I have chronic body pain years after scoliosis surgery

I am 54 years old and had Scoliosis surgery when I was 14, I had the rod and fusion. One year later I came down with a staff infection in my back from the rod, it was removed and I was OK for a long time.
Over the last 4 years I have experience a lot of lower back pain, just as others have had. I did have L4-5 fused and rod in 2006, but seemed ok. I am glad to know I am not alone, this pain is real and puts a damper on your life style. Any help would be welcomed.
P. T.

Jess, your note was extremely helpful to me. I'm turning 50 in a few weeks, had my Harrington Rod surgery when I was 12. The pain has gotten increasingly worse over the years...the worst part now is that walking has become very painful. I live in NYC with the best doctors in the world and have not been able to find anyone to help me. Doctors I have seen only want to prescribe pain medications and I refuse them. I try to make lifestyle choices to help me but seems like nothing seems to help very much. I'm not a fan of lawsuits but I can say that I would be very interested in a class action suit. I often think about how my life (and my career) would be different if I never had this surgery.

Funny, I've been thinking the same thing. I'm doing all I can to keep working. And I managed pain for years with massage and stretching . X-rays do not show anything wrong with my hardware, fusion at 14, I'm now 42. All but top and bottom six vertebra. While I've always had a normal active life it all changed this year. Started with sudden onset of extreme ankle pain, that took over my feet, it's always there. Then my loser back started hurting real bad and won't stop. Unexplained inflammation in lower back. Now my shoulders and neck. Rest does not help, stretching does not help. I see in the x rays I almost have a v between the lowest vertibra and tail bone from the fusion. Doctors keep offering pain meds, but I just want to know how to make it better. Nobody seems to think anything can be done. I feel wrong for feeling like a victim who should be compensated enough that I won't lose my home if I have to go on disability for 1/3 what I make working. Nobody told me that my entire body would hurt so bad when I aged that I'd suddenly be crippled. Guess I'm just frustrated and heart broken.

I would love to hear more about your story. I too have scoliosis and Harrington rods. At age 65 I feel just as bad or worse than before the surgery.

Since you live in NYC, I was wondering if you had contacted Dr. Thomas Errico at NYU Langone Spine Center? He's been recommended by others who've had issues with post-spinal fusion/Harrington rod.

I've had a broken Harrington Rod since approximately 1982. I have pain on a daily basis. Has anyone heard anything more about the hardware being the subject of concern?

I am experience the same type of pain. Some days it hurts to have someone touch my skin. I have pain in every joint. Some days it seems the only thing that doesn't hurt is my head. I have found a scoliosis specialist in nj that is covered by my insurance but he will not see me until i complete physical therapy, get injections and if that doesn't work i need notes from the therapist and the pain management doctor with a new mri and then he will see me. I was very athletic 2 years ago and now barely can walk. I am on long term disability and i am praying that i find a fix to this pain.

Hi, my name is Britney. I'm 15 years old now, 16 in june and i had corrective surgery for my scoliosis when i was 12. im in constant pain and my back hurts all the time and i dont know what to do

Aww, I'm sorry to hear that you're still in pain after 3+ years post-op. You should not be hurting like that at this point. Something is wrong. Have you seen your surgeon for a follow-up visit recently? If not, please have your mom or dad call for an appointment asap. They will need to do new imaging and evaluate your current condition. When I had my spinal fusion and rod, I was not hurting 3 or 4 years out from surgery.

Thank you, i will do that immediately

Please let us know what your doctor had to say. Make sure that your parents say that you are in pain. That may get you in faster. Also, most doctors have a cancellation list. Be sure to get on that, too.

Melina. H.
I don't think its right for you to make a judgement telling us to "harden up and be thankful". We're "moaning"??? That was an incredibly cold thing to say to those of us who are in horrific pain every single day. I'm glad you're not feeling as "uncomfortable" as we are. Try screaming, burning and unbearable sharp shooting pains 24//7/365. Your day has not fully arrived, so you really don't have a clue, much as you think you do. Mine was done in 1980 when I was 17, T2-L4 - so many horrific details in the 38 plus years I've been imprisioned by pain. I didn't have a choice, I was a minor. They lied to make a name for themselves with experimental surgery. You're young, comparatively speaking. Wait a few more years, damage has already been done unfortunately for all of us.

Nothing wrong with thankfulness, but when you're left for dead and ignored like many of us are because they can no longer make money off you; when you are destitute financially and driven to ruin; when the insurance runs out and they turn you away for fear of liability; when one organ after the other gets removed because of infection; when you're liver is trashed by the NSAIDS they said would help but only served to kill you another way, when you're laying there confined to your bed like some of us are on most days; when you've lost everything except God... come back to the board and criticize us some more. By then, I pray, you will be a little less arrogant assuming we have jobs,(LOL), and a lot more compassionate because you have no idea what awaits you.

In spite of the inference, I don't wish any of this on you. In fact, I wouldn't wish what we go through on my worst enemy. And when you come back and realize how offensive to the core you were to people you don't even know, I'm sure we won't treat you as disrespectfully as you've treated us. By the way, it was never about the vanity of "looking normal" for many of us. It was about the better quality of life we promised and robbed of... given no recourse physically, emotionally, or financially to carry us through coping. I feel sad for you because you could read all the comments and still you chose to make yours.

Luke 6:37

Go to ***this post is edited by moderator *** *** posting of web addresses is not allowed*** Please read our Terms of Use in the search tool. I truly hope it works for you. It's too late for me but I found information on it today so I thought I would pass along to anyone it might benefit. I'm 55 now, had mine in 1980.. Been over 38 years; T2-L4 - God continues to sustain but... it is a horrible thorn. The list of problems since initial surgery is just to long and depressing to reiterate. Without the Lord, I would be lost. Bittersweet finding the articles and all the studies they KNEW about.Greed is a terrible thing. It's big business. Depressing to realize (for me) when everything seems within reach and yet beyond grasp. I hope the video encourages you and you find relief soon ...and get the life you deserve. Prayers.

My name is Lynn and I was diagnosed with scoliosis at 11 years old and went to shriners Hospital a few years ago when I was 15 years old and I too have the Harrington rod,I hurt on my lower back and my me hip where the bone was taken out to hold rod in place and it hurts there the most,cant stand the pain everyday... it hurts to stand or sit for a long length of time.

I had the the same surgery when I was 12. The Rod brook when I was 28 and the removed it and told me they ere replacing it. When I woke up I found out I just go a full fusion. Now by Neck and shoulders and upper back are always killing me and my arms and fingers get numb . The have sent me to Physical therapy,and physical Meds but it just mask the pain for few weeks then I'm back to pain. You would think that they would have new treatment buy now to straitened the spin that not so invasive but I haven't found anything.