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Thread: Newly Diagnosed - First post - 13 year old girl with AIS

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  1. #1
    Join Date
    Nov 2014
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    3

    Newly Diagnosed - First post - 13 year old girl with AIS

    HI all,

    We found out about my 13 1/2 year old daughter's AIS scoliosis last month with an S curve (38 degrees right thoracic and 49 degrees thoracolumber per the official X-ray report though surgeons gave slight variations of this measurement still within 5 deg error range). The doctor said her Risser sign 0 as she just started her Menarche at the end of September and so we are afraid the curve progression would get worse.
    We met with 3 Ortho surgeons and all are of the opinion that she is close to surgery range (above 50 degrees) though 2 suggested trying Boston brace, which is coming soon.

    I want to try all possible non-surgical options before we consider surgery.
    We met with PT where they had Medx TR equipment and I gave her the Dr. Mooney research paper to review (along with Dingoís list of exercise he uses with his kid) and suggest a good routine to try for us. As my kid does not have any pain right now, she was having hard time justifying a routine due to insurance reasons. She is reviewing and will get back to us. I am having trouble finding an expert in this area who could guide us to ensure we do the exercises properly and not cause harm. Any help from forum experts is appreciated here.

    We also met with Schroth trained PT and starting few sessions starting next week.

    We met with a Yoga teacher who trained with Elise Miller (Yoga for Scoliosis DVD) and she gave some initial exercise to try which we have not started yet.

    It has been extremely emotional for the family to deal with this situation and we are doing everything we can to keep a brave front while we deal with this situation.

    I got few questions and appreciate forum experts responses:

    1. What else I can do to try other non-surgical routes? Is there any danger in trying all of the above simultaneously (Yoga, Schroth and Medx TR).
    2. How to meaningfully measure her progression without getting x-rays in short intervals?
    3. I read about Fibrillian-1 and Fibrillian-2 gene mutations as potential causes for AIS and is there any hope for gene therapy (which is probably too late for my daughter).
    4. If her curve progress and situation gets into surgery territory, should we consider doing it now versus six months from now or a year later etc so it would not become very difficult surgery.
    5. Should we get an MRI now to rule any other causes of scoliosis, one of the Orthos suggested since she said we will do one before a surgery (she was assuming we will go for one soon)

    Thank you all in advance for your time and responses. If I missed providing any additional information that would help to answer a question, please let me know.

    Thanks.

    -Sam

  2. #2
    Join Date
    Jan 2008
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    NC
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    9,293
    Hi Sam. I am sorry to hear about your daughter's diagnosis. It's like a ton of bricks. I'll try to answer your questions but I hope others do so also.

    1. What else I can do to try other non-surgical routes? Is there any danger in trying all of the above simultaneously (Yoga, Schroth and Medx TR).

    In terms of what to try, do you mean all available treatments or just treatments shown to be effective? In re simultaneous treatments, nobody know the answer to that because it hasn't been studied. For something like TR, only 35 people in the world have been studied for example and it certainly hasn't been studied in conjunction with other PT.

    2. How to meaningfully measure her progression without getting x-rays in short intervals?

    That's an important question. There are low radiation and no radiation imaging techniques but I am not sure where you can find them. Ask your surgeon.

    3. I read about Fibrillian-1 and Fibrillian-2 gene mutations as potential causes for AIS and is there any hope for gene therapy (which is probably too late for my daughter).

    Did someone mention Marfans to you? There is a genetic test for this but there is about a 10% false negative so Marfans can't be ruled out with it. But scoliosis associated with Marfans is only a small percentage of AIS. If someone is working on gene therapy for Marfans I'd like to know about it. I doubt it.

    4. If her curve progress and situation gets into surgery territory, should we consider doing it now versus six months from now or a year later etc so it would not become very difficult surgery.

    With a TL curve, my immediate question to the surgeon would be how low the fusion will go if you do it immediately versus if you wait. There are surgeons who operate on TL curves below the 50* trigger for the sole purpose of saving levels in the lumbar. This matters because it might mean the difference between only having one fusion surgery in her life versus needed a second that goes to the pelvis (fusing all the lumbar). Only a surgeon can answer that. Your daughter is Risser 0 so that is going to matter in terms of avoiding crankshaft. Again, you need to ask the surgeon.

    5. Should we get an MRI now to rule any other causes of scoliosis, one of the Orthos suggested since she said we will do one before a surgery (she was assuming we will go for one soon)

    One of my daughter's had an MRI and the other didn't. The reason was the extremely fast progression rate.

    Good luck going forward. This is fixable. Some things are not so there's that.
    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."

  3. #3
    Join Date
    May 2008
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    reno,nevada
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    Quote Originally Posted by saminD View Post
    It has been extremely emotional for the family to deal with this situation and we are doing everything we can to keep a brave front while we deal with this situation.
    Initial reactions to a scoliosis diagnosis can be a scary, heartbreaking thing.....Our minds whirl with questions of the unknown(What is going to happen?) while we are in shock, then after a while we do calm down, we do, and we accept our situations after time passes. Try to remember that its nobodies fault, these things happen. Learn to breathe to control anxiety.

    Your daughter has a 40 over 50 at age 13....itís a good size curve for that age, some are way worse and some are not. Dingoís boy was around 9 years of age with a 10, and nipped it in the bud, nice to put the fires out at an early stage....Please remember that curves have errors in measurement due to many factors(+/-5į) so I simply round numbers. Progressing from a 38 to a 39 isnít worth too much worry and worrying and stressing the little things isnít good for the health.

    She needs to be seen by a scoliosis surgeon. Not just a regular orthopedic, scoliosis surgeons go through extensive training, and it should be done at one of the known scoliosis training centers. HSS, TCSC, UCSF etc....I did consult with a ďregularĒ ortho years ago and he was honest enough to back down, at least he had some integrity. Initial selection of your surgeon regardless of if you do surgery or not, is very important. My surgeon trained for 19 years and came out of Twin Cities Scoliosis center which was where the SRS was founded, in Minneapolis in 1966. Direct all of your surgical and scoliosis questions to your surgeon, these guys can rule out things that others will miss.

    There are some really knowledgeable people on this forum and Iím sure many will chime in after recovering from Thanksgiving dinner....Sometimes I wonder if this recovery is worse than scoliosis? (smiley face)

    Deep breaths.....and welcome to the forum

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA 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

  4. #4
    Join Date
    Sep 2003
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    Northern California
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    A couple of thoughts...

    Dingo's kid had a TINY curve, which is almost certainly different than your child. He is not a trained therapist.

    If this were my child, I would probably pick one therapy that seemed reasonable, and try that. As Pooka mentioned, nothing specific has actually been proven effective at this point. If your child seems reluctant to try something, you might want to consider trying to convince her to do side planks. There is a recently published study on this exercise. What I really like about it is that it requires very little effort.

    Side planks article

    The other thing to add to all of the stress of this issue is that you should be careful about making too big an issue of it. Some kids take too much parental involvement as a sign that their parents think they're imperfect. Some years ago, as part of the SRS Bracing course, I heard a specialist say that a parent should never insist on bracing at the cost of destroying the relationship with their child. To be fair, however, I have heard from adults who are disappointed that their parents didn't insist on pushing them into treatment (both non-surgical and surgical). All you can do is educate yourself (you've obviously already done a great job at that), and make the best informed decision that you can.

    My advice is to let your kid know that this is a serious issue and that you want to help, but that you also value their involvement in determining which treatments to try and that whatever the chosen treatment, it might not work. Unfortunately, once we have a diagnosis of scoliosis, the vast majority of us have to deal with it for the rest of our lives.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  5. #5
    Join Date
    Jan 2008
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    Quote Originally Posted by LindaRacine View Post
    My advice is to let your kid know that this is a serious issue and that you want to help, but that you also value their involvement in determining which treatments to try and that whatever the chosen treatment, it might not work.
    This is such great advice. You want your child to own this but know that you will help them. Your daughter knows as much about torso rotation as you and Dingo do... there is very little to actually know. Dingo is a lay person. Dingo's son's curve crept up a little then seemed to stop. It is impossible to say that was due to TR. Gayle's son's curve crept up and then stopped and is regressing without doing ANYTHING. Does that mean TR stopped Dingo's son's curve regression? Who knows? The point is nobody knows anything since only 35 people have been studied and they certainly didn't all avoid surgery. The grandson of the lay woman who invented Schroth, a trained surgeon and researcher, gave it up and admitted it wouldn't help people like your daughter with large curves. There is no evidence yoga let anyone avoid surgery because some curves, even large ones, stop progressing on their own.

    There are horror stories of melt downs in young adults who feel they were lied to by their parents in cajoling them to do a treatment and then they still needed surgery. Please be careful what you tell your daughter. The fact is there is no conservative treatment that has been shown to let kids avoid surgery for life if they are going to be surgical.

    It is unfortunately the case that it is very hard to study conservative treatments. They may work but we don't know that. The plank exercise seems like a good try because it isn't burdensome if a child wants to try it. That doesn't mean it helps people avoid surgery for life.
    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."

  6. #6
    Join Date
    Dec 2011
    Location
    Heidelberg, Germany
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    options

    Hi Sam-

    Good for you, willing to try everything and anything. However, at Risser 0, and those high numbers, the probability of progression is statistically very great. I hope you see a specialized scoliosis surgeon as soon as possible before time, money, and energy lost on unproven therapies! Read the threads here to see the path taken by many in the same situation as your daughter.

    Possibly, your daughter could be a candidate for Vertebral Tethering which is a non-fusion surgery that would preserve her range of motion and avoid fusion. However, the window of opportunity is very small for this so I highly encourage you to contact a doctor experienced in this now. It requires low Risser, and ideally Cobb angles not much greater than hers currently are. Some surgeons performing this include Drs Betz and Antonacci, Shriners in Philadelphia, Dr. Newton at RADY, and Dr. Diab at UCSF.

    Best of luck to your daughter,
    Emily
    Emily, 43
    approx 50 T, 36 T/L

  7. #7
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    Tethering! Very good suggestion. At Risser 0 I hope she would be a good candidate. I think you are still under the upper limit for Cobb angle.

    If they take her and it works, she would hopefully avoid fusion.

    One other thing you might want to ask a surgeon... if genetically driven anterior overgrowth of the spine results in curvature, how will any PT be it torso rotation, yoga, Schroth, chiro, etc. ever work in the long term?
    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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