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Thread: 13 year old daughter with a 44 degree lumbar curve

  1. #31
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    Dec 2012
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    Coolblue
    I have been communicating with a mother in India that has a 14 y/o daughter with virtually the same condition as yours. She has developed an exercise therapy with a Physiotherapist that has made significant improvements to her daughters condition. The before and after pictures are remarkable. She asked me to reply to your post so that she can share with you her experiences.

    You can reach her at narayankpl@gmail.com

    Good Luck
    Randy

  2. #32
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    Quote Originally Posted by coolblue View Post
    Even we are interested in what Dr. Hey thinks as well as feedback from Shriners. Hopefully they would reply soon.
    Who did you contact as Shriners and when?

    I am just trying to recall. Due to the volume of patients they see, sometimes you need to 'remind' them that you are waiting for a response. They won't mind at all.

    Best of luck!
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  3. #33
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    Apr 2013
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    INDIA
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    Thank you Randy. Have sent them an email . Looking forward to their response.

    Maria - Spoke to Dr. Hey's assistant. She looked at the Xrays and said that the fusion would go down to L4 if not L5.

    For Shriners we had written to Crystal James mid December and then later sent them a followup email. Would send another reminder today itself.

    Meanwhile we are getting a Torso Rotation Machine made in here so that we can start the exercises at home. The equipment should be delivered by next week.

  4. #34
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    Which doctor does Crystal James work with and at which Shriners hospital?

    I am hoping somebody can perhaps give you another contact for the doctor.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  5. #35
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    Apr 2013
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    INDIA
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    Crystal James is the New PAtient intake Co-ordinator at Shriners Philly. Have asked him to connect to Dr. Betz.

    A copy of the mail has also been marked to Janet Cerrone and you as well.

    Would love to have any other contact for Dr. Betz.

    Thanks

  6. #36
    Join Date
    Jan 2007
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    150

    Torso Rotation Machine

    [QUOTE=coolblue;
    ...Meanwhile we are getting a Torso Rotation Machine made in here so that we can start the exercises at home. The equipment should be delivered by next week.[/QUOTE]

    “…She has just been for her six monthly checkup and as per the X-rays the curve seems to have gotten much worse. It has progressed by a whopping 11 degrees in these six months….

    Her details are as under :
    Age : 13 years 8 months
    Scoliosis detected on : 16th April 2013
    Cobbs Angle at time of detection : 33degrees for the Lumbar Curve as per X Ray report.
    Cobbs Angle Currently : 44 degrees
    Menarche : March 2013
    Growth in Height during last six months : 5 cm. Current Height : 154 cms
    Gain in Weight during last six months : 2.5 kgs. Current Weight : 41.5 kgs.
    Visual Balance : Good. Difficult to make out that she has scoliosis from visual appearance.
    Pain : No Pain. She can do all her activities normally.
    Braces : Not opted for perhaps due to the x-ray showing a Risser 4 and the fact that it would have a psychological impact on the child not to mention the obvious discomfort.
    Current Regimen (For Past Six months): Aggressive yoga (Iyengar Yoga) and swimming exercises. (avg one hour daily)
    MRI : Clear. No Neurological Deficit found.
    Spirometry : Clear
    Eco-cardiogram : Clear
    Latest Advise by Doctor : Full Fusion Surgery as early as possible.”

    While some structural thoracic curves reduce in size (≥5˚); I have never come across a claim of TR reducing a structural thoracolumbar curve. And, there is little discussion with regard to the impact of TR on a structural lumbar curve. I would tend to be hesitant with the use of Targeted PT on a 44˚ lumbar curve that has progressed 11˚ over six months. Even if it does stabilize the curve while she finishes the final portion of her growth spurt, it will leave her in a position of curve progression throughout adulthood being more likely; wear as surgery now may provide her with better quality of life for decades to come. Either way you go, this is a difficult decision.

    TR does appear to stabilize curves under 40 degrees (I am contacted by a handful of families every month), however, the results for curves over 40 degrees are not consistent (some are stable, but many are not).
    Generally speaking, curves that are less than 30 degrees are less likely to progress than those over 30 degrees; while curves between 40 - 50 degrees are more likely to progress over an adults’ lifetime.

    Since your daughter has begun her menstrual cycle and has a Risser 4, her remaining growth spurt should (generally speaking) be at a slower rate with little growth left. However, your message states that five ortho’s are recommending surgery ASAP, so maybe the possibility of the addition of another vertebrae to her lumbar curve is causing concern regarding the impact on her potential surgery. I am not a medical professional so I can’t say what they are thinking.

    Best wishes on your daughter’s outcome.

    A Mom

    BTW, MedX CTR is the only TR unit used in research. There have been positive reports on Cybex TR units as well. There have been no positive reports on other TR machines (I am guessing their design is not focusing the workout on the necessary muscle groups.) There have been reports of injury on other units.

  7. #37
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    Quote Originally Posted by coolblue View Post
    Crystal James is the New PAtient intake Co-ordinator at Shriners Philly. Have asked him to connect to Dr. Betz.

    A copy of the mail has also been marked to Janet Cerrone and you as well.

    Would love to have any other contact for Dr. Betz.

    Thanks
    I knew there was a new intake coordinator but everyone still seems to go through Janet (which I would recommend). Yes, I got the e-mail that you also copied Janet on. I would focus on connecting with her. I just e-mailed you a phone number for Janet in case you don't have it.

    Best of luck!
    Last edited by mariaf; 01-10-2014 at 02:49 PM.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  8. #38
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    May 2008
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    reno,nevada
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    Quote Originally Posted by coolblue View Post
    Maria - Spoke to Dr. Hey's assistant. She looked at the Xrays and said that the fusion would go down to L4 if not L5.

    Meanwhile we are getting a Torso Rotation Machine made in here so that we can start the exercises at home. The equipment should be delivered by next week.
    Cool, I’m wondering if there was any other information from Dr Hey’s office on your daughter? Did he say, better sooner than later? Did he say that she could wait?......did they say a full T2-L4, possibly L5 fusion? Anything else of importance?

    I sure hope you report on how this all pans out with the torso rotation machine.....of course, your going to have to x-ray often to monitor her curves. How often, I cant say, but it would be good if you had a local surgeon do the monitoring......

    Things are going to be ok.

    Ed
    49 yr old male, now 55, the new 39...
    Pre surgery curves C12,T70,L70
    A/P 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

  9. #39
    Join Date
    Apr 2013
    Location
    INDIA
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    Meeting with Dr. Lenke

    Here are the excerpts of my meeting with Dr. Lenke last week :

    Surgery looks imminent was his opinion when we met us. He was ok with us waiting and watching while monitoring the progress of the curve. As per the current curve progression he felt that a full fusion from T3 to L3/L4 could be advised. Though from his talk I felt he would try his best to save a lumber level which I felt would be absolutely wonderful.

    He also felt that my daughter would more likely than not be a candidate for a future (maybe after 20-30-40 years) revision surgery for fusion till the pelvis due to disk degeneration of the remaining lumber levels – a point that has been made earlier in the forum by

    He felt that our efforts on PT , Yoga, Scroth, TRS which though have not yielded medically proven benefits would not harm but in fact be helpful in keeping the curve flexible which was beneficial in the long run.

    He advised her to continue to be active in sports as well as concentrate on her studies because that too is important!!! WOW. Spoke to Anna like a parent does. Also advised her to stay slim.

    Was gracious enough to be willing to accept Anna as her patient if and when we do decide to have surgery. Such a relief to have one of the best in the field as her surgeon. He even encouraged us to keep her records posted to him via email after her six monthly xrays are taken to review our call on surgery and help us in monitoring her progress.

    Also agreed with my logic for waiting to keep options for non surgical treatments that may be round the corner. He said that tethering was an option for thoracic curves but till date so much for lumbar. But seemed hopeful regarding the progress in these areas and something could work out for now. Fingers crossed.
    He spent a fairly long time with us in the lobby of a hotel reception in which he was staying and attending a conference. It was indeed very nice to have met us in the middle of the conference. To top it all he refused any consulting fees despite our insistence. We really felt humbled by the entire experience to say the least.

    Thank you Dr. Lenke.

  10. #40
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    Quote Originally Posted by coolblue View Post
    He even encouraged us to keep her records posted to him via email after her six monthly xrays are taken to review our call on surgery and help us in monitoring her progress.
    Very well done....I think you had an excellent meeting!

    Be sure to keep us posted!

    Ed
    49 yr old male, now 55, the new 39...
    Pre surgery curves C12,T70,L70
    A/P 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. #41
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    Jan 2008
    Location
    NC
    Posts
    8,081
    Dr. Lenke... what a guy!
    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. #42
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    Jan 2012
    Location
    Yacolt, WA
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    I am glad that you are gathering information in making your plan. It must be a challenge to try to negotiate visits from India. Is that where your family lives now? You sound like a great advocate for your daughter. I wish her the best! Susan
    Dxed 8/2011: Degenerative Adult-Onset Scoliosis age 65
    XRAY 1/2012: 25* T levoscoliosis/ 36* L dexroscoliosis w/ 4.1 cm coronal & 3.5 cm sagittal balance
    XRAY: 12/2012: Scoliosis curve same, Coronal Balance increased to 11.2 cm. T kyphosis 90 degrees
    Severe disc degeneration thoracic & lumbar, stenosis esp L4
    Surgery: T3 to S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries,
    19 & 22 March 2013, Dr. Serena Hu @ UCSF
    Postop incisional hernia @ ALIF incision, repaired 3/2014

  13. #43
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    Dr. Lenke is definitely one of the good guys - both in and out of the OR apparently.

    And Coolblue's daughter is very fortunate since he is willing to literally travel the globe to get her the best care possible.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  14. #44
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    Apr 2013
    Location
    INDIA
    Posts
    16
    Thank you Ed, Polka,Mariaf, Susan and others. I simply preparing for the worst and hoping for the best. As probably all of us are. Tomorrow the TTS machine is going to come in. Shall try to post videos and photos of the same.

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