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snowy24040
20th February 2007, 08:54 PM
courtneys surgeons secretary rang today ,i thought this is it finally going to be given a date.but no courtney is slowly making it to the top of his list .been told she wont have a pre op opointment so the next time i see the surgeon it will be in hospital :( ive so many things i wanted to ask but now wont get the chance will have to play it by ear.im just gonna pack a bag wait for the appointment then off we go .im going to write to guys for some info cause i done even no how long we should expect to be in.has anyone stayed in a ronald mcdonald house? it all getting a bit much really hubby thinks im making my self ill with all the worry i think about it 24/7 havent had a decent nights sleep for 2 weeks.we going to euro disney next friday for a long weekend it was soposed to be courtneys birthday treat in may but obviously that out of the question now .any way ive wittled on long enough see you soon

sharon

Rachie
20th February 2007, 09:18 PM
Is this for growth rod surgery? I don't understand why there wouldn't be a pre-assessment day as this is to have a final check before surgery and to get your daughter familiar with the environment of the hospital. You can't go into this without having all your concerns answered. We found the lack of information and admin problems at the Evelina Children's Hospital (St Thomas') incredibly unsettling, and this is the same NHS Trust as Guys. In the end we asked our surgeon to refer us for a second opinion at Great Ormond Street Hospital. We had the appointment last Friday and were so much happier with the surgeon and the hospital, so we have transfered our daughter's care to them. Now I am reassured that what we are doing is the best for our daughter and you need to have that reassurance to. I would suggest that you either push for a pre-assessment appointment or for a second opinion.

Let us know how you get on.

Rachie x

snowy24040
20th February 2007, 09:24 PM
courtney is under dr lucas at guys he seemed really nice to begin with he comes to ashford to see courtney so we dont have to keep travelling to london .he allways seems in such a hurry .last time he had a cold this is when he told us her curve was getting worse and needs surgery asap .in nhs terms this could be anything ?i have thought about a second opinion but im worried it will cause a delay in her treatment its been such a fight to get this far.shes having growth rod surgery then having a cast on for six months thats all ive been told


x sharon x

Rachie
20th February 2007, 09:30 PM
How bad is the curve? If surgery was urgent they would not add her to the waiting list. Maddy's curve is 76 degrees and she is being prioritised for surgery. We got the second opinion appointment within 6 weeks and that was on the NHS. If you have the money (around 200) you can always consult someone privately - just make sure you take all your x-rays with you.

Rachie x

snowy24040
20th February 2007, 09:42 PM
courtneys curve is 68 at the moment she not on a list as such it will be a case of a phone call and it could be the next day so we waiting for a cancelation and hope no one else needs the appointment more than her.apparently the reason they are doing all the tests when she is admitted is so they no exactly what they are doing she having mri then taken straight to theatre.she had a cyst removed from her spine last year and the same thing happened at kings college.

snowy24040
20th February 2007, 09:46 PM
sorry feel rude how old is your daughter .are you local to london .

Rachie
20th February 2007, 09:53 PM
She is 6 years old. We are in Sevenoaks so it is about 30 minutes on the train.

Rachie
21st February 2007, 10:44 AM
Have been thinking about your situation. You haven't said how old your daughter is, this is important when considering the urgency of the situation because she may be very close to, or in, a growth spurt and the surgeon would want to operate before any further progression. I remember when we had loads of questions we asked the consultant's secretary if she could arrange for us to speak to him, and he did telephone us twice. So you could do this, but make sure you write down all your questions and have it ready by the phone so that when he calls you remember to ask everything. Hope this helps.

Rachie x

andrea
21st February 2007, 12:23 PM
Hi Sharon

I agree with Rachie in that you can't go into such a big operation for your daughter knowing so little about it and having so many questions. I would ring the secretary again, get her on side, and run through all the things you want more information on. If I remember correctly, Courtney is about 3yrs 9 mths. This means that she is probably growing still quite quickly and perhaps they are concerned for progression, hence the urgency of it all. You really need to get in touch with them and find out exactly what they are thinking.

Sorry not to be able to help more.
Andrea
x

sarmstrongs
15th March 2007, 12:20 AM
Every one is right you do need a pre assesment it is so very important. Iknow all hospitals do thing differently but for your own peace of mind cal them and try to arrange a appointment so discuss this with them.
iTS NOT GOOD FOR YOU TO BE ON TENDER HOOKS WHEN YOU NEED TO BE STRONG THEY SHOULDNT PUT YOU IN THIS SITUATION.
ALL MY THOUGHTS ARE WITH YOU