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Thread: Treatment: PT using MedX per Mooney & later, McIntire research

  1. #271
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163
    Hi there,

    if you hit the "reply" button, a new window appears to type your reply in. Below that, if you scroll down you will see a section that says "attachments" that looks like this:

    Attachments
    Manage Attachments:

    Valid file extensions: bmp doc gif jpe jpeg jpg pdf png psd txt zip

    You should be able to click on the attachments button and add your photo links.

    I'm glad to hear all is going well with your daughter!
    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

  2. #272
    Join Date
    Jan 2007
    Posts
    228

    Still "not authorized" to attach a document

    Thank you leahdragonfly,

    The photos are in a "Microsoft Word Document" so that means it ends in "doc", correct?

    At the very bottom it says, "You may post attachments", [IMG] code is Off, [VIDEO] code is Off, and HTML code is Off.

    It is still telling me I am "not authorized" when I try to attach the document.

    A Mom

  3. #273
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163
    Hi,

    I recall others here having a similar problem...another way around it is to include a link in the body of the post to one of the photo-sharing sites.

    Here's a link to previous thread explaining how to post photos from other people who had similar difficulties:

    http://www.scoliosis.org/forum/showt...sting%2Bphotos

    I hope it helps!

    BTW, I took our daughter to the local gym when she was probably 7 to see if we could put her in the MedX there, and it was so huge it was impossible. It will be interesting to see your modifications.
    Last edited by leahdragonfly; 01-02-2013 at 08:55 AM. Reason: link added
    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

  4. #274
    Join Date
    Sep 2011
    Location
    Cary, NC
    Posts
    105
    Quote Originally Posted by AMom View Post
    Dear Dr. McIntire,

    I am sure you are tired of the many questions prompted by your articles, so I’ll keep this short and include the quotes so you won’t have to go back and look up this article.

    Thank you,

    A Mom
    Hi there. I've been away for a while. Life and all of that... :> But let me take a stab at your questions.

    Quote Originally Posted by AMom View Post
    1. How did you rule out other etiology on the right high thoracic and double thoracic curves?
    “Page 2 ….
    METHODS
    The criteria for inclusion were a diagnosis of AIS, a Cobb angle of 20 to 60 degrees, a Risser sign ≤III, and age from 10-17 years. The exclusion criteria were any diagnosable cause of scoliosis. Any patient with a left apex thoracic curve or hyperkyphosis received a cervical spine to sacrum screening or hyperkyphosis received a cervical spine to sacrum screening magnetic resonance imaging to rule out Chari malformation, syringomyelia, or other structural neural abnormality. The study protocol was approved by the institutional review board of the Kansas University Medical Center….”
    This was done by the two orthopedic surgeons involved with the study so I'll be speaking somewhat ignorantly. I think the main point is that there were no obvious reasons for the curve, e.g. malformed vertebrae, obvious paralysis, cyst or tumor, etc... This was during my graduate work and so I approached patients when the Docs said they were qualified.


    Quote Originally Posted by AMom View Post
    2. Why was this curve excluded in the results? It doesn’t appear to be due to the fact it is the only Main High Right Thoracic curve because you included a variety of other “only” components, but I can’t figure out what it might have been unless an additional dx was made at a later date.
    “Page 4 ….
    RESULTS
    From August 2002 to August 2005, 17 patients were enrolled. One withdrew because of the rigor of the training schedule, and one with a main high thoracic curve was not included in the analysis. ….”
    If I'm remembering the specific patient, I believe the main reason is that the family had not been coming ONLY to our study. She wasn't involved in any other study but had been going to one or two other therapy-based interventions. Rolfing and one other that I can't remember.


    Quote Originally Posted by AMom View Post
    3. Which vertebrae did you use to designate a “high thoracic” curve?
    “Page 5
    Table 1. Baseline Clinical Data …
    *Main thoracic of thoracolumbar curve in bold.
    Cl indicates closed; HT˚, high thoracic Cobb; ….”
    This was also the decision of the surgeons. I believe their criteria was basically any apex above ~T7-6 was considered to be HT.

    Sorry I can't give more convincing answers. Nonetheless, hope it helps a bit.

  5. #275
    Join Date
    Jan 2007
    Posts
    228

    Photographs, finally!

    Below are three images showing:
    1. MedX Core Torso Rotation Unit (copied from their web site)
    2. BackStrong Variable Angle Roman Chair (copied from their web site)
    3. Modified MedX CTR unit
    --The third photograph shows the modifications to the rolling assembly which moves the restraint system several inches forward. Now it snugs right up to the seat. The altered tower allows the thigh & shin restraints to move forward an additional 1-2". MedX hasn't sent the replacement footrests yet, so you get to see my ugly, yet functional ones. Oh! I forgot you haven't seen the counter balance--look to the upper right corner. And, there are two extra seat cushions of different thicknesses in view. The black box in the mid-right corner are a box of 0.5 lb. magnetic weights. And last, but not least, the zippered file folder behind the blue seat cushion holds all of our charts & notes. Thanks for your patience--I realize it has taken me quite awhile to get these images posted.

    A Mom

    torso-rotation.jpgBackStrong_MainPage.jpgIMG_5364.jpg

  6. #276
    Join Date
    Jan 2007
    Posts
    228

    Thanks Dr. McIntire

    Quote Originally Posted by Kevin_Mc View Post
    Hi there. I've been away for a while. Life and all of that... :> But let me take a stab at your questions. ....
    Thank you for taking the time to answer my questions. I knew there was a good reason you didn't include that patient in your results! I hope your current work is going well.

    A Mom

  7. #277
    Join Date
    Jan 2007
    Posts
    228

    Pre X-ray Jitters

    Next week we are all going down south for what will likely be our daughter’s last ortho appointment for several years. Off the top of my head (I’m not walking to the log notes to confirm) she hasn’t grown more than 1/8th of an inch since before the question of her remaining growth came up. At this rate, she won’t make it to 4’10” before her last little bit of growth is finished. The good news is that she appears to have come to terms with being petite--YEA! Personally, I think she is gorgeous, but it could just be the mother in me talking. We are all hoping that the “exit” x-ray will not show any curve progression.

    I injured my leg and lower back, so she has had to do all of her workouts with her younger sister for quite a while. Now that I’m better able to get around, (and finally off all the pain meds) I am working on retraining her form and PT consistency. Her physical therapist stopped by earlier this week and found she had lost ground on some of her flexibility (not all areas), but was stronger in all areas except on the MedX CTR. Her modified B-S test on the BackStrong VARC was 2 minutes 10 seconds so it shows she wasn’t completely goofing off.

    This time my husband is taking the girls to Sea World after her appointment and I’m going to relax & read by the pool. I’ll post the x-ray results when we get back to town.

    AMom

    PS We are stopping by to see one of the doctors who worked with Mooney on the original project and then several years later shared those protocols with us. My daughter even asked me to take photos of her in the exercise equipment and then used them to have a simple plaque made to say thank you for helping us get started. The girls are making cupcakes to take for the office staff as well.

  8. #278
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,311
    Amom,

    Overall it sounds pretty good. Good that she is being released by the orthopedist.

    Onward. :-)
    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."

  9. #279
    Join Date
    Jan 2007
    Posts
    228

    Good News

    Hi All,

    Our daughter’s exit scoliosis x-rays were taken a few days ago. During the time targeted strength training based on Mooney’s study was utilized, from 2011 to 2013 (26 months), the initial and end readings of the structural (thoracic) and compensatory (lumbar) curves remained within a few degrees of each other. Obviously, her results reflect that of one adolescent with AIS, so it is not possible to predict whether this type of PT would have similar results in others during their growth spurt. Furthermore, we have yet to ascertain whether her curves will remain stable when she stops the PT altogether (after skeletal maturity is achieved.) However, our family does think her results demonstrate that it may be possible to maintain curve stability longer than noted in McIntire’s study by continuing targeted PT on a weekly basis to the end of an adolescent’s growth.

    Since neither progressive resistance torso rotation strength training nor our daughter came with an instruction manual, we borrowed ideas from various treatment regimens; and with regard to choosing an end-time for treatment, we used data from natural progression and brace wear as a guide. If she had worn the prescribed TLSO, she would have been directed to remove it when she was done growing (risser 4) or skeletally mature (risser 5). We decided to end her progressive resistance torso rotation strength training at skeletal maturity for several reasons. Both ortho’s are of the opinion that her curve will remain stable for the next few years. We hope it will not show any progression five and ten years after the PT is ended (within the given ±5˚error rate).

    During the 04-11-13 ortho visit, her doctor (2nd opinion) stated her structural curve is stable, curves are nicely balanced, and growth is finished, curves this size are unlikely to progress, and to come back sooner if growth begins anew or change in torso noted. (Similar info given during the 10-2012 visit by other ortho.)

    GENERAL NOTES:
    2010 T17˚ & L5-7˚
    --On March 10, 2010, eleven months before she began PT, at 10.04 years old, Tanner: 1, Risser: 0, Triradiate Cartledge: open, Menarche: none, she could not begin progressive resistance torso rotation strength training because her femurs were too short to use the equipment. (MedX’s retrofit, which is now available, would have allowed her to begin PT at the age of nine)
    2011 T33˚ &L27˚
    --On February 20, 2011, our 11.03 year old daughter with AIS, Tanner: 2, Risser: 0, Triradiate Cartledge: open, Menarche: none, begin progressive resistance torso rotation strength training during her final growth spurt. Four months after she began the PT, her curve stopped progressing.
    2012 T31˚ & L25˚
    --On April 15, 2012, at 12.05 years old, with a Tanner: 3, Risser: x, Triradiate Cartledge: x, Menarche: 6 months, her structural curve remained stable.
    2013 T31˚ & L30˚
    --On April 11, 2013, twenty-six months later, at 13.05 years old, with a Tanner: 4, Risser: 4, Triradiate Cartledge: closed, Menarche: 18 months, her structural curve remained stable. (Began using the MedX retrofit January 2013)
    2015 pending

    (I'll insert the missing info in the two "x" 2013 sections when I get a chance to look up her reports.)

    Even after her curve progression halted when she began PT, I was watching & waiting to see if her curve would revert to “natural progression” like the curves did later in McIntire’s study. I was never sure we’d be lucky enough to get through her final growth spurt without surgery. As a matter of fact, when both surgeons she saw stated that based on her rate of curve progression in 2010, it was a matter of when, not if she would need it we wondered if we were just putting off the inevitable. Neither of her orthos believes PT can have an impact on curve progression/ stability. They both made comments along the lines of “her spine not reading the rule book” when curve progression halted in the middle of her growth spurt. One ignored the work she was doing and the other took it a step further by writing in one of his first reports that our daughter “had stopped the PT when she started seeing him.” I’d like to sincerely thank you for all of you for your support! It has been nice not to feel alone in this project.

    Now we will wait to see what happens over the next decade.

    A Mom

  10. #280
    Join Date
    Mar 2010
    Posts
    2,766
    Hopefully her L curve stops progressing. That's the curve to really keep an eye on now. Posture can make that much of a difference in her measurement. It looks like good news! Thank you for sharing.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  11. #281
    Join Date
    Jan 2007
    Posts
    228

    You are right about watching the lumbar curve

    Quote Originally Posted by rohrer01 View Post
    Hopefully her L curve stops progressing. That's the curve to really keep an eye on now. Posture can make that much of a difference in her measurement. It looks like good news! Thank you for sharing.
    Hdugger,
    I’ll pass your good wishes on to her. Thanks!

    Rohrer01,

    I’ve watched the lumbar curve increase and worried about it twice. The first time was when it made that big jump in 2010 and the second was when the orthopedic surgeon added another vertebra to the measurement (from L3 to L4). Otherwise, I’ve been okay with the gradual increase because I thought that is what a compensatory curve is supposed to do—compensate for the upper or lower structural curve. I am guessing that the lumbar curve “should” stop where it is now that her curves are balanced. If not, then I have to consider the possibility the PT (directed at the thoracic region) may be impacting the lumbar region—possibly unwinding its minimal rotation at the “ends.”

    I’ve spent a fair amount of time thinking about the processes and it is a possibility I’ve considered, but I can’t locate documentation from other families who went before us so we are “recreating the wheel” with this particular group of exercises. (I do know about a steady stream of people who are trying the PT, but the majority is not documenting their child’s growth, frequency of PT, or x-ray readings.)

    I will share the reading of her next x-ray. Hopefully it will be good news as well.

    I wish that funds would magically appear so a long term study could be run and if possible, published at intervals for the group i.e. growth spurt completed (2yrs), riser 5 achieved (2 more yrs), 2 years after PT ended (2 more yrs), and 10 years after PT completed (8 more yrs). lol, where exactly I think funding for a study that will run roughly 14-16 years is going to come from, I don’t know! Come to think of it, even if the money was available, I question whether it would be possible to locate an orthopedic surgeon who would be willing to run the study. In the meantime, it would be nice if families who try this type of PT will document their child’s growth, PT frequency, & x-ray readings (whether it held the curve or not!) so others will have more information on which to base their decision to brace or try targeted PT. Nag, nag, nag….

    A Mom

  12. #282
    Join Date
    Jan 2011
    Location
    Hilliard, Ohio
    Posts
    20

    My daughter stabilized as well and now is 2 1/2 years post menarche

    Quote Originally Posted by AMom View Post
    Ortho stated the curves are essentially unchanged over the last 20 months: (11.3 to 12.11 years of age--bone age read at 14 to 14.5 at chronologiac age of 12.6)
    02-10-11 (T33˚ & L27˚) to
    10-15-12 (T31˚ & L28 ̊ ) Right T8-T12 and Left T12 – L4.
    Using the same vertebrae on the same x-rays, the thoracic curve was read at a slightly higher degree of curvature by two other orthos (38 plus degrees). FYI: The lumbar (compensatory) curve initially ended at L3, but now it ends at L4.

    I shared the bone age study and opinions of the two endocrinologists, geneticist, and two orthopedic surgeons regarding remaining growth. He said some kids just don’t follow the rule book and though he didn’t think she had a lot of growth left, her curve may still progress so I should keep an eye on it and bring her back if I noticed any changes.

    I asked if I was supposed to do anything in particular during the next three years and he told me I could measure her height every six months and bring her back if she grows more than an inch. If growth remains under an inch, then no further orthopedic surgeon visits required until age 16 or symptoms appear. His office hasn’t measured her height since the first visit.

    A Mom
    Although I haven't posted for a while, I thought I should share our story. My daughter was initially diagnosed with progressive scoliosis after progressing 7 degrees Thoracic and 8 degrees Lumbar in only 4 months. We refused the Boston brace and got a second opinion (no help--same diagnosis but told we could brace or not brace, it was up to us.) Soon after we started her on TR and lumbar chair at a nearby gym. The doctor declared my daughter "stable" at each subsequent appt for the next two years, which I feel is directly related to the TR. Her numbers have crept up a bit lately which i feel is a result of inconsistent compliance due to the machine being unavailable to us at times, and finally our decision to try to implement other exercises at home instead of using the TR machine (poor decision). Bottom line, I truly feel that my daughter would have needed to have surgery if not for the TR exercises. She progressed so fast those first four months and then remained stable through the rest of her grownth after we started the exercises.

    Here are some of her numbers:
    5/5/10 T13 L20 (initial diagnosis of scoliosis)
    12/17/10 T21 L27; 62.5"(grew 1 inch X 4 months, brace recommended by MD, TR started within the month)
    ----12/28/10 Menarche------------
    2/13/13 T21 L32; 65"
    Daughter dx'd 3/10 at age 11: T13 L21
    Progressed to T21 L27 in 12/10
    Initiated TRS and nightly melatonin in 1/11
    "Stable" at T20 L24 since 4/11

  13. #283
    Join Date
    Jan 2007
    Posts
    228

    Great to hear from you!

    Hi Anna’s Mom,

    I was wondering how your family was doing when I wrote about our daughter’s last ortho appt. I remember when you wrote she had been stable for a year and how excited you sounded.

    Two & half years have passed since then; do you mind my asking what her curves are now?

    I can see how easy it would be to miss the workouts for a while (especially if the equipment becomes unavailable!), but being me, I am wondering how much of a break she took from the equipment before her curve began to progress a bit.

    If I remember correctly, your plans were to continue the workout until she was skeletally mature. I think Anna would be somewhere around 14yrs old now, did the ortho tell you her current riser at the last visit (maybe a 4?) or roughly how many more years until she reaches a 5?

    Thank you for the update!

    Wishing the best for your family,

    A Mom

  14. #284
    Join Date
    Jan 2007
    Posts
    228

    No One is Collecting Data

    Spoke with another family today who used targeted PT (MedX CTR, but not the roman chair or MedX Lumbar). They used it for several years with both of their daughters who had thoracic curves (1 moderate & 1 mild) and stated per x-rays, there was no further progression during the time the girls did the PT (thru skeletal maturity). However, no one has checked the status of the curves since the (adults now) girls stopped the PT. One child worked out 3x per week and the other 2x per week. They haven’t noticed any problems since then.

    Most often, I run into stories of families who stopped the PT before the child was done growing, with either a comment of how their child’s curve progressed at some point after the PT was stopped or that they hadn’t followed up on the curve’s progression so they don’t know what happened. Less often, I run across stories like this, where an individual family tried the PT, continued it through skeletal maturity, but haven’t checked on the status of the curve after the PT was stopped.

    If you are using the MedX CTR and BackStrong VARC/ or MedX Lumbar please write a few notes at each ortho appointment. Write down your child’s age (years & months), height, and date she began her menstrual cycle (year & month). You can ask her ortho about her Risser, whether her Triradiate Cartledge is open or closed, and the Cobb angle when he is looking at her x-rays—it will take him seconds to give you each answer. If you want to know if the PT remained effective, then consider obtaining an x-ray 5-10 years after the PT is terminated. While the data would be informal, it would be helpful to others who are following after you.

    A Mom

    Here is what my note looked like for each visit:

    APPOINTMENT DATE:
    Age:
    Height:
    MC:
    Risser:
    TC:
    Curve:

  15. #285
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,058

    Great news!!!

    That's awesome Amom and Anna's Mom!

    I haven't checked this thread in a while so I didn't realize you guys had posted your results. Every time I read good news it's a huge load off my mind.

    Scott is taking a 1 month break from torso rotation because he is on vacation with his brother and grandparents in the Great Lakes region.

    His next checkup is early October. I'll post his results! Hopefully they are good. 8-)

    Scott's shoulders are as level as they've ever been so I assume he's still at 20 degrees +/-. His rotation is pretty bad but it always was.

    Nobody knows why torso rotation works but I'm leaning towards Dr. Douglas Kiester's explanation.

    Dr. Douglas Kiester discusses MAGEC - Remote Control Spinal Deformity System

    Traction can't pull hard enough to stretch out the ligaments involved. Your skin is too soft, making the traction too weak to be effective. Also while braces on the teeth pull 24/7, traction can only be applied for a limited time each day. Exercises have been tried for literally hundreds of years without much success. Part of that failure is because people believe that the problem with scoliosis is the spine bending to the side. And so they have concentrated on doing ineffective exercises. The bending to the side is not the primary problem. That is a side effect (no pun intended). The primary problem is the ligaments in the back of the spine that need to be stretched. Again, these ligaments are too tight for flexion exercises to help much. The one exception may be Dr. Vert Mooney's trunk rotation exercises which seem to have the unexpected consequence of stretching the right ligaments, and therefore seem to be somewhat effective.

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