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newgirl
21st March 2006, 11:55 AM
Hi all,
Didn't get chance to post earlier but Niamh had her cast changed on Thursday. Unfortunately our usual surgeon was on holidays so we are a little bit confused as to what actually is the future plan. One registrar told us that she would be in casts for the forseeable future, the surgeon who actually did the casting felt that clinically Niamh's back is very straight and was considering removing the cast altogether in 10 weeks time. :-o This was before she saw the x ray which was taken standing up after theatre and although we did not get any official measurement, it did not look good to me at all, the curve looks quite pronounced again in comparison to the 2 previous x-rays taken in theatre.
Anyway, we have to go back to OPD in 8 weeks for another x-ray and they will discuss the best way forward again.
This cast appears to me to be much looser than her previous casts and it is not as fitted to her body so it looks much bigger and more awkward than her last 2. I can actually get my hand most of the way up the cast, it ends much lower as well, it actually covers the top of her bottom if you know what I mean.
Was hoping for a better result as things had been going so well, but will just have to keep looking forward.
N

Sealy
21st March 2006, 05:02 PM
Nicola,

If the previous x-rays were taken in theatre, she was probably supine (medical term for laying down face up :-D ) Such x-rays make the curve "look" better since the forces of gravity are eliminated and curves can be off by as much as 15 degrees. Is this her second cast ? Did you get measurements for the stand up x-ray ? The first two casts, Deirdre's curve always corrected to about 20 degrees in theatre and later a standup x-ray would reveal a curve of 35 degrees. It was only after the third cast that the standup x-ray was below 20 degrees. I wouldn't worry too much at this point..... Deirdre's casts were also loose and this was a big plus for us because it meant she didn't have to go for cast changes as often. However, the first three casts were changed every 2 to 3 months - the casts were much tighter - and once the curve was below 20 degrees (stand-up) the casts were not as tight and we could go for 5 - 6 month stretches. :squeeze:


Hope this helps....

newgirl
22nd March 2006, 01:19 PM
Thanks Sealy,
This is our third cast, we don't have any measurements at all, I just know myself that it was not as straight as I would have liked!
Am hoping to get an appointment to speak to our usual surgeon in the next few weeks and will know more then.
N

Thaleias spirit
22nd March 2006, 06:34 PM
Nicola, Have you met with this registrar before?
Even if her back was as straight as you wnated, is it normal procedure to remove casts that soon?

andrea
4th April 2006, 02:25 PM
Hi Nicola
Sorry I haven't been around much recently. How are things now with the cast? Does it still seem too loose? We always have the opposite problem in that the cast always seems so tight and her tummy hole gets smaller and smaller. Still, our cast isn't working, so don't take that to mean Niamh's cast is too loose. Have you an appointment with someone who can give you measurements etc yet?

Sorry again for not being around and for being late with my reply.
Andrea

Sealy
4th April 2006, 10:10 PM
Andrea, it's been ages since we've heard from you. I hope everything is well. You have no idea how I've missed your updates...

newgirl
7th April 2006, 03:21 PM
Hi Andrea,
Good to see you back again, hope all is well with you all.
The cast is still loose and Niamh is periodically complaining of
her back being sore, but I am not sure whether that is an excuse to get a back rub.
The main problem we are having is trying to keep the bottom of the cast clean, it comes down much lower on her hips than any of her previous ones and is turning into a bit of a nightmare. We have an appointment to see consultant next week so will keep you updated.
N

andrea
10th April 2006, 02:03 PM
Hi guys

Things haven't been that great with us, which is why i've been taking a back seat from the site. I've been keeping an eye on everyone else, just not posting much. I'm feeling very negative about the whole casting treatment at the moment, which isn't really what I want newly diagnosed parents to be reading on the site as clearly they work for some, just not us. We're still going forward, but just with no progress and the curve getting worse. We're at Stanmore every 7/8 weeks, which is exhausting, emotionally and physically, and I don't know how much longer that will continue before something goes bang (me probably).

I'm still around and hoping it works for everyone else. I just wish we weren't always the exception to all the good news.

Keep us up to date with your consultant appt Nicola - fingers crossed for you!

Andrea

mark
10th April 2006, 02:49 PM
Sorry to read things aren't going so well Andrea i can't begin to imagine how you are feeling i just hope that things start to get better in the near future. We all need downtime from time to time, try not to worry about things here you need to spend all your energy on your family.

Take care

mark

tonibunny
10th April 2006, 09:55 PM
Andrea, we must meet up and go for a drink and a chat, if you're up for it. I'm in Shropshire having treatment myself for a couple of weeks but as soon as I am back in London hopefully we can sort something out.

I know how you feel about wanting to keep quiet when things aren't going so well.....I have been doing the same, and tend to write about my problems on my Livejournal instead. SSO is a support site though so we shouldnt really be afraid to write when we ourselves need support! Feel free to PM me with anything if you'd prefer not to write things out publically.

Please take care *hugs*

Toni xx

Sealy
10th April 2006, 10:16 PM
Andrea,

I totally agree with Toni, this is a support group and we take the good with the bad. Being able to "talk" about things is so important, it allows us to step back and look at the situation more clearly and objectively. Support groups have helped me tremendously and you all know what a blabber mouth I am :-P

newgirl
14th April 2006, 09:25 PM
Hi all,
First of all Andrea, sorry to hear that all is not going so well at the moment, I really hope that the agressive casting gives some better results. How is Erin coping with the more frequent trips to the hospital? I know it is very difficult on you. :squeeze:
We are here for you and whilst I understand your concerns about worrying any new mums, I think that most people understand that casting is not a success story for every child and that everyone's experience is slightly different.
I know I have not been posting much lately either but I do check in to see the news every few days.
Well back to our news, we saw the consultant on Monday and he ordered the cast to be removed and re-applied on Thursday (yesterday).
Niamh found it very strange to be out of the cast, and was not really happy without it at all, although we did enjoy lots of cuddles for the couple of days.
She got a new cast yesterday (bright pink) and I am much happier with the fit, most importantly it does not come down so low so nappy changing is not such a trial and should be easier to keep clean.
They took an x-ray before theatre standing out of the cast, but I don't have any measurements. It is very difficult to say whether there has been an improvement in the actual curve but I do feel that her ribs are more symetrical so that is positive. I am hoping to get the comparitive measurements in the next few weeks.
They took an in cast x-ray in theatre and this x-ray looks great, but I am not getting too excited this time!
She adjusted back to having the cast no problem again, thankfully she is still at a very compliant age :D
N

sins
15th April 2006, 11:45 AM
Nicola,
you have a fantastic consultant!
Glad to hear all is going well.Any news on a retiremtnt date for him?
Sins

Abbi
17th April 2006, 01:24 AM
Hi Andrea! I am sorry to hear things are not going too well for you at the moment! :squeeze:
Thinking of and praying for you

Abbi xx

newgirl
20th April 2006, 10:31 AM
Originally posted by sins@Apr 15 2006, 09:45 AM

you have a fantastic consultant!
Glad to hear all is going well.Any news on a retiremtnt date for him?
Sins
Sins
he is retiring in the Summer, August I think. He is referring Niamh to Damian Mc Cormack when he retires.
Nicola