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Hi Everyone,
This is my first post, but I've been coming here for months, reading and learning as much as I can. Many of you have already helped me and answered questions I had, and you didn't even know I was out there, so thank you! I also really love when people share pictures, BTW. It's been a bit of a roller coaster ride with my back, especially in the last couple years since I started going to a pain management doctor, and then in the last couple months since I saw my first spine surgeon and learned my curve is worse than I thought, and he recommended surgery. I also just finished reading the book Scoliosis Surgery, The Definitive Patient's Reference by David K. Wolpert, which I got because I saw several people here recommend it. It is a good book, and I'm sure I'll be referring back to it a lot.
I'm a 44-year-old woman, and I discovered my curve as a teenager, but I think I was 16 yrs old before I mentioned it to my family doctor. He said yes, I had mild scoliosis, but we'd just keep an eye on it. If it didn't get any worse by the time I was done growing, I'd be fine, there wouldn't be any treatment needed, and there wouldn't be any symptoms from it. (Oh, if only that had been true.) He didn't get an x-ray, so I don't know what the degree of the curve was then. And I don't know how we were going to "keep an eye on it" when we didn't know the size of the curve to begin with. I don't remember it even coming up again, and I saw him for years after that. I think he really just felt the curve was so small as to be a non-issue.
At about 20, I started going to a chiropractor for low back pain. He confirmed I had scoliosis, and I remember him showing me the x-ray. He said I had a thoracolumbar curve, and the Cobb angle was 22 degrees, and yes, that was considered a mild/small curve. I was glad to hear that, and had been told it wouldn't progress, so I didn't worry too much. He also measured my legs and said my right leg was a little bit shorter than the left. He gave me a heel lift to put in my right shoe to make my pelvis level. I hated that thing at first, but once I got used to it I really liked how it made me feel level. I still have the last one he gave me and I still use it, even though I haven't seen him in at least 10 years. BTW, he never claimed the heel lift (or any treatment he did) would "cure" my scoliosis, but I went to him about once a month for years, which did make my back feel better.
Incidentally, at age 25, I went to an orthopedic surgeon for knee pain, not related to my back. While there, I mentioned I had scoliosis and that I was seeing a chiropractor. The ortho said, very bluntly (almost rudely) that no matter what I did, my curve would progress by about 1 degree per year. I was very upset to hear this. I think he was mostly trying to say I wasting my money on a chiropractor. But that was the first time I'd ever heard that my "mild" curve would progress, no matter what I did. I'd always been told the opposite. I wasn't sure if he knew what he was talking about, but because of that, I guess it's always been in the back of my mind that the curve might get worse. I just didn't really think it would, or maybe I just hoped it wouldn't. Unfortunately, in my case, he was exactly right.
My 20s and early 30s passed without much of a problem with my back. I would get backaches a lot, but Tylenol or Motrin and rest would take care of it. But then in my late 30s, I started to get severe lower back pain with standing, even for just 10 to 15 minutes. Standing in the kitchen making dinner, I'd have to sit down. Grocery shopping became almost unbearable. Luckily, I had a desk job (still do, but only P/T now), so I could still work okay, though I would often be uncomfortable. I went to my family doctor and we tried muscle relaxers, a TENS unit, exercises, NSAIDs. Nothing really helped. I was in the process of moving out of the area when I saw her for the last time, and she was finally understanding how bad the pain was, and how much it was affecting my life. She wanted to send me to physical therapy and to a surgeon. (I did NOT want to see a surgeon, esp. after that last guy.) But I was moving, so that didn't happen.
To cope, I actually (on my own, and against her advice) bought a lumbar back brace at the pharmacy a few years ago. It has metal springs in the lumbar area. I put on 2 of those "waist-nipper/girdle" undergarments, then put the lumbar brace on over that, then my clothes over it. This little "contraption" has helped me more than anything over the past several years. Of course, I feel like I'm stuffed in like a sausage and it's not very comfortable, but I only wear it to do things like grocery shopping, certain housework, etc., or if I know I'm going to be doing some walking. I'll still have pain, and will pay for doing those activities later with increased pain and soreness, but it allows me to do those things without the pain being unbearable.
About 2-1/2 years ago, I started going to a pain mgmt doctor. He's done steroid facet injections at many different levels, nerve blocks, even a rhizotomy, with no more than a couple days of pain relief. He also did a lumbar epidural steroid injection which was horrendous and actually increased my pain, and I couldn't even stand up straight for days. It took me a good 3 weeks to get back to my "baseline" level of pain. NOT a good experience with that, and that's obviously not what happens with most people who get that injection. He didn't have a good explanation as to why it affected me that way. Needless to say, I was not willing to try it again when he asked. The only thing he's done that's helped is prescribe pain medication. I resisted that for a long time, really not wanting to start down that road, and hoping the injections would work, but they haven't so I do take Vicodin, and sometimes Ultram and muscle relaxers. I only take the pain meds in the evening, after I'm done working, because they make me feel "spaced out" and it feels hard to concentrate. Now that everything else he's tried hasn't worked, the only thing he has left to offer is either a spinal nerve stimulator implant (no, thank you) or referring me to a surgeon.
Now I've had an MRI, CT scan, and lumbar x-rays. I had copies of the reports, but not the actual images. The MRI was done first, about 2-1/2 years ago, and it didn't note the degree of the curve. The CT scan didn't either, but I asked them to calculate it, and they said it was 33 degrees. Same thing with the lumbar x-rays, they said 33 degrees. But they used phrases like "moderately severe thoracolumbar scoliosis" (severe?!) and "considerable rotational component" in the reports, which didn't make sense to me. I mean, for so long now, I've been wondering why I have so much pain, and more noticeable deformity, with just a 33 degree curve? I was thinking I probably would have to have surgery at some point, because of the pain, and as the curve progressed, but I wanted to think it would be way, way in the future - if then! I thought of it as a last resort and wanted to try everything else first. At the beginning of this year, I was even going to get the SpineCor brace, to see if it would give me some pain relief. But once the orthotist saw my images (and e-mailed SpineCor to confirm) he said it wouldn't work for me, and would actually make my low back pain WORSE (I guess because of lateral listhesis I have at 1 level?). Wow. They don't mention that possibility on their websites or testimonials do they? LOL
So... I finally went to see a spine surgeon in May. He said he thought my curve was more than 33 degrees, and sent me down the hall for a full back x-ray. I think that's the key. The other studies were ordered by the pain mgmt doctor and focused on my lower back, since that's where most of my pain is, but the whole back needs to be x-rayed to correctly calculate the Cobb angle, right? I wasn't thinking about that. This surgeon calculated the curve at 46 to 50 degrees! And he seemed more than happy (if you know what I mean) to operate. He said he'd probably fuse me from T10 to the sacrum. I was shocked to hear 46 to 50, but I guess not completely, as it makes a lot more sense now as to why I have as much pain and deformity as I do. I think when they said 33 degrees, they weren't using the right levels to calculate the Cobb angle. They weren't going up high enough. Does that seem like what happened?
I'm now trying to wrap my head around the idea of surgery, and this forum has been a huge help, because for so long I wouldn't even consider it. I remember the first time I saw post-op spinal fusion x-rays here, with all the instrumentation. They took my breath away! But then I started to get curious and want to learn more. Now I really like looking at the pictures. Now I have an appt for a 2nd opinion, but the 2nd opinion surgeon is likely the one I'd want to do the surgery, assuming I can work up the courage, at some point, possibly, maybe, for surgery. LOL. His name is Dr. Ganocy, in Los Angeles, and I saw his name mentioned here by a person who had surgery with him and recommended him. I found that by doing a search here on his name, but I don't think that person is here on the forum anymore. Dr. Ganocy is also listed on the SRS site, whereas the 1st surgeon I went to is not (and I didn't really feel like I "clicked" with him anyway). There is also another surgeon on the SRS list who is covered by my insurance and is in San Diego. That would definitely be an easier drive than to L.A., but I haven't found out much about him, and he's younger (so, less experience?). How can I best find out more about a surgeon?
Well, if you're still reading this, thank you. Any advice would be welcome, and I'll try not to be so long-winded in the future!
Lisa
This is my first post, but I've been coming here for months, reading and learning as much as I can. Many of you have already helped me and answered questions I had, and you didn't even know I was out there, so thank you! I also really love when people share pictures, BTW. It's been a bit of a roller coaster ride with my back, especially in the last couple years since I started going to a pain management doctor, and then in the last couple months since I saw my first spine surgeon and learned my curve is worse than I thought, and he recommended surgery. I also just finished reading the book Scoliosis Surgery, The Definitive Patient's Reference by David K. Wolpert, which I got because I saw several people here recommend it. It is a good book, and I'm sure I'll be referring back to it a lot.
I'm a 44-year-old woman, and I discovered my curve as a teenager, but I think I was 16 yrs old before I mentioned it to my family doctor. He said yes, I had mild scoliosis, but we'd just keep an eye on it. If it didn't get any worse by the time I was done growing, I'd be fine, there wouldn't be any treatment needed, and there wouldn't be any symptoms from it. (Oh, if only that had been true.) He didn't get an x-ray, so I don't know what the degree of the curve was then. And I don't know how we were going to "keep an eye on it" when we didn't know the size of the curve to begin with. I don't remember it even coming up again, and I saw him for years after that. I think he really just felt the curve was so small as to be a non-issue.
At about 20, I started going to a chiropractor for low back pain. He confirmed I had scoliosis, and I remember him showing me the x-ray. He said I had a thoracolumbar curve, and the Cobb angle was 22 degrees, and yes, that was considered a mild/small curve. I was glad to hear that, and had been told it wouldn't progress, so I didn't worry too much. He also measured my legs and said my right leg was a little bit shorter than the left. He gave me a heel lift to put in my right shoe to make my pelvis level. I hated that thing at first, but once I got used to it I really liked how it made me feel level. I still have the last one he gave me and I still use it, even though I haven't seen him in at least 10 years. BTW, he never claimed the heel lift (or any treatment he did) would "cure" my scoliosis, but I went to him about once a month for years, which did make my back feel better.
Incidentally, at age 25, I went to an orthopedic surgeon for knee pain, not related to my back. While there, I mentioned I had scoliosis and that I was seeing a chiropractor. The ortho said, very bluntly (almost rudely) that no matter what I did, my curve would progress by about 1 degree per year. I was very upset to hear this. I think he was mostly trying to say I wasting my money on a chiropractor. But that was the first time I'd ever heard that my "mild" curve would progress, no matter what I did. I'd always been told the opposite. I wasn't sure if he knew what he was talking about, but because of that, I guess it's always been in the back of my mind that the curve might get worse. I just didn't really think it would, or maybe I just hoped it wouldn't. Unfortunately, in my case, he was exactly right.
My 20s and early 30s passed without much of a problem with my back. I would get backaches a lot, but Tylenol or Motrin and rest would take care of it. But then in my late 30s, I started to get severe lower back pain with standing, even for just 10 to 15 minutes. Standing in the kitchen making dinner, I'd have to sit down. Grocery shopping became almost unbearable. Luckily, I had a desk job (still do, but only P/T now), so I could still work okay, though I would often be uncomfortable. I went to my family doctor and we tried muscle relaxers, a TENS unit, exercises, NSAIDs. Nothing really helped. I was in the process of moving out of the area when I saw her for the last time, and she was finally understanding how bad the pain was, and how much it was affecting my life. She wanted to send me to physical therapy and to a surgeon. (I did NOT want to see a surgeon, esp. after that last guy.) But I was moving, so that didn't happen.
To cope, I actually (on my own, and against her advice) bought a lumbar back brace at the pharmacy a few years ago. It has metal springs in the lumbar area. I put on 2 of those "waist-nipper/girdle" undergarments, then put the lumbar brace on over that, then my clothes over it. This little "contraption" has helped me more than anything over the past several years. Of course, I feel like I'm stuffed in like a sausage and it's not very comfortable, but I only wear it to do things like grocery shopping, certain housework, etc., or if I know I'm going to be doing some walking. I'll still have pain, and will pay for doing those activities later with increased pain and soreness, but it allows me to do those things without the pain being unbearable.
About 2-1/2 years ago, I started going to a pain mgmt doctor. He's done steroid facet injections at many different levels, nerve blocks, even a rhizotomy, with no more than a couple days of pain relief. He also did a lumbar epidural steroid injection which was horrendous and actually increased my pain, and I couldn't even stand up straight for days. It took me a good 3 weeks to get back to my "baseline" level of pain. NOT a good experience with that, and that's obviously not what happens with most people who get that injection. He didn't have a good explanation as to why it affected me that way. Needless to say, I was not willing to try it again when he asked. The only thing he's done that's helped is prescribe pain medication. I resisted that for a long time, really not wanting to start down that road, and hoping the injections would work, but they haven't so I do take Vicodin, and sometimes Ultram and muscle relaxers. I only take the pain meds in the evening, after I'm done working, because they make me feel "spaced out" and it feels hard to concentrate. Now that everything else he's tried hasn't worked, the only thing he has left to offer is either a spinal nerve stimulator implant (no, thank you) or referring me to a surgeon.
Now I've had an MRI, CT scan, and lumbar x-rays. I had copies of the reports, but not the actual images. The MRI was done first, about 2-1/2 years ago, and it didn't note the degree of the curve. The CT scan didn't either, but I asked them to calculate it, and they said it was 33 degrees. Same thing with the lumbar x-rays, they said 33 degrees. But they used phrases like "moderately severe thoracolumbar scoliosis" (severe?!) and "considerable rotational component" in the reports, which didn't make sense to me. I mean, for so long now, I've been wondering why I have so much pain, and more noticeable deformity, with just a 33 degree curve? I was thinking I probably would have to have surgery at some point, because of the pain, and as the curve progressed, but I wanted to think it would be way, way in the future - if then! I thought of it as a last resort and wanted to try everything else first. At the beginning of this year, I was even going to get the SpineCor brace, to see if it would give me some pain relief. But once the orthotist saw my images (and e-mailed SpineCor to confirm) he said it wouldn't work for me, and would actually make my low back pain WORSE (I guess because of lateral listhesis I have at 1 level?). Wow. They don't mention that possibility on their websites or testimonials do they? LOL
So... I finally went to see a spine surgeon in May. He said he thought my curve was more than 33 degrees, and sent me down the hall for a full back x-ray. I think that's the key. The other studies were ordered by the pain mgmt doctor and focused on my lower back, since that's where most of my pain is, but the whole back needs to be x-rayed to correctly calculate the Cobb angle, right? I wasn't thinking about that. This surgeon calculated the curve at 46 to 50 degrees! And he seemed more than happy (if you know what I mean) to operate. He said he'd probably fuse me from T10 to the sacrum. I was shocked to hear 46 to 50, but I guess not completely, as it makes a lot more sense now as to why I have as much pain and deformity as I do. I think when they said 33 degrees, they weren't using the right levels to calculate the Cobb angle. They weren't going up high enough. Does that seem like what happened?
I'm now trying to wrap my head around the idea of surgery, and this forum has been a huge help, because for so long I wouldn't even consider it. I remember the first time I saw post-op spinal fusion x-rays here, with all the instrumentation. They took my breath away! But then I started to get curious and want to learn more. Now I really like looking at the pictures. Now I have an appt for a 2nd opinion, but the 2nd opinion surgeon is likely the one I'd want to do the surgery, assuming I can work up the courage, at some point, possibly, maybe, for surgery. LOL. His name is Dr. Ganocy, in Los Angeles, and I saw his name mentioned here by a person who had surgery with him and recommended him. I found that by doing a search here on his name, but I don't think that person is here on the forum anymore. Dr. Ganocy is also listed on the SRS site, whereas the 1st surgeon I went to is not (and I didn't really feel like I "clicked" with him anyway). There is also another surgeon on the SRS list who is covered by my insurance and is in San Diego. That would definitely be an easier drive than to L.A., but I haven't found out much about him, and he's younger (so, less experience?). How can I best find out more about a surgeon?
Well, if you're still reading this, thank you. Any advice would be welcome, and I'll try not to be so long-winded in the future!
Lisa
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