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Hi Everyone. I hope I am in the right forum but if not point me in the right direction please.
I had corrective surgery when I was 16 for my scoliosis and kyphosis. I had an S curve with a 60 and 55 degree curves and no one caught my condition until the kyphosis started and my spine started to stick out of my back. I had regular scoliosis screenings in school but for whatever reason they were NOT effective. By the time they caught it we tried bracing but it was ineffective and my curves were progressing quickly. I was growing rapdily and was already 6'2" my freshman year of high schoool. The bracing was terrible anyway, in retrospect having the surgery even with a fusion was so much better than that stupid brace. I had 2 rods put in and a fusion from T4-L4 with bone taken from my hip. I wish I had pictures to share but the surgery was done in 1999 and I only recently tried to get personal copies of my xrays and imaging only to be told that the hospital and doctor office had discarded them! I was livid! Especially when they made such a big deal about keeping them originally, even when we took them between offices they told us we were just "borrowing" the images and needed to return them ASAP.
Anyway, the surgery was successful and while recovery was long and hard and I had an extremely difficult time coming to grips with the limited mobility afterwards for the most part my pain was reduced after surgery and recovery. I was extremely active and athletic pre-surgery and was an active basketball player. I was told by my doctors and surgeons that post surgery I had to stop playing ALL contact sports. So fast forwarding to today I've learned to deal with my limitations and with pain. The problem is that in the past year my pain has started to get worse. Either that or my tolerance for it is finally wearing thin. I have also put on probably 60lbs since my surgery and I struggle with my weight now since I cannot be active like I once was. My biggest issues right now are sitting at work and sleeping at night. I just CANNOT get comfortable when sitting or sleeping. It's so bad that I've spent some days at work pacing around my office and finding excuses to go outside for breaks. Sitting in an office chair just kills me. Unfortunately I do have a desk job and I spend most of my day sitting at desks working on a computer. At night I toss and turn constantly. I cannot stay in one position for more than 5 minutes. I've learned to deal with it but it bothers my wife and I don't feel like I ever have rested sleep. I wake up at least 3-4 times during the night in pain and contorted in some weird position. For years I was too busy dealing with college or starting my career and I just sorted powered through it all. It was miserable by I had enough other big problems in my life that being in pain constantly just seemed par for the course. Well I finally found some stability and now the pain seems that much more worse. I just want to know what it feels like to sleep well again, or go to work and not be in pain. It's hard to focus on my job when my lower back is throbbing in pain.
So I have a few questions for the rest of you who seem much more knowledgeable about these things:
1.) How much pain is normal for 12 years post-op? I can't tell if my tolerance has gone down or my pain has really gone up but I just don't seem to be able to take this anymore. I used to basically live on ibuprofen for pain but these days I can take 800-1000mg and it has ZERO effect. For years I just told myself that pain was normal and with my condition there's nothing I can do. I used to just deal with it ... but I feel like I can't anymore. My pain is a deep throbbing/burning pain in my lower back and I also have throbbing/sharp pains near my hip where they removed the bone. I've never understood the hip pain. Is that normal? Is this some kind of phantom pain? I had always assumed the hip would have just healed itself I wouldn't have to worry about it anymore.
2.) How do the rest of you stay in shape? What works best? I've tried diets ... but one of the few things I enjoy in life is food and I've never done well with diets, I just can't stay on them. I also struggle with exercise because I can't do the things I used to do. I've gone to physical trainers and physical therapy but I get frustrated because half the things they want me to do I can't do. They sit there and give me a blank stare when I tell them I can't do situps and they look at me like I'm not trying. It's frustrating when people don't understand what it's like to have your spine fused. I had one physical therapist try to give me all these exercises to do with bands on a wall and I kept trying to explain to her that I can't do things like rotate my whole back or bend over and they just don't get it .... what does work? All of my weight is on my stomach. I walk a lot and do weight training but I haven't found any way to keep my beer belly down as I can't really do sit ups, crunches, or anything like that.
3.) How do you sleep? Am I the only one who tosses and turns all night? I've had people tell me to just put a pillow between my legs, or under my back, or rest my arm on one, etc etc etc. Pillows don't help because within 30 - 60 seconds I begin tossing and turning due to pain and the pillows are quickly discarded. I can't STAY STILL in one position long enough to fall asleep. Even when I've heavily medicated myself with sleeping pills once they wear off I begin tossing and turning again and I still wake up feeling unrested.
I know the first answer was to go back and see someone. I tried to see a supposed Ortho specialist last March but he blew me off and passed me on to his PA who didn't seem to know ANYTHING about scoliosis. They took X-Rays and I got a note back saying, "Fusion looks good, you are fine." and that was it. Well I'm NOT fine, I'm in pain. I saw the xrays and the rods do look fine, I didn't see any cracks or anything obvious, but that doesn't mean I'm fine. I was so frustrated. I started going to a physical therapist in September and I have been working with her. She's nice and tries to help but I'm not sure she understands the best things to do for me. She's tried to find exercises that will strengthen my core but there are very few things I actually do that don't hurt my back significantly. We've tried a few variations of leg lifts that seem to work, but they are extremely painful on my lower back. I'm not sure if the PT is helping or not. I'm still in pain and in fact sometimes I'm in more pain after PT. I have lost 20 lbs since starting the PT which is nice though.
So I did some research and found a new spinal specialist in my area. Dr Good at the Virginia Spine Institute? Anyone heard of him? He is close to me and specializes in Adult Scoliosis so I hope he can help. I have an appointment Monday and they said they will take xrays and maybe a CT. Anything I should ask for or take with me? I wish I had some existing imagery to bring with me but I don't.
This community seems very well informed and I wish I had known about it the past 12 years. Thanks in advance for any help.
-Mike
I had corrective surgery when I was 16 for my scoliosis and kyphosis. I had an S curve with a 60 and 55 degree curves and no one caught my condition until the kyphosis started and my spine started to stick out of my back. I had regular scoliosis screenings in school but for whatever reason they were NOT effective. By the time they caught it we tried bracing but it was ineffective and my curves were progressing quickly. I was growing rapdily and was already 6'2" my freshman year of high schoool. The bracing was terrible anyway, in retrospect having the surgery even with a fusion was so much better than that stupid brace. I had 2 rods put in and a fusion from T4-L4 with bone taken from my hip. I wish I had pictures to share but the surgery was done in 1999 and I only recently tried to get personal copies of my xrays and imaging only to be told that the hospital and doctor office had discarded them! I was livid! Especially when they made such a big deal about keeping them originally, even when we took them between offices they told us we were just "borrowing" the images and needed to return them ASAP.
Anyway, the surgery was successful and while recovery was long and hard and I had an extremely difficult time coming to grips with the limited mobility afterwards for the most part my pain was reduced after surgery and recovery. I was extremely active and athletic pre-surgery and was an active basketball player. I was told by my doctors and surgeons that post surgery I had to stop playing ALL contact sports. So fast forwarding to today I've learned to deal with my limitations and with pain. The problem is that in the past year my pain has started to get worse. Either that or my tolerance for it is finally wearing thin. I have also put on probably 60lbs since my surgery and I struggle with my weight now since I cannot be active like I once was. My biggest issues right now are sitting at work and sleeping at night. I just CANNOT get comfortable when sitting or sleeping. It's so bad that I've spent some days at work pacing around my office and finding excuses to go outside for breaks. Sitting in an office chair just kills me. Unfortunately I do have a desk job and I spend most of my day sitting at desks working on a computer. At night I toss and turn constantly. I cannot stay in one position for more than 5 minutes. I've learned to deal with it but it bothers my wife and I don't feel like I ever have rested sleep. I wake up at least 3-4 times during the night in pain and contorted in some weird position. For years I was too busy dealing with college or starting my career and I just sorted powered through it all. It was miserable by I had enough other big problems in my life that being in pain constantly just seemed par for the course. Well I finally found some stability and now the pain seems that much more worse. I just want to know what it feels like to sleep well again, or go to work and not be in pain. It's hard to focus on my job when my lower back is throbbing in pain.
So I have a few questions for the rest of you who seem much more knowledgeable about these things:
1.) How much pain is normal for 12 years post-op? I can't tell if my tolerance has gone down or my pain has really gone up but I just don't seem to be able to take this anymore. I used to basically live on ibuprofen for pain but these days I can take 800-1000mg and it has ZERO effect. For years I just told myself that pain was normal and with my condition there's nothing I can do. I used to just deal with it ... but I feel like I can't anymore. My pain is a deep throbbing/burning pain in my lower back and I also have throbbing/sharp pains near my hip where they removed the bone. I've never understood the hip pain. Is that normal? Is this some kind of phantom pain? I had always assumed the hip would have just healed itself I wouldn't have to worry about it anymore.
2.) How do the rest of you stay in shape? What works best? I've tried diets ... but one of the few things I enjoy in life is food and I've never done well with diets, I just can't stay on them. I also struggle with exercise because I can't do the things I used to do. I've gone to physical trainers and physical therapy but I get frustrated because half the things they want me to do I can't do. They sit there and give me a blank stare when I tell them I can't do situps and they look at me like I'm not trying. It's frustrating when people don't understand what it's like to have your spine fused. I had one physical therapist try to give me all these exercises to do with bands on a wall and I kept trying to explain to her that I can't do things like rotate my whole back or bend over and they just don't get it .... what does work? All of my weight is on my stomach. I walk a lot and do weight training but I haven't found any way to keep my beer belly down as I can't really do sit ups, crunches, or anything like that.
3.) How do you sleep? Am I the only one who tosses and turns all night? I've had people tell me to just put a pillow between my legs, or under my back, or rest my arm on one, etc etc etc. Pillows don't help because within 30 - 60 seconds I begin tossing and turning due to pain and the pillows are quickly discarded. I can't STAY STILL in one position long enough to fall asleep. Even when I've heavily medicated myself with sleeping pills once they wear off I begin tossing and turning again and I still wake up feeling unrested.
I know the first answer was to go back and see someone. I tried to see a supposed Ortho specialist last March but he blew me off and passed me on to his PA who didn't seem to know ANYTHING about scoliosis. They took X-Rays and I got a note back saying, "Fusion looks good, you are fine." and that was it. Well I'm NOT fine, I'm in pain. I saw the xrays and the rods do look fine, I didn't see any cracks or anything obvious, but that doesn't mean I'm fine. I was so frustrated. I started going to a physical therapist in September and I have been working with her. She's nice and tries to help but I'm not sure she understands the best things to do for me. She's tried to find exercises that will strengthen my core but there are very few things I actually do that don't hurt my back significantly. We've tried a few variations of leg lifts that seem to work, but they are extremely painful on my lower back. I'm not sure if the PT is helping or not. I'm still in pain and in fact sometimes I'm in more pain after PT. I have lost 20 lbs since starting the PT which is nice though.
So I did some research and found a new spinal specialist in my area. Dr Good at the Virginia Spine Institute? Anyone heard of him? He is close to me and specializes in Adult Scoliosis so I hope he can help. I have an appointment Monday and they said they will take xrays and maybe a CT. Anything I should ask for or take with me? I wish I had some existing imagery to bring with me but I don't.
This community seems very well informed and I wish I had known about it the past 12 years. Thanks in advance for any help.
-Mike
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