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25th July 2007, 01:17 PM
This is the first time i have been here and left a message. My daughter Megan had Neuroblastoma when she was a baby and as a result has been left paraplgic with scoliosis due to the tumour. Megan is treated at GOSH and is seen by Mr Tucker/Nordeen. She is cancer free now and very happy. Originally her scoliosis measured 45 degrees and the spinal team gave her a boston brace, unfortunately she didnt tollerate the brace because of her lower sensory loss. Her scoliosis after 6 months measured 65-70 degrees. Mr Nordeen then said it was time for spinal growth rods. She had the rods put in October 2006 when she was 3 years old. She recovered fairly well and had her first lengthening in May of this year and they managed to gain another 2cms. She will be having these rods lengthened every 6 months so will go in again before xmas. Because of her paraplegia it makes it very difficult to move her etc. She is a cognitavely normal little girl but very stubborn. We have been told that eventually the rods will snap and she will need more surgery to add more rods. Does anyone have any experience simialar to ours but maybe slightly further on in treatment? Feeling a bit crappy about everything and feeling fairly alone right now. Look forward to meeting some new friends.
25th July 2007, 03:48 PM
:hug: Im with you feeling very crap and unsure about whats best for my son - had never heard of scoliosis before he was diagnosed. But im hoping this site will help me find the strength to do the best for my son. i Ive just joined 2day. Hope all goes well for ur daughter.
25th July 2007, 04:12 PM
COURTNEY WAS DUE TO HAVE GROWTH ROD SURGERY IN MARCH BUT LUCKILY IT WAS CANCELLED AND I HAD HER CARE TRANSFERED TO MR TUCKER WHO SAID SHE DIDNT NEED GROWTH ROD SURGERY. OF ALL THE DOCTORS AND CONSALTANTS IVE COME ACROSS MR TUCKER IS THE BEST WEVE HAS SO FAR AND IM VERY HAPPY.YOUR IN VERY GOOD HANDS.ALLTHOUGH I CANT COMMENT PERSONALLY THERE ARE MANY OTHERS HERE WHO WILL BE ABLE TO HELP YOU.IVE ONLY BEEN A MEMBER FOR A SHORT TIME AND THEYVE HELPED ME A LOT AND I WILL ALLWAYS BE GRATEFUL
X X SHARON X X
25th July 2007, 10:40 PM
Hi Beth and welcome to SSO
You have really been through the mill.
I am afraid I don't have any experience of growth rods, we are been casted at the moment.
Just wanted to wish you well
26th July 2007, 07:20 AM
I've been reading about Megan for a while on your site (we have some articles in our local paper about samantha hughes so check how she is occasionally - and the other kids linked from her site!) so I know how much you've been through!
My daughter has a cervical curve so we aren't looking at growth rods so I can't help with that bit. I know where you are coming from about the being stubborn bit. Cerys has to do everything herself, no help from mum even if it takes twice as long :nut:
However, I try to think that this will help in the future as she'll have so much more to deal with than my other 2 children. If she's determined to get on with it, it will only aid her!
I'm sorry to hear that you are feeling down at the minute but I think we can all relate to it. Sometimes I seem to be getting on with everything fine and then it all becomes too much when you're least expecting it!!
Have you managed to get Megan's school sorted as I remember you were having trouble?
I'm sure there will be someone along soon who knows a bit more than me but welcome to the site. It's been a godsend for me!
26th July 2007, 03:17 PM
Hi Beth and welcome to SSo. I'm really sorry to hear about the tough time you've been through. While some of us will be going along the growth rods route sometime in the future, i think i'm right in saying you are the first that has actually been through the operation. I hope we'll be able to help you through the difficult times and we can all relate to having a child that's a bit different. There's always a shoulder to cry or lean on here and someone with an answer to a question.
26th July 2007, 06:54 PM
Welcome to SSO. I'm afraid I am no help in the surgery department but I hold good thoughts for all the newcomers to SSO. Also I advise everyone to start a notebook of questions etc. Write them down as they come to you and take it with to the doctors' consultations. Good Luck and welcome again!
27th July 2007, 08:36 AM
You are further down the road than me. My daughter is 7 and having her first growth rod surgery at GOSH with Mr Noordeen in September. I'm sorry you are feeling so alone, logging on to this website has given me a lot of support and I now realise how many people are going through the same things as me. Giving Megan these surgeries is giving her a better future, I'm sure she will thank you when she is older.
31st July 2007, 05:45 PM
Hi, thanks to all the replies. Already i feel better knowing i have someone to talk to. Megan is doing great and we see Mr Nordeen on September 10th to discuss the next surgery in December. Becaus eof Megans paraplegia we dont have the worry of bracing. Mr Tucker feels that as she isnt running around the risks of damage are minimal.
I forgot to mention Megan is also seen by dr Gall at Stanmore for the spinal injuries unit. Hopefully as she gets older we can get alot of input from them with regards to Megan coping with her disability. The only reason we opt for GOSH for spinal surgery is it is familiar surrounding for Megan and the oncology staff always come and say hello when were in. Also alot of starts make her feel special at xmas when they visit Sky ward, lol.
Anyway thanks for all the input, i look forward to making some new friends here.
31st July 2007, 10:35 PM
Have you heard of vepter? Its very simlar to growing rods were they legnthen them every 4 yo 6 months.that a pretty severe curv.My son was born with a 55 degree then progressed to 64 in just a couple of months he had vepter implants and his curv is 59 now.If possible were you live I would cheek into that.
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