19th October 2006, 10:21 AM
Lauren had her pre op assessment yesturday all went very well and she seems to be handling well.
we had a visit from the surgeon who has now told us that the halo traction and anteirir fusion is no longer taking place but still possible. They plan to take trangular shapes from the lower region in 3 sections in the hope of pulling the spine up but depending on how things look when they go in will determin what op takes place which has left me in limbo they cant tell us nothing straight or possitive its now another meeting friday which we never get to hear the results of. i understand that somethings can change at last min while she is in surgery but she has waited so long to then know and prepare herself for 2 ops now could be more cpould be less could be this could be that. every one we saw on the ward were also confusssed as to what op as they were told the same as us i actually asked if he had the right notes.
also can anyone advice on clothing we were told shorts and large t shirts that can be slipped on and to take seams apart and sew velcro on?
19th October 2006, 12:15 PM
I know how scary it can be when everything goes up in the air at the last moment. I guess the only thing to draw from it is that it is actually a good thing in a way - rather than having decided on a course and then making the best of it, they will be prepared with a variety of plans and be able to do what seems best.
Things often do change once the patient is under anaesthetic - I have heard it said that with some curves you just don't completely know how they're going to behave until then, when all the muscles relax and you may find that it's easier to correct than expected, because it's not as rigid as anticipated.
Were there xrays done at the pre-op, before the new suggestions on how to do it? Sometimes that can change things as well, if a curve has become more, or less rigid.
The triangular sections sound like osteotomies. They're actually a very good way of getting correction, and heal extremely well. I've had a type of osteotomy done myself, to correct a kyphosis at the back of my waist - in my case I had one extremely large osteotomy done, but it corrected the curve extremely well. They also went into the surgery expecting to fuse me to L5, and perhaps to the sacrum, but actually I got away with only L4 because they were able to balance the spine without going so far.
Did they say you wouldn't be able to ring and ask for details? I was also subject to the big Friday discussion, but I was told that if I wanted to I could ring in and ask to be told what conclusions they'd reached. I actually didn't in the end, because I suspected things could still change a little once I was in surgery. Mind you, I was a *very* paranoid patient, and they were making a lot of effort to keep me as calm as they could.
I'm really sorry you've had such a confusing and stressful appointment. I really, honestly think that there are times when the surgeons just don't understand just how upsetting it is to be on the receiving end - I guess they're living in their heads, knowing that they're doing their best for us and sort of assuming that if we trust them enough to let them do the surgery, we should just go along with whatever they say because of that - I think they can have real difficulty understanding it is not always as simple as that.
Clothes-wise, personally I'd suggest having some button up shirts available as well, in case they're easier. Anything which will slip on easily and with minimum fuss has to be a good idea, but if you can have a bit of a variety I'd say that's a good thing as it will allow you to work out what works best. With my first surgery, I found shirts easiest, and wore trousers a lot because although they were difficult to get on initially, they then were comfy. With the second, I wore loose, elasticated skirts, didn't go near trousers at all, but was much better with pulling on jumpers and the like than I was with the first surgery.
:squeeze: I'm sorry I've not really got any answers for you, and I'm really sorry this has added so much stress on top of something you'd basically got yourself prepared for.
25th October 2006, 12:37 PM
Thankyou your response has helped a lot in answer to your question changes were decided before xrays were done which i would have understood if she had had her xrays first but they were done at the end of the day.
Ido understand that they cant determin a lot of things untill she is under but they could be clearer on what they are doing my husband asked what he would do in the situation we were in and he wouldnt answer.
at the moment she is running about playing and not letting anything get in her way. It makes you wonder why do things now and i agree she has to be fit and well to go through this. just as the days tick by it gets harder and harder. I know this is normal i went through the same feelings the first time round.
I hold on to the fact shes strong got loads of determination although she is very scared worried nether the less.
on a brighter note shes cosating a small fortune on a portable dvd player to take in dvds dosnt want any that she has seen before she is at the moment designing her own t shirts with witty sayings on them with fabric pens which i have cut down the back and added velcro on to join together so less strain to get on but you buy for one you have got to buy for the 3 others so my kitchen looks like a fashion outlet which is fun for them all to do the other 3 are taking it all in there stride they have always known that lauren has scoliosis and have to go to hospital a lot we have had the why does she have to have it and we dont its not fair which was understandable when they were younger but now we try to get for all if shes at the hospital for tests and they are not with us then its treats for them too.
They are staying with my mum for the first 3 days then go back to school and then back at my mums its trying to keep everything to troutine cos you cant be in 3 places at the same time my mum lives close to the hospital so itas sleeping bag adventure in the living room for us all as we live in grantham and grandads taking them out for the day of the op we have a rota system on who sleeps at the hospital between 4 adults so lauren is never on her own and doing days in 3 hour shifts so i can go spend time with the others and get sleep etc during laurens time in its the twins 10th birthday which we can have a cake at the hospital if lauren is well enough so they feel involved and have fun too.
All go go go.
wHEN SHE COMES HOME WE HAVE GOT A BED SETTEE for her to sleep on till she is strong enough to go upstairs to bed which she is quite looking forward to. A lso we have brought a commode chair like a old fashioned bedroom wicker chair which we have covered the cusion in lilac fabric to match the girls room but has the saying laurens bum rests here which she loves but is shaped in a way that will support her well and she can use in her bedroom as a chair after looks good in the conservatory so ebaying now for another 2 for the other girls to have there names on
29th October 2006, 12:01 PM
I hope everything goes well for Lauren.
2nd November 2006, 04:16 PM
6 Days to go and we still havent heard from the surgeon although we have called 3 times. We are now just going along with the flow.
I feel like iam in Auto pilot although very positive. Id like to turn the clock back but i know we all feel like that sometimes after waiting almost a year we are finally getting to d day.
Lauren has a slight cough which concerns me but she is hoping it gets worse so the operations get cancelled which is understandable from her shoes.
Other than being fearful and feel;ing low everything is going pretty well.
kids are argung whos sleeping where while she is in.
Yet at the same time they are showing fears too i had twins and sons school phone to say there work has dropped over the last month which they are putting down to the stress of lauren going in. Children have spoke of being scared that drs will hurt there sister so last night we had to sit them all down and explain as best we could that they are going to make her back better so she can do more things and that its ok to get scared sometimes.
Seems to have done the trick nbow excited they get time off school and get days out with grandad and they will be able to make cards and posters for her bed little did i realise the pens would mark walls carpets you name it more everywhere else than on there papers.
2nd November 2006, 07:34 PM
Hi there. I'm sure it's perfectly normal for everyone to be affected by Lauren's surgery and worried about what will happen. You sound very organised, but then I guess you have to be with so many children to sort out. Wishing you the best of luck. Hope all goes well. :squeeze:
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