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hi everyone it's comforting to know I'm not the only one with back problems out there

susiessusie Posts: 154
edited 06/11/2012 - 8:25 AM in Scoliosis
Hi my name is susan - I just turned 49. I have scoliosis.
When I was about 12, I had to wear the Milwaukee brace.
When I was 14, the dr.s said I had quit growing and things should remain the same. When I was about 25, I noticed sitting in an office chair was becoming unbearable. When I was 30 - I started getting a lot more pain. I know I should have had surgery but didn't feel I could check out of my life long enough to have surgery and time to recover. I started to babysit for 2 little girls out of my house - because I couldn't sit at a desk - and this at least allowed me to be flexible about what I did during the day.
I knew I was getting worse this spring but in October my back - it just went out on me. I went in to my primary dr. and she said, no more babysitting for you and sent me to a surgeon. I am having a spinal fusion - well, in 2 different operations a week apart - the anterior and then some days later the posterior. I see here is not that uncommon, February 24th is the first. I had a bone scan and an MRI and they have added a discectomy. I am having a lot fused and the surgeon said he will not be able to correct it all. But it will improve my quality of life and it really was not an option to not have the surgery. My spine is pushing on my diaprahm. I also have depression problems and have had trouble leaving the house. Riding in the car is miserable anyway. I did apply for social security disability and the surgeon said he will assist me in any way he can - but I realize I may not get it and even if I do it could be years. Naturally, I waited until the economy was bad to make a major decision which required me to close my little pleasant babysitting business. I couldn't pick up a baby safely anymore and when I did I was in terrible pain. So that's my story - and now I am just waiting. I have an attorney for the disability and an excellent surgeon and a good husband. Plus a really good therapist - the mental health kind. The surgeon said I will always have some pain but nothing like I have now. Yesterday I didn't take a pain pill until 5:00 p.m. just to see how I would be - and I could barely move around. I just wanted to know. All of your stories have helped me, I've been reading your posts for some time. It's very comforting to know others have similar experiences even though I am so sorry for anyone's pain. Thanks for listening, Susan


  • Hi susan
    my name is cameshia and im 28 years old ni had back surgery for scoliosis when i was 10 years old i have the herrington rods in my back and the last past 10 years have not been good at all. i constanly have back pain, i have a pinched nerve in my neck, depression, carpal tunnel, gout, and now my feet go numb. my doctor sign me up for disability but they don't want to give it to me and now i just found out that my four year old little boy has scoliosis and he just got his back brace 2 days ago. his curve is at a 30 degree angle. my curve was at a 65 degree angle. I can relate to what you are saying. I have been on lots of medications but none of it is working now i think im immune to it. well i just wanted to share my story with you and i hope that everthing goes well with you.
  • I hope the surgery helps your pain and I hope you get your disability okay. Are you on any meds and have you had any injections for pain? Anyway just wanted to welcome you here. Keep us posted to your progress if you like. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
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  • I have never had any injections - my Dr. never mentioned them and neither did the Surgeon. Maybe because I went
    from getting by for years straight to scheduling the surgery. I have taken tizanidine for years - a muscle relaxer, I take klonopin and wellbutrin for anxiety and depression and also pain pills. I hardly needed them until this fall but now I take them on a regular schedule every day. I hope I will be able to stop the pain medications without too much trouble when the Dr.s say it's time. The Surgeon did say I would always have some pain but my quality of life will be so much better, especially later in life - I hope the pain he mentions will be slight - I am hoping for the best results but am keeping in mind I need to be realistic too. I am
    certainly anxious about the surgery and following months.
    I have been reading all of your posts on everything.
  • You must have great concern for your little son. I'm glad he is being watched obviously very carefully. I have 2 curves and 1 is 67 degrees and I think the other is 49 degrees. Thank you for the good wishes. I hope something will come up to improve things for you. It sounds very difficult, I'm so sorry. Thank you for sharing. Susan
  • I had a 9 level fusion 10 months ago. I too could not sit in a chair, or the car. It has been a very hard recovery. I still take pain meds, and the colder weather is killing me. I hope something changes cause I can't stand living like this either. :|
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  • did you get any relief - at the beginning after surgery or was it just no relief at all - I live in a fairly big city
    and either things are on the east side of town or the west side - nothing on the east side of town - including great shopping and different things to do, make it worth it for me to ride in the car for the 30 minutes it takes to get across town. I have the passenger side car seat leaned back and then I have to sit kind of sideways in it - just to go a short distance. Until I took so much medicine driving was almost easier than being a passenger. If we went out of town, I had to take pain medication just to get to where we were going and more than 3 hours away - wasn't worth the trip - not for the price I paid in trying to get there anyway. I'm so sorry to hear of your disappointing results - I'm realistic - I hope for the best but my surgeon didn't leave me sceduled for surgery with the impression that it would eliminate all of my pain. I hope today will be a better day for you. sincerely, susan
  • You've come to the right place where you'll get all the support and advice you need. I'm sorry you are in pain, and it looks like you have taken the best measures to deal with this and I hope you get your Social Security. I'm sorry you had to give up the babysitting. A lot of us have given up our former professions and way of life. I worry about my son too; he has only 15 degrees of curvature and his back bothers him occasionally and is remedied by motrin. Scoliosis runs in his dad's family, and his dad and grandma has it. I pray his will even out as he grows and it will break my heart if he suffers like me. Children don't deserve to have this and grow up having to deal with this. My heart goes out to all of you.

    PS I don't have scoliosis, but I do have a multitude of other back and nerve pain problems and I have a 2 level fusion of L4-S1.
  • Well here's the thing, for months I have been good, although it has been one giant adjustment. i saw the doctor Tue. and he said because I am so thin, I can feel the hardware in my back. When the weather gets cooler, thats when I suffer.I live in Los Angeles, so that is fortunate, but none the less! They did get rid of all my problems, all of them, I just have a basket of new ones! One thing is , I always have amazing posture!!!!
  • I hope the surgery will relieve some of your pain. I think it will and I know you will feel better. I had my surgery when I was 13 (1983). I cannot remember exactly but I think the lower curve was 75 and do not remember what the top one was. Now the lower one is 20. I have 3 Harrington rods and pedicel screws from T6 to L5. I do remember the pain from healing and I know the younger you are the better you heal. But you have a very positive attitude and that will take you a long way. I never had any pain, well little bits here and there and the feeling of being uncomfortable sometimes because I was not sitting on something comfortable. No severe pain until about a year ago and all the arthritis that has been building up in my back from the surgery is now taking over my life. My NS said the advanced arthritis is that of a 70 year old. I too have had to quit my job and applied for disability, also dealing with a little depression. For the car, try one of those cushions that have a place cut out for your tail bone and a lumbar cushion. That is what I use for trips longer than half an hour and it helps a lot! Also I could hardly breathe before my operation and after it I could breathe a lot better too. I just know that you will feel fantastic once you start to heal. Be ready…you might be taller. I was 2 inches taller once then straightened me out. The cold weather is definitely a killer. I live in Virginia and something about this winter is horrible, it makes your back very stiff and painful, not the same pain you feel now and it goes away when you warm up. Mine does anyway. I will pray the rosary once a week that you have a successful surgery.
    Peace, Melissa
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