Carmell

[Guest guest]

Carmell,

Thanks for your knowledge on the titanium rib procedure. Braydon is lucky.

"I believe that there is not a single RIGHT recommendation for all young children with scoliosis."

*I agree that each of these procedures have their place in medicine.....But..

*I must point out that infants/young children with non structural scoliosis, if caught and treated early can be corrected permanently by a series of POP jackets. It would make sense that this should be tried first, in order to prevent surgery all together.

Carmell, I'm not sure if I have ever sent you a video of what we are talking about here...(?) Its been years since we have had a conversation. If not, please let me send one to you (free). Once viewed, you can send back so I can send it to other interested families.

Sincerely,

HRH

[Guest guest]

I need your help!!!!! I need info on the titanium rib. My son was

getting casted but it isn't working like they had hoped because he

is not gaining and is very small. Can you give me some in sight. I

just got off the phone with heather and she told me to get a hold of

you. I am going to email you privately also so I can give you my

phone number so you can call me so I know who I need to get a hold

of at Primary to get my son seen asap.

LOL

Amy and Jaeden

[Guest guest]

Hi Carmell,

Actually, the latest xray was taken in January in Boston and we

directly went to see Dr. Emans. He felt that the lungs looked much

better than her last x ray. She was scheduled for VEPTR in last

July, but we had noticed a big improvement and so we cancelled. Dr.

Emans agreed with the idea and thinks her overall balance and curve

have improved. So, we figure that we can wait some more. As long

as she is holding at this level I feel comfortable waiting for the

surgery. Dr. Emans said that he didn't think she needed the surgery

right now. We always take the risk that her compensatory curve will

get worse, which we understand. We will for surely take action if

her curve gets to 50. Her shoulder has strangely shaped bones. We

have an appt with an upper extremity person in July. She has an MRI

in July to check her syrinx, and we hope that they can use it to

measure the scoli curve too. We really like Dr. Emans.

It is kind of stressful to go all the way to Boston for appts

though.

for some reason, I can't open any attachments. Can I see the pics

on your site?

Thanks,

> Hi ,

>

> I've been thinking about you and Gabi lately. I'm so

> glad you wrote and posted pics. Gabi is adorable -

> still... LOL

>

> Gabi's back looks very much like Braydon's did before

> his VEPTR implants. I'm attaching a photo of

> Braydon's back at age 3. You can see the left side

> rib hump is quite pronounced, and the scapula's are

> very assymmetric - the left side is high and sitting

> on top of the ribs, rather tha parallel to them. The

> right scapula is lower, coinciding with the concave

> part of the spine. I'm also attaching a pic of

> Braydon I took last week, after his 7th VEPTR

> expansion surgery. The scapulas are almost even and

> the rotation of the spine has been almost completely

> corrected. You can tell this because the rib hump is

> not as prominent.

>

> IMHO, I'd write Dr. Emans and send him the pics to see

> what he says. I know surgery is such a HUGE step,

> but, in seeing her latest xrays, I see that her right

> lung is smaller than the left. Will that continue? I

> don't know. I think you need to have Dr. Emans check

> it out, for peace of mind.

>

> Let me know what you think and what you decide to do.

>

> Carmell

>

>

>

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