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Severe Pain from a new user

kimzkkimz Posts: 5
edited 06/11/2012 - 8:45 AM in Scoliosis
Hello! My name is Kim, I am 24 years old and on the waiting list for my 4th scoliosis surgery.

I had my first surgery in 2002 to correct my 68 degree idiopathic thoratic curve. They were able to correct my spine to 36 degrees!! I was in severe pain and nothing showed up on the CT scan, bone scan, or x rays no one know what was wrong. It turns out i had an allergic reaction to the rods they used and was scheduled for my second surgery 4 years later 2006.
They replaced the rods with titanium and ended up extending them lower because the curve increase, they also broke 10 of my ribs (costoplatsy) to correct the hump i had on the right side of my back which completley increased my self image i was able to wear a t shirt for the first time without a sweater covering me up! I think it was totally worth the pain!

After the surgery I returned to my normal activities playing soccer, skiing, white water rafting but i was still in pain. no matter what i did i was constantly hurting, i eventually was forced to go to the emergency room (Im very stubborn and just wanted to suck it up) It turns out the upper hooks and screws popped out and was lodged in my right shoulder blade I was going in for yet another surgery 2008

Surgery #3 was easy peasy just day surgery I was back to my normal activities in no time, although my pain has never subsided.

I tried everything i could think of for pain, seeing different doctors, massage, acupuncture, freezing injections, going to the gym, yoga, physio therapy, Swimming, aquafit, not doing anything at all, i bought a tens machine, hot and cold compresses, pain killers, muscle relaxants, anti inflamatory creams/ pills. I quit my job to get one easier on my body, and nothing has helped i have been in pain every day for over 8 years.
I am working full time now at a desk job where i can sit stand and walk around whenever i want but i have to take my pain killers (percocet) to get through the shift. Its unbearable if i dont.

I got x rays 2010 and it showed a screw is floating around my upper body again. My surgeon said since i tried everything they are going to cut me open and take out my rods replace them with a smaller rod on just the left side and hopefully it helps. I agreed bc i am willing to try anything to live a normal drug free day. Even if it decreases my pain by only 10% i will be happier. My mood has changed drastically, i used to be a hyper happy go lucky person, i was willing to do anything, go anywhere, be the life of the party, now i hate going out, everything is a chore bc im always in pain, im so frustrated im not me. I just want to be myself again.

Now that you know my story, i was wondering if anyone has had the rods taken out and replaced with a smaller single rod, if so how did it go? Does anyone know anyway to decrease pain, my most severe pain is in my right shoulder blade.



  • Hi Kim.

    I haven't had the surgery myself, so I don't have an answer for your question. I'm 27, and I've got curves, one at 37 degrees, and the other at 38 I believe. I wore a back brace when I was about 13 to 17, it corrected the curves to 32 and 24 degrees, and I'm just now finding out how bad they've progressed. I'm a waitress of all professions, and I'm now suffering from severe back pain. My scoliosis has never really bothered me until now. I'm seeing a chiropractor twice a week, getting massaged once a week, and nothing is really helping. I'm trying to get in to see a specialist to determine what to do next. Do I need physical therapy or surgery? I've been doing my research and they only really recommend surgery with a 50 degree curve or higher, such as your case. But like you, I don't want to live in pain. I'm trying to find a different job, and exercise, eat right, and take supplements to strengthen my bones. I hate looking at my back in the mirror, it disgusts me. I just don't want it to get worse. I hope they can help you with next surgery once and for all. I don't wish this upon anyone. Its certainly not a fun way to live.
  • I am so sorry to hear you are going through so much pain. My issues are totally different than yours but you did mention alot of your pain is in your shoulder blade. I had a complete tear of my rotator cuff in 03 and it is now retorn. Surgery is the only answer but I have so many other issues it is not a priority at the moment. For your shoulder blade pain I was wondering if you have tried ice. Actually frozen peas works wonders on the shoulder area as the bag molds to your shoulder. I found heat made the pain worse while ice helps a great deal more. It's worth a try! As for your other questions as I said I have no experience in that area. I wish you the best of luck and pray you will soon have painfree or at least a reduction in your pain.
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