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Thread: New here and daughter just diagnosed in December

  1. #16
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    Quote Originally Posted by Pooka1 View Post
    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?

    A good question.....without seeing an x-ray, its hard to assume anything. What kind of curve and where its located means everything. Itís the 1st question.......

    Disc injuries can happen from falls, lifting, lifting and rotating, DDD, scoliosis....etc.

    Disc recoveries are also dependent upon many different factors also.

    I had great results swimming in the ocean. I had 4 CT verified herniations. Age, degeneration, and force played a huge part in my status. Water and diet played some role......

    I blame all my problems on cheese pizza. (smiley face)
    Ed
    49 yr old male, now 60, the new 55...
    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

  2. #17
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    hi Emy
    suggest talking to doctor about chicken/egg question of
    curve and discs in kids/adolescents...
    many older people end up with disc problems and they have no
    scoliosis...
    blown or herniated discs is something that often happens with
    age...
    i have not heard much about injury to discs in young people...
    in my own case, i managed my scoli fine until i herniated discs...
    it was then that my pain and general spinal deterioration
    accelerated, and the pain became a major issue for me.

    jess

  3. #18
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    Quote Originally Posted by leahdragonfly View Post
    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.
    Excellent point. It is far from clear that she is a surgical candidate at all.
    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."

  4. #19
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    Hi emy,

    I just checked the Scoliosis Research Society provider listing for Louisiana, and the following providers are listed:

    James T. Bennett, MD
    Tulane Hospital for Children
    Department of Orthopedic Surgery SL-32
    1430 Tulane Avenue
    New Orleans, LA 70112
    Phone: (504) 988-3516
    Fax: 504-988-3517
    Specialties: Adolescent, Juvenile/Infantile

    Steve A. Guillory, PA-C
    The Spine Institute at Baton Rouge Orthopaedic Clinic
    8080 Bluebonnet BLVD
    Baton Rouge, LA 70810
    Phone: (225) 924-2424
    Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions

    Jorge E. Isaza, MD
    8080 Bluebonnet Boulevard
    Suite 1000
    Baton Rouge, LA 70810
    Phone: (225) 924-2424
    Fax: (225) 408-7869
    Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile

    Andrew G. King, MD
    Childrens Hospital-Ortho
    200 Henry Clay Avenue
    New Orleans, LA 70118 United States
    Phone: (504) 896-9569
    Fax: (504) 896-9849
    Specialties: Adolescent, Adult Scoliosis, Juvenile/Infantile

    Richard E. McCall, MD
    LSU Health Sciences Center
    1501 Kings Highway
    Shreveport, LA 71130-3932
    Phone: (318) 675-5390
    Fax: (318) 675-6186
    Specialties: Adolescent
    Pierce D. Nunley, MD
    Spine Institute of Louisiana
    1500 Line Avenue
    Shreveport, LA 71101 United States
    Phone: 318.629.5555
    http://www.louisianaspine.org
    Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions

    It looks like a good list to start with, and it seems like you could defer traveling at this point unless you don't like any of them and your daughter needs surgery. It is not easy traveling to another state for surgery, that is for sure!

    I recently asked about Scoliscore for my 7 y/o son who has an 18 degree curve and a strong family history. The pediatric spine specialist felt it was a waste because he would still need to be followed, and he said it would not change treatment. I don't really agree, since if we got a very low (risk) or very high-risk score, it might help guide treatment decisions. To me it is potentially an extra bit of info, however, it seems that not too many orthos have embraced the Scoliscore for what it is supposed to be at this point.
    Gayle, age 50
    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)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

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

  5. #20
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    hi Emy
    i would look into Shriners fast...
    if age 18 means she wouldn't qualify....when is your daugher's
    birthday...?

    jess

  6. #21
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    Quote Originally Posted by Pooka1 View Post

    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.
    Thank you for responding from a horsewoman's perspective. My daughter does equitation classes that do require a sitting trot. However, she will age out of juniors this year and probably will stay away from the equitation classes after that. No need for sitting trot in Hunter or Jumper classes, at least from my limited knowledge. She will absolutely be devastated if she can't ride anymore. I know we all have to deal with disappointments in life, but she is totally focused on horses right now. There is a lot more involved than riding too when you talk horse ownership. There is carrying feed bags, mucking stalls, picking out feet, etc. So much heavy lifting and bending. I'm worried but I'm not talking to her about those things until we really talk to a doctor. I don't want to start the worrying for her until we really have a good idea of what we are dealing with here.

  7. #22
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    Quote Originally Posted by titaniumed View Post

    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.


    Do you have any x-rays you could post?

    Ed
    Ed,

    She is doing fine right now, as we have really not talked about the possible implications. Our doctor did not say much at all during our office visit when he made the initial diagnosis. Just said that she may require surgery, but we need to wait until April to discuss. He said something about normally patients and doctors needed time to get to know each other when considering surgery, but we are mutually comfortable with each other since he saw my son for so many years. However, I'm not comfortable with him anymore. While I do feel like he managed my son's case just fine, he really didn't talk to me about what "could" happen. Thank goodness in my son's case, his curve never progressed that much (I think at last x rays several years ago, it was 12 degrees). I will probably try to get my son in for a check up soon and try to encourage him to follow up with it throughout his life.

    I will try to see if I can post a picture of her x-rays. All I have right now is a scanned copy of the xray the doctor gave us. I am planning to get cds of her x rays and her MRI next week.

    Emy

  8. #23
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    Quote Originally Posted by Pooka1 View Post
    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



    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.
    This is my concern as well.

    Emy

  9. #24
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    Quote Originally Posted by leahdragonfly View Post
    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.
    Her doctor did mention this. He said he estimated 31 degrees, but that it might have actually been greater since she was lying down for the scan. I think the question of stability is why he wants to wait and discuss in April. I do know that she grew another inch between 14 and 15. She was only about 4-5 months post menarche at the time of the CT.

    Emy

  10. #25
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    Quote Originally Posted by jrnyc View Post
    hi Emy
    i would look into Shriners fast...
    if age 18 means she wouldn't qualify....when is your daugher's
    birthday...?

    jess
    Jess,

    She turns 18 in September. I haven't been able to find out much about the Shriner's in Shreveport. If I heard great things about their doctors, I would definitely try to get in. In my case, though, our insurance has a pretty low copay (10%), and a limit to out of pocket. Once we meet that limit, everything is covered 100%. Also my insurance has a national network and does not require a referral to see a specialist. So far, every specialist I've looked into has been in network for my insurance. In addition, I would still be driving about 4 hours one way to Shriner's in Shreveport.

    Given basically "equal" reputations, I think I would rather find a doctor that my daughter could continue to see after age 18. I am considering the Texas Scottish Rites Hospital even though they only accept patients to age 18 because I really like what I have read about Daniel Sucato and some of their other surgeons. However, I'm not sure even if she is accepted as a patient, that we would get to choose to see a specific doctor. Also, while Dallas is about 2-3 hours further away than Shreveport, I have an aunt there with two extra bedrooms who has offered to let us stay whenever we would need to. Would make traveling a lot easier and more budget friendly.

    Emy

  11. #26
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    Quote Originally Posted by emybr View Post
    Thank you for responding from a horsewoman's perspective. My daughter does equitation classes that do require a sitting trot. However, she will age out of juniors this year and probably will stay away from the equitation classes after that. No need for sitting trot in Hunter or Jumper classes, at least from my limited knowledge. She will absolutely be devastated if she can't ride anymore. I know we all have to deal with disappointments in life, but she is totally focused on horses right now. There is a lot more involved than riding too when you talk horse ownership. There is carrying feed bags, mucking stalls, picking out feet, etc. So much heavy lifting and bending. I'm worried but I'm not talking to her about those things until we really talk to a doctor. I don't want to start the worrying for her until we really have a good idea of what we are dealing with here.
    Okay I didn't realize there is sit trot in hunter eq. even though that's a flat class. At least I think that is a flat class! I think you are probably correct that outside of juniors, there is little if any sit trot in the H/J world. I also think you are correct about the riding being only part of it when considering barn chores. Since she already injured a disc, you might ask about the chance for re-injury due to either riding or lifting feed/hay and dumping wheelbarrows. In re picking out feet, I have a disc re-injury and the bending does bother me at times despite the fact it is only a total of a minute for all four feet. But I am in my early 50s. You need answers about your daughter in re her disc injury and what she can do and should avoid so as not to re-injure it.

    Any competent surgeon can correctly advise you on the lifting and bending and relation of the curve to the disc injury. My big concern is that there are probably few surgeons who can actually give you the straight dope on how specific riding styles will affect either a fused or unfused curve and lower discs with either a fused or unfused curve because they simply don't know. If they ask say there is little if any sit trot and that the rider is off the horse's back in a half seat much of the time. See if that registers.

    It might be possible that if she is fused only to L3 and the curve is straightened that she will be less likely to (re) injure the lower discs because the mechanics are correct with a straight spine. I don't know. I would ask that question. It just seems to me that the disc injury in a young person like that seems related to the having the curve. If the fusion would go below L3 then that is a different story in many respects.

    One last point... how does your daughter think she injured the disc? Is she doing sit trot correctly? Sitting too far back on the pockets (aka "belly dancing") is a common equitation fault that works to adhere you to the horse but I think leads to back injury. One of my instructors put a non-lungeline student on the lunge and worked exclusively on stopping her from belly dancing the sit trot. That's all they did until she figured out the correct mechanics. That's why I think it might be known to cause back injury. I injured my disc years ago when incorrectly sitting the trot on an advanced dressage horse. The gaits were so large that I had to do whatever I could to adhere. I did adhere but with wrong mechanics. Years later I re-injured what I assume to be the same disc while riding despite much more correct mechanics. It could be that once you blow a disc, no matter how correct the equitation is, riding (sit trot in particular but not exclusively.. I was cantering when my disc blew out the second time) will result in a re-injury. I don't know.
    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. #27
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    Quote Originally Posted by Pooka1 View Post

    One last point... how does your daughter think she injured the disc? Is she doing sit trot correctly? Sitting too far back on the pockets (aka "belly dancing") is a common equitation fault that works to adhere you to the horse but I think leads to back injury. One of my instructors put a non-lungeline student on the lunge and worked exclusively on stopping her from belly dancing the sit trot. That's all they did until she figured out the correct mechanics. That's why I think it might be known to cause back injury. I injured my disc years ago when incorrectly sitting the trot on an advanced dressage horse. The gaits were so large that I had to do whatever I could to adhere. I did adhere but with wrong mechanics. Years later I re-injured what I assume to be the same disc while riding despite much more correct mechanics. It could be that once you blow a disc, no matter how correct the equitation is, riding (sit trot in particular but not exclusively.. I was cantering when my disc blew out the second time) will result in a re-injury. I don't know.
    I definitely think you are right and it will be hard to find a doctor who is familiar enough with riding to advise what she should and shouldn't do. There have been a couple of articles about Georgina Bloomberg and her recent surgery, so maybe we use her as an example. Here's the link to a New York Times article about her (hope I'm not doing wrong by posting as I'm new here): http://www.nytimes.com/2012/09/01/sp...ddle.html?_r=0.

    She could have injured her back about a year ago when she sprained an ankle dealing with a spooked horse on the ground. She never complained of any back pain then, but my experience with back injuries is that sometimes the pain can start long after the initial injury. I'm not familiar enough with correct riding to know what she does right or wrong (I will ask her trainer though). I know diagonals, leads, chip ins, but that is about the extent of my expertise. She did get a new horse right after she sprained her ankle, and he has a very large stride and is fairly green. He is not bad, but just green in his flatwork. She also works two jobs, one on Saturdays where she works pretty hard. Normal chores are lunging horses, putting out shavings, and tacking up horses for the trainer. She has another job in the afternoons after school (she is lucky this year and gets out of school at 12:30 every day) working for a research horse farm. In this job, she is learning the ropes of nutrition, basic first aid, and getting horses ready for vet students. Her boss is a friend of ours and we asked him to help her learn that there is more to horses than riding and showing. She has selected a non horse related degree plan for college at our request, but she chose business with the idea that it would help her be more successful as a trainer. She also rides every day that weather permits. She has one horse at her trainer's barn and rides there 2-3 times per week, and she has another horse at home that she rides on the other days of the week. Weekends she usually rides both horses. She does weekend shows probably once every two months. There are so many ways she could have injured her back with all of these activities.

    Emy

  13. #28
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    Xray

    I'm hoping this works. I'm attaching a picture of my daughter's recent xray.

    Emy
    Attached Images Attached Images

  14. #29
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    Oh hey I forgot about Bloomberg. She didn't have scoliosis but she did have a fusion which I'm assuming is very, very short, just near the spondylolisthesis. It sounds like she has been pretty beaten up by this sport. I don't know if that is par for that level of riding or what.

    That's a good decision to major in business. All these trainers are really small business owners equally with the actual horse work.

    You might be right about delayed pain. I herniated the disc about a year after the 9 months of riding that advanced horse. I was at work and hadn't ridden in a year. I think it was almost blown during the riding and then I did some little thing at work that pushed it over the edge. I do lift heavy research equipment and do field research so maybe it wasn't so "little" but I was not in the field when it happened.

    I was mostly fine for about 20 years after the disc healed. I re-started my riding in 2003 and was fine riding at least 5 times a week for most of that time. I was felling some instability for maybe a year or two before the disc blew last March. I am still dealing with the recovery only because I didn't rest it fully and refused to stop riding completely for the 3 or so months it would have taken to heal if it was like last time. I throttle the riding back and the disc recovers some and then I feel better and do more riding and then relapse. I have had one major relapse but other than that it has been a slow improvement. If I took more ibuprofen for inflammation as opposed to pain I think I might be healed by now. It's just I don't like taking meds if I am not in pain but I should have in this case.

    Is your daughter able to ride with the disc injury? What did her surgeon say?
    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. #30
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    By the way, since Boachie treated Bloomberg, I wonder if he might know something (anything!) about fusions and jump training. He might.

    Also, it is instructive that Bloomberg feels her presumably small asymmetry was responsible for a major fall. I totally believe that. I have seen some dressage people struggle with scoliosis. Even normal small asymmetries in a normal human body present huge challenges in dressage which is really a game of balance. Just turning your head will turn a horse or thinking canter will initiate a canter on a trained horse. It's really a game of ounces and intention, beyond conscious proprioception. That's why something like scoliosis can be so difficult.

    Sally Swift had scoliosis and developed her wonderful program to help her and others find perfect balance. Maybe your daughter would enjoy reading the two centered riding books if she hasn't already.
    Last edited by Pooka1; 01-13-2013 at 10:43 AM.
    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."

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