Posted , 4 users are following.
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
0 likes, 10 replies
Zabe
Posted
Lawyer Zabe
Posted
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 Zabe
Posted
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 BizzieIzzie
Posted
BizzieIzzie Zabe
Posted
stacey87853 Zabe
Posted
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
Stace x
Zabe stacey87853
Posted
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 Zabe
Posted
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
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 stacey87853
Posted
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 Zabe
Posted
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