Exciting news

[LindysMom]

Hi to everyone.
We brought Lindy in on Monday for her first CT scan. Things went well.
I spoke to her doctor yesterday. He told me that he just got back from a conference last week and he brought all of Lindy's information with him. He met with some of the best spine doctors in the WORLD and was told about a new surgical procedure that may possibly eliminate the need for a fusion to be performed. Always before, when a seperation of fused vertebrae had been performed, the vertebrae always fused back together. This doctor seems to believe he has discovered a way to prevent that from happening!!!! Dr. King seems to think this could be done for Lindy rather than the fusion. We'll meet with him at his office in January to discuss the details. I'll get all of the information that I can to share with everyone here.

This surgery has only been performed a couple of times and too recently to know for sure if it will be totaly successful. In the event of a refusion of her vertebrae we will have to go in and have the fusion done. This may, however, buy us some time to allow her spine to grow to a more adult size. It's worth a shot!!

To all parents out there that are facing a future fusion surgery, I stronly recomend that you discuss this alternative with your child's doctor before you do anything. Like I said, I'll get as much information as I can for you. Wish us luck!

[andrea]

Hi Lindy's mom

Good to hear things went well with the scan! For some reason your post isn't coming up on the forum homepage as the most recent, so perhaps my reply will boost you up there. Unfortunately I know nothing about congenital scoli and the treatments available, but it sounds like you've found yourself a good guy who has access to really up to date treatments. With any luck you'll be able to avoid a fusion at such a young age, and at least be able to postpone it for a few years more, which is great news.

It'd be good to read more details of the treatment for anyone else going through the same thing, so please let us know when you have more news.

All the best for the forthcoming weeks.
Andrea
x

[tonibunny]

This is brilliant news!!!! It is so good to hear about new treatments that are being developed for infantile scoliosis :D Good luck, please keep us posted as to how you and Lindy are getting on!

[titch]

That's great news :D

I think I know why your posts don't seem to show up well though, which is the apostrophe in your login name - the system allows you to sign up with them, but then is allergic to them, a situation I'm not sure how to prevent :( So if you let us know that you've seen this by replying to this thread, one of us will take the apostrophe out, and you should then be able to sign in as normal, and things should work properly :-) Really sorry for the hassle though :(

[LindysMom]

Sorry for the trouble. If the apostrophe could be taken out that would be great. Thanks.
Holly

[sins]

Hi Holly,
That's really encouraging news about Lindy.Anything that can delay fusion deserves serious thought.When you find out exactly what it involves let us know so we can get the news out to other parents.Well done for looking for alternatives.Best wishes to you and lindy for a very special Christmas.
Sins

[LindysMom]

If anyone is interested in this alternative procedure, the doctor who is developing this is Dr. Randall Betz in Philladelphia. I'm not sure exactly what is involved and what the requirements are. I'm also not sure if every child would be a candidate for this procedure, but I feel it's worth checking out. Good luck to anyone who does. Let me know.
Holly

[nemesixia]

The procedure is called Vertebral Body Stapling. You can find an interview with Dr.Betz here: www.scoliosis.org/resources/spinalconnection_win2003.pdf
Unfortunately, the method still seems to be in an experimental stage...

[sins]

Nola's little girl Bronwen may be a candidate for this procedure.(see thread below on vertebral body stapling).Let us know when you schedule your appointment Holly.I'm sure if you pm or e mail Nola she'll be happy to help.There's also some good posts on vertebral body stapling on www.scoliosis.org forums as well as the article and interview that Nemesixia has pointed out.
Sins

[andrea]

Holly

It's not something that we've looked at as Erin's curve is too large for her to even be considered for this. I think the curve has to be below 30 and at Erin's last check up it was 45 (we started at 62). I didn't know that it was done on congenital cases, so thanks for sharing the information - it's always great to learn new procedures etc. Wish you all the best for the appointment.

Andrea

[LindysMom]

Lindy's curve was at 50 degrees when she was seven months old. I believe it has gone up since then, but I'm not sure how much. I'll find out for sure when we see her doctor again in a couple of weeks. I pray it can still be done for her. For the first time in such a long while, I have some hope for her!
Holly