Did I screw up?

[mossters]

Hi all- I posted awhile back regarding my 7.5 year old Emma needing to get surgery. She has a double curve. It is now 67 degrees upper and 57 degrees lower. She is scheduled for telescopic extension rod surgery on August the 7th at Children's Hospital Los Angeles with Dr. David Skaggs. I've been reading through several posts and I have such a heavy heart.

When we first found out about Emma's scoliosis she was 3.5, She wore a TLSO for about 4 years. It was slowly holding the curve but the curve did seem to be progressing slightly. At first we were under Dr. Bunnel at Loma Linda. He is a lovely man but every time I would try to find out alternative therapies he didn't seem very supportive. When I brought up the idea of extension rod surgery, he just kept saying we didnt need it at this point. He did seem a little put off that I would consider any other ideas other then his own for treatment.

I tried to do some research and saw a special on Dr. Skaggs on TV so I consulted with him. I knew he was more cutting edge and so I changed. I only saw him for about a year (with only two visits) when he suggested the extension rod surgery and actually suggested this more recent telescopic extension rod surgery. He said that TLSO wasn't giving the correction it should (at least 50% in the brace) so he felt it wasn't doing any good. Since Emma was starting to resist the brace more and more, we (with his ok) said it was fine not to wear the brace since she needed surgery anyway. Well, her curve went from 58 to 67 in six weeks. This is what Dr. Skaggs called the rebound effect...a curve going to where it would go if it hadnt been in the brace in the first place.

Now that I reveiw all these posts I just wonder if I could have done more. Maye the spinecore brace would have been more effective, thus delaying surgery. Maybe vertebral stapling would have done the trick. Maybe I should have made her wear the brace more.

I look at her little back and see the deformity and just wonder if I could have reduced it somehow. I felt so unknowledgeable and although I tried to find out as much as I could I didn't find this forum until too late. I feel as though I let her down.

Are there other altenatives or is it too late?

Joanne

[Carmell]

Hi Joanne,

I'm sending my biggest hugs to you. Being a parent is very hard, especially when there isn't a cut-and-dry/straightforward "fix" for whatever problem your child has. We want to make it all go away, right now. The guilt you are feeling is very normal, but guilt (and regret) are useless emotions. You need to accept that you did everything YOU knew to do, and move forward with your knew knowledge and experiences. You can't change or undo what happened in the past. Move forward and enjoy each day. Emma has lots of strength to share. Use her strength to help you realize you are a good parent - you did the best you could with the information you had.

I think Dr. Skaggs is right - her spine progressed rapidly because it was going to anyway. The brace bought her 4 years of surgery free living! You have to be grateful for that. She could have been much worse off, if you think about it. Gotta find the positives wherever we can.

You could get yet another opinion about Emma's spine issues. I'm not exactly sure what telescoping rods he's talking about (VEPTR? growing rods?). Dr. Peter Newton in San Diego may be a good 3rd opinion. You may even just call his office - he may have the same recommendation as Dr. Skaggs (they seem to think alike).

My Braydon was born with congenital scoliosis. His curve progressed to 75 degrees by age 9 months old. He had anterior/posterior fusion surgery at age 11 months old. At age 6yrs old he had VEPTR implant surgery. He is doing VERY well today at age 12 yrs old. He has no physical restrictions. If you saw him on the street, you would never guess what his little body has been through. You are in good company here on this list. Lots of people with varying experiences of scoliosis for their children. You are not out of options. It is not too late. If you know Emma does not have any vertebral malformations (ie, hemivertebrae, etc.) and her scoliosis is in the thoracic spine, I would contact the Shriners hospital in Philly and ask about Vertebral Stapling. See if she might be a candidate for that, since we know her spine is still flexible (evident when wearing the brace).

Good luck and keep us posted.

[CurvySAT05]

Joanne,
I sent you a PM.

[cherylplinder]

Just a hug! It's tough making all these decisions. Rachel is in Spinecor. Dr. Rivard once told me himself that he didn't recommend the Spinecor for curves as large as your sweeties. He was referring to another physician that put a child with a nearly 60 degree curve in the brace and indicated that was beyond the scope of this brace. He indicated that curve over 40 are rigid. I don't think I misunderstood him. Take that off your list of things to worry about and regret.
Sounds like you are doing a wondeful job to me! Seek another opinion if you need it for peace of mind. That's always a good idea.
Hugs again! You're doing a great job!

[mariaf]

You are not out of options. It is not too late. If you know Emma does not have any vertebral malformations (ie, hemivertebrae, etc.) and her scoliosis is in the thoracic spine, I would contact the Shriners hospital in Philly and ask about Vertebral Stapling. See if she might be a candidate for that, since we know her spine is still flexible (evident when wearing the brace).

Great overall advice as usual, Carmell

With regard to the stapling, while it is GENERALLY used with curves up to about 45 degrees or so, IF the spine is very flexible, Dr. Betz may consider stapling a larger curve such as in this case. (It is also used for double curves and lumbar curves as well.) It can't hurt to get his opinion. He is also up on the latest methods - and does the VEPTR, growing rods, etc.

In fact, the last time we were there I met a little girl that he had done a very localized fusion on and inserted a small (self extending) rod in her lumbar spine (according to her mom). He was doing great 3-4 years post op and the mom said she had no restrictions and was eternally grateful to Dr. Betz for presenting an option that nobody else did.

If interested in pursuing this option, call 1-800-281-4050 and ask for Janet Cerrone. She's the physician's assistant who handles all the stapling cases for Dr. Betz.

Good luck,

[mossters]

I'll let you know!

Once again, you guys are soo great. Thanks for the advice and the numbers I will call those two other docs and assistants you recommended. I thiks thats what I really need to hear...I need to hear from the "experts" that they do all recommend a similar course of action. That would make me feel like I'm headed in the right directions. ONly speaking to the two and then reading all the other options...and not knowing enought to be my own expert...well that's such a disorienting feeling.

I will make those calls today and I will let you all know what they say.

Thanks again.

Joanne

[mariaf]

I sent you a private message too