worried mum from Australia

[mumof5]

Amber and I are going to the primary school sports carnival tomorrow. Two of her sisters are in primary school, this school is right next door to Amber's high school. We will stay as long as Amber can and then come home for her to rest then maybe go back again. If Amber is up to it we may go into her school and have a talk to someone about the chairs etc... There are just so many things that you don't even think about. I've been looking through other posts and the information and ideas are incredible. Amber has always been pretty fit but is not what I would call a very 'sporty' person. I have free weights here and once she gets the all clear from her doctor I might start her on a llight weight program. I could use the exercise as well as I haven't done much since I fell pregnant last time. (4 yrs ago) So it will good for both of us to do something like this together.
Cheryl.

[Alison]

Your doc won't say Ok to weights (this seems pretty standard for most surgeons that I have met) until at least after the six month mark, five years on, my surgeon is still very, very no weights, and when we went to the physio he worked around the no weights issue, I think it is because it strains the muscles that are healing (not really sure). An idea that I have is perhaps you and Amber could start having a regular daily walk, as well as giving some exercise, it would give you some mother-daughter time (can't think of the right word to put here). After six months when the fusion has started to become more solid, he may say yes to weights, but it is always worth sounding him out.

At the sports carnival, see if you can borrow a chair in the school for Amber to sit or ar at least take a cushion to make it a bit more comfy

Something else I've thought about, for school assemblies, I found it wasn't the sitting that wasn't the problem ,but having to sit for a long time for one position. I got around this by sitting on a chair at assembly at the back of the hall
where all the teachers sat

Also, if Amber starts to find it uncomftable neck wise to sit and write and do school work, she should try writing whilst leaning on a lever arch file, it seems to angle it better

Have fun at the sports carnival

Alison

[mumof5]

I wouldn't try weights with her until at least a year. Then only after she gets the OK. I've torn a muscle lifting weights before and I wouldn't want that to happen to Amber. I don't even want to think of the damage it could do if she did.
We are walking together and doing shopping etc...
Amber hasn't tried to sit on the floor yet. I don't know why not. The lever arch folder is a great idea. Amber does have a couple of them already.
The girls are all looking forward to the sports carnival. I have a blanket in the car. I've got fold up wooden chairs so I'll take one of those and some pillows as well.
Cheryl.

[Alison]

Sorry if I sounded a bit harsh with my reply to the weights, I didn't mean it to be, my surgeon drummed it into me so much, if anyone scoli or not mentions weights, my brain goes into autopilot (i know that you wouldn't try weights until the full Ok was given, but once again, my brain goes into autopilot). Amber might not have tried to sit on the floor yet, because she may be scared or have some fear over whether she still can (some people I know with lumbar fusions still can't sit properly on the floor), she might not have had need to try, and she probably still feels quite stiff/achy in her legs/bottom of her back and might find it difficult to get down. I think my brain needs to be switched on properly sometimes, fold up chairs completely escaped my mind (after seeing my mum come for many years to my primary carnival with picnic chairs and a rug, it should have been connecting in my head)

Alison

I found that an empty lever arch file works best, because otherwise with stuff in it your hand ends up at weird angles and makes it more uncomfortbale for your hand)

[mumof5]

No problem about the weight thing. I didn't take it is being harsh. When I was lifting I built up very slowly and had started because of trying to heal injuries. At 70kg I got to leg press 170kg. I had dislocated my knee when young and now don't have much cartlidge, have arthritis and alot of problems with it still. I know how slowly you have to take things and when I was building up my shoulder after injury I lifted small soup cans. I think that's where Amber would have to start, around 100grams. But not for a long time yet. Thanks for your thoughts and advice though, maybe her doctor will say no anyway and we'll have to do something else.
I will remember to have the lever arch empty. Maybe she could carry a cushion in it!
Cheryl.

[Alison]

This is something that you have probably thought about but I thought I'd mention it anyway , Amber will highly likely need a locker right up until year 12. Why I say this is because even though once you can carry normal things again you can carry your school bag but through personal experience I have found that your shoulders get stiff and sore and your back starts to ache from carrying the bag from class to class.

[mumof5]

I had thought of that. My dad hurt his back 12 years ago and still has a weight limit of 5kg. When will this change for Amber? Will her strength and lifting ability go back to what it was before or will she always have restrictions?
Cheryl.

[Alison]

I have never personally had a weight limit given to me by either my surgeon or my physio. The advice I was given, was know your limits and always lift ergonomically correct. As time goes on, it is more of always being aware of how you are lifting, the way you are lifting, more than what you are actually lifting. That the abdominal muscles are braced before you lift and you squat to lift stuff instead of bending over. From the physio I've had, I've built up the muscles in my abdominals (and the ones below my fusion especially because below and above your fusion is the weakest spot in the veterbrae because they have to do a lot more work then they used to have to do. I have found it also a lot to do with confidence, in yourself and what you can do and being able to say its too heavy. With a lumbar fusion Amber will probably find her lifting ability will be a little different to what it was pre fusion. She will probably find it a little difficult to squat, because she won't move in that bit in quite the same way, but with some thought she will probably find ways around it and still be able to "squat" but in a slightly different way. Up until the first year, I remember that you were still pretty restricted.

That once the ok is given to carry stuff again, it is still not very heavy stuff such as a light school bag, a chair etc. After the year mark, when you are more "fusion solid" the restrictions on a lot of things start to be lifted. Amber will need to learn (I can't think of a better way to express this, but I'll keep on thinking) how to train her muscles in her abdomial area, to brace when she lifts. Her lifting ability and strength regainment will come gradually over time, it will probably be very close to what she was like before but not quite the same, and with everything, your body tells you when it has had "enough".

Five years post op, there is very little that I can't lift, or give some assistance to people lifting something. However if i am at all concerned about it being too heavy, I ask someone else if they can do it for me or get lots and lots of people to help me lift it. Its basically the very heavy stuff (ie stage blocks) that I won;t lift. Some things are tricky, such as pushing the electric wheelchairs of the kids I volunteer with (they are very heavy) but I've worked ways around it.

Alison

This is an offside that I think is interesting. Once I reached two and a half to three years post op, the main advice i was given by my surgeon was be "careful" (ie not twist suddenly). The only restrictions he placed were physical activity related. And they weren't more of a you can't physicaly do the activity but if I got injured or fell off I could be in strife. The things he said to try and avoid/be very careful of were horseriding and very contact sports such as rugby and aussie rules football. However you also learn over time to be your "own" judge on what is safe/unsafe. For example I know that Parlympian Louise Sauvage who is fused from TL2 to S1 , and is wheelchair bound has done activities such as skydiving and scuba diving. And the only thing she says she will never do is bungee jumping. Other people I know do stuff such as windsurfing and surfing.

For the most part I do follow the restrictions that my surgeon placed, but i have also come to know my body very well and want to "live life", as much as possible (also some of the things he said I could do are rather bizzarre such as golf, tennis and squash). I abseil, fence, swim butterfly occassionally (I did competively swim for many years and had learnt the technique very well thus I could do It rather safely) I only do it after a long warm up and only a lap or so, play wheelchair basketball (you are able to play this locally even if you aren't in a wheelchair and this ends up being very contact and you often end tipped over) Everything takes a long gradual process and basically time, unless they see my scar, people don't believe me that my spine is fused)

[mumof5]

I guess time is the answer to so many things. Amber just needs to have patience and to relearn how to use her body. I don't think that there is a better term for that. How do people that have their 'whole' back fused strenghten their stomaches? Can you do 'leg lifts' for your lower abs? What about upper abs and obliques? I know great workouts for these but you need to bend more than Amber will be able to.
Amber as yet hasn't posted anything herself, but she does read through every now and then and makes comments. She has been embarrassed by I few things I've written, but she has been very thankful of the advice and support from everyone.
Amber lasted almost an hour and a half at the sports carnival, she was very restless and didn't stay still for very long at all. She sat on some old tyres that were used as a retaining wall. She didn't want to try sitting on the ground. I think that was because we were out in public and she did want to embarass herself if it wasn't easy to do. ( I think she expected to get stuck) She'll have to practice that at home. Does anyone have any suggestions for an easy way to do this?
Amber doesn't squat as such but can go down with one knee lower than the other which she uses for balance. She can get up and down quite smoothly.
One thing I have noticed when we are out and it really annoys me is when 'older' people ( but not only them) see us coming and can see that we are going slowly and cautiously. They still expect to barge through and us to get out of their way. As everyone here knows it's hard to change direction especially when there's a trolley coming at you. I said to Amber that I feel like we need to put a sign on her head saying "I've just had spinal surgery" Amber said " No. I want a T-shirt printed saying it. You know how all the celebs get stupid sayings on their shirts" So I'm going to look into getting one done. I have made sure that I have 'commented' loudly when people have done this. They look pretty bad afterwards and avoid us in the next aisle. Has anyone else had similar things happen or do we just live near a lot of rude people? How have other people dealt with this sort of thing?
Cheryl.

[Alison]

Don't worry, it happens everywhere, you don't just live near really rude people, I know people all over have experienced similar problem. I remember we experienced it a lot. Basically if people can't "see" the "disability/injury etc" (ie a wheelchair or crutches) they have a really hard time thinking outside the square, that there might be a reason you are walking slow and cautious because you look normal to them. And therefore have no problem bashing into you and get too caught up in there own and business to slow down. I love the t-shirt idea, and Amber must have a wicked sense of humour to suggest it. It would come especially in handy in bumpy/bashy places such as a supermarket. I know that I read what is on people's t-shirts. It will grab peoples attention, and they'll be walking slower as they read it, so it'll give you time to get out of the way, or they'll move. I don't think we ever delt with it (in hindsight I wish we did cause I got bushed/bumped lots of times) I applaud you for making loud comments, hopefully it gives them something to think about.

A way that Amber could practice/ have a try sitting on the floor could be
:Practising the motion of sitting on the floor (ie cross legged or sitting leaning on your knees) on places that are higher. It may take some experimentation to find different ways of sitting on the floor other than cross legged. Practicing the action of sitting on the floor on places such as on the couch, bed, table even. Being higher you would have less chance of getting stuck, because you could "untangle" yourself easier. She would be able to see if it works sitting that way. Then if that went Ok, she could go lower, onto lots of pillows, then sitting on the floor with your legs out in front of you (with something behind you such as a couch, as if you did get stuck it is easier to get up, then from a cross legged position.

Ways for strengthing the stomach muscles with having the 'whole back' fused that my physio had me do (even though my fusion doesn't go really low, they would still be possible in a low and long fusion) are the pelvic floor exercises that a pregnant women does before and after birth. The ones that I did were all ones that you did whilst you were standing up,none on the floor. An example is that I held both my hands side by side on my abdomen, then i "squeezed" the bottom part of my abdomen in and breathed in and held it for a couple of seconds, then "released". Then did this five more times, twice a day. As time goes on, in my brain, the amount of bending Amber will regain going forwards, will probably be down to about her hips/waist. Some exercises to strengthen this area (as long as they just using your body), could probably be adapted slightly for Amber taking into account the loss of bending ability that she will have.

Alison

[mumof5]

Amber has just shown off and sat on the floor. She went down onto her knees then 'slid' sideways to the floor and wriggled her legs out from under her. She was not comfortable. I said "go on, get up again now, I bet you can't" Well Amber always positive tells me "I can get up. I can do anything." and she did. Completely reversed the process. Very clever. It looked awkward but she did it.
Amber is having a problem at the moment with her back being itchy where the 'numb' bits are. She tries to scratch and hurts herself because she has to press hard to feel it and the itch is still there. Is this normal? The itch I mean.
We are having a small street party for Amber at my parents house. The street have these parties all the time for the slightest excuse. So we are having one for Amber's first trip back down there. Everyone drags out tables and chairs BBQ's etc, sets up on someones footpath. Everyone puts in with food and drink. In summer we get out a blow up pool. These are people that are always there to help out so it's nice to go see them like this. I wish I still lived in that street, but we are honourary street members. It's only a 5 minute drive from home so when she gets tired we won't be far away.
Cheryl

[Alison]

Well it may not look pretty or graceful, but if it achieves the goal; Who cares!. Well done Amber, you are a smarty pants . The itching is normal, and it is the worst kind of itching, cause you can't seem to never make the itch go away. It is an itch that goes na na na na na na, you can't get me. I found that they do get less itchy as time (there's that word again :-) goes on, however they drive you nuts in the meantime. Maybe if someone else scratches the itch, Amber will hurt herself less, because you can "see" the pressure that you are applying. Or perhaps instead of nail scratching, she could try more of a knuckle fist to scratch her back (I just tried them out on my sister and she said the knuckle scratch hurt less). But unfortunately the itch will probably still be there, but it might make it less itchy. The street
party sounds like great fun

Alison

[mumof5]

gday its Amber and i've just read all these posts and stuff that mums been writing bout me some of the stuff was a bit surprising anways i'm just here to say hi and now i'm going to bed because i've been sitting for a little bit, way too long.
bye Amber.

[mumof5]

The street party went really well. About 15 - 20 people came so it was just a small one. She lasted about 2 hours then came home and went to bed. Where she stayed the rest of the afternoon. We are planning another one for when she is a bit stronger and the people who couldn't make this one can come. Amber's 15th birthday is coming up in a few weeks so we might make it for around then.
The itch that Amber had is coming and going making her very aggitated. She lost quite a bit of weight while in the hospital and is cranky because her clothes are all too big. I think she has lost around 6 or 7 kilo's (16/17 pounds) She is so thin now she looks anorexic. She doesn't have much of an appetite, I think that is because she is not as active as normal. At least I know she is eating so I'm not too concerned. But.... Has anyone experienced weight loss like this?
Her mood is going up and down a bit. I'm sure this is normal. It will be 4 weeks tomorrow and I know she wants to at least make it back to school once before the term ends. ( in another 3 weeks or so) I am worried that the mood swings may cause problems. They are not severe but she gets even quieter and sort of 'sad', she says nothings wrong. I usually back off thinking she'll tell when she's ready, but now I'm thinking maybe she doesn't know what is wrong. She still wants to be out of the house though. Does anyone have any ideas.!?

[Alison]

I was already pretty skinny after having a back-brace body, but I do remember that we had great problems trying to buy a school blazer that fit (my school was introducing blazers at the end of my first year at high school). I tried one on whilst I still had a backbrace and got one size. Then I tried one on after my surgery (about 8 weeks post op) and we came up with this very small size. Then when we went to pick it up a term later it was too small, and I needed a bigger size. I agree that as Amber becomes more active and therefore eats more, she will regain the weight. Perhaps encourage Amber to have more little snacks throughout the day, when she does feel hungry.

When Amber does go back to school, it would help her if the teachers tried to be as "normal" as possible around her/ about her. As my mum wrote in the letter to the school "give support, not sympathy". Amber is probably experiencing a wide range of emotions/ feelings in her head. Ranging from passive acceptance, to incosolable frustration (that she can't do all the things she wants to do physically, even though in her mind she can). It is still extremeley good that she wants to go out of the house, this is very important. I think the most important thing is to keep the communication lines open and remind her, that she can talk to you about anything/ how she is feeling etc. You mentioned that she might not know what is wrong, this sets off a bell in my head that she may have mild depression (which is common after a life changing surgery such as this one). Just one question, why do you think that her mood swings might cause problems once Amber goes back to school? Perhaps when Amber answers nothings wrong, push a little bit (sometimes it can help to have someone ask a bit more) and ask are you sure (she may snap at you, but she may open up as well), and then give her a hug. It is most important to keep on making sure that Amber goes out of the house as much as possible, gets out of bed normal times etc

Hope this helps

Alison