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Thread: First step in the next process. . . .

  1. #1
    Join Date
    Jan 2008
    Location
    salt Lake City Utah, lucky enough to be close to Intermountain Shriners Hospital
    Posts
    22

    First step in the next process. . . .

    Well we have Jasmine's appointment with her scolio dr here in Salt lake tomorrow, I feel it's the first step in the process to find out if we'll decide to do the VBS for her. The other night at dinner I explained to her what we were going to talk to Dr D'Astous about, a basic overview of the surgery and what we hope to accomplish by doing it. All she cared about was the fact that it would make it so she wouldn't have to wear her brace any more (she's worn one 22/7 for almost 8 years now) She took the prospect of having to do another surgery a lot better then I thought she would, but I'm still nervous that at some point she'll change her mind and be upset at getting it done. The next big concern is how her bio-dad is going to handle it. I forwarded him all the info I had on VBS, and he was adamant about not getting it done. I just hope it all goes well tomorrow in the dr's office. I'm rather nervous . . . anyone have an idea on how to calm myself?

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

    Have you checked out the VBS support group on Yahoo? There are dozens of parents who have been in your shoes - or will soon be travelling down that road along with you. Everyone is very supportive and willing to share their experiences - the kids can even correspond with each other if you like.

    Here's the link:

    http://health.groups.yahoo.com/group/staplingsupport/

    A lot of parents have said it was very comforting to see how well these kids do just a few weeks out of surgery. Not to say it isn't major surgery - it is - but you will get through it and the results thus far have been VERY encouraging (my own son is 4 YEARS post-op and doing well) and hopefully a lot of these kids will avoid fusion which otherwise would have been a near certainty in many cases. Most of the VBS procedures have been done at Shriners in Philadelphia and everyone has wonderful things to say about the medical team there. It is unclear if you plan to have the VBS done in SLS but I have heard excellent things about that Shriners Hospital as well so either way your daughter will be in great hands.

    Feel free to e-mail me as well and I look forward to seeing you on the VBS site!
    Last edited by mariaf; 01-30-2008 at 08:37 AM.
    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
    Jan 2008
    Location
    salt Lake City Utah, lucky enough to be close to Intermountain Shriners Hospital
    Posts
    22
    Maria,

    Thank you, I actually have joined the VBS support group and just sort of lurk in the shadows reading and learning. I was hoping it would be possible to get it done here in SLC since all of our personal support group is here but unfortunately, due to how small Jasmine is (8 years old 3'9" and 38 lbs-my 3 year old is 2'11" and 32lbs) Jasmine's Dr thought it better to refer her to Dr. Betz. Which in one way makes me feel good because I have read so many great things about him, in another it makes me sad that if we do decide to do it we'll have to travel all the way across the country to have it done. But at least we're looking at more options then just bracing. I'm glad her Dr here did not recommend anything more then continuing to brace for now, I didn't like the other surgery options. Her curves have remained mostly stable for the last year, only going from 45 to 47 on thoracic and from 30 to 32 on lumbar. Dr D'Astous said he'd send all of the necessary info on to Dr. Betz and I should hear from him in about a month. The one thing I did have a hard time with was when Dr. D'Astous said there's only a 50/50 chance of the VBS surgery doing any good, and that it does not increase the chance that she won't have to get fused. This perplexed me, from all the research I'd done it looked like a better chance then 50/50 of correction and that it would greatly increase the chance that she would not have to get fused later. Any insight into why his opinion differed so much from the research, or had I just misread things?

    Thanks!
    Melisa

  4. #4
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Melisa,

    The person who can answer ALL your questions is Janet Cerrone. Her contact info is 1-800-281-4050 or janetcerrone@comcast.net (she just added this new email specifically for parent inquiries - and she's wonderful!). She is Dr. Betz's PA and has been involved with the stapling since inception.

    You say that Dr. D'Astous said there is only a 50/50 chance the stapling would help - what did he base this on? Perhaps the fact that her curve is at 47 (which is the high end for stapling)? Another factor would be how flexible her curve is - it would need to straighten, on bending x-ray, to about 25 degrees. Of course, there are other variables as well. One good thing is that at 8 years old she has plenty of growing left to do and that's very favorable for the stapling. And, no, you did not misread things (I believe the success rate for the stapling thus far is in the 80's somewhere).

    You are also correct that, in general having the stapling should mean less chance of having fusion later on although we have to wait and see when the kids reach skeletal maturity. We do have one child that I know of who is 17 now and done growing - she had the stapling 6 years ago and has NOT needed fusion. I think her curve was in the 30's prior to stapling but I'm not 100% sure.

    Again, Janet can answer your preliminary questions and of course when you meet with Dr. Betz he can answer them all in detail. If you call or e-mail Janet perhaps you can be seen sooner than one month. Hopefully, Jasmine's curves remain stable but at 47, there's not much wiggle room so I wouldn't wait too long.

    I'm glad you signed up for the VBS group (we have a websitie coming soon) - feel free to lurk as long as you want and of course to post and ask questions if you like too. And you can always e-mail me

    Take care,
    Last edited by mariaf; 01-30-2008 at 09:21 PM.
    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/

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