Post-Scoliosis Surgery Back Pain

I am so sorry! Though I personally cannot relate to anyone's pain from spine surgery I can because of my daughter. I understand the pain as well as I suffer from a heart condition, fibromyalgia, severe arthritis, budging discs and a slew of other health proglbem. I recently found out I also have scoliosis...I am 49. I have been on disability for over 10 years because I guess my body is a medical wasteland. I suffer in pain daily so I do understand the pain aspect. I have had the injections and they do help ALOT though you have to have a set of 3 shots before you will see any difference. I understand how it feels to become withdrawn after going on disability I have been so withdrawn too there are so many days that I sleep most of the day. I hate it. I think about just falling asleep forever but then I remember that when I don't wake up someone has to find my body and I would have caused that person great pain, and if it were a family member they also will suffer the pain of losing me too early in life when they need me. My mom died 13 years ago and I still feel like an orphan, I long to talk to her and be with her because she always made me feel better. When I think I my mom and how I feel, then I realize that ending it all would only cause my children that same pain. I would suggest trying medical marijuana if your state allows it. There is also a pill form that you can talk to your doctor about. despite the argument surrounding legalization and the moral issue the truth is it helps. As a Christian, I believe that God put it on earth and it really helps people, I was reading an article about an autistic boy who has improved greatly from the use of it. Before he would bang his head until he was bloody, black and blue because his head hurt so bad but with mj treatment he doesn't do that anymore. Please don't give up hope, you are still a valuable person to society and your family who loves you! Try the injections and maybe that will help!! Take care of yourself.

I had the surgery when I was 17, a year later my body rejected the metal so they had to remove the rods. Luckily, the bone had already fused so no other surgery was needed other than removing the metal. My recommendation for everyone is STAY IN THE BEST SHAPE POSSIBLE!! I can't emphasize this enough. I work out 5 times a week, try to keep a healthy diet and my pain has reduced by far from that before the surgery. There are days when it hurts to even breathe, but you have to fight through it, stretch, relax and keep going. Strengthen the muscles around in your upper and lower back, do alot of non or low impact cardio, and you will find life is much easier. The surgery is not a fix all, but rather a helper in keeping your curvature from getting worse. Hope this helps!

It has been both encouraging and discouraging reading all these posts.  I'm 26 and coming up on 10 years since my surgery.  I had a rod put in through my side to straighten my lower curve that was at 65 degrees. And the pain just seems to get more and more prominent and ALL over my  back to where I have days I can't go to work and I have to have my husband do just about everything for me. But I do remember when I was 17 and I knew surgery was probably my only solution I went prepared to the surgion with a page full of questions I had. One question was about the pain and he told me the surgery isn't going to make the pain better (I had a lot of pain before I had this done) it just stops the curve from getting worse.  I recently had an x-ray at a new surgeon since I live far from my original surgeon and was told I have loose screws and degeneration.  I'm not supposed to be running or doing any "high impact" activity which is extremely depressing since thats how I stay in shape.  What has helped me is advil, muscle relaxers, and a combination of heating and ice pads.  I can't afford physical therapy.Question for the mothers with scoliosis surgery: How was pregnancy? My worst pain is my lower back and just thinking about having a few extra pounds on my belly makes my lower back ache. I'm thinking of having kids soon but am scared of being completely bed-ridden.

What's encouraging is knowing now that I'm far from the only one with these problems. Thanks everybody for sharing this info :)

Hello, I´m 19 years after the surgery with Harrington rod. I have to be carefull how I move, sleep, sit and everything to prevent my back from pain. Sometimes it doesn´t help anyway, sometimes it does. Does anybody have an experience with the spine going worse? I slipped from 45 to 62 degrees of Cobb throu 5 years. 

Very inspirational words. Im struggling with my exercises but that certainly gave me motivation and hope :)

I had my scoliosis surgery 20th march 2012 and nw its like the same thing you're goin true. Now the pain is like so worst that i can't even do nothing if i stand too long i constantly get unbearable pain. Sad part its that i'm only 19yrs and my surgery only been 1 yr and so much pain so could imagine my life from now. Painkillers don't really worked tried many, sometimes i just cry myself to sleep at nights. You're going true the same thing like me so just wanted to share this with you cause no one really undersands..... :)

I had the Harrington rod surgery for scoliosis 30 years ago when I was 13.  I do not know what the exact placement was; but the top of my fusion is right between my shoulder blades and the bottom is just below my ribs.  I had a 54 degree angle between my shoulder blades that had also twisted my ribs around so much that my lungs and heart were strained. I was also in so much pain I didn't fear the surgery, I welcomed it.  2 weeks on a stryker frame, 3 months in a body cast, 3 months in a brace and then I was free.

Pain didn't really start until I was studying in college....my neck and shoulder muscles were very painful if I read at a desk, I had to figure out ways to study that wouldn't put strain on my neck.

10 years ago I was diagnosed with fibromyalgia....The pain was so widespread that I had to give up a very lucrative position as it had me driving through a huge territory every day, which caused me to not be able to walk at night or the next morning.  Things have been pretty manageable up until now.

I've had constant muscle spasms between my shoulder blades and my shoulder area....I have been on flexeril and then when that stopped working they moved me up to skelaxin. I had numerous other meds to help when things were worse...such as the cold weather coming or the barometer doing major fluctuations.  I was told that those muscles had over compensated due to the fusion (those muscles having to do nothing) for so long, that's why they were in spasm.  Well, I could handle that until the spasm went up my neck...

When the spasms went up my neck, I kept feeling like I was being strangled. Massage therapy helped...and with my doctor's advice I went to a chiropractor who was fully aware of my fusion and did mostly massage.  Well, then I started to have neuropathy in my left side....My left cheek is swollen and numb, the left side of my head all the way down to about my thighs are numb.  The ER first thought a stroke, nope, not Bells Palsy because that wouldn't affect the left side of my body as well, MRIs of my head and neck were clear....So now I wait to get into a pediatric surgeon who specializes in scoliosis, a neurologist to see what is going on and causing my neuropathy, MY pediatric ortho who did the surgery when he returns to the US in June, and my rheum this month to see about my fibro.  The doctors who have seen me are all thinking the same thing--Something is causing this from my harrington rod surgery all those years ago.  Even my pediatric ortho, who I was able to call for a few minutes, said to stop the chiropractic treatment, that it could make it worse, even if he is just doing my neck.

It's weird for me to be out of work; but working doing tech support in a major call center is not the least stressful job, it definitely causes more neck tension than I already have and the meds I am on now, well, I have no filter with what I say and having an in depth conversation is challenging to say the least.  I feel like because people can't SEE what's causing my disability at this point, they think it isn't there.  My doctor today just extended me to July 1st because we are only treating the symptoms and keeping the pain at bay at the moment.  The neuropathy hasn't improved at all since it started badly last week.  I had tingling for a while before this started. 

My youngest son heads off to college in the Fall, thankfully mostly on scholarship.  My middle son heads to the Navy July 1...which is the hardest part of the pay cut.  He's not working right now and he isn't a minimal eater, lol.  Time to see what I can cut down on....It'll do me good.

 

If anyone else has gone through anything similar, I'd love to hear from you.  My e mail is 

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Thanks so much,

 

Mal

I am having the same problem. I had the surgery when I was 15, I'm not 24 & I hurt every single day of my life. It never stops, the only difference are the flare ups with spasms, it's horrible and I have been going to the doctor they say rod is in place nothing is wrong. I can't live like this, I can't take it much longer! it's horrible I am so sorry you're going thru this as well.

After reading all the comments, I feel extreemly blessed that i did surgery 12 yrs ago when i was 16 years old, rods were also inserted. However, to date i must say i feel little or no pain or discomfort. After giving birth and living a quite normal life. :-). keep the faith and pray.

Wow, reading these stories has made me feel better already!:-) I had the three stage surgery two years ago aged 50. i have rods the length of my spine and had five discs removed and fused T11 - L4. Before the surgery I was in pain and could only walk and stand for short lengths of time. A surgeon 'fixed' my spine and instead of 'enabling' I am  more disabled than ever. I too have a lot of pain in the shoulder blades and have had since the third op. I do wonder if it might be 'Adhesions'?                                              

I can no longer put socks on without using an aid, I certainly can't tie shoelaces and every daily task has become a chore!I can just remember the last time I was comfortable...before the surgery. I cannot get comfortable anywhere, baths are a joke as the stiff back doesn't fit the curved bath anymore.

I also suffered a fair bit of nerve damage after the first op..I have no feeling on my right hip, part of my backside and the tops of my thighs and stomach have reduced sensation.

 After the second op[ (anterior) my stomach got hugely bloated...I still have a huge belly to the point that my belly button is half "popped' like I'm pregnant.

I know I sound like a whinger but this is the first site I have found that isn't full of people raving about how wonderful their surgery was! My surgeon only worries about his 'hardware to the point that I don't intend going back! He has never asked me once if I feel better off, whether I'm in pain etc in fact he only looks at the xrays, says stand up lift your shirt and I'll see you next time!!

to top off my rant..I am now more 'crooked' than I was before the surgery. One boob is nearly two inches higher than the other and off towards my armpit somewhere and I am not aligned in anyway...if I wear a top with vertical stripes they visibly twist with the contour of my body!

Oh to turn the clock back two years and say NO NO NO!!!

i had my first scoliosis surgery in 2000 was hurting alot. i didnt know why i had the rods put in and went to find the doctor who did this only to find out he wasn't doing this anymore. so in 2005 i went to another doctor and found out the rods i had in were bent and the screw were loose. no other doctor wanted to touch this but he said he could do it and i was thankful. he had to cut alot of it out and screw more on but fuse even longer. i am fused all the way to l1 but that surgery was 2005. now since then i hurt alot and try not to take narcotics so i take tylenol pm. still hurt do you have any suggestions. i had a 80 degree curve. bless your heart i hope you feel better soon :)

My daughter also had spinal surgery for scoliosis 4 years ago. She has had pain for the last 3 years. Now, there is a clicking or popping sound in her back when she moves a certain way. We have wondered the same thing, if it's a ligament or something. Doctors are baffled and not much help. Questions: Do you hear a sound when this happens to you? Have you found anything out about what it really is? I am trying to get real time x-rays to see if something is moving (but if it's ligament, it won't show). I also just heard of K laser. It is supposed to help with inflamation and pain. I am hoping to find someone to try it on her. Then price becomes an issue. I could just go crazy when I read all these posts of people in pain after a procedure the doctors told us all was necessary. Good luck to you.

I had back surgery when I was 16 I'm 28 now..I have been in pain all my life due to the fact that I had open heart. Surgery when I was 3 I only have one working chamber and I had a pacemaker put in at 19 I have had five surgery so far...anyway I have had more pain with my back then any pain I have ever been in..I don't want to have another surgery..is there anything I can do for my back that my take some pain away? ?

I had the clicking/ popping sound too. The surgeon laughed and sorry if I made you noisy!! I think it is the rods flexing...if it's any consolation it has now gone away and I'm 2 years post op...my post is just above with the spinning smiley face that ends.....Oh to turn back the clock and say NO NO NO!

Hi John,
I have a 52 degree S curve. Recently developed leg pain and weakness. Neurological from disc compression and synosis. Have been going to a chiropractor but he just rubs pressure points and give me some stim and heat. Not very effective. They are recommending surgery and fusion and I am terrified. Spoke with someone who was fused and her quality of life has changed. Can't bend, do personal hygiene normally, can't tie her own sneakers. This is so scary.
I will research your NUCCA. Any suggestions, thoughts, etc. you can offer will be appreciated.
Thank you and God Bless