Anyone’s kid experienced fusion at age 3 to 4?

[Zoey]

Hi everyone,
My son has congenial scoliosis and will have his first fusion surgery at Sickkid Hospital in Toronto next month. Anyone has a similar experience before and would like to share your experience with me? We have a major concern about my son's future growth since he is so young. Any information about the surgery, recovery and any comments will be highly appreciated. I want to thank you all in advance.
Zoey

[mariaf]

Hi Zoey,

I don't want to upset you, but that is awfully young for a fusion. There are other options (casting, even traction and non-fusion surgeries). Can you share more info on your son's case? My own son was diagnosed at a very young age, was braced from age 2 to age 5, then had VBS/stapling. I also know lots of kids with large curves who have had success with casting before the age of 3. Have you checked out the infantile/casting site: www.infantilescoliosis.org? I can put you in touch with the woman who runs it if you like. That part of his spine that gets fused will not grow any more as you know, so maybe you can at least buy him some time before fusion. Please feel free to e-mail me if I can be of any help or answer any further questions.

Best of luck to you!

[Zoey]

Hi Zoey,

I don't want to upset you, but that is awfully young for a fusion. There are other options (casting, even traction and non-fusion surgeries). Can you share more info on your son's case? My own son was diagnosed at a very young age, was braced from age 2 to age 5, then had VBS/stapling. I also know lots of kids with large curves who have had success with casting before the age of 3. Have you checked out the infantile/casting site: www.infantilescoliosis.org? I can put you in touch with the woman who runs it if you like. That part of his spine that gets fused will not grow any more as you know, so maybe you can at least buy him some time before fusion. Please feel free to e-mail me if I can be of any help or answer any further questions.

Best of luck to you!

Hi Mariaf
Many thanks for your reply. I sent my first email to you two days ago but the email address was wrong. I forwarded you an new email just now.
Zoey

[LindaRacine]

Unfortunately, there are certain cases where fusion is a child's only option. With that said, I would want to be 100% certain that the recommendation to fuse is coming from one of the top 10-20 scoliosis specialists in the world.

[Zoey]

Unfortunately, there are certain cases where fusion is a child's only option. With that said, I would want to be 100% certain that the recommendation to fuse is coming from one of the top 10-20 scoliosis specialists in the world.

Hello LindaRacine
Thank you for your reply. We are living in Toronto and everyone told me that my doctor Reinhard Zeller is the best. I guess I do not have a choice to choose a different doctor in the other country.
Zoey

[mariaf]

Hello LindaRacine
Thank you for your reply. We are living in Toronto and everyone told me that my doctor Reinhard Zeller is the best. I guess I do not have a choice to choose a different doctor in the other country.
Bing

Hi Zoey,

I am replying to your email (which I just received) right now!

Best,

[Pooka1]

Hello LindaRacine
Thank you for your reply. We are living in Toronto and everyone told me that my doctor Reinhard Zeller is the best. I guess I do not have a choice to choose a different doctor in the other country.
Bing

Shriners takes kids from Cnaada. There was a testimonial on the forum about it. Your child, being so young, is by definition a rare case compared to adolescent idiopathic scoliosis. It is doubtful that there are doctors who has seen more cases of very young children than the Shriners guys because those hospitals seem to be meccas for these cases.

That is not to say your surgeon is not very skilled and experienced. I am just suggesting it is hard to believe he is more experienced that the Shriners guys.

Good luck.

[LindaRacine]

Sick Kids may see more kids with scoliosis than any other facility in the world, so I wouldn't be too concerned that they don't know what they're doing.

[Pooka1]

Sick Kids may see more kids with scoliosis than any other facility in the world, so I wouldn't be too concerned that they don't know what they're doing.

Okay then! It's just that I don't think I have ever seen another recent case where a fusion was suggested on such a young child on the forum which of course doesn't mean all that much.

And I guess the issue of not getting a surgery slot like we have seen for other children from Canada is not an issue here. That was what drove the decision for the other child to come to Shriners mostly it appears.

Zeller is pretty impressive...

http://www.sickkids.ca/aboutsickkids...rd-zeller.html

[Zoey]

Shriners takes kids from Cnaada. There was a testimonial on the forum about it. Your child, being so young, is by definition a rare case compared to adolescent idiopathic scoliosis. It is doubtful that there are doctors who has seen more cases of very young children than the Shriners guys because those hospitals seem to be meccas for these cases.

That is not to say your surgeon is not very skilled and experienced. I am just suggesting it is hard to believe he is more experienced that the Shriners guys.

Good luck.

Hi Pooka1
First of all. I thank you for your reply. Your post rings a bell to me so I just contact Shriners Hospital for Children at Philadelphia and left a message and I hope they will return to my call. I really would like to seek for a second opinion for my son's coming fusion surgery. I have been told by many people from different hospitals that Dr. Zeller is amazing. But I still want to gain more confidence in what I am doing before I sign that surgery agreement for my son.
Best regards
Zoey

[Zoey]

Sick Kids may see more kids with scoliosis than any other facility in the world, so I wouldn't be too concerned that they don't know what they're doing.

Hi LindaRacine
Thank you very much! Your reply is very positive to me since I am still struggling in which hospital is the BEST for us to go for. Since I live in Canada, and people keep telling me Toronto SickKids is one of the world classic hospital for children, I had no doubt that it is the right place for us to go. But now, I think we would like to get a second opinion from other scoliosis specialists since my son is so young. I feel the fusion surgery is the most extreme treatment for scoliosis kid since the fused spine will no longer grow. I really concern about my son's future growth.
Zoey

[Pooka1]

Hi LindaRacine
Thank you very much! Your reply is very positive to me since I am still struggling in which hospital is the BEST for us to go for. Since I live in Canada, and people keep telling me Toronto SickKids is one of the world classic hospital for children, I had no doubt that it is the right place for us to go. But now, I think we would like to get a second opinion from other scoliosis specialists since my son is so young. I feel the fusion surgery is the most extreme treatment for scoliosis kid since the fused spine will no longer grow. I really concern about my son's future growth.
Zoey

If nothing else, can you ask Dr. Zeller specifically why he doesn't want to try a non-fusion treatment like casting or VEPTR or Shilla or something other than definitive fusion?

How big is the curve and where is it in the spine? Is it congenital or idiopathic?

[LindaRacine]

When they fuse very young kids, I think it usually involves a relatively small segment, although I've seen case presentations of kids that had to have long fusions to improve their quality of life (e.g., allowing them to sit, improving their pulmonary status, etc.) Sometimes it's the best that can be done in a terrible situation.

Zoey... I'd love to hear Dr. Zeller's actual plan if you know it. I don't know if you have the resources available, but Oheneba Boachie in New York City is undoubtedly the world's best regarded expert for treating children with very large curves. He heads a non-profit group that travels to Ghana several times a year, where they see patients with curves larger than I ever would have imagined possible. He's expensive to see, but if you want the best, that's probably your best option. Whomever you see, if you get an opinion that is different than what you've already received, I'd be willing to ask Munish Gupta, who frequently travels to Ghana with Dr. Boachie, and who has an excellent reputation, if he'd look at your son's history and radiographs. He's at Shriners in Sacramento, CA.

--Linda

[mariaf]

If nothing else, can you ask Dr. Zeller specifically why he doesn't want to try a non-fusion treatment like casting or VEPTR or Shilla or something other than definitive fusion?

That's exactly what I was getting at. There are other options - and while I have no doubt this doctor and Toronto Sick Kids have very good reputations, that's not to say that any doctor in any hospital is up on all the latest techniques in this particular field. Maybe this doctor is, I don't know - I am just saying better to ask too many surgeons for their opinion than too few.

P.S. Strictly out of curiosity, does Toronto Sick Kids hospital specialize only in pediatric orthopedics? Just wondering if there are other hospitals who choose to deal only in this one area as Shriners does.

[kennedy]

Maria I can answer your question actual sickkids in Toronto ca is not like the shriners system. Sick kids treats a ton of other children medical problems. The shriners system treats all kinds of orthopedic disorders, burn injuries, spinal cold injuries and cleft lip and plate. Zoey I agree that sick kids are great at treating something's but I'm not sure about the orthopedic department. Besides like Maria and Linda said shriners are world experts at treated scoliosis. Plus like Linda mention dr Gupta does have a really excellent reputation.