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Thread: Not my second daugther too

  1. #16
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    AMom

    I so sorry this happened with your daughter and this doctor......Its best to move on.

    After all the years of talking to different doctors, waiting through the years, I had a really good feel on who was capable of major deformity surgery and who wasn’t. By the time I was getting close, (2005) upon my visit to my GP, I didn’t want to hear about what “other” things that needed to be done, or sidestepping methods of making money, I wanted a referral, and I wanted it in 2 minutes. I have this problem and I know you cant help me. (smiley face) Having major adult scoliosis and sciatica pain, knowing your ready, thinking about surgery, results in a shorter attention span. I also could not sit down.

    After my current surgeon came to town, I also switched my primary care physician to my scoliosis surgeon. I didn’t really think that wasting time and money with the wrong doctor was necessary. Let concentrate on the issue at hand, my scoliosis....This way I also had a doctor, a specialist with extensive scoliosis training calling the shots on other issues like my broken shoulder and arm, selecting my vascular surgeon, and so forth.

    I guess its part of the “doctor tour”..... Once I was hooked up, it was a specialist to specialist referral network. Dr Menmuir would say, Go see so and so, do it now....

    I guess I could have simply skipped all the fun, and went to UCSF, or any of the reputable arenas that handle spine disorders, it would have made it easier since they have many specialists there, its just how my card fell on the table. I also wasn’t quite ready in 2005, cancelled, and waited and talked to my surgeon for 2-1/2 years about things....this mental prep was necessary for me to commit.

    I found hot water soaks the easiest quickest way for pain relief.....I understand what lumbar pain feels like. (smug face)

    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

  2. #17
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    Quote Originally Posted by LindaRacine View Post
    Hi...

    An 85 degree lordosis might be significant. There are some special considerations, however, that might make hyperlordosis appropriate.

    I'm not sure I would trust most pediatric scoliosis specialists to have enough experience in treating a sagittal plane deformity (other than Scheurmann's). Where do you live?

    I think you're exactly right about the osteotomy needing to be the reverse of what you're probably seeing on the internet, though it's a lot more complex. To reduce lordosis, the anterior column would need to be shortened. When the anterior column is shortened, the posterior column would be lengthened. Here's an article that discusses the surgical correction of hyperlordosis. Note that it's specifically discussing hyperlordosis of neuromuscular origin. Hopefully your daughter won't require surgery.

    --Linda
    Linda,

    We live in California, but will go wherever needed to work with a physician experienced with this procedure. The experience part + successes = confidence for us. It is a plus if they are good with teens. I was hoping you would say she needs exercise and bracing, not surgery (a mom can dream). All I know about her spine is that side-to-side her spine is straight, but front-to-back the curve is very noticeable in even the best choice of clothes (which is causing problems for her at school); and it hurts in two spots: between the shoulder blades (the level of pain is remains at the same level) and in the lower back--(the level of pain in this area is getting worse).
    Lordosis: 85
    Pelvic Incidence: 85
    Thoracic Kyphosis: 44

    I would like to read it, but do not see the article you referenced above.

    A Mom

  3. #18
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    Quote Originally Posted by titaniumed View Post
    AMom

    I so sorry this happened with your daughter and this doctor......Its best to move on.

    After all the years of talking to different doctors, waiting through the years, I had a really good feel on who was capable of major deformity surgery and who wasn’t. By the time I was getting close, (2005) upon my visit to my GP, I didn’t want to hear about what “other” things that needed to be done, or sidestepping methods of making money, I wanted a referral, and I wanted it in 2 minutes. I have this problem and I know you cant help me. (smiley face) Having major adult scoliosis and sciatica pain, knowing your ready, thinking about surgery, results in a shorter attention span. I also could not sit down.

    After my current surgeon came to town, I also switched my primary care physician to my scoliosis surgeon. I didn’t really think that wasting time and money with the wrong doctor was necessary. Let concentrate on the issue at hand, my scoliosis....This way I also had a doctor, a specialist with extensive scoliosis training calling the shots on other issues like my broken shoulder and arm, selecting my vascular surgeon, and so forth.

    I guess its part of the “doctor tour”..... Once I was hooked up, it was a specialist to specialist referral network. Dr Menmuir would say, Go see so and so, do it now....

    I guess I could have simply skipped all the fun, and went to UCSF, or any of the reputable arenas that handle spine disorders, it would have made it easier since they have many specialists there, its just how my card fell on the table. I also wasn’t quite ready in 2005, cancelled, and waited and talked to my surgeon for 2-1/2 years about things....this mental prep was necessary for me to commit.

    I found hot water soaks the easiest quickest way for pain relief.....I understand what lumbar pain feels like. (smug face)

    Ed
    Thanks Ed,

    I have been following your thread for quite awhile.

    If she needs surgery, I believe she will need some time to adjust--she cries over the pain of a vaccine and blood draw.... I don't want to think about how she would have responded if she were in your situation.

    Her favorite thing to do is soak in the tub. When I hear a voice in her bathroom, I know she is doing her homework/ listening to a book while soaking--we love Learning Ally!

    A Mom

  4. #19
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    Quote Originally Posted by AMom View Post
    Linda,

    We live in California, but will go wherever needed to work with a physician experienced with this procedure. The experience part + successes = confidence for us. It is a plus if they are good with teens. I was hoping you would say she needs exercise and bracing, not surgery (a mom can dream). All I know about her spine is that side-to-side her spine is straight, but front-to-back the curve is very noticeable in even the best choice of clothes (which is causing problems for her at school); and it hurts in two spots: between the shoulder blades (the level of pain is remains at the same level) and in the lower back--(the level of pain in this area is getting worse).
    Lordosis: 85
    Pelvic Incidence: 85
    Thoracic Kyphosis: 44

    I would like to read it, but do not see the article you referenced above.

    A Mom
    Hi...

    It's possible that she needs exercise and bracing, but I'm not the one who could tell you that, even if I had all of the info. I think it's actually possible that she needs the extra lordosis to balance her spine (which might or might not be a surgical problem).

    Please see your PM for add'l info.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  5. #20
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    Quote Originally Posted by LindaRacine View Post
    Hi...

    It's possible that she needs exercise and bracing, but I'm not the one who could tell you that, even if I had all of the info. I think it's actually possible that she needs the extra lordosis to balance her spine (which might or might not be a surgical problem).

    Please see your PM for add'l info.

    --Linda
    Thanks, I just responded.

    Will you please attach the article you referenced or give me the title so I can look it up.

    A Mom

  6. #21
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    Hi AMom,

    I have no info on this but agree with the comment about not necessarily sticking with a pediatric surgeon and going with whoever has the most experience dealing with this using all types of treatments, conservative and surgical. Linda's comment about possibly needing the lordosis seems important... if you correct that it may cause problems elsewhere. You really need a specialist specialist in my opinion especially because you are dealing with lumbar.

    You are handling this expertly as always. :-)
    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."

  7. #22
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    Quote Originally Posted by Prfbones View Post
    Much to my surprise, I have found that some physicians actually don't like published research! I had a horrible case of thryoiditis last year. We went to the endocrinologist in town that was rated very highly by a local magazine. My husband always goes to appointments with me. My disease had a unique presentation and we brought up a peer reviewed article that suggested a line of care that he didn't mention. His reaction was a VERY sarcastic: "pfft, re-surch. So overblown!" My husband and I just looked at each other, got up and walked out. He chased us up until the waiting room, trying to make excuses, then he stopped when we opened the door to the waiting room.

    After teaching in a medical school for five years, I know what an integral component peer reviewed research is to their education. This attitude is very surprising to me. I question how these physicians are meeting their CME requirements if they are not keeping up with their society's work.
    Hi there. I have a few thoughts on your comments.

    First I think he should have read the journal article you brought to your appointment.

    Second, he may be aware how flawed peer-reviewed research is. I am on a tablet and can't easily post the refs but there is evidence a majority of published research results are false. Also, an attempt to replicate 53 "landmark" medical studies succeeded in only producing the same results for a few.

    Third, although flawed, I think the medical literature, appropriately considered, is still better than anecdote so that doctor was out of line.
    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."

  8. #23
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    Quote Originally Posted by AMom View Post
    Thanks, I just responded.

    Will you please attach the article you referenced or give me the title so I can look it up.

    A Mom
    Sorry that I forgot the reference...

    http://www.ncbi.nlm.nih.gov/pubmed/16967278
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  9. #24
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    lordosis is appropriate for her sacral slope

    Hi All,

    I forwarded my youngest daughter’s latest EOS scan, photos, and pain diagrams for review recently and received a reply. Her degree of lordosis (85°) is appropriate for the degree of her sacral slope (85°); meaning the matching curves keeps her standing upright. Also, her EOS does not show any spinal abnormalities therefore the cause of her pain is not readily apparent. Yea, no need for surgery!

    If her pain persists, we might want to take her to a physiatrist.

    With her sacral slope, she may end up with spondylolisthesis; however, it is not an issue at this time.

    For those of us who do not have a medical degree (or experience in this area) I included simple explanations of various terms below.

    A Mom

    What is EOS?
    The EOS Imaging System is a low-dose, 3-D imaging system that scans your child standing up. An EOS scan shows us your child’s natural, weight-bearing posture and allows us to see the interaction between the joints and the rest of the musculoskeletal system, particularly the spine, hips and legs.

    EOS imaging uses an ultra-low dose of radiation to provide extremely detailed, high-quality images. It uses a significantly lower radiation dose than a general radiography x-ray. With EOS scans, we can make more informed diagnoses and create individualized treatment plans for children with musculoskeletal disorders.
    From: http://www.chop.edu/treatments/eos-x-ray-imaging-system

    10
    Analysis of the Dynamic Sagittal Balance of
    the Lumbo-Pelvi-Femoral Complex

    Legaye Jean
    University of Louvain, Mont-Godinne
    Belgium

    These correlations allowed establishing the essential role of the pelvic morphology in the
    regulation of the sagittal spinal curves: high value of “Pelvic Incidence” was associated to
    high “Sacral Slope” value and an important “Lordosis” (Figure 5 A), low “Pelvic Incidence”
    value was associated with low “Sacral Slope” value and a more flat “Lordosis”. (Figure 5 B)

    Image: see link and look at page 227

    Fig. 5. Low (A.) and great (B.) value of “Pelvic Incidence” and sagittal lumbar shape.
    The normality of a sagittal shape was attested by the harmony of these relationships, and
    not by comparing observed and average values. Using these equations, it became possible to
    assess the “Sacral Slope” adapted to the individual value of “Pelvic Incidence”. The
    difference between the observed and this optimal value was named “ΔPS”. Similarly, the
    value of “Lordosis” adapted to the observed “Sacral Slope” was determinable (the
    difference between observed and calculated value was named “Δlord”) and even the
    optimal value of “Lordosis” according to the “Sacral Slope” adapted by the “Pelvic
    Incidence” (the difference with the observed value was named “Δlord optimal”). This
    analytic evaluation allowed detecting a global or a local disturbance (pelvic, lumbar,
    kyphotic …). A pelvic tilt was considered significant if “ΔPS” exceeded 12 °, lordosis was
    unsuited to the observed sacral slope if “Δlord” was more than 8 ° or unsuited to the pelvic
    incidence if “Δlord optimal” was more than 8 °.
    From: http://cdn.intechopen.com/pdfs-wm/19659.pdf

    What is a Physiatrist?
    Physical Medicine and Rehabilitation (PM&R) physicians, also known as physiatrists, treat a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons.

    PM&R physicians are medical doctors who have completed training in the specialty of Physical Medicine and Rehabilitation (PM&R), and may be subspecialty certified in Brain Injury Medicine, Hospice and Palliative Medicine, Neuromuscular Medicine, Pain Medicine, Pediatric Rehabilitation Medicine, Spinal Cord Injury Medicine, and/or Sports Medicine.

    Specifically, PM&R physicians:
    • Treat patients of all ages
    • Focus treatment on function
    • Have a broad medical expertise that allows them to treat disabling conditions throughout a person’s lifetime
    • Diagnose and treat pain as a result of an injury, illness, or disabling condition
    • Determine and lead a treatment/prevention plan
    • Lead a team of medical professionals, which may include physical therapists, occupational therapists, and physician extenders to optimize patient care
    • Work with other physicians, which may include primary care physicians, neurologists, orthopedic surgeons, and many others.
    • Treat the whole person, not just the problem area
    From: https://www.aapmr.org/about-physiatr...t-is-physiatry

    Spondylolisthesis
    If left untreated, spondylolysis can weaken the vertebra so much that it is unable to maintain its proper position in the spine. This condition is called spondylolisthesis.

    In spondylolisthesis, the fractured pars interarticularis separates, allowing the injured vertebra to shift or slip forward on the vertebra directly below it. In children and adolescents, this slippage most often occurs during periods of rapid growth—such as an adolescent growth spurt.

    Doctors commonly describe spondylolisthesis as either low grade or high grade, depending upon the amount of slippage. A high-grade slip occurs when more than 50 percent of the width of the fractured vertebra slips forward on the vertebra below it. Patients with high-grade slips are more likely to experience significant pain and nerve injury and to need surgery to relieve their symptoms.

    image: see link & scroll down the page

    (Left) The pars interarticularis is a narrow bridge of bone found in the back portion of the vertebra. (Center) Spondylolysis occurs when there is a fracture of the pars interarticularis. (Right) Spondylolisthesis occurs when the vertebra shifts forward due to instability from the pars fracture.
    From: http://orthoinfo.aaos.org/topic.cfm?topic=a00053

  10. #25
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    This is good news A-mom..... thanks for the fantastic post!

    I get a kick out of the low grade, high grade designation on spondy’s. Some of the spondylolisthesis x-rays can be quite alarming......I am sure you have seen them, and will keep an eye out for this in the future....

    Seeing a Physiatrist sounds like a good idea...

    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

  11. #26
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    Physiatrist

    Quote Originally Posted by titaniumed View Post
    This is good news A-mom..... thanks for the fantastic post!

    I get a kick out of the low grade, high grade designation on spondy’s. Some of the spondylolisthesis x-rays can be quite alarming......I am sure you have seen them, and will keep an eye out for this in the future....

    Seeing a Physiatrist sounds like a good idea...

    Ed
    Hi Ed,

    Absolutely agree, those x-rays are alarming. I hope we never see them on my daughter's images!

    I talked to her about everything and she said that she would like to get some help with her back pain because it hurts every day. Do you have any idea of what we can expect from a physiatrist?

    A Mom

  12. #27
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    I would suspect that they will lead the physical therapists and be involved in creating some sort of exercise and stretching program......These large lordosis cases are not all that common, (or at least on this forum) it will be interesting to see how they handle it. Exercises and stretches are good things, they keep our minds occupied, and they also have a few tricks with hot and cold therapies, ultrasound etc that they will probably try. Learning what to do, and not to do, and setting the patient on course....Physical therapy can only help. It’s a positive thing.

    I loved it so much that I had my shoulder surgeon extend my prescription.

    Do post and let us know how it all turns out. (smiley face)

    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. #28
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    what test is used to determine bone density

    Yet another doctor's visit. I should buy stock in the medical profession to try and break even.

    Linda, would an EOS show bone density or does she have to have a different type of scan? I ask because the pulmonologist told us she needed a bone density scan to see what/ if any damage has occurred due to years of steroid use. Of course she said we need to take her to the PCP to order the test.

  14. #29
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    Quote Originally Posted by AMom View Post
    Yet another doctor's visit. I should buy stock in the medical profession to try and break even.

    Linda, would an EOS show bone density or does she have to have a different type of scan? I ask because the pulmonologist told us she needed a bone density scan to see what/ if any damage has occurred due to years of steroid use. Of course she said we need to take her to the PCP to order the test.
    I didn't know this*, but did a search, and it appears that EOS films can be used to correlate a value for bone mineral density.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4763151/

    *We don't have enough space for the EOS system in our current location. We're being moved to a new floor next year, and we'll be switching to EOS at that time.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  15. #30
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    what test is used to determine bone density?

    FYI: My daughters prefer the EOS to standard x-rays. It was quiet, quick (seemed quicker than x-rays), painless, and they did not worry as much about radiation. There was no need for multiple x-rays in an effort to stitch together an image of the entire spine.

    Thank you for sharing that article!

    "Vertebral osteoporosis

    EOS® imaging was also tested for the study of vertebral osteoporosis. It was first compared to dual-energy X-ray absorptiometry (DXA) using a Hologic® device for measurement of bone mineral density (BMD) [35]. Both techniques were used to determine BMD on the European Spine Phantom, and the results were compared to the values given by the manufacturer of the phantom. EOS® imaging was more accurate than Hologic® (5.2 % compared to 7.2 %) and had very good reproducibility [35]. In another study, it was used to determine the BMDs of 14 fresh-frozen vertebrae, as well as to provide a 3D reconstruction of these vertebrae [36]. Thus, a subject-specific finite element model (FEM) of each vertebra was created, which led to better prediction of the failure load of these vertebrae.

    What do we do now? Who would we send the EOS to to check her bone density level?

    A Mom

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