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Thread: New here and daughter just diagnosed in December

  1. #1
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    New here and daughter just diagnosed in December

    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

  2. #2
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    My first post was so long that I decided to add this part separately. My 12 year old daughter was also just seen by our orthopedic specialist. She has a 7 degree curve that seems to be along the same curvature as my older daughter's curve (according to the doc). I've read that <10 degrees is not really scoliosis, but I'm guessing she may be following the same age progression as my older one. If so, my oldest went from a curve that was not noticeable by the pediatrician at 12 to a moderate curve at 14 (doctor looked at the old CT from when she was 14 and estimated that the curve was probably 31 degrees then). This means that I really need to find a good doctor, not just for my oldest but for my younger one too.

    I asked about the Scoliscore test, but doctor says it isn't worth the money. I also read something similar on Dr. Hey's blog. I called the only other Scoliosis specialist that I can find in Baton Rouge, and his office says he doesn't order the Scoliscore either. Maybe Dr. King in New Orleans does? I realize that follow-up is still required, even with a low Scolicore. I just feel like it would be nice to have the information. Any thoughts?

    Emy

  3. #3
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    Emy,
    Welcome! I would be upset, too, if I found out from a CT report that they found scoliosis and didn't tell me! She could have had treatment. You can go to the resources section of the home page of this forum to find SRS certified doctors in your area. Otherwise Shriner's Hospitals will see kids under 18 for free (they do bill insurances IF the kids are insured, but don't charge you the copay's, etc.). I've "heard" on here that the best one is in Philidelphia, PA. If you are willing to travel all the way to NC, then that might be an option. I've heard good things about Dr. Hey, also. However, I made an appointment with him and he cancelled me with no explanation. Thankfully we were planning on driving and didn't buy plane tickets! His secretary said he's even cancelled surgeries last minute. I'm not saying he'd do that to you, as there have been many satisfied patients of his here on the forum. I honestly think it was an insurance thing, since my insurance declined to pay for even a consult. I was willing to pay out-of-pocket for the consult, but couldn't have had surgery with him. He does fuse the "smaller" curves to save pain and suffering later on in life.

    I'm a little worried that she has a bulging disc at only 17. I have problems with a bulging L5/S1 disc and it's extremely painful. You are right to seek opinions elsewhere. Have you called Dr. Hey's office? If your insurance will pay, I think you will probably be fine there, but not sure. I would recommend Shriner's before she turns 18. They see tons of cases and would be reliable to recommend the proper course of action for your daughter. If she turns 18, then I would look elsewhere.

    I wish I'd known about the Shriner's when my kids were diagnosed. They went untreated as your daughter did. At 12 years old my daughter was between 15 and 20 degrees. The doc said she was almost done growing and didn't need a follow-up, ever. She was premenarche, too. I stupidly listened. Now I have no idea how bad my daughter's back is and she suffers from back pain but refuses to be evaluated by anyone even though she has insurance. She's 22 and very headstrong! Now there's not a thing I can do about it. My son was fortunately a case of self-resolving JIS.

    I wish you the best with your daughter.
    Last edited by rohrer01; 01-11-2013 at 09:54 AM.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  4. #4
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    Quote Originally Posted by rohrer01 View Post
    Emy,
    Welcome! I would be upset, too, if I found out from a CT report that they found scoliosis and didn't tell me! She could have had treatment. You can go to the resources section of the home page of this forum to find SRS certified doctors in your area. Otherwise Shriner's Hospitals will see kids under 18 for free (they do bill insurances IF the kids are insured, but don't charge you the copay's, etc.). I've "heard" on here that the best one is in Philidelphia, PA. If you are willing to travel all the way to NC, then that might be an option. I've heard good things about Dr. Hey, also. However, I made an appointment with him and he cancelled me with no explanation. Thankfully we were planning on driving and didn't buy plane tickets! His secretary said he's even cancelled surgeries last minute. I'm not saying he'd do that to you, as there have been many satisfied patients of his here on the forum. I honestly think it was an insurance thing, since my insurance declined to pay for even a consult. I was willing to pay out-of-pocket for the consult, but couldn't have had surgery with him. He does fuse the "smaller" curves to save pain and suffering later on in life.

    I'm a little worried that she has a bulging disc at only 17. I have problems with a bulging L5/S1 disc and it's extremely painful. You are right to seek opinions elsewhere. Have you called Dr. Hey's office? If your insurance will pay, I think you will probably be fine there, but not sure. I would recommend Shriner's before she turns 18. They see tons of cases and would be reliable to recommend the proper course of action for your daughter. If she turns 18, then I would look elsewhere.

    I wish I'd known about the Shriner's when my kids were diagnosed. They went untreated as your daughter did. At 12 years old my daughter was between 15 and 20 degrees. The doc said she was almost done growing and didn't need a follow-up, ever. She was premenarche, too. I stupidly listened. Now I have no idea how bad my daughter's back is and she suffers from back pain but refuses to be evaluated by anyone even though she has insurance. She's 22 and very headstrong! Now there's not a thing I can do about it. My son was fortunately a case of self-resolving JIS.

    I wish you the best with your daughter.
    Thank you so much for your reply! I'm so sorry that your daughter is suffering with back pain. I myself had back surgery (only microdiscectomy) for a herniated disc (L4/L5) ten years ago. I was so scared and a lot of people tried to talk me out of it. Fortunately, I guess, my pain was so severe that it limited walking/sitting, etc. and I knew I had to do something. The surgery was a lifesaver! I also have a bulging disc that causes pain occasionally, but I have been treating it conservatively. Back pain really affects your entire life and outlook. Before having surgery, I would just continue on, despite hurting, thinking that I was not going to let this slow me down. After surgery, I realized how important it is to do your best to take care of your back. I hope your daughter will realize this soon and seek treatment. I think my daughter would be the same way which is why my husband and I really want to deal with this now while she is still under our care. Once they leave the nest, so much is out of our control.

    I'm also sorry to hear that Dr. Hey cancelled your appointment. We would need to fly, as driving would increase the number of missed days of school and work. While I really like what I have read about Dr. Hey, I could see how he might have to cancel appointments and surgery sometimes since he is the only doctor in his office. I think I will wait and see what Dr. King says before making a final decision about traveling to North Carolina. I did talk to his office and they can see me on a Friday in early March.

    I have an aunt in Dallas so I am really hoping to find a doctor there. I will look into Shriners in Philadelphia too.

    Emy

  5. #5
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    Welcome also! I am 67 years old and had surgery by Dr. Lawrence Lenke 5 1/2 months ago in St. Louis. (I live in SC). He performs surgery on adults and children. I have had very good results so far. I had a 68 degree curve with a lot of rotation, bulging disks and was fused from T4 to sacrum. I was not treated as a child and my scoliosis was not a problem until about 4 years ago when over 3 years I lost 5 1/2 inches in height. I regained 2 inches with my surgery and my curve was corrected down to about 23 degrees. I am now pain free and and am able to do just about anything I want. He does have a long waiting list but is worth waiting for. He moved my surgery date twice and made it sooner rather than later although I did wait about 8 months from my first appointment with him.Check out his website and you can see some pictures of some of the amazing reconstructions he has done. I am a retired nurse and consulted with several surgeons over a 3 year period (including the Mayo Clinic in Minn.) and am very glad he was my surgeon. My surgery was without any complications and I was off pain meds at 6 weeks. Best of luck to you and your daughter.
    Jane

  6. #6
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    Quote Originally Posted by jane d View Post
    Welcome also! I am 67 years old and had surgery by Dr. Lawrence Lenke 5 1/2 months ago in St. Louis. (I live in SC). He performs surgery on adults and children. I have had very good results so far. I had a 68 degree curve with a lot of rotation, bulging disks and was fused from T4 to sacrum. I was not treated as a child and my scoliosis was not a problem until about 4 years ago when over 3 years I lost 5 1/2 inches in height. I regained 2 inches with my surgery and my curve was corrected down to about 23 degrees. I am now pain free and and am able to do just about anything I want. He does have a long waiting list but is worth waiting for. He moved my surgery date twice and made it sooner rather than later although I did wait about 8 months from my first appointment with him.Check out his website and you can see some pictures of some of the amazing reconstructions he has done. I am a retired nurse and consulted with several surgeons over a 3 year period (including the Mayo Clinic in Minn.) and am very glad he was my surgeon. My surgery was without any complications and I was off pain meds at 6 weeks. Best of luck to you and your daughter.
    Jane
    Jane,

    Thanks so much for the information. I have read about Dr. Lenke, but I thought I read he only accepted cases that met certain criteria. I will try to find out more. Anyone who knows for sure, please let me know!

    Do you know if there is any relationship between your scoliosis and your bulging discs? So glad you had such great results!

    Emy

  7. #7
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    Hi,

    If you're willing to travel to St Louis, you will not be disappointed with Dr Scott Luhmann, who specializes in pediatric scoliosis. He is a partner of Lenke. Dr Luhmann sees pts at Shriner's St Louis as well as at Washington Hospital I believe, if your insurance allows you to go there.

    My daughter had vertebral stapling for scoliosis several years ago with Dr Luhmann at Shriner's. We traveled 2000 miles from Oregon to get to him! He is superb, and did a great job with my daughter's surgery. We received extremely good care at Shriner's from all the staff. You can call his nurse, Janet Schick, at 314-432-3600, to check about putting in an application for care and arrange for an initial appointment. The application is as simple as name/address/basic problem. You do not need sponsorship from a Shrine Temple, and they take patients from all states.

    Best of luck,
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  8. #8
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    Similar to Dr. Lenke, Dr Bridwell is in the same building

    Hi,
    I am about 6 wks post op with Dr Bridwell. Needless to say that either doctor are the tops, Dr Lenke is about 10 years younger and did his fellowship with Dr Bridwell. I am sure that they do consult each other.

    Dr Bridwell is very conservative as to giving out dates for surgery therefore you don't have the long wait as Dr Lenke. Bridwell will see you and if you don't fit the requirements, he will tell you. I am sure that they both do pediatrics. Give either one a try.

    This is not a trivial surgery and if I have to do it again, I would not mind travelling from Mexico to do this. We have gone thru a lot of expense (renting a place for 2 months at the MetroLofts) just to be sure all is well before returning. It was not necessary but it was our choice and my back.

    I had to find someone I could trust that I was assured by observing him look at my xrays in a million of ways and angles that he knew what to do 'mechanically'. It is like hiring a contractor to fix the main structure of your house... before the next hurracaine or earthquake.

    good luck, gardenia
    Gardenia
    Baja California, Mexico & El Centro, Ca
    pre-surgery 75į and 89į - post ?
    Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
    T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

  9. #9
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    Again, thanks for the responses. You are all confirming what I thought: that it is best to try and find the best doctor you can and travel if necessary as your budget allows.

    Emy

  10. #10
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    Emy, I am not sure if there was a relationship between my scoliosis and my bulging disks. I would imagine that my dramatic loss of height and the rotation of my spine would have certainly placed a lot of pressure on my disks. I also had sciatic pain for about 18 years before my surgery.

    Dr. Lenke is currently head of spine surgery at Washington University School of Medicine in St. Louis. I had a consultation with Dr. Bridwell 3 years ago but as I had talked to several of Dr. Lenke's patients living in my city( one of whom is a physician) I made the decision to return to St. Louis for a consultation with him. He spent an hour with me, answered all of my questions, and I felt very comfortable with him. I am not sure of his criteria for accepting patients.

    Jane

  11. #11
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    Quote Originally Posted by emybr View Post
    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.
    Hi. I'm sorry about the diagnosis. You sound very knowledgeable to me!

    So your daughter was 31* at 14 and 42 degrees at 17. That's VERY roughly about 3.5* a year assuming a uniform progression rate. It could be that she got to 42* at maturity and hung there. Hard to say other than post-maturity progression has not been shown. That may be what these surgeons are looking for when advising on a sub-surgical curve like your daughter has. So you are correct that she might not need surgery.

    Dr. Hey seems to operate at less than traditional surgery trigger angles with "a stitch in time saves nine" approach. Also, there is at least one pediatric orthopedic surgeon who operates on thoracolumbar (TL) curves at lower than the traditional trigger angles specifically in order to save levels per one testimonial. With TL curves, L3 appears to be a "make or break" level where a child can be expected to need only one operation versus eventually needing an extension to pelvis. I'm a lay person so it doesn't matter what I think but if my child had a TL, I would consider it a potential emergency due to this aspect. My question to the surgeon would be where would the fusion end if done now versus where might it end if you wait. That would be a critical piece of knowledge I would demand.

    In re the H/J career aspiration, I can only say both my daughters were released for riding but they had T curves and both are fused T4 to L1. It is my sense that it is hard to get an accurate opinion from a surgeon on whether or not your daughter could continue H/J with a TL fusion because they don't have the expertise to say one way or the other. I will give you my WORTHLESS LAY opinion... I think H/J is more realistic than dressage because there is no sit trot involved in H/J. People with normal backs can ruin them with sit trot in my opinion so I think I would steer my daughters away form dressage if they had T/L fusions. (They don't ride... I tried to interest them and they did take jumping lessons for about a year but didn't love it.). One caveat is that top jumpers in fact do some decent flat work so there may be sit trot training involved... don't really know. I know dressage.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #12
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    Age 17 with a L5-S1 bulge is probably the main issue right now....and physical therapy and water therapy is a good thing. Itís the lowest disc and takes the brunt of it all. Its also a tricky level to fuse......Sigh....

    I had twin 50ís at your daughters age, jumped off cliffs my whole life on skis and pretty much abused my spine as much as possible and made it to age 49, but didnít have disc problems till my 40ís ďthat I know aboutĒ. If I knew I had disc issues, I might have made some changes....these changes would have been very difficult at a young age, since we can really love the things we do once we set our direction. How is she doing with this? It has to be extremely difficult for her.

    All diagnostics are your or her property. After any diagnostics, I always get copies burned to disc, you can call the radiology dept and request these. Donít accept any excuses. Radiologists have a tendency to spot all sorts of things that many will miss. They will detail in their reports. You gotta love them.

    Dehydration is important. Everybody is dehydrated. Discs become dehydrated. Water is a good thing.....some topics to read about.

    Do you have any x-rays you could post?

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  13. #13
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    Okay Ti Ed's post triggered another question which were it my daughter I would want to know...

    Is the disc injury likely due to the 42* curve and if so would straightening the curve now help avoid future disc injuries?

    I think there is ample evidence that just having a curve accelerates damage to the spine. That is something that I don't think pediatric surgeons talk about much. Rather they seem to be entirely focused on the angle at maturity. But if clearly sub-surgical angles reliably result in the need to fuse due to damage later then that should be a consideration now in my little opinion.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  14. #14
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    Dr. Hey saying earlier is better because shorter fusions are sometimes possible

    Here's a woman with what looks to be a TL curve who needed fusion to pelvis because she waited too long and trashed her lower discs.

    http://drlloydhey.blogspot.com/2013/...eat-sleep.html

    It would have been nice to fix her scoliosis with a shorter fusion, but her lower discs had already worn out too badly ---- good motivation to fix your scoliosis when you are younger and before you have done too much damage to the lower levels.
    This is the exact point I was making upthread. Waiting on TL curves appears to be a high risk game where the patients might usually lose.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  15. #15
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    Quote Originally Posted by Pooka1 View Post
    <snip>So your daughter was 31* at 14 and 42 degrees at 17. That's VERY roughly about 3.5* a year assuming a uniform progression rate. It could be that she got to 42* at maturity and hung there. <snip>
    One really important point to note here is the 31 degrees was when she was laying down, and a CT scan is not set up in such a way as to measure a scoliosis curve accurately (distance from x-ray source to spine, etc). Her curve was almost certainly more than 31 degrees at that time, and may have even been 42 degrees already. So it is entirely possible that the curve has been completely stable since maturity, which would strongly favor avoiding surgery at this time.
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

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