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snowy24040
24th January 2007, 10:42 PM
hi im sharon courtneys mum took courtney to gp at 9 months old as a lump had appeared on her back finally got appointment for mri scan 13 months later scan showed a cysts growing in her spine.dr chandler from kings removed this last summer went to see scoliosis consultant yesturday had x rays done which showed dispite cyst being removed curve is getting worse.in a matter of seconds he was telling me courtney needs surgery asap .shes to have extending rods put in and a plaster cast to protect the spine the rods will be pulled every six months to straighten the spine.i walked out the room without the chance to ask any questions.how long will she be in hospital for.will she be able to walk will she need a wheelchair etc etc i could go on for hours .i have no idea what to expect .any help with information would be much appreciated.


thank you courtneys mum

GillyG
24th January 2007, 11:07 PM
Hey there, welcome to the site. :wave:

Whilst I can't actually help with any of your questions myself, I know that there are members here that have either had surgery/braces/casts themselves as a youngster, or have children of their own going through the various stages at the moment.

Once they come on-line, I'm sure you'll get the answers you need, so, ask away :-)

Gilly x

titch
25th January 2007, 05:34 AM
Hiya,

I'm so sorry for what has brought you here, but am really glad you found us :-)

The surgery the consultant is describing is for something called growth rods - because they are expandable, they mean that the curve can keep being corrected for the growth of the child, without need until they are much older for fusion, so it gives their spine a chance to grow nice and long, and more importantly allows their lungs to grow well, whereas fusion stops all growth in the area that is fused.

There are several parents here with children either in casts currently, or who have been until recently and also members who have undergone casting as children. While it's no fun, I think all will assure you that they've got through it just fine :-)

It's recently been posted on the board here that VEPTR, which is an alternative to traditional growth rods (also implanted surgically and extended regularly), is now being performed in the UK in Oxford, so if you feel that a second opinion is needed perhaps it would be possible to get one from the consultant behind that - VEPTR isn't suitable for all children, just as growth rods are not, so I don't know if Courtney would be a candidate, it's just a thought if you do feel that you'd need to see someone else as well for peace of mind.

Regardless of that, I'd recommend that you get some questions together and write to the consultant with them, as hopefully that will give you some of the information you need.

Anyway, hopefully one of the other mums will be along soon and able to give you their perspective, but meanwhile, :welcome2: We'll do our best to help you and Courtney along your journey with this :-)

titch

Amazed Jean
25th January 2007, 07:28 AM
Hello and welcome to the site. There are Folks here thatcan help you out more directly than I can. But wanted to welcome you anyway and suggest you start a notebook of questions and it's a good idea to write down what the answers from your doctor. (We always forget half what they tell us at our doctor's office unless we write it down.)

andrea
25th January 2007, 11:40 AM
Hello and welcome to the site. Firstly, where are you being treated? I'm surprised that you waited so long for an MRI for such a small person. You don't say how large courtney's curve is now or whether there is anything causing the curve, but she may be a candidate for casting without the growth rods. My daughter is now 4 and has been in casts from the age of 20 months. Her curve has been held at less than 62 degrees (it keeps changing, so I can't be more specific). While growth rods will be an option for us, the longer you can hold off I think generally the better.

In answer to your questions (I'm no expert, but frequent trips to hospital help!), the initial operation is quite a big one as you would expect. They will attach two rods to the vertebrae either side of the curve (so not along the entire spine) that will pull the curve straight. I imagine this would be followed by a couple of days in ICU (or similar) before recovery on the main ward. The children i've met in hospital with rods haven't needed wheelchairs. Some activities are restricted i'm sure, but walking should be fine. Subsequent surgeries to extend the rods won't need intensive care and recovery is much quicker.

It's up to you, but unless there's a reason for her not to be in standard plaster casts (which are actually fibreglass, not plaster), and your consultant won't cast her, I would seek a second opinion.

When are you next seeing your consultant? Let us know if you have any more questions or we can help at all.

Andrea
x

snowy24040
25th January 2007, 12:56 PM
courtney is 3years 8 months shes being seen by dr lucas from guys and st thomas hospital she had a cyst removed which has caused the scoliosis they were hoping once the cyst was gone her back would start to straighten.on monday the xray showed curve now 68.the doctor had a stinking cold and he really didnt explain anything except the rods and cast .the next time i see him will be at guys for the operation i could get a call anyday to go in.

mark
25th January 2007, 09:32 PM
Hi welcome to SSO

I can only reiterate what Amazed said about taking notes and writing down questions as you go. Drs surgeries can be daunting places especially for little ones.

I hope you find a way to manage your daughters curves that causes her the least amount of stress. I hope you can find some of the answers to your questions on the site we are helpful friendly bunch who just want to support one another through the good and the bad times.

mark