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Lots and lots of questions!!! Please help!
Hi everyone,
My name is Rebecca, I'm 25, and I live in Orlando FL.
I just found this forum last week and am SO thankful that I stumbled upon it! I have lived with scoli for so long and have never talked to another person who had it, so this has been a revelation for me.
I was diagnosed with scoli when I was 13. I had a 45 and 42 S curve. The docs said I was in the "gray" area of whether I needed surgery or not. We opted to wait and watch. I used the charlston night bending brace which I wore for about 4 years. I was always told that my curves would never get worse after I stopped growing and that scoli didn't cause pain. They also told me my back was basically like a normal back and so I didn't need to be any more careful with it than anyone else. Since there were no changes before I stopped growing I never worried about it.
Fastforward to four years ago, I started to notice a lot of discomfort and pain that I'd never had before and I was convinced one of my shoulders had moved forward. It hurt when I sat and stretching started to make only one leg really really tight. I had always been active and worked out regularly so I thought something was wrong because I had never felt that way before. I went to PT and they told me nothing was wrong I just needed to "stretch more." I couldn't find any PT's who knew much about scoli and since the pain continued to get worse I started seeing Orthos.
Not much was done. They told me it was nothing to worry about and basically gave me the brush off. I decided I must be making a big deal out of nothing and tried to ignore it.
Last May I wasn't able to ignore it anymore. I started having terrible pain all day and night no matter what I did. It ran all the way down my left leg and was so intense I had to quit my job. I went through several orthos who had me do all the injections and pills and PT, and none of it helped. (I had one guy basically just say "live with it" and sent me to the "pain management" docs.) I finally found a great Ortho up at Shands who diagnosed my herniated disc at the L 2-3. They also found my curves had increased to a little over 50 degrees plus or minus.
I had a surgery in october of 2007 to remove the herniated portion of my disc. It seemed to help for a little bit, but my ortho said he was concerned that my scoli was contributing to the pain, but he couldn't be sure till after i recovered completely from the surgery.
Well, the pain has come back almost entirely but my MRI is clean. We've done another round of injections that did nothing at all except make me worse for a few days. I have been to my old ortho who did my 1st surgery, I have been to an ortho in orlando, and a neruosurg. they all said the same thing: one, the pain is being caused by at at least 3 levels or nerve roots, and two, your scoli is most likely causing the pain.
I finally went to a group here who specializes in scoli, and he was very understanding and concerned. He wanted me to do another EMG test, which I had yesterday and I have nerve damage in my thigh coming from the L 2-3.
I am meeting with the surgeon on monday to decide whether we'll do a laminectomy or the whole scoli surgery with the rods etc.
Has anyone had a laminectomy? Can anyone tell me what that is like, how recovery is, and what I should do to prepare.
I would also like advice about the scoli surgery, what it's like, what recovery is like, and what to do to prepare.
Also, has anyone experienced pain like mine? It burns and tingles, aches and "shocks." Sometimes my thigh muscle will twitch. The ache is so deep and constant. The pain starts in my low back and goes all the way over my left butt-cheek, into the hip area and over the thigh. It then comes out down the back of my calf and over the top of my foot. Even my middle toes hurt. I get weakness in my leg where sometimes it just gives out on me. When I sit indian style or on the floor my leg goes to sleep in 2 seconds, and hurts SOO bad when it "wakes up" same thing with sitting too long in the car or at a desk.
I have two more questions that are more curiosity at this point, but one, has anybody been pregnant after the scoli surgery? What was it like, and how was the birth? (My husband and I were planning on starting a family until this pain started, and so now we're waiting.)
Last question, can people wear heels after the scoli surgery? I used to wear heels ALL the time. I love them and they make me feel so feminine. I can't wear anything with the slightest heel at all right now or for the past 2 years, and have the vain wish that I might be able to again one day.
I am staying pretty calm, but I think it's because I've been living with so much pain the last two years that surgery sounds great just because it's an answer. I would appreciate any help, advice, and prayers.
Thanks so much!
Rebecca
My name is Rebecca, I'm 25, and I live in Orlando FL.
I just found this forum last week and am SO thankful that I stumbled upon it! I have lived with scoli for so long and have never talked to another person who had it, so this has been a revelation for me.
I was diagnosed with scoli when I was 13. I had a 45 and 42 S curve. The docs said I was in the "gray" area of whether I needed surgery or not. We opted to wait and watch. I used the charlston night bending brace which I wore for about 4 years. I was always told that my curves would never get worse after I stopped growing and that scoli didn't cause pain. They also told me my back was basically like a normal back and so I didn't need to be any more careful with it than anyone else. Since there were no changes before I stopped growing I never worried about it.
Fastforward to four years ago, I started to notice a lot of discomfort and pain that I'd never had before and I was convinced one of my shoulders had moved forward. It hurt when I sat and stretching started to make only one leg really really tight. I had always been active and worked out regularly so I thought something was wrong because I had never felt that way before. I went to PT and they told me nothing was wrong I just needed to "stretch more." I couldn't find any PT's who knew much about scoli and since the pain continued to get worse I started seeing Orthos.
Not much was done. They told me it was nothing to worry about and basically gave me the brush off. I decided I must be making a big deal out of nothing and tried to ignore it.
Last May I wasn't able to ignore it anymore. I started having terrible pain all day and night no matter what I did. It ran all the way down my left leg and was so intense I had to quit my job. I went through several orthos who had me do all the injections and pills and PT, and none of it helped. (I had one guy basically just say "live with it" and sent me to the "pain management" docs.) I finally found a great Ortho up at Shands who diagnosed my herniated disc at the L 2-3. They also found my curves had increased to a little over 50 degrees plus or minus.
I had a surgery in october of 2007 to remove the herniated portion of my disc. It seemed to help for a little bit, but my ortho said he was concerned that my scoli was contributing to the pain, but he couldn't be sure till after i recovered completely from the surgery.
Well, the pain has come back almost entirely but my MRI is clean. We've done another round of injections that did nothing at all except make me worse for a few days. I have been to my old ortho who did my 1st surgery, I have been to an ortho in orlando, and a neruosurg. they all said the same thing: one, the pain is being caused by at at least 3 levels or nerve roots, and two, your scoli is most likely causing the pain.
I finally went to a group here who specializes in scoli, and he was very understanding and concerned. He wanted me to do another EMG test, which I had yesterday and I have nerve damage in my thigh coming from the L 2-3.
I am meeting with the surgeon on monday to decide whether we'll do a laminectomy or the whole scoli surgery with the rods etc.
Has anyone had a laminectomy? Can anyone tell me what that is like, how recovery is, and what I should do to prepare.
I would also like advice about the scoli surgery, what it's like, what recovery is like, and what to do to prepare.
Also, has anyone experienced pain like mine? It burns and tingles, aches and "shocks." Sometimes my thigh muscle will twitch. The ache is so deep and constant. The pain starts in my low back and goes all the way over my left butt-cheek, into the hip area and over the thigh. It then comes out down the back of my calf and over the top of my foot. Even my middle toes hurt. I get weakness in my leg where sometimes it just gives out on me. When I sit indian style or on the floor my leg goes to sleep in 2 seconds, and hurts SOO bad when it "wakes up" same thing with sitting too long in the car or at a desk.
I have two more questions that are more curiosity at this point, but one, has anybody been pregnant after the scoli surgery? What was it like, and how was the birth? (My husband and I were planning on starting a family until this pain started, and so now we're waiting.)
Last question, can people wear heels after the scoli surgery? I used to wear heels ALL the time. I love them and they make me feel so feminine. I can't wear anything with the slightest heel at all right now or for the past 2 years, and have the vain wish that I might be able to again one day.
I am staying pretty calm, but I think it's because I've been living with so much pain the last two years that surgery sounds great just because it's an answer. I would appreciate any help, advice, and prayers.
Thanks so much!
Rebecca
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