Does anyone suffer scoloisis??? If so what is their pain like??????

I got diagnosed with scoliosis about 20+ years ago. They didn't know how to help me as scoliosis was an unknown I illness then. The doctor who diagnosed me also told me , my top bone in my neck was missing. I coped as best I could and slowly the pain got worse so I went for some physio on my back. Only to be told that I have a second curve at the top and that the curve at the bottom is noticeable. That was a couple of years ago.

Since then I have been to different hospitals but they all say that I could learn to stand up straight or do exercise and my scoliosis will disappear.

I have now found a scoloisis specialist in Manchester with the help of the scoloisis association but my doc is hesitating sending me there as he thinks my scoliosis isn't severe enough.

The pain I suffer is unbearable and most days I can hardly move as my back has locked.I'm on strong painkillers but they are not working as well as they used to.

Any suggestions about dealing with the pain and trying to change my doc mind?????

Please can anyone help???? As you can tell I don't sleep much.

7 Replies

  • Hi There, I have scoliosis...diagnosed in 1979. I had a 60 degree angle curve on top and a 45 degree angle curve on the S curve. In 1982 I had rods inserted along my spine on either side to straighten the about 15 degrees. Was amazing surgery. I walked out of the hospital in 6 days...of course I was 19. The rods(nor the inability to arch or bend) kept me from anything. I ski, golf, did kickboxing for 10 years, anything I wanted. Now, 30 years later the two discs beneath my rods have worn away causing pinched nerves. I was VERY active all of my life even with the rods. I had a double spinal fusion for those two discs 4 wks ago. I am already walking 2 miles a day and the nerve pain is gone. Surgery does not have to be negative. Has been most positive in my life. My scoliosis was "watched" for a couple of years and just continued to progress, despite efforts to wear a brace. So surgery, for me, was the most viable option. Had it done at Stanford Hospital in CA. My recent surgery was there also. Hope any of this info helps. Sorry you are in pain.

  • I'm 41 and I had surgery twice in my teens (14-15) to stabalise/correct my scoliosis. I had a bone fusion as the rods paralised me. I wore a plaster jacket for 9 months and had check ups every 3 months. I then went on to have one further surgery in 2000, where I had some small rods inserted, and wore a brace for 6 months. I was able to have a baby in 2002, delivered by Caesarian under general anaesthesic. I suffered much more back pain during my second pregnancy in 2006 though. I do experience a fair bit of back pain. I now have an ongoing hip problem that is not considered to be connected to my scoliosis. If you'd like to chat to me at any time, I'm happy give you my email address. Take care x

  • Hi Pixiemite, they reckon my scoliosis start as I was growing up as I was a cyclist from age of 9, so I was bent over as I was growing. I was diagnosed in my 20s by a doctor at Southport Hospital and told that he would operateon me but before he could he died so nothing got done that was 20+ years ago.

    Since then I've learnt how to cope by doing things my way. Then a couple of years ago the physio found a second curve at the top of my back. Both curves are visible so it classed as severe scoliosis and I've lost 3-4 ins in height but all I want is a referral to Manchester Hospital to see how bad my scoliosis is and whether they can give me something for the pain.

    That will be nice then we can have a good chat. I'm a single mother of 2 and 50 this year. X


    My name is Nicky, feel free to contact me x

  • Thank you, will do. Its nice to know someone suffers scoliosis pain like me and know what it feels like. Everyday is a struggle to cope and my Emphysema is getting worse. X

  • I had three children, no problem with any pregnancies despite the rods that were put alongside my spine at 19 yrs old. Did have 3 c sections under general anesthesia. By the way, I gained 2 inches in height from my surgery.

  • I have it but mildly in comparison with everyone else who has posted (no surgery, wasn't even diagnosed until late thirties). Most pain is in upper back / shoulder / face / arm but I have always been prone to low back ache. Working on my posture did help.

    Keep going back to the doctor and asking about the referral to the specialist. But try everything else they offer you as well.

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