Hi all,
I'm brand new to posting to the board, but I have spent lots of time reading posts here since my daughter was diagnosed last month with scoliosis. This forum is a great source of information! I have more questions, so I would like to tell my story and ask for advice.
My daughter who is 17 years old was experiencing some mild lower back pain around Thanksgiving, so we took her to the pediatrician. Pediatrician immediately panicked after checking her back. She had screened her when she was around 12 years old and told us that our daughter didn't have scoliosis. I remember it because she had found mild scoliosis in my older son at around the same age, and I just knew that my daughter would also end up having scoliosis. I was surprised and relieved to find out she didn't. I really didn't know that much about scoliosis at the time. My son was checked every 6 months and the orthopedic specialist never really gave me any information other than everything looks good, no need for bracing, etc. People in my family have mild scoliosis, but no one ever progressed to needing a brace or surgery. I really thought that since my daughter didn't have it at 12, she wouldn't have it period. Pretty naive I know.
Well, as we found out from the orthopedic specialist, my daughter definitely does have scoliosis. She has a 42 degree curve and also a bulging disc. No idea if the bulging disc is related to the scoliosis or not. Orthopedic specialist did not really give me any information, just said she has a 42 degree curve in her lower back and may need surgery. He wasn't sure yet if we would need surgery as the curve might have stabilized and we had no idea how the curve had progressed over time. Scheduled an MRI and told us to come back in April to discuss more. I was shell shocked at the time, so I didn't really ask any questions, didn't really know what questions to ask. Now I have lots of questions of course.
I remembered that my daughter had an emergency appendectomy when she was 14 and she was diagnosed using a CT scan. I thought the CT scan might would provide some information about the progression of her curve, so I requested it from the hospital. I was shocked to find "moderate rotatatory levoscoliosis" as a finding on the CT report. Needless to say, I was pretty upset that no one bothered to tell us about it at the time. The curve is listed as a thoracolumbar curve on the CT report. That is pretty much the extent of what I know of her curve. I do have a copy of the more recent x ray, but the doctor did not provide any additional information at our appointment last month. His nurse called when the MRI results were in and said my daughter did a have bulging disc (L5/S1) and the doctor referred her for physical therapy. I asked if he wanted to see us earlier than April due to the bulging disc, and she said no.
I'm not even sure if my daughter will require surgery. I know that 42 degrees is not that severe, given some other curves I have read about. However, I have also read that it's better to have surgery at a younger age and while the curve is not too big. The aging process can cause a previously stable curve to start progressing again. To complicate matters more, my daughter is a hunter jumper rider and her long term career goal is to open her own barn and teach lessons. As a parent, I've been more worried about her financial security if she follows this career path, but now I have to worry if she will have to completely give up this dream because of back issues.
I've spent some time researching other doctors, as I definitely want to see someone else. I'd like opinions on what I have so far. I'm trying to get in to see the doctors at Texas Scottish Rites Hospital in Dallas We live in Baton Rouge, though, and they really don't take out of state patients. I've been told they will consider our case and I've sent our records to them. I'm not sure if we will be successful in getting an appointment with them. I also like what I've read about Dr. Hey, and I'm considering making an appointment with him. His office is almost 15 hours away from where we live, so I'm worried about travel if we end up requiring surgery. Yesterday, my husband's allergist recommended Dr. Andrew King in New Orleans. Somehow, I had missed him in my research! So I made an appointment with him for January 22nd.
Any advice or comments on these doctors? Is there something else I should be doing or another doctor I should consider? My insurance is pretty flexible in terms of who I can see and I don't have a very high copay. However, I have one son in college in Connecticut, and we don't have a lot of extra money right now for travel. If we find a doctor that requires travel, we will make it happen, but I'm wondering if I should even be thinking about this now when I'm not sure if she is even a surgery candidate. Am I overreacting at this point? She is a high school senior and will start college in the fall, of course assuming everything is okay. I keep thinking that if I wait until April to see my regular doctor and he recommends surgery then I won't have much to time to react, as she would probably need to do the surgery during the summer. What do you think?
Thanks for reading!
Emy
I'm brand new to posting to the board, but I have spent lots of time reading posts here since my daughter was diagnosed last month with scoliosis. This forum is a great source of information! I have more questions, so I would like to tell my story and ask for advice.
My daughter who is 17 years old was experiencing some mild lower back pain around Thanksgiving, so we took her to the pediatrician. Pediatrician immediately panicked after checking her back. She had screened her when she was around 12 years old and told us that our daughter didn't have scoliosis. I remember it because she had found mild scoliosis in my older son at around the same age, and I just knew that my daughter would also end up having scoliosis. I was surprised and relieved to find out she didn't. I really didn't know that much about scoliosis at the time. My son was checked every 6 months and the orthopedic specialist never really gave me any information other than everything looks good, no need for bracing, etc. People in my family have mild scoliosis, but no one ever progressed to needing a brace or surgery. I really thought that since my daughter didn't have it at 12, she wouldn't have it period. Pretty naive I know.
Well, as we found out from the orthopedic specialist, my daughter definitely does have scoliosis. She has a 42 degree curve and also a bulging disc. No idea if the bulging disc is related to the scoliosis or not. Orthopedic specialist did not really give me any information, just said she has a 42 degree curve in her lower back and may need surgery. He wasn't sure yet if we would need surgery as the curve might have stabilized and we had no idea how the curve had progressed over time. Scheduled an MRI and told us to come back in April to discuss more. I was shell shocked at the time, so I didn't really ask any questions, didn't really know what questions to ask. Now I have lots of questions of course.
I remembered that my daughter had an emergency appendectomy when she was 14 and she was diagnosed using a CT scan. I thought the CT scan might would provide some information about the progression of her curve, so I requested it from the hospital. I was shocked to find "moderate rotatatory levoscoliosis" as a finding on the CT report. Needless to say, I was pretty upset that no one bothered to tell us about it at the time. The curve is listed as a thoracolumbar curve on the CT report. That is pretty much the extent of what I know of her curve. I do have a copy of the more recent x ray, but the doctor did not provide any additional information at our appointment last month. His nurse called when the MRI results were in and said my daughter did a have bulging disc (L5/S1) and the doctor referred her for physical therapy. I asked if he wanted to see us earlier than April due to the bulging disc, and she said no.
I'm not even sure if my daughter will require surgery. I know that 42 degrees is not that severe, given some other curves I have read about. However, I have also read that it's better to have surgery at a younger age and while the curve is not too big. The aging process can cause a previously stable curve to start progressing again. To complicate matters more, my daughter is a hunter jumper rider and her long term career goal is to open her own barn and teach lessons. As a parent, I've been more worried about her financial security if she follows this career path, but now I have to worry if she will have to completely give up this dream because of back issues.
I've spent some time researching other doctors, as I definitely want to see someone else. I'd like opinions on what I have so far. I'm trying to get in to see the doctors at Texas Scottish Rites Hospital in Dallas We live in Baton Rouge, though, and they really don't take out of state patients. I've been told they will consider our case and I've sent our records to them. I'm not sure if we will be successful in getting an appointment with them. I also like what I've read about Dr. Hey, and I'm considering making an appointment with him. His office is almost 15 hours away from where we live, so I'm worried about travel if we end up requiring surgery. Yesterday, my husband's allergist recommended Dr. Andrew King in New Orleans. Somehow, I had missed him in my research! So I made an appointment with him for January 22nd.
Any advice or comments on these doctors? Is there something else I should be doing or another doctor I should consider? My insurance is pretty flexible in terms of who I can see and I don't have a very high copay. However, I have one son in college in Connecticut, and we don't have a lot of extra money right now for travel. If we find a doctor that requires travel, we will make it happen, but I'm wondering if I should even be thinking about this now when I'm not sure if she is even a surgery candidate. Am I overreacting at this point? She is a high school senior and will start college in the fall, of course assuming everything is okay. I keep thinking that if I wait until April to see my regular doctor and he recommends surgery then I won't have much to time to react, as she would probably need to do the surgery during the summer. What do you think?
Thanks for reading!
Emy
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