Post-Scoliosis Surgery Back Pain

I am 25 years old and had my first surgery (to implant the harrington rods) when I was 13. I complained of back pain for years after my initial surgery so my doctor advised that I have another surgery to remove the rods when I was 17 and my spine had permanently fused (my growth plates had closed so they knew my scoliosis would not return).



The second surgery did not alleviate the pain I had complained of after the first surgery, but I was so young and physically active that I was able to ignore it for several years.



For the past two years or so I have started to experience pretty severe and constant pain in the entirety of my back. Some days it is worse in specific areas (lumbar, thorasic, etc) but for the most part it is just a constant pain. I really relate to what you said about feeling as if your body is "falling apart," I feel the same way. I am very healthy, fit, low weight and body fat %, etc. I practice yoga regularly and power walk 4 times a week. Everytime I see my surgeon he tells me to "work out more" which makes me want to scream because I already work out much more than most people. I am starting to worry that I will be crippled when I get older because now, at 25, I already see a drastic decrease in the amount of activities in which I can participate. I can tell you for sure, though, that having the rods removed makes no difference. Once you've stopped growing (around 17 or 18 years old), your spine's position is fixed. Sorry if this isn't exactly encouraging, lol. I suppose the only advice I can give you is to avoid jobs where you sit all day, and to work out as much as possible because that does help to decrease the pain.

I have been trough the scoliosis surgery 3 times. Everything you've posted is very similar to what I am going through right down to carrying in the grocery bags and laundry basket. Since you live posted this have you found any cure to the pain?

I had Harrington Rod surgery 32 years ago Dr Samuel J Laufer performed my surgery on an emergency basis because the curve in my spine was increasing so quickly. I then wore a plaster brace for 9 months after that.  I was always told to try to keep my weight down, which I've always struggled with, and while I've lived with back pain all of my life, in the last 3-4 years it has gotten increasingly worse.   Over the last year I've noted other issues that I feel are related.  There  are some days it takes me over an hour just to get out of bed.  The pain in my neck and lower back is excruciating.  Occasionally I have numbness in my arms and legs as well, that have been ruled out as other issues, and I firmly believe are related to the back pain.

see u should do proper rehab protocol s required for u i mean what exs ur dng wat to b modified and hve to chk ur stength level in muscles according to dat proper framing of exercises will advice u by physiotherapist................hope u understand and get rid off it soon

I want to tell you this will get better... that would be a lie. My surgery was 16 YEARS AGO.I'm 28 and the pain I deal with is horrific. I get sharp pains and spasms that cause so much pain I blackout. I have days that are manageable. I have had every test done you can imagine. Everything is fine except for the arthritis. I. Try to exercise but I don't got far before the pain hits. I can swim and walk but even yoga has become an impossibility. I'm sure this is not everyone experience but there are many of us out there. As far as your teachers... unless they have a medical degree as well they can stuff it. All you can do is try to manage your pain, try to excersize, see you doc if it gets worse. Usually the pain is just an annoying pain early on. Most people I have talked to that had it done many years ago didn't experience horrific pain until 5-7 years after.

When are the spinal surgeons going to start telling people the truth about this horrific and barbaric surgery? Scoliosis surgery/fusion is a disabling surgery; the human spine is meant to bend. I had the surgery when I was 20 and I'm now 47. Every hour of my life I have longed to bend and arch my back; to stretch. Of course I will never be able to do that again.  I have been on narcotic pain killers for 25. I even had the metal taken out ten years ago to try to alleviate the pain but I am still in pain. Does anyone know if the surgery can be undone? I long to arch my back...

Michelle,

Had my surgery in 1988, chronic pain here and there since. Very active in sports and dance. Just went in for xrays and MRI on the ongoing pain...can't handle it anymore. Results from xray: new scoliosis now in my neck after having a rod placed in 1988. Don't know what is going to happen next. Quite scared and pissed off that I am now reoccurring my worst nightmare!

Wow this thread is really dis-heartening. Out of all of these negative posts, I will reply with a positive post. I was diagnosed with scoliosis about a year and a half ago and had the surgery over a year ago. I had a 70 degree curve and the rods corrected it down to 30. So I've had the two rods in my back for over a year and about 6-7 months in the pain went away. At this point I have no back pain and I workout regularly. From the looks of these posts I guess I am lucky but I do eat really healthy and am very fit.

 

Don't get discouraged by reading 6 pages of bad reports of surgeries. I live with no pain for I don't know how long but I will cherish it. Eat healthy and excercise.

Same here. I am sixteen and I had my surgury when I was eleven. The pain is too much to handle and the doctor as no idea what it is. I had X-rays also. No sign of anything. And I am also getting exercise.

i too had harrington rod 30+ years ago i have always had back pain on and off since surgery but the last six years have been unbearable. tried physio which by the way was never suggested after surgery, acupuncture,  live on pain meds, quality of life is pretty ppor now. cant stand or sit for more than 15 mins. i now have a lot of weakness in left arm. the osteopath after seeing my ct scan said that i have basically no muscle down one side of my back and below the rod.  as most of you have said noone seems to help. i also have chronic pain in my legs too now.  i am seeing a muskoskeletal specialist this week, fingers crossed he can come up with something.  im very upset that not one doctor has ever suggested this. a friend with back problems told me.  shall let you know the outcome..  as far as meds go i find valium is the only thing that helps due to constant spasm. but dr will only supply few at a time.

Good news if any of you havent it tried it yet try rheumatologist. had my first visit today within 15 mins he worked out was wrong i even felt a bit better when i left . first good response in 10 years

I had my scoliosis surgery in 2010 when i was 13 which was about two years ago. I have to be really cautious about my back at times because the pain normally happens when i do any form of exercise, and i always think it might of caught a nerve but i really have no idea. The pain is constant everyday and the pain currently runs down the right side of my spine, near the muscle and along the bottom of my rib down to my coksix and sometimes the pain travels down my leg and really causes intense pain, and struggeling to get sleep. I wish i knew what causes the pain and how to prevent or relieve the pain because my GCSE's are in a couple of months and i dont want to be lacking because of the pain. Furthermore, i want to be able to actually excersise without pain afterwards so living a healthy life  is my aim without feeling really constantly lathargic from the time i instantly wake up in the mornings. Please Help?

hi Ally dont know if you saw my post try and a rhumatologist or muskoskeletal specialist this is the best i have been in 10 years

i havent been able to work because of the pain now i only need a panadol occassionally. magnesium helps too with relaxation

I had scoliosis surgery when I was14 I am 32 now and have been having lots of lower back pain. The doctor told me the last two vertabre that are not fused are taking on all the stress as it moves. It's pretty much degenerative at this point but u do have options to help with pain . I first had cortizone shot in the area that hurt and it worked for about 4 months. When it came back the Dr suggested getting a (rfa) radio frequency ablation. He says I could get up to a year of pain relief or even longer. I just had it done 5 days ago so its too soon to say. A more permanent solution is to fuse those last 2 vertabrae but I would like to prolong that as long as possible

yes im having the same problems as well.. in fact i thought that i was the only one having these problem...and the older i gets the worst the pain become... i dont know what to do...ive been to doctors and they have no answers.....most doctor dont want to take a patient who have these problems....i was very young when i had my metal rods place..im 31 now...my hips are uneven and i fall alot and thats not good....but there are some days i feel as if im on top of the world and then here comes the pain bring my joy down.... im a mother and cant participate in the things my chidren enjoy the most...my head,hips,arms,shoulder,neck..lower part of my back just be in pain..i found out that i have high blood presser...and i feel most of you on here about pain meds i just refuse to get hook on them...so ive learn to just pray and live with the pain and cry...thats all i know to do at this moment...i wish i could do so much more life is just pasting me by and im to young for that...but at least i know now that im not they only one having these problems with these rods on my spine....