Re: update and RVAD question

April 9, 2011

,How old was when you started the casting journey?I'm trying to decided if I should continue this journey if Shane's numbers don't go down in July.ThanksSuzySent from my iPhoneOn Apr 9, 2011, at 12:38 AM, "val_and_teresa" <vanddcharron@...> wrote:

Well, I've been waiting to get Dr. H's measurements to update you about . In mid-February, she had an x-ray taken here in Michigan, per Dr. H's (Chicago Shriners) suggestion. The radiologist here measured her Cobb at 6-8 degrees. I was ECSTATIC to hear this! She had been out of her brace for 7 days prior to the x-ray (per Dr. H's request).

Shortly after, we went to a new, local pediatric ortho (for another perspective/opinion), who QUICKLY measured this x-ray and said it looked to him to be around 12 degrees. He said she looks "good" and should just stay in her brace until he sees her again in June.

That same day, at Chicago Shriners called and said that Dr. H received the x-ray and said "the curve looks very small, she's no longer a candidate for casting". So I asked her if I could get the exact numbers that he had measured. And then I waited, and left messages, and waited, and called, and waited, and FINALLY got Dr. H's measurements today. His measurement of her last x-ray is "about" Cobb 12/RVAD 10. He said it wasn't the easiest to measure since it wasn't from a film, he just printed it off onto paper and did it. (Uh, ok??? Not super impressed with that.)

At this point, we are hoping and waiting patiently STILL for Dr. M from here in Michigan to come back. He is the one who did 's 3 casts and he is the MOST awesome doctor I've ever known. His little webpage says that he may know when/where he'll be back "by April or so", so I'm eagerly waiting and praying we will see him again soon!

Until then, I have a question. I understand the "under 10 degrees" as a goal that some doctors aim for moving from casts to bracing. What about the RVAD, though? I was bummed to hear that 's RVAD is still measuring at 10 degrees (although I understand it wasn't measured the best). Before her first cast, she was around RVAD 25 degrees, so it is definitely progress. But doesn't that indicate significant rotation? I was really hoping her RVAD would be close to 0, as I was told that in-cast #3 (her last, back in June 2010) measured Cobb 10 with "almost no rotation" (although those measurements were laying down in the OR right after casting).

Any thoughts??? I guess I was hoping Dr. H's measurements would be closer to the radiologist's, and I wasn't prepared to hear her RVAD is still significant. Or maybe that's normal for a curve around 10-12 degrees???

Thanks!

~

Mom to , age 4.5, 3 casts in Michigan, Cobb 36 precast ~ Cobb 10 in cast #3 ~ holding at Cobb "10-ish" in brace (since August 2010)

April 9, 2011

Hi Val,

12 Cobb/10 RVAD is excellent. I would just confirm that that is exactly

what lil T's #'s are. If her RVAD is really at 10 then there is little to

worry about. Congrats Val!! Its been a challenging road for you guys

with a lot of unanswered questions. If these #'s are solid, then lil T.

is doing GREAT!

HRH

> Well, I've been waiting to get Dr. H's measurements to update you about

> . In mid-February, she had an x-ray taken here in Michigan, per Dr.

> H's (Chicago Shriners) suggestion. The radiologist here measured her Cobb

> at 6-8 degrees. I was ECSTATIC to hear this! She had been out of her brace

> for 7 days prior to the x-ray (per Dr. H's request).

>

> Shortly after, we went to a new, local pediatric ortho (for another

> perspective/opinion), who QUICKLY measured this x-ray and said it looked

> to him to be around 12 degrees. He said she looks " good " and should just

> stay in her brace until he sees her again in June.

>

> That same day, at Chicago Shriners called and said that Dr. H

> received the x-ray and said " the curve looks very small, she's no longer a

> candidate for casting " . So I asked her if I could get the exact numbers

> that he had measured. And then I waited, and left messages, and waited,

> and called, and waited, and FINALLY got Dr. H's measurements today. His

> measurement of her last x-ray is " about " Cobb 12/RVAD 10. He said it

> wasn't the easiest to measure since it wasn't from a film, he just printed

> it off onto paper and did it. (Uh, ok??? Not super impressed with that.)

>

> At this point, we are hoping and waiting patiently STILL for Dr. M from

> here in Michigan to come back. He is the one who did 's 3 casts and

> he is the MOST awesome doctor I've ever known. His little webpage says

> that he may know when/where he'll be back " by April or so " , so I'm eagerly

> waiting and praying we will see him again soon!

>

> Until then, I have a question. I understand the " under 10 degrees " as a

> goal that some doctors aim for moving from casts to bracing. What about

> the RVAD, though? I was bummed to hear that 's RVAD is still

> measuring at 10 degrees (although I understand it wasn't measured the

> best). Before her first cast, she was around RVAD 25 degrees, so it is

> definitely progress. But doesn't that indicate significant rotation? I was

> really hoping her RVAD would be close to 0, as I was told that in-cast #3

> (her last, back in June 2010) measured Cobb 10 with " almost no rotation "

> (although those measurements were laying down in the OR right after

> casting).

>

> Any thoughts??? I guess I was hoping Dr. H's measurements would be closer

> to the radiologist's, and I wasn't prepared to hear her RVAD is still

> significant. Or maybe that's normal for a curve around 10-12 degrees???

>

> Thanks!

>

> ~

> Mom to , age 4.5, 3 casts in Michigan, Cobb 36 precast ~ Cobb 10 in

> cast #3 ~ holding at Cobb " 10-ish " in brace (since August 2010)

>

April 9, 2011