Vertebral Back Stapling Experiences?

[LMB123]

My 13 year old daughter was diagnosed with idiopathic scoliosis last year. She has a 27 degree thoracic curve with a compensatory curve above. She has been wearing a Cheneau Brace for the past several months for 16 hours per day and is absolutely miserable. She has not adjusted to wearing it to school and is sad about it all of the time. We are considering the Vertebral Back Stapling procedure at Shriner's Hospital. I know a 15 year old girl who had the procedure in NYC last year and it seemed to go well.

Does anyone have any experience with this type of surgery? My daughter is considering it because she cannot imagine wearing the brace until the 10th grade. The procedure seems to have a high success rate but I know it is new. I am worried about a surgery on her back, the associated risks and the fact that the staples are permanent.

I would appreciate any information.

Thank you,
LMB

[leahdragonfly]

Hi there,

I will post more later, I'm just running off to work now.

My daughter had a successful VBS surgery 2 years ago at age 8. There is a wonderful support group at www.vertebralstapling.com, run by several moms whose kids have had this surgery. I am sure Maria, the list owner, will pop by here and welcome you also. There are plenty of parents there who can tell you all about VBS.

I hope to see you there.

[Resilience]

Welcome.

My daughter had VBS recently at Shriners in Phila. If you are considering this I would recommend contacting them for an appointment. They are the pioneers of the procedure. They've done 400 cases I believe is the number, and have evaluated all of the data and outcomes scientifically. Based upon this they have specific criteria for which children qualify. I know that the closeness to skeletal maturity and where the child is at in terms of puberty plays a role. At 13 years old, her clock is ticking.

I'd also recommend the Vertebral Body Stapling forum: www.vertebralstapling.com for more info. There is info there on how to contact Shriners.

My daughter is just 4 weeks post op today but so far we are very pleased. She's been back at school full days for a week and a half. Youth!

Best Wishes

[mariaf]

Hi LMB,

My son had VBS at Shriners, Philadelphia, in March of 2004 and is doing well. Having been through the teen years twice (and starting a third time), I can certainly understand your daughter’s feelings with regard to the brace. Most kids her age would also struggle with this – I know my daughter, now 21, was so distraught to start high school with braces on her teeth (something much more common), that she threatened to remove them herself with a pair of pliers!

By the way, we continue to travel from NY to Philly for follow ups and monitoring because the care has been excellent and they are really ‘the’ experts when it comes to scoliosis in children.

I think the best way for you to learn more about VBS and to hear from a large number of parents about their experiences is to join our VBS website, the one Gayle referred to, www.vertebralstapling.com.

I co-moderate the site, so if you’d like to send me an e-mail at mariaf305@yahoo.com, I will get you set up.

I look forward to assisting your family in any way I can.

p.s. The contact person in Philly is Janet Cerrone (see my signature for her e-mail address and phone number). Janet is awesome and will set you up with a consult so that you can ask questions and really learn about VBS from the doctors who pioneered the procedure over a decade ago.

[LMB123]

Thank you for the quick responses to my posting. It is very reassuring to hear from families who have had a positive experience with VBS. I am in touch with Shriner's about the surgery and hope to have my daughter evaluated during the next few weeks.

Would anyone be able to tell me about the recovery? I understand it may take a full month to recover and I assume it is for the wounds to heal. If we have the surgery during the summer, will she be able to get back to a regular routine in a few weeks? I understand that she won't be able to swim in the ocean for several weeks, but I hope she is able to do other things. We would like to plan a family vacation at one point during the summer.

My daughter has never been hospitalized before and is worried about pain. Will she feel the staples once they are in her back? Can anyone tell us about their experience with recovery?

Maria - I will send you a separate e-mail with my contact information. Thank you for your support.

Sincerely,
LMB

[mariaf]

Hi LMB,

Let me start with the easy questions - no, your daughter will not feel the staples :-)

Recovery varies from child to child - my son was feeling like his old self in about 3 weeks. As far as a family vacation, your daughter would in all likelihood be up to it after 3-4 weeks (again, everyone is different), but she may still have restrictions until she goes back for her 3-month checkup appt. - so perhaps certain rides would be off limits - but things like sight-seeing, mini golf, probably even things like bike riding or tennis (or most other activities that do not involve swimming/going in the water) would be OK after a month or so, provided she felt up to it. Of course, the 'no water' rule is to reduce the risk of infection until the incisions are completely healed. (I once had a biopsy which left the tiniest incision - it was so small that only a regular 1" bandaid was needed to cover it - and yet I was not allowed to go swimming for several weeks for that same reason).

Of course, you would need to speak to your daughter's surgeon about what she is and isn't allowed to do at every juncture - I am just speaking in general from what I know. The surgeon is the only one that can tell you this, after taking into account all of the particulars in your daughter's case.

As for pain, my son was never in agony or any severe pain - just more like discomfort the first few days, particularly the first time he got up to walk around, etc. - but the staff at Shriners kept his pain extremely well-managed. Then, once we got home (about 6 days post-op), the only thing he took was OTC Tylenol, and he even stopped asking for that after a couple of days. Again, this is just our experience.

Hope this helps!