worried mum from Australia

[mumof5]

Amber has always been very thin. Post-op 180cm tall and weighs 54kg. I wonder how much all the rods and screws etc.. weigh? One of my friends explained to me why they took a graft from her hip as well as the ribs. The hip bone graft takes best followed by bone from the rib. Your own bone is best and gives you the best possible recovery. The bone from the hip would have been used at the site of the biggest part of the curve or at the place where they needed the strongest fusion. Hope that helps anyone else that wanted to know.
If Amber ate all I offered to her she'd be like an elephant. At least until she is more active. ( She read that and is now offended).
It's more her mood swings preventing her wanting to go back to school rather than after she gets there. Or that people will give her too much sympathy and she will get 'distant' and want to keep away from them. She doesn't like attention.
I am trying to keep to as normal a routine as possible and making her get up berfore the others go to school. On Shayleigh's pre-school days she has to be dressed ready to go by 8.45am. We do as much as she can in the mornings then we come home and I do housework while she rests. Then when her sisters get home from school she laughs and carries on with them. ( Amber says she laughs at them)
I'm not too worried about her being depressed at the moment but I am keeping a close eye on her. I think it's just that she can't do what she wants and it gets her down. I hope that her mood improves along with her physical abilities. She is not staying 'down' for very long and for the most part is her normal self.
Thanks for your support. It really helps to just talk about it all. Cheryl.

[Alison]

From what I have been told, the rods and screws suprisingly weigh very little, my dad says that they are six millimetres in diameter (they are about half the diameter as a pen). I believe as well that as Amber is able to do more things physically (or works out how to do some things as well in a slightly different way), she will feel "mood" better

This is what I remember about my school feelings (thought it might be of interest for you or Amber):

I remember that the most frustrating thing that I found when I went back to school was that despite the physical limitations, I felt relatively normal, and no different from normal. However it seemed like everyone else didn't think so. My friends treated me different, many people suddenly seemed to get the notion that my head was slow as well, the teachers were less hard on me and constantly asked "are you ok", "are you in any pain", "can we do that for you". It drove me absolute bananas. What I found made it better after awhile was that one teacher especially clued on that yes I really am ok, this gradually filtered through the teachers. However the student body never seemed to really accept it, but some did eventually realise, yea that's Alison, she's got rods in her back, so what , but I made a point that once I could do more, whenever they said I couldn't do something, I would make sure I would do it. All I wanted to do was go to school normally, and all other people wanted to do was give attention. The school I went to was relatively small, and I knew some of the teachers well, I spent a lot of time explaining to them at first that please don't treat me any differently, If I have a problem or am in a lot of pain I will come for assistance then. And as time went on, much of my time was spent explaining, yes I can do that,watch me.

Amber must find it a challenge to have to deal with all the moving different and physical limitations, cold (ie never having worn a backbrace). I have great respect for Amber, for still mananging to maintiain such a positive attitude and outlook.

I thing I did find that helped was that I was very honest about it and answered everyone's questions; no matter how bizzare. I think people act weird because they don't know how to "act" and it is a little confronting for them

Alison

[mumof5]

Amber's year advisor is really good. He is very understanding and I hope he won't be too protective of Amber when she goes back. One of his daughters goes to pre-school with Shayleigh so we occasionally see him outside of the high school. Maybe that will help him to see that Amber can do things. As far as I know there has been no-one else at this school that has had this surgery but there have been a couple of kids in wheelchairs although they haven't seemed to stay at the school very long. One of my other girls, Jordan, was there on crutches for 6 months and they were pretty good about that. Though this is very different I hope they will all be good with Amber. Most of her teachers have been aware of her back since last year. I guess we'll find out when we get there.
Cheryl.

[mumof5]

Over the last few days I have noticed that when Amber is getting tired her back goes back to it's old shape. Not just the shoulders but her hips as well. One really sticks out. I usually get her to lay down when this happens. She says she's straight and I tell her to look in a mirror. (that shuts her up and she lays down.) When she lays sometimes I have to help her to straighten. She is not complaining of being in pain, just 'uncomfortable'.
She has been trying to stay up longer (nearly all day) so that she can get ready to go back to school. Could this be the problem?Does anyone know what is going on?
Cheryl.

[Alison]

In my head and from personal experience that the more you are active at the start, the tireder you get, and you seem to revert back to your old position because for your body because it is its most comfortable (and natural) for your body, and you don't even realise it yourself until someone points it out. I have no idea why it happens. but i do know that when I get really tired I revert back to my "comfortable position". Amber probably finds "straightning" uncomfortable because for her brain it doesn't feel comfortable yet (ie hasn't got used to it). I think as Amber's body and brain gets used to being up all day in its "new" position, you will find it happening less and less.

Alison

[mumof5]

Thanks. I was concerned that it may be putting pressure on the screws when she is 'bent'. Shoulders I can understand them going back to their old way, but the hips really concerned me. She goes for her 6 week on the 23rd of June, I'll ask the doctor and see what he says just to make sure. But you have eased my mind a little.
Thanks again.
Cheryl.

[Alison]

One thing that I've just thought about that might be worth asking, it could be a possible explanation with the degree of correction that Amber got, her legs may be slightly uneven in length now being "straight". Her hips may be "slanting"/"bending" to try and compensate for this. If this is the case, the doctor may look at orthotics to even it out. It is just a theory that has come to mind, and it would be something worth asking the doctor about; the "straightness of Amber's hips, in relation to the new length of her legs". Her knees could also be in a slightly different position now being "straight"

Alison

[mumof5]

Now why didn't I think of that! I'll write that on my questions to ask list. You'd think it would be like it all the time though if her legs were different lengths not just when she has been up awhile. I'll watch her more closely for the next few days and make sure it is only when she is tired. Maybe it's like it all the time and I just haven't noticed.
Cheryl.

[Coolspring]

Just adding my 2cents worth to this interesting conversation...

My 12 year old daughter has been wearing a lift in her left shoe since about 2 months post-op. Her upper and lower curves were about 60 and 47, respectively, before surgery (July, 2003) and about 20 and 35 after surgery, (fused T6-L1). The lower number is disappointing, and this past year the doctor has been hopeful it would sraighten some more on its own. To help "nudge" it along, he prescribed the lift. (This was actually our orthotist's suggestion!) I believe it is temporary, although that remains to be seen. She will be xrayed again next month. The lower curves seems to responding just a little. But it (the lift) definitely helps to even her hips.

I'm curious - what degree of correction did Amber get?

Judy

[mumof5]

We are not sure the degree of correction as yet. The surgeon was looking at her post-op standing x-rays the day we left the hospital. We are going down for her check up next week so I'll let everyone know then.
Amber's hip's are not as 'crooked' this morning. I'm going to keep a check all day today and see what happens. It's hard to tell when she keeps covered up. The left side of her waist really indents. But it comes and goes. I guess I'm just worried that it will stay and she won't have a nice 'straight' waist. Besides being worried that it might do damage to her spine.
Cheryl.

[mumof5]

Amber is having a problem with a 'pain' in her back. It started last night just before she went to bed. She said when she layed down it felt like she was laying on something. It is on her left side, the side where everything was done, above her hip close to her spine. If you put your hand on the small of your waist with your fingers at the back its near the pads of your fingers. She says the area is numb to touch and she has no pain until her back is touching something. She has lost a little more weight. Could it just be that she is so thin. ( please other mums don't panic, she is eating, her appetite is back.) Her hip is still a little crooked on that side and never seems to be 'straight'.
Any ideas?
Cheryl.

[spincon58]

Cheryl,

Do you think Amber would have benefit from a hospital bed?
I'm thinking about getting one but the doctors office think I'm crazy for asking? Any suggestions?

[mumof5]

Amber says she is more comfortable in her own bed. She does have a really good mattress on a slat bed. I don't really know what the benefit of a hospital bed would be.
Cheryl.

[mumof5]

Amber has just had her 6 week check-up. The doctor says things are going really well. Her curves have gone from T 63* and L 68* to 15* and 20*. Much better than we were hoping for. After reading the posts on here I have realized that things are done a little differently here in Australia. I don't know how much of it has to do with the length of surgery ( Amber's T-4 to L-4). The doctor has told Amber lots of walking and she may use an excerise bike, but, no swimming, lifting, twisting sports such as netball, running etc.. I asked him about physio and he said no she needs more rest at the moment to recover properly and 'they' will do too much.
For everyone that has asked about what happens with your ribs when they take some out. They grow back! It takes a while, but apparently Ambers are coming back nicely and when they grow back they are straight(ish) not curved so the hump won't come back. Good news. Maybe this is why no physio.
The tingling that Amber has had on and off in her legs and feet he says may be caused by Amber being so thin that when she is sitting she is putting a lot of pressure directly onto the nerves. I probably haven't said that right but I hope everyone understands what I mean. He said to keep an eye on it and call him if it gets any worse. He did say that nothing showed up on the monitors during surgery, so he is sure that there was no permanant damage done. So I guess it's just wait and see what happens on that side of it.
The numbness is normal and should go away with time.
Amber's curves above and below the fusion are correcting themselves well. Hopefully they will keep correcting and she will not need to have anymore surgery. The surgeon has said that in time the fusion may need to be extended if it doesn't corrrect well enough. But that's a long way off yet.
I can't think of anything else now, though I'm sure I've forgotten something.
Cheryl.

[spincon58]

Dear Cheryl.

I am so glad that Amber got a great check up and a fantastic percetages of correction..it seems like your dr. did a great job...I ask about the hospital bed b/c there was a list that suggested a hospital bed can help ease the pain from getting in and out of bed....just a thought. good luck with Ambers recovery