any advice/thoughts from Shriners/Rochester parents please?

October 1, 2009

Hi

I've been pretty quiet on the forum recently as after Abi's last cast I spoke to

one of her doctors found the conversation really scary.

As usual it's a long story with Abi's first cast back in March when she was at

55 degs with a double curve and an RVAD of 20. At that time she was 20 months

and got about 20 degs of correction however it wasn't a Mehta style cast.

Amazingly there are no Mehta trained doctors here in the UK and Shriners

wouldn't accept us as an overseas patient and we couldn't afford Rochester(few

people have medical insurance here in the UK). So it seems likely that her

rotation wasn't being dealt with at that time.

We researched like crazy and with lots of help from you here at CAST, when she

was 23 months, we had Abi cast on a Cotrell table in what we belive to be a

Mehta style cast (mushroom shaped at front and cut out at back for derotation).

This went really well and brought Abi down to around 7 to 10 degs. The only

thing is that her team don't really belive this will help her they think that it

is a holding process until she has surgery - hence the asking for advice from

Shriners/Rochester families.

Abi was then cast again at the end of August and didn't get any correction in

her cobb angle or her rotation. The RVAD wasn't worth remeasuring as her main

curve is her lumber one aned this has plenty of rotation in (doctor's words).

It was at this point that I took the call from one of her doctors and he told me

that Abi's body won't take any more correction. Even though her cast is only off

for an hour between changes her curve returns quite rapidly in this time. Abi is

now 2 yrs and 3 months and the doctor I spoke with says that she won't tolerate

casting beyond the age of 3. Can I ask what your thoughts and experiences are

around this please?

The doctor also says that a brace won't hold an agressive curve like Abi's is as

it won't be strong enough. Again any thought on this would be appreciated.

Basically he says we are heading for growth rods at age 4 and that scares me

hugely. Does anyone know about the complication rate associated with growth

rods please? Is VEPTR any better or are there other alternatives do you know?

Sorry to ask so much in one go but we know we are going to receive another call

from the team tomorrow but this time a different doctor and this is our chance

to ask questions except we are not informed enough. Any help, comments,

thoughts about any of the above would be appreciated hugely.

I feel bad to be asking this when Liv is out there trying to get over a huge

procedure and others are being cast but I now the doctor is phoning me I can't

really hide from the problem any longer.

Sue

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