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Thread: vertebral stapling/veptr for 12yo?

  1. #1
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    vertebral stapling/veptr for 12yo?

    Does anyone know if vertebral stapling & veptr rods are ever used for the first time on 12 year olds? My son has congenital scoliosis & we are facing spinal fusion surgery within the next couple of months & I keep hoping to find something better than fusion for him. If we have to do the fusion (probably starting anywhere from T4 to T6 & going down to L3 or L4), we will. We even have a couple of surgery dates with two different doctors here in Seattle. But I'd like to put it off for longer than we presently can if possible. My son's curves are T45 & L60-65 & 3 surgeons have recommended surgery ASAP. But for weeks now I've been reading on this forum about all these innovative procedures. For some reason I haven't felt they were applicable to my son but now I'm changing my mind. There's a woman on this forum (Carmell) whose son is the same age as my son & her son has the veptr rods. Maybe they would work for my son too? My son is only 4'9 1/2" tall & fusion would stunt his growth... anyway he's still so young for it.

    If anyone has any information about this I'd really appreciate you sharing it. If someone could recommend some doctors or hospitals I could contact about finding out if my son would qualify for either of these procedures, that would be amazing. Thanks for any answers anyone has!

    Laurie

  2. #2
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    Hi Laurie,

    Welcome! You are doing the right thing by getting several opinions. Sometimes you just have to find that one doctor who proposes the option you feel most comfortable with.

    I know that Carmell's son is a wonderful VEPTR success story. I'm sure she will reply soon. She's a great source of information.

    You ask for doctor/hospital recommendations. I don't know if it is feasible for you to travel to Philadelphia, but I would strongly recommend a consult with Dr. Betz. He's one of the best in the country. He offered us options we didn't even know existed.

    Dr. Betz does the VEPTR and the stapling (although I'm honestly not sure if your son would be a candidate - I really can't say - the biggest curve that I know of personally that was stapled was in the low 50's. That patient (a 4 or 5 year old boy) was having his surgery the same time as my son - and I was told his spine was very flexible).

    I agree with you that fusion should be your last option. Boys grow well into their teens. VEPTR may, in fact, turn out to be the best option for your son.

    Most importantly you need an orthopedic surgeon you have total confidence in.

    Best of luck and keep us posted.
    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
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    Thanks for all the information Mariaf. I also suspect Alexander's lumbar curve may rule him out as a candidate for the stapling. But I am interested in the VEPTR. It seems like only a few docs do it. Even though I live in Seattle I'll look into it in Philadelphia & try to see if anyone in the Northwest could consult with me about it, evaluate my son & maybe even do the procedure. I've seen two docs at Children's Hosp here & no one ever mentioned these procedures to me. Children's is supposed to be such a great research/teaching hosp. but I have not been made aware of anything through them other than "wait & see" or "let's do a fusion".

    Does anyone know who "the best" pediatric orthopedic surgeon may be in the Northwest? I really like our current doc but have only been offered traditional treatments like I mentioned above from him as well...

    Thanks again for any info you can give me.
    Laurie

  4. #4
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    Laurie,

    Just in case you want it, the toll free number to Shriners in Philadelphia is 1-800-281-4050. You can ask for Janet Cerone, the Physician's Assistant who works closely with Dr. Betz. She's extremely nice and is also a wealth of information.

    Good luck,
    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/

  5. #5
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    Thank you so much for that contact name & number! I've left Ms. Cerone a message now & I'm also calling other Shriner's Hospitals in my region.

    I really appreciate your help.
    Laurie

  6. #6
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    You're welcome, Laurie.

    Let us know how things turn out. I will be hoping and praying for the best possible outcome
    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/

  7. #7
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    Hi Laurie,

    Yes, there have been kids 12 and older who have been good candidates for the VEPTR procedure. There have been some great success stories with these kids. Each patient (as you know) is unique and no one here can tell you what the right recommendations for him would be. Only a qualified orthopedic surgeon can do that.

    Having said that, I know Dr. Kit Song in Seattle does VEPTRs and other spine surgeries. Dr. Redding is the pulminologist there and is wonderful with these kids. Not sure your son has pulminary compromise, but it never hurts to check that part out.

    If you've seen Dr. Song, the next place I would suggest is SLC. There is a great Shriners facility in SLC, tho they've only done one VEPTR implant to date. Primary Children's Medical Center in SLC is where Braydon has his VEPTR surgeries. His ortho (Dr. John Smith) has done more VEPTRs than anyone except San Antonio (where the VEPTR was developed). He would be able to give you an honest opinion on the best treatment for your son. He told me about a relatively new study done by some docs in CA and OH that prove that early fusion is NOT good for kids. Period. (Sorry, don't have the reference in front of me.) I know from first-hand experience that early fusion is not good. Braydon had a fusion surgery as an infant - not good. The VEPTR has expanded his chest so his lung (right side) can function as much as possible. His lung function remains stable. If he had not had the VEPTR surgery, his right lung would have atrophied by now and he would be at least oxygen dependent. Not a good option, IMHO.

    Dr. Betz is wonderful too. However, his surgery schedule is far out (scheduling September and beyond now) because he's rehabilitating from shoulder surgery himself. He would be able to give you an honest opinion about your son's spine issues. It would even work to have an opinion from several docs (Drs. Song, Smith and Betz) then decide what procedure is best, THEN decide where to have it done. You don't have to have the surgeon who made the best recommendation do the surgery. These docs tend to work well together and will communicate (a rarity, I know, but its true).

    I think you are doing great by researching and helping your son avoid fusion surgery right now in his life. Keep up the good work and let us know how things go. I'd be happy to share more of our actual experiences if you'd like.
    Last edited by Carmell; 05-04-2007 at 12:40 PM.
    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/

  8. #8
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    Hi Carmell,

    What you say about Dr. Betz is true - but "health issues" sounds so serious

    Just to clarify, he had shoulder surgery and is currently doing rehab to get back to 100%. And, yes, he probably won't be back in the OR until September.

    Just didn't want anyone to think he was in failing health or anything - luckily he will be around for these kids and hopefully performing surgery for a long time to come
    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/

  9. #9
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    Utah
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    Thanks Maria - that's what I get when I try to hurry and abbreviate my comments. I fixed it, hopefully. Have a great weekend!
    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/

  10. #10
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    Hi Carmell & Maria,

    Thank you for all your helpful information. I spoke with Janet Cerrone @ Shriners in Philadelphia & faxed them an application for an appt. with Dr. Betz. We will somehow afford to go & see Dr. Betz & are glad he at least has more office hours because of his shoulder injury.

    No one in Seattle has even mentioned alternative surgeries to me for Alexander. We had seen Dr. Kit Song for a 2nd opinion when Alexander was 6 yrs old. He agreed with our primary pediatric ortho that we should just "wait & see" what happens. Of course I didn't want to do that but I didn't start researching alternative surgeries to fusion until recently. Instead, I took Alexander to multiple appts for various types of massages & acupuncture, none of which seem to have helped. I'm starting to feel angry at myself for this as well as at the MDs who didn't tell us any alternatives.

    That being said, we didn't like Dr. Song's manner or outlook about our son. He made us wait for hours for the appt (after waiting months to get the appt), & then seemed grim about the possibilities of the future with congenital scoliosis without offering us any viable treatments. We did not go back to him then but I may change my mind... Maybe I should check out SLC too since Philly is so far away.

    Thanks again for everything.
    Laurie

  11. #11
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    Laurie,

    Shriners may be able to help with the cost of travelling to Philadelphia if you cannot afford it. Airlines sometimes donate miles to the hospital for use in cases exactly like yours.

    So if, after getting several opinions, you happen to choose Dr. Betz, do not let the cost issue stop you. As you may know, when the time comes for surgery, one parent can stay with the child in the hospital during the entire time. There is also a Ronald McDonald House very close to the Philadelphia hospital where a second parent can stay at little or no cost. They even have drivers to take the parent back and forth if they have no other way to get there.

    Best of luck and keep us posted. If you have any questions or if there is anything I can do, please also feel free to e-mail me.
    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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