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Thread: Looking for advice and fellowship

  1. #1
    Join Date
    Apr 2007
    Posts
    5

    Exclamation Looking for advice and fellowship

    My daughter was diagnosed with idiopathic pediatric scoliosis at just under the age of 5 when she went for her for her Kindergarten physical. We were immediately referred to a pediatric orthopedist. A MRI has ruled out any underlying cause of the scoliosis.

    She was being monitored every 3 months to determine the progression of her curvatures. She has a double curve. At her most recent appointment, just last week, it was discovered her curvatures has progressed to the point of 26T and 20L. Her orthopedic Dr. has determined she now needs to go into a TLSO brace. Given her young age, we are looking at 8-10 years of brace wearing.

    Our pediatric orthopedic Dr. has offered no other advice, options, or prognosis for future developments and has generally been very detached.

    I am researching and seeking out all other available resources and options. We have applied to the Shriner's Hospital in MN and are awaiting a reply. There are no other pediatric orthopedic groups in our ares from which to get a 2nd opinion.

    ?? Does anyone have experience or know of others who have had vertebral stapling?

    ?? Has anyone been advised by their orthopedist that physical therapy can be beneficial, not ar affecting the curvature since that is known to not happen, but just for muscle tone, flexibility, etc? When I questioned our ortho on this he totally dismissed that idea as worthless. Our pediatrician had essentially the same reaction.

    The past week has been a whirlwind of emotions and frantic searching for answers. I know it will calm down and get better. We have a long road ahead of us and I hope to learn more from all of you, as well as share anything I can contribute to others in this forum.

    God Bless and thank you for your replies.
    Jazzeve
    ****************
    Mom to Brianna, age 5 1/2
    Diagnosed age 4 1/2
    26T/20L

  2. #2
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Jasseve,

    I got your e-mail and sent you a reply.

    You have come to the right place for support and fellowship. We are all in this together.

    As a matter of fact, I related to much of what you said. As you know, we chose stapling so my son would not have to face all those years of bracing as well. We are very happy with our decision but it was a difficult one to make at the time.

    You will get a lot of good advice and information here.

    Another mom (Amanda) comes on sometimes and her daughter had the stapling last summer at the age of six I believe - and she is doing wonderfully.

    As far as PT, while it probably can't hurt, just keeping active will help keep the muscles in shape as well - swimming, or any type of sports, etc.

    Good luck,

    Maria
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  3. #3
    Join Date
    Sep 2006
    Posts
    20
    Jasseve:

    Welcome to the forum. It is a tremendous place to get information and talk to people with similar experiences.

    My 7 year old son was diagnosed with scoliosis about 7 months ago. You can see the posting titled "7 year old son" in this forum. My wife and I went through all the same questions and emotions you are going through. I found it helpful to learn as much as I could about juvenile scoliosis so that I could assure that I would make an informed decision.

    The first doctor we saw wasn't a good fit so we sought a second opinion and found a doctor that the whole family was comfortable with. After watching the progression my son was measured for a brace and received it in February. He has done an amazing job adjusting to wearing it.

    I spent a lot of time on this forum talking to some amazing people who were able to give me great advice. Here is what I did and I hope it helps.

    I researched all the different types of braces including Spinecor. We made an appointment with Dr. Rivard in Montreal but after meeting with the second doctor, felt so comfortable that we never made it up there. I hear they are doing amazing things with the brace.

    At Maria's suggestion I looked into stapling and discussed this with my doctor. We have decide to wait on any long-term decisions until we see how his curves react to the bracing.

    I spoke to about 8 different doctors to get an idea of what they were doing at their hospitals. They all seemed to have a similar approach.

    My doctor suggested Physical Therapy and my son has been going for about a month. While it will have no effect on the curve progression it is important to build up the muscles around the spine.

    The decisions are much more difficult when you are making them for your child. While I can't guarantee that I made the right decision I can guarantee that I made the most well informed decision I could.

    I would be more than happy to discuss this with you if you feel that would be helpful. Send me a private message and I can reply with my tel # and email address.

    Ken

  4. #4
    Join Date
    Jan 2006
    Location
    Austin, Texas
    Posts
    112
    Hi Jasmine,

    I sent you an email directly.

    This is a great place and you will find much support.

    Please feel free to call me or email me.

    Talk to you soon.

    Amanda
    Amanda

    Mom to Lorena 7 yrs old
    Diagnosed 8/2005 ~ 26 Degree Curve
    Progressed to 42 Degrees by Dec 05
    Milwakee Brace 1/16/06 - 6/26/06
    Vertebral Stapling on 6/26/06 @ Shriners in Philadelphia
    26 Degree Post Op Curve
    Last X-Rays December 07 ~ 26 Degree Curve
    Email: domingo_amandapompa@msn.com
    Website: www.vertebralstapling.com
    YouTube Video: http://www.youtube.com/watch?v=n6GmX3K7FIs


  5. #5
    Join Date
    Jan 2007
    Posts
    5
    Jazzeve

    My 11 year old daughter recently underwent vertebral staplilng on Feb. 15, 2007 in Atlanta Ga. She had a 39 degree curvature. She is now at 19 degrees and doing great.

    I will be happy to try to answer any questions you may have. Please feel free to email me at slfalk@comcast.net.

    Lisa

  6. #6
    Join Date
    May 2005
    Posts
    7
    Hi Lisa
    I live in England and my daughter (11) has been in a brace for a 40 degree curve for 2 years now. When I asked our consultant about vertebral stapling he dismissed it as only used for congenial scoliosis. I would be interested to hear what you have to say about it as from the little I've read it seems that it could be a way of correcting the curve without the need of fusion.
    Sam

  7. #7
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Dear Auktwister,

    What you were told about vertebral stapling being used only for congenital scoliosis is absolutely WRONG. My son, as well as many others without congenital scoliosis, have had it done successfully. Please feel free to e-mail me at the address below.

    The only two "general" criteria for stapling are:

    1. A moderate curve. They don't like to staple curves much above 40 - but will sometimes staple curves in the 40's if there is a lot of flexibility in the spine.

    2. The child must have some growing left to do.

    There are of course other factors to be considered but these are the two general criteria.

    The center that has done the most of these surgeries in the U.S. is Shriners Hospital for Children in Philadelphia, Pennsylvania.

    I don't know if it is feasible for you to consider a trip there - but the toll free number is 1-800-281-4050. I hope this number works from outside the U.S. I believe it does - but if not I can look into it further if you like.

    Since your daughter is at 40 degrees (that's exactly what my son was before he had the stapling) and doesn't have too many more years of growth left, I would act sooner rather than later.

    Best of luck to you,
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  8. #8
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Hi Maria or anyone else who knows about the stapling procedure:

    I asked our orthopedist about stapling, among other, newer procedures that might postpone the need for fusion or be instead of fusion. He denied its relevance to my son's situation because he has congenital scoliosis. This Dr. said the stapling is only used for idiopathic scoliosis. Yet I'm reading on this thread that some people think stapling is only used for congenital scoliosis.

    This Dr. doesn't do the stapling procedure because he says it's too new & unproven. But so many of your children seem to be having a great result. Even though my son's lumbar curve is probably too high for it, I still want a realistic medical opinion if it may be at all possible for my 12 year old. I have an appt. with Dr. Betz in PA on June 7th (this would be our 5th opinion about the surgery & it's very far from our home in Seattle) but many of my family members think my hope for some alternative to fusion is a pipe dream.

    Do any of you know for sure about someone's congenital curves being improved or even held stable by the staples?

    The same Dr. I mentioned above also had different info than I read about the osteotomy procedures... Do you think he's just not up on the fusionless procedures? I guess I just want to know if anyone can reassure me that I have a real reason to go to PA, not just a wild, unrealistic fantasy.

    Thanks for any info anyone has.
    Laurie

  9. #9
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Laurie,

    Regardless of anything else, I'd keep the appt. with Dr. Betz. He's the best of the best and I know many patients (not just stapling patients) whom he has worked near miracles for, coming up with options the family didn't even know existed. I met one such mom on my last visit there. You can also call 1-800-281-4050 and ask for Janet Cerrone. She's the PA who works closely with Betz and she's VERY informed on stapling among other things.

    Anyway, I would agree that it is very possible that a congential condition could make one inelgible for the stapling. I'm not sure if it has been used to treat congenital scoliosis but I knew that when that doctor told Auktwister that is it ONLY used to treat congenital scoliosis that was incorrect.

    Hope this helps.

    Please feel free to e-mail me as well.

    Maria
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  10. #10
    Join Date
    May 2005
    Posts
    7
    Thanks for the advice Maria. I do wonder how up to date some of these consultants are on the latest techniques. If it comes to surgery I want to know that our surgeon knows the latest stuff and at the moment it doesn't appear that he does.

  11. #11
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi all,

    I agree that AUKTWISTER received incorrect information. Stapling is for very children who have idiopathic scoliosis who must meet very strict criteria. Stapling can not correct or even support congenital malformations. It just can't happen.

    Laurie - please continue getting opinions about your son. You need to have as many details and as much information to make your decisions with. Hearing from several orthopedic surgeons who have successfully treated kids like him will help. It will be your job to take their recommendations and come up with the right plan for him. Even 20 years ago this decision wouldn't be so hard because there weren't any other options beside fusion. That's what the option was. Period. Now, medical technology has provided several options to choose from. The hard part is finding the right surgeon, with the right recommendation, at the right time. Good luck.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  12. #12
    Join Date
    Jan 2007
    Posts
    5

    vertebral stapling

    Hi Sam and Laurie

    I am sorry it has taken me awhile to respond. I agree with the information that the others have stated about who is a candidate for vertebral stapling. My daughter has idiopathic scoliosis. She was diagnosed when she was 8 years old and had about a 20 degree curvature. It was recommended at that time that we monitor her on 4 to 6 month basis. We watched the curve slowly progress over the next 3 years. In October 2006, She was at 27 degrees and three months later she progressed to 39 degrees. At which point, our orthopedic recommended a TLSO, but also mentioned the possibility of vertebral stapling, but did not know if she was a candidate. We then had a vertebral stapling consultation with Dr. Oswald in Atlanta, who was trained by Dr. Betz. He felt that she was a good candidate as she is a risser 0 and has a lot of growth left. Surgery was done in February. Her recovery was quick and she only missed a week of school. Her curve 2 weeks after surgery was reduced to 19 degrees. We have another appointment in June. In retrospect and knowing what I now know, I would again choose surgery for my daughter. She is in middle school and I think wearing a hard brace would have been very difficult for her. Please let me know if I can answer any questions.

    Lisa

  13. #13
    Join Date
    Jul 2005
    Location
    NY State on border of northeastern PA
    Posts
    20

    vertebral stapling

    Hi everyone! I also have a young son (7 now) who has idiopathic scoliosis. See my original forum posting: http://www.scoliosis.org/forum/showthread.php?t=2260

    Alex was diagnosed in 7/2005 and wore a TLSO brace for 10 months w/ progression of his curves (he has a double curve) as he grew out of the brace too quickly and it was actually pushing his curves the wrong way! After haveing a second brace made and having it adjusted three times w/ no success,(it just didn't fit right! ) we (his father and I) were at our whits end with the bracing! We decided to take a wait-and-see approach for 6 months and his thoracic curve progressed another 5 degrees.

    After speaking with Maria several times and researching a whole lot, we have applied to Shriners Hospital for Children in Philadelphia and made an appointment with Dr. Betz as well on 6/7 to have Alex evaluated for the vertebral stapling procedure. I have high hopes that this is the right thing to do for Alex's future well-being, but am also scared of the actual procedure and pain Alex will have to undergo.

    This forum is a GREAT place for support & understanding from other parents who are familiar w/ scoliosis and all its in's & out's!

  14. #14
    Join Date
    Jan 2006
    Location
    Austin, Texas
    Posts
    112
    Hi Kim,

    Good Luck on Alex's upcoming appointment.

    You will LOVE Dr. Betz he's an AWESOME surgeon/physician but just as important he's an AWEOME person. He as well as the entire staff at Shriners really look out for the kids.

    Maria ROCKS ~ she's a wonderful lady who really helped our family.

    Keep us posted on how everything turns out.

    Amanda
    Amanda

    Mom to Lorena 7 yrs old
    Diagnosed 8/2005 ~ 26 Degree Curve
    Progressed to 42 Degrees by Dec 05
    Milwakee Brace 1/16/06 - 6/26/06
    Vertebral Stapling on 6/26/06 @ Shriners in Philadelphia
    26 Degree Post Op Curve
    Last X-Rays December 07 ~ 26 Degree Curve
    Email: domingo_amandapompa@msn.com
    Website: www.vertebralstapling.com
    YouTube Video: http://www.youtube.com/watch?v=n6GmX3K7FIs


  15. #15
    Join Date
    Mar 2005
    Location
    novato, ca
    Posts
    83
    Everyone's talking about stapling, but there are other options as well.
    I knew my daughter Shelby would eventuallyneed surgery, so first we braced her. I felt at six she was too young for surgery and wanted to postpone it as much as possible. We got to do this about two years. Then we went to growth rods. Shelby just had her fifth surgery last week.
    The thing I like about this surgery is that the spine is allowed to grow up naturally, and the rods help it to progress in length, without any actual fusion.
    This surgery does take place every six months, so you have to be prepared to deal with that. But having had scoliosis myself, I felt this was the best option for us.
    Best of Luck,
    Emily

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