you!

    I would definitely talk  to a pain management specialist, as mine is absolutely amazing and has helped to manage my pain in the run up to my op a lot better thn it previously was,

    If you every need to vent, I'm always here!

    Izzie xx

    • Zabe
      Zabe BizzieIzzie

      Posted

      Thank you and good luck, I hope your surgery goes well and it all gets sorted out!
  • stacey87853
    stacey87853 Zabe

    Posted

    Hey,

    Im 25 and have kyphosis and scoliosis, ive had 7 ops, still have a 78° curve and a big hunch in one side of my back...

    Its cr*p, i hate when people say things like it could be worse,i know others do have it worse but that dosent mean we dont suffer with what we have...

    A lot of Drs say scoliosis isnt painful.i think there crazy how can they think your bones twistingand curving(also pulling other bones out of place ) dosent hurt?

    Ive wore plastic braces and plaster braces from age 5-11 they didnt work. Physio hurt me more,

    Do you mind saying what hospital your under? Im under Dr nordeen at stanmore hospital (near london amazing hospital) i was at southampton general until age 14 but they messed uo first few ops (hense the curve and hunch still)

    Ask yoy GP to refer you to a pain specialist who will talk through all pain with you and help you get a plan and decent pain killers to help...

    Sorry for long msg and bit of a rant,you just took me back a few years reading your story smile

    Stace x

    • Zabe
      Zabe stacey87853

      Posted

      Oh my gosh! People olive yourself (with such a big curve) make me feel so guilty for complaining.

      I really hope that you can get your back completely sorted out, that sounds awful.

      I was at Liverpool Alderhey, but now I'm at Manchester under Mr. Oxborrow. He's a scoliosis surgery specialist, but is reluctant to give me surgery because he thinks that I can fix the scoliosis myself.

  • stacey87853
    stacey87853 Zabe

    Posted

    dont ever feel guilty, youve every right to feel sad,worried,angry or however you want wink you ave so many problems that contribute to your curve.

    What is taping? have you got a v shape pillow? i find this helps with sleeping as youve many ways to put it to help you get comfy. I also have an electric blanket when my backs very painful i get in to bed with it on for an hour of so and the warmth seems to help (sorry for any spelling mistakes).

    Have you tried asking your GP for different pain medication? try and get them to refer you to a pain clinic (you sit down with a specialist and they help you come up with a plan to help with the pain,they prescribe pain killers and nerve damage meds)

    Has your tumor been removed yet? Poor you, so much to deal with at a young age....your doing great smile

    Where abouts in the uk are you now? 

    Fee free to msg any time and would be great to hear how you get on in August..

    Stacey x

     

    • Zabe
      Zabe stacey87853

      Posted

      After my scans in Canada, my doctor concluded it wasn't a tumour, after the radiologist said it wasn't (my doctor hadn't even seen the scans). My specialist in Liverpool said it was nothing (he said what it was but I can't remember the name haha) and I've been told I have lots of little cysts on my spine, which is why they thought there might have been a tumour.

      I'm disappointed as I had all of the symptoms of this tumour and the doctor had me convinced I had it, and that when he removed it, the scoliosis and pain would be gone.

  • stacey87853
    stacey87853 Zabe

    Posted

    sorry just relised you sai your in liverpool....you can always get a second opinion if your not happy...i did and am so glad i did..xx
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