worried mum from Australia

[mumof5]

We have one of those exercise balls ( I haven't even pumped it up yet). But I was worried about Amber falling off it so I didn't suggest it. Maybe I should get it out. Amber's favourite place lately to rest has been on an old foam mattress on the lounge room floor. She si getting so much stronger every day, we went on a picnic with Shayleigh's dad today and Amber was even kicking a ball around for a while, she's resting now and is pretty tired. I think she is getting excited that she can start to do more things.
Cheryl.

[Alison]

:-) I think probably leave the ball for a bit longer (about the three month mark would probably be best), when you sit on the ball if you give yourself a wide base (ie legs apart a bit more than you normally sit) it gives you a bit more balance and makes you more stable. When I was getting used to sitting on it first, I would sit with my back to the table so it would give me a bit of support at my back. It is pretty exciting when you find that you can do again that you wern't able to do at the start

Alison

[mumof5]

Amber says she is feeling good after our afternoon out yesterday. I still worry that she is going to over do, but I noticed yesterday that every now and then she would just go off and sit down for a while. It must be hard for her to watch everyone else keep going when she can't. When they were kicking the ball around even Shayleigh (3) was faster than Amber. At least Amber thought it was funny.
Cheryl.

[mumof5]

Amber has had 2 full days at school. Both days she has come home saying that her shoulder was 'burning'. She lays down as soon as she is home. Is rest the best way do deal with this? By that I mean minimal sitting and 'being up' after school. This morning she says she is sore not only in her shoulder but in 'bands' across her upper and middle back.
Today (Wednesday) Amber does not have much on at school. It is assembly and sport day, she only has 1, 40min class that she can participate in. I am thinking that for a while it may be a good idea if she just stays home on Wednesdays. What does everyone else think? Will it be better for her to break up the week or battle on? She wants sort of wants to go, but is in pain which is affecting her after school, but dosen't want to hinder her recovery. She also (though she won't admit it) doesn't want the kids at school to notice her being 'gone again', and therefore bring more attention to herself.
Thanks in advance.
Cheryl.

[Alison]

Alison's two cents worth :-) (I've just started reading Romeo and Juliet for next term and it is making my brain a little bit fried). I hope some of my suggestions help

:When Amber describes her shoulders (is it one or both, if it is one, i'm guessing that is the one were they cut the most muscle out of) are burning and the bands across the high and middle parts of the back are sore I can relate COMPLETELY. Five years on I am still having problems on the side where the most muscles were cut out.

:Lying down is good for it, but something else to try would be sitting for awhilein a comfy chair completely slouched (as much as possible :-) and relaxed.

:Wheat bags may also help as well, as well as Nurofen Gel/Sorbelene or a bit of a shoulder rub

:The 'bands' in Ambers back that are sore sounds to be the little nerve receptors in the back (they run from your shoulder down the way, down the back) are starting to become tense and tight, from having to 'work' lots more (after a school break) and other tension (more concentration in the mind, more tense in the body). Using a wheat bag across the shoulders as well as kneading them gently out (Working from the shoulder down) might also give some relief

:With Wednesday's, could you perhaps look at it on a week by week basis and leave the decision up to Amber (she knows her body, and also knows how she feels after being very sore)

Glad it all seems to be going pretty well

Alison

[mumof5]

Thanks for your ideas, we have tried lying down etc. It does seem to be helping. I have wheat bags that we will try as well. I also have an electric 'massaging heat pad', I don't know if this would be suitable to use for her. What do you think? I have some 'Voltarin' Gel, I'll give her a rub with that tonight. I keep forgetting that I can use stuff like that now that the cut is completely healed. It is just the one shoulder, though it is the right one and the ribs came out of the left, I had assumed that she would have more pain on that side under the shoulder blade.
Wednesday's will be left up to Amber to decide how she is feeling, I just hope that she doesn't push herself too hard for one class.
I think too that because of the weight that she has lost it is contributing to her tiedness / lack of stamina.
Everything does seem to be going really well. Life in general at the moment is pretty good for all of us.
Best wishes.
Cheryl.

[Alison]

Even though the ribs came out of the left, perhaps the right was where the most muscles were cut off the spine in the maneuvering of it during surgery.

If Amber has regained sensation in her back (ie no or little numb spots), the electric massaging heat pad might be something worth trying, but probably a bit further along in recovery, a gentle back rub with hands might work better for now. If she doesn't have much sensation in her back (i know that I personally had lots of numb spots, poor sensation in my back for a long time), the massaging heat pad won't have much affect, as she won't 'feel' it properly, but as time goes on, she will probably find the massaging heat pad a great relief

(My mum had me have a back massage by a masseus person about 8 months after surgery, as she thought it might help and it was funny, cause I knew that he was massaging my back, but I couldn't feel it :-)

Alison

[mumof5]

Amber has been going well with staying at school. She goes 3 or 4 days depending on 'stiffness/pain'. I'm pleased with her attitude towards school. ( I hope she doesn't read that). She really does seem to be making an effort. She is using her back as a excuse to do things around the house that I know she can do. I have been working on ways to 'trick' her into doing things. Well it makes life that little bit more interesting. She has been taking a small bag and exercise books which is working well at the moment. She still won't take a cushion though. I even bought one for her that has 'misbehave' written on it.
One thing I have wondeered about is the top of her scar is a lighter colour than the bottom part. The lighter part is where it is usually not covered by clothing. I can also see what I think are 'veins?' running across it. They look like picturres I have seen of people with broken facial capillaries. Is this normal. Should I be worried? Other than that the whole 'cut' looks wonderful.
Cheryl.

[mumof5]

Amber has had a very bad cold this last week and she wants to know does it ever stop hurting your back when you sneeze and cough?
Cheryl.

[Alison]

I remember well the feeling of sneezes ricocheting through your back, not a nice feeling :-(. I personally found that it took ages for sneezing and coughing to not go through your back. After your muscles become a bit stronger and you learn how to "brace" yourself (recognise that you are going to sneeze so you stop moving) before the sneeze it doesn't hurt as much. For some reason it for me seems to still hurt a little, but nothing like before. But I do wish I knew why the sneeze and coughs go through your back, maybe it's just one of those things ?

Hope Amber is feeling better :-)

Alison

[mumof5]

Amber is pretty much over her cold now, though she did give me a scare earlier this week when (at 2 am) she was icy to touch and her breathing so slow I thought it had stopped, I had to keep shaking her to make her breathe. Very scary.
She is getting worried about the shape of her rib hump and is looking forward to seeing the doctor next week.
Cheryl.

[nanmccune]

Natalie had a lot of shoulder and upper back pain for about 9 months after surgery. She complained that her "bump" hurt almost daily. The bump that she complained about was the square bolt that held the rod going across the top of the fused area. When it was hurting, the pain was also in bands across her upper back and shoulder. I don't know how common this is because all her doctor ever told us when she complained was that her back looked great, and there was nothing wrong. Fortunately, the pain stopped as Natalie regained muscle strength in her back and she has not had any real complaints since. However, sneezing is still a bit of an ordeal for her almost 2 years later. Also, Natalie missed an average of 1 day/wk of school after she went back, because she got so tired as well. Eventually she stopped asking to stay home and went back to her pre-surgery schedule on her own. Her school was very understanding. Hope this helps, but hang in there, she will get back to normal before you know it!

NanMcCune

[mumof5]

Thankyou. It helps so much to know that we are not the only ones going through this. Amber is actually developing a lump under her shoulder blade. It is coming from her side and feels hard. I think it is one of her ribs. I just hope it is ok and she doesn't need more surgery. I mean how do I know if it is a rib that for some reason isn't growing back properly! Her doctors seem very understanding about pain and do their best to help, which is good.
At the moment Amber is going to school Monday and Tuesday, has Wednesday off (it is sport day and she only has one class) then she goes Thursday and Friday. Before she came down with that cold she was coming home from school and not needing to lay down straight away. She is still getting some pain but tiredness is her major thing. It is getting better all the time though.
Cheryl.

[mumof5]

Amber had a problem yesterday morning. After going to wash her hands she couldn't straighten up again and was stuck leaning slightly forward. She said she had no pain as she was but if she tried to straighten it felt like all the muscles along her spine and in her waist were being pulled and her 'shoulder band' burned. I rang her doctor here and told him what had happened saying that we have an appointment with the doctor in sydney (the one that did the surgery) next Wednesday but if there was a problem I didn't want to wait that long. He said that it sounds like muscle spasms and is not that uncommon. He told me to give her anti-imflamitories and pain killers and ring him tomorrow if it was no better. Then I told him about her shoulder wondering if it was connected. He said get x-rays done and get in here to see me tomorrow, I'll fit you in. Now I'm really worried. I've had no sleep as Shayleigh has been really sick (extreme high temp for 10 hours) and I don't know if I'm over reacting or not.
Cheryl.

[spincon58]

Cheryl,
You are not over reacting...we have to take every pain seriously..even IF we think it's nothing..I made the mistake to wait with my pain...my chest pain and leg pain was not from the surgery it was a complication ; blood clot in the lung...If I didn't go to the doctor it could have been deadly for me....take Amber to the doctor and let him tell you whats wrong or right.