I have chronic body pain years after scoliosis surgery

Try to go to see a doctor and have new xrays taken. It is extremely helpful to take your old xrays. I was charged 800 by a man in the ER that literally told me at the age of 21 (8yrs post-op) "that I had no idea what real pain was". Anyhow, I obviously do! I have 2 curves, upper was at 87 and lower was at 82 at time of surgery. I have 2 bars and screws in my hips that attach springs to the rods in my spine.

My upper rod is moving away from my spine causing a sharp ache. The screw is screwing its way out of my left hip, a burning sensation. I can't work, I can't ride my bikes, some days I can't even move.

Removal or a lifetime of morphine patches and/or oxycotin are my choices.

WOW. Your symptoms sound like mine. I am 10 yrs post op. I was 12 when diagnosed and had surgery. I was fine for the first 5 or so years and was very active. Went hiking, ran track in high school, could out-run a lot of girls, swam, lifted weights, etc. The doctor told me all of this was fine to do. Now a little over 10 years post op I am in so much pain I can hardly make it through a day. My pain is every day, all day! I feel like no one understands how much pain I am in. I am not one to complain so I don't say much about my pain, but the pains I do have bring tears to my eyes. I have sharp shooting pains around my hardware, throbbing pains, shooting pains down my legs, arms, and up my neck, I also have lower back pain. I am also having serious headaches. (Not sure if the headaches are related but it’s the same sharp shooting pains that I have all over my body) I also have noticed the hump in my shoulder is getting extremely large and worse as the years go on which makes me think my curve is getting worse or something is moved. Some people have told me I don’t know what real back pain is and since I never have pain and was so active after surgery…people don't believe me that I'm in so much pain. By the time I get myself ready in the morning my pain is so bad I’m ready to lie down because my back and shoulders are so sore. Have you found any answers?!?!

I read somewhere that the rods can actually "rust" inside of your body even though they are titanium. I had my surgery preformed at Duke Children's Hospital when I was 13. My doctor was one of the top rated pediatric sugeons in the southeast. So, he told me that your body after a while (10+ years) will try to "remove" the hardware itself. My top rod is dislocated from my spine and the left hip screw for the bottom is "unscrewing" and causing scartissue to lay heavy on a nerve. In many cases, this is what causes pain. So, your only choices are to either remove or go on pain meds for the rest of your life. Removal isn't as bad as placement, unless you have the surgery "redone". During plain removal, they make small incisions at the problem spots and remove hardware that is easily accessible. The recovery time is about a third of placement, about 4 weeks total, with maybe 4-5 days bedridden. After removal, it is possible to regain curves, therefore, it is best to wear a brace. The brace can usually just be worn at night to keep the back from recurving.

The worst part, scoliosis surgery patients usually lose about 15 years of life :( didn't find that out till about 2 years ago.

Hi Amy,

So sorry to hear you are in so much pain.  I can certainly relate - I am now 34 and had spinal fusion T3 to L4 for scoliosis about 12 years ago.  My pain is constant, deep, exhausting, and affects how I live every day.  Although I still manage to hold down a full time job, some days I feel I am wearing a "happy-mask", pretending everything is hunky-dory while I feel like I am crumbling away.  I have trouble walking some days, other days I have trouble standing still.  Many days I can hardly concentrate to sit and watch a movie, let alone do a report etc for work.  On the worst days I lie in bed and cry and wonder if I should have ever had the surgery after all, it's almost a sense of guilt and it's overwhelming.  Over the years I have tried just about everything, from meds, acupuncture, physio, chiro, even had a woman chant over me once calling on spirit guides to help (seriously!). I know what its like when no-one seems to understand, but I do, so I offer you a few ideas below that have worked for me.

Firstly, ask your GP to refer you to the best spinal surgeon you can find in your city.  You need someone who is specialised to run x-rays and scans to make sure there is nothing actually wrong with your hardwear.  If at the end of it all, they say nothing is 'mechanically' wrong, don't think that is the end of it!  Your pain is REAL, and you need to delve further.  Next, you will need to find a good pain specialist.  I have seen both specialists who deal with the psychology of pain, as well as those who can offer long term relief with rhyzotomies (facet injections) etc.  A specialist psych may help teach you relaxation exercises to help you work through your pain.  Mine taught me a great technique that helped me pace myself so I didnt push myself to the point of agony (the idea is to stop well before you get that far).   A (non-psych) Pain Specialist may suggest a rhyzotomy to give you long term relief (mine normally lasts 4 or 5 months) without having to chew pain killers all day.  Finally, try to find a specialist physio.  Research on the net, checking the relevant professional body for your country.  Do'nt just go to your closest clinic, they may just give you exercises and techniques that work for 'normal' backs, and will most likely cause you additional pain.  Find someone who has dealt with spinal fusions and chronic pain. 

I hope this helps, best of luck to you.