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Causes, blame

Lmr106LLmr106 Posts: 119
edited 03/14/2014 - 7:30 PM in Scoliosis
I was 14 years old when I had my spine fused from below my neck to below my waist. I had to have two metal rods put in plus screws plus chips off my hip bone because my back was it a 52° angle in an S curve. Fast forward to when I'm 26 begin having back problems. The pain was usually on my right side and finding a doctor is almost impossible. I did finally find a pain doctor that believed what I was telling him. After trying all conservative approaches I had a pain pump installed into my back. I then had was called a rare side effect of CSF fluid draining from around the catheter and after three blood patches it has not stopped. I think it has stopped now about four months after my original surgery but I'm not sure because I still spend most of the day laying down.
Anyway that was just the background so you would understand what I wanted to talk about. Sometimes I feel very angry with my parents and made me have the original surgery when I was 14. I look at all and I have lost because of the surgery and it's so hard. I love my mom and dad very much and I know that they would never have done anything to hurt me, but here I am 28 years old basically bedridden. The rational part of my brain just I'm just trying to find someone to blame because the situation is so bad. I was wondering if Other members have any thoughts like this in regards to issues they had scoliosis or otherwise.
2000- spinal fusion, complete spine due to scoliosis
2012- pain began, started treatment for chronic pain
2013- install of pain pump, procedures to address complications
2014-blood patch, spinal fluid leak


  • Causes, blame,

    I was told to put off any sort invasive procedure such as fusion until it became completely unbearable. After suffering for 3-5 years, which slowly got worse and worse as time went on. I'm a very active person and continued to do the things I enjoy, I just couldn't do them as well and I paid for it with the kind of pain only someone that who has felt it could understand. In the meantime I was seeing specialist, doing physical therapy, massage therapy, and everything else I could think of to try to find some sort of relief. Finally, it got to a point that it had basically made me bed ridden and incredibly depressed. So, I went to mayo clinic in MN where they took X-rays and compare them to some from 10 years prior and found my curve went from 40 to 52 degrees up top and was affecting the structure integrity of my lower curve. I had every injection they have to offer, and even did a radio frequency oblation to help disconnect my spine and the nerves in my legs. They thought it may prolong having to have surgery....didn't help. That was July of 2013. I had my surgery Nov 15th, 2013. They fused T3 to L4 (I think), 24-26 screws and 2 rods. So, to answer your question I think that some of use are going to have to have it done at some point in our lives, wether it be when your a kid or 31 years old. My whole life I was told I'd never have to have surgery, and did everything I could to make sure I'd never have to, but 16 years after finding out I had it during a school screening, I still had to have it done. If I could go back in time, knowing how things were eventually going to end up anyway, I would of had it down when I was a kid so avoid this godawful recovery period that I'm still in the middle of. When I was a kid I had to wear this electronic shock thing, instead of a brace, called a scolitron. I had 2 pads on the outside of each curve and had to wear it at least 8 hours a day, mostly while I tried to sleep. It was awful, it would shock me so hard that it would make me bleed, and obviously sleeping was all but impossible. I would shut it off occasionally just to take a break from the torture and parents would flip out on me. I hated them for making me wear that thing. From that day on, which I was close to 14 years old, until now, nobody believed me or took me serious when I would try to tell them how bad I hurt and how it was effecting my life. I'm sorry your surgery didn't quite work out like you would have liked, my only advice is to get yourself mentally ready to deal with what your going to be fighting for the rest of your life, just like me. I'm. We're still young enough to still have a life before we get old and crippled, and have to stay positive. I bought a new set of golf clubs right after my surgery so I had something to work towards... Even though pot isn't legal we're I'm from, I have found that it helps me manage my pain, muscle spasms, helps me sleep, and most importantly keeps me off narcotic pain killers. It also helps me deal with all the mental and emotion stress dealing with chronic pain comes along with. You might want to see if that helps, if possible. There is an article that really hit home with me as far as explaining to your friends and family what live is really like for you and constantly dealing with pain... It's called "The Spoon Theory". I almost guarantee you'll feel better about what your going through after reading it. I wish you all the luck in the world, and hope things get better for you soon!
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