Appointment Update

[newgirl]

Hi,
We had our first appointment with our new surgeon today and whilst it was very positive I am in 2 minds how I feel about the whole thing.
We had an x-ray prior to seeing the surgeon, her spine looks great really straight, pity about the 5 cent coin which appears to be lodged down her cast :D The poor radiographer thought she may have swallowed it, but I think we can safely assume that she dropped it down the front of her cast :hammer:

When we met the consultant he looked at a lot of her previous films and of course the latest one and basically he feels that
because the RVAD angle is the same on both sides of her spine and her spine is very straight in the cast and that her curve has not progressed at all in the cast that we may be over treating her in a cast.
He wants to take her out of the cast and monitor what happens
:shock:
I have to admit it was not what I wanted to hear, I feel very safe with her being in cast and knowing that her spine is safe in there and it is a big step for me to agree to this. Sealy and Andrea you know what I am talking about :woe:

However, I do see the logic and reasoning behind his plan.
So the plan is to take the cast off and put her in a Boston Brace. She had an appointment in 3 weeks to have her cast removed and to be moulded for the brace.
She will be out of the cast until the brace is ready :shock: and during that time we have to get an x-ray to see her true curve out of cast/brace. Once her brace is fitted we have to go back and see him and have an x-ray taken with her brace removed over night.
Based on how these x-rays look he will make a further decision as to whether to continue with brace, go back to casts or worst case scenario telescopic rods.
I really hope that this does not backfire on us :woe:
Will keep you updated
Nicola

[andrea]

Wow, that is a bold move. However, if the consultant is happy to do so and is confident it won't put her progress back, then there is reason for optimism. I guess I've never been in that situation as Erin's curve has never been "straight" either in or out of the cast, but I can understand your feelings on it. I won't let Erin go back into a brace as it completely destroyed (in my opinion) the progress that we had made in the cast. As long as you're monitored and address any deterioration quickly, then there's probably little risk in doing what they suggest.

I can't imagine you would jump from being out of a cast to rods, so the worst thing that would happen is that you go back into a cast. Once Niamh is used to being without a cast, this may be difficult enough in itself, but I think you're quite a way from thinking about growth rods.

I'd be happy that you've come this far and the consultant thinks it's worth a go. I'd be over the moon to be rid of the cast - give Niamh a year or so and I'm sure she'd think the same.

Hang in there, i'm sure all will be fine. Your fears are understandable, but that's our job as scoli-mums - to worry, worry and more worry. Fingers crossed for the best news.

:squeeze:
Andrea xx

[newgirl]

Hi Andrea,
Great to see you around, how are things with you and Erin?

Yes it is a bold move but he feels he needs to see for himself how her spine behaves and that all indicators suggest that her curve is "benign" which was great to hear.
You are right, we won't be going from brace to rods, should have made myself clearer. If she deteriorates out of cast we will be going back into a cast but the worry is that the cast is merely splinting her straight and if she were to continue being straight in cast but deteriorating out of it then rods would be an option.

Big hugs to you and Erin,
Nicola

[Sealy]

Nicola,

We had the very same experience when our files got transferred to the new ortho after Dr. Hedden left us *sobs pathetically* I think what happens is the new doc taking over feels he has to rev things up, change things so to speak, perhaps feeling he has to assert his "brilliance" on the situation and discards whatever treatment was being followed by the previous ortho. Needless to say we transferred to Dr. Rivard and have not looked back since !

How long has Niamh been in casts and how much has she grown ? If you feel uncomfortable taking her out of the casts at this point in time, I would just say so. Better safe than sorry, right ?

[newgirl]

Hi Sealy,
I thought of you straight away when he mentioned taking the cast off!!

In some ways yes I do think there is an element of "I am going to treat this my way " but to be fair to him he had some very logical arguments :P

He has to ensure that treating her with casts is not an overtreatment as having an GA every 10-12 weeks does carry an element of risk as well.

Niamh has been in cast only for 12 months, with 6 months of braceing prior to that. In the last 12 months she has grown between 8 and 9 cms, (this does not include couple of cms she gained going into the cast!) so that is significant growth in 12 months. Keep having to update her wardrobe the little minx!!

I am a bit calmer this evening, and yes (gulp) I am going to go with the plan, but I will ensure that it is well monitored. We are very lucky in that we live 10 mins walk from the hospital so popping in for additional x-rays/appointments is no big deal for us. If the curve flops back we will be back in a cast in a flash. :glee:

How is Deirdre?
N

[Sealy]

Nicola,

As long as you feel comfortable with it, then that's the important thing. If he's willing to cast Niamh if things sour that's a major plus. Our local ortho wasn't open to that idea and perhaps would have watched Deirdre's curve progress and then offered some kind of surgical alternative.

Deirdre is doing really well, she started grade 1 a couple of weeks ago and had her first spelling test this morning. Medically she's doing great! We have an appointment with Dr. Rivard in October and as far as I can tell her back looks AMAZING !!! She's taking swimming and piano with her brother. :D