worried mum from Australia

[mumof5]

I am a single mother of 5 girls. My eldest, Amber 14, has 2 60+ degree curves and is having surgery on May 12th. She has been booked in for surgery twice before and both times it has been cancelled (not by us). We now have to travel to Sydney instead of Newcastle which is much closer to home. She does not want to talk about her surgery and if I say anything to her she says I haven't thought about it. Maybe this is just her way of coping. She has developed a cold in the last few days and I am getting worried that it will be cancelled again even though she only has a sore throat now. Has anyone else had a problem with illness this close to the big day?

[spincon58]

Hi,

When you go into the hospital she will meet with the aneseaolgist(sp) and he will determine if it's safe to have surgery or not...once my surgery was canncelled from this b/c I had a terrible cough...the surgeon was really mad b/c of cancelation he thought I was fine...so i had the surgery two days after...

[spincon58]

Hi,

When you go into the hospital she will meet with the aneseaolgist(sp) and he will determine if it's safe to have surgery or not...once my surgery was canncelled from this b/c I had a terrible cough...the surgeon was really mad b/c of cancelation he thought I was fine...so i had the surgery two days after...

[spincon58]

Hi,

When you go into the hospital she will meet with the aneseaolgist(sp) and he will determine if it's safe to have surgery or not...once my surgery was canncelled from this b/c I had a terrible cough...the surgeon was really mad b/c of cancelation he thought I was fine...so i had the surgery two days after...

[spincon58]

sorry for the double posting ..i think i pressed it twice..

anyway..i'll say a pray fpr your daughter and hope all will go smoothly and she'll come out fine...good luck with the surgery.

[Peggy]

Hi,
Your daughter's situation sounds just like mine. She had a double fusion on April 15 for two 60 degree curves. A couple days before she went in she got a slight sore throat and runny nose. I was really afraid they were going to cancel the surgery. The surgeon said it would be left up to the anethesiologist. When we went in the morning of surgery they asked her how she felt and listened to her lungs, took her temperature. She didn't have a fever and her throat was just scratchy so they ok'd the surgery. I know if your daughter is running a fever its almost certain they will cancel. She has a whole week to get better. Hang in there and good luck. By the way, my daughter's surgery went very well and her curves were corrected to 15 and 15 degrees. Let us know how things proceed.

[Peggy]

Sorry, me again. I meant to add that my daughter also would not talk about her surgery. She changed the subject if I tried to talk about it. Didn't even cry about it till 2 days before. She still doesn't like discussing it after the fact. She didn't even want to look at her before/after x-rays but her doctor showed her anyway. Some kids just cope in their own way. She did fine and is recovering well emotionally too. However your daughter needs to handle it, I think she knows best what works for her. Again good luck.

[mumof5]

Thank you both, Amber's throat is sore but she does not have a temperature. She has been feeling sick in the stomach but I am hoping that it is nerves and nothing serious. She stayed home from school yesterday b/c of it and now I'm not sure if it is b/c she doesn't want her friends fussing over her. She is always quiet but we have a good relationship and I know she come around when she's ready. She goes for her pre-op tour & blood tests etc on Mon.
I am finding the time difference a little weird. I also have not mentioned that Amber's father (the father of my first 4 kids) died 10 years ago om May 20th, I know this is on her mind too. The father of my youngest who is 3 left when I was 6 months pregnant and 3 months ago has decided to see her and is now threating legal action all the time if we don't do what he wants. This is affecting all of my kids as he practically raised them for 6 years and now will not speak to them. It's a lot for a 14 year old to have to deal with and I don't know how to make it easier for her. Any suggestions?
Cheryl

[spincon58]

Cherly,

I'm sorry you have alot on your plate..please just focus on Amber now..you both need each other...she probally is feeling all sorts of worry but is not telling you...she wants to be brave for you...Look I'm an adult 45 and I'm scared to death of surgery imagine a 14 year old...stay happy and positive...buy a new shirt or CD for the hospital...I'll be thinking about you;)

[Peggy]

Good Luck Cheryl. Just tell Amber to focus on staying positive and keeping herself strong for her surgery. I hope things improve for you and your family.

[mumof5]

Amber is going to school today. Her teachers have arranged for her to sit some of her half yearly exams two weeks early. Our school year is much different to America and high school here is currently in week 2 of term 2. All schools here have 4 terms. The school is being relly good and very suppotive of her. It will also give her a chance to see her friends before she goes in.
As we are going so far from home she won't get any visitors while in hospital. From what you have all said I don't think she will notice too much much until she is nearly ready to go home. Does any one have a suggestion for an activity for her to fill in time as I'm not sure what she will be able to do. How did you parents cope during the surgery. Amber's curves go the opposite way to normal (apparently) so they think it may take longer as well but I'm not sure why. They have also said it brings a greater risk. Does any one know?
Cheryl

[Alison]

My curves go the opposite to normal, but I'm not sure why it would pose more risk. I do know that my surgery was 8.5 hours but thats about it G'day from a fellow Aussie, I live in Perth WA. I had surgery on the 23rd of November 1999 for Infantile Idiopathic 60+ degree curves from T2 to T12. It was only holding surgery, not correctional. BUt I remeber it well, like it was only yesterday. And I would like to share some advice with you:

: I remember when I went into surgery my Mum told me later that she absolutely bawled her eyes out, because she knew that my life would never be the same again. I know that this will be difficult but try not to cry in front of your daughter, I was so glad that Mum didn't cry in front of me, because I was pretty upset myself and it would have made it worst
: Whilst I was in surgery, Mum went to work, because she didn't think that she could stand sitting in the waiting room, and needed to keep herself busy. I know because of the distance, this is not possible, but try and go outside or for a walk, or to the shops, because it will take your mind off it.
: I was a year younger than your daughter at the time of surgery, but one thing i did appreciate when I was in HIgh Dependency/ ICU that mum brought me a couple of soft toys and hung them of the bed frame, and a bunch of balloons. Because the bed will most likely have a frame around it. It made it all a little more comforting and friendly
:Consider taking one of your daughters favourite teddy bears to hospital. She may say that she is too old for teddies, but you can probably take it in with you to the pre- op bit and it is a little comfort when you are in so much pain
: For the first few days, the little things brought me great relief. Such as dad carefully brushing my hairout, it was strewn across the pillow, getting me more ice (that's what you eat for the first few days), rubbing itchy spots, washing my face etc
:Something to be prepared for, if your daughter has begin getting her period, it will probably come during whilst she is in hospital, don't worry the nurses are great in dealing with stuff like that, it comes usually because of the surgery stress on the body
:Even though she can't have any visitors because of the distance, try and see if one of her school friends can organise a big get well card and get lots of people at her school to sign it/ write messages/, I wasn't able to have visitors either, but it hightened my spirits, to show that people still remember me, and were thinking of me.
:When your daughter comes back to a normal ward, she probably won't feel like doing much, so T.V is a good activity or something like a discman
:Another thought is I had surgery the end of the school year, and I was back at school at the start of next year, so your daughter would probably not be back at school until the very end of this term ie week 10 or 11 and definently the start of next term.

I know that this probably seems a little all surreal right now, but it is for the greater good in the long one, I know this is a cliche, but take it one day at a time. I would like to offer you more advice to you and your daughter about the next steps after surgery, either through this board or either of these email addresses aliren53@yahoo.com.au / little_miss_jen86@yahoo.com.au


I wish your daughter and yourself the very best of luck

:-) Alison

[mumof5]

Thank you Alison for your message and support. You hear so many things and everyones is different it makes it hard to know what to expect. Amber's curves are lumbar T11 to L4 and thoracic T4 to T10 both 60+. The last x-rays showed the L4 to be "quite oblique" whatever that means and that L4/5 is only partially mobile which does not correct on bending. So he is unsure how far to go. He would prefer not to go to L5 but as we have only had one visit with this doctor I have not had the chance to ask. Did you have to wear a brace after you came home? Her teachers are not expecting her back at school this term so she will have lots of time to recouperate. I am concerned about the surgery but I know that it has to done and the whole family just want it over and done with. It is going to hard on every one to be so far apart and it looks like we may not be together for the 10th anniversary of their father's death. Westmead children's hospital seems to be really good even having their own tv and radio stations, library and a school heaps of other things. The first weeks home are worrying me as I don't know what her limitatons will be and I don't want her getting bored or unable to do the things she wants, so I would like to have a few new options for her. We live in a 2 story house so we have to make a few adjustments, but she has everything downstairs that she could need. Will she be able to manage a shower when shen comes home? how much help will she need?

[Alison]

I'll send one on her limitations / how much help she will need when she gets home soon ( i don't want to overload you :-) but here's a couple of bits of reply for you

:After surgery and when I got home, I did not wear a brace. I think that was because mine was a purely thorasic fusion, not going into lumbar. From what I know, lumbar curves fusions + are put into braces (and some thorasic too, it seems to be more the curves which are "corrected" that go into braces afterwards) to ensure that movement in that area will not occur whatsoever, because more movement occurs in the lumbar in comparison to thorasic in fusion terms

: When your in the hospital there will be an OT come in and go through OT stuff, mainly stuff about in the home. When I got home from hospital I had problems standing in the shower and I was also "worried" that I could slip and fall over. I would highly, highly recommend hiring / borrowing from the hospital / local hospital etc a shower chair and a raised toilet frame (it was hard to bend down low onto the normal toilet. As for needing help in the shower, I did have someone watch me for a few days getting in and out of the shower just in case I became unsteady, as you are still very tired after surgery and when you come home. Something I would also GREATLY suggest, is replacing the shower head with one of the adjustable ones (they aren't particularly expensive) they are like the ones in most hospitals. The adjustable ones are the ones that a long "cord" is in where the water comes out, at the end of the cord is the shower head and the whole thing can be taken off and hand held whilst you shower. I highly suggest it because even though Amber would probably need it to be taken off for her, she could sit in the shower chair / stool / some people have also used eskies to sit on but I think a shower chair is safer and wash herself. She would probably need someone to help her with washing her back and washing her hair (it is pretty sore to lift your arms up above your head)
:Something else I've thought about for taking to the hospital is Ambers own pillow. Even though you don't a pillow in High Dependancy / ICU when you get back to a normal ward it is comforting/ more comfy to have your own pillow, and definetly a lot more comfortable to hospital ones. Something to talk about to the OT with will be things such as pillows, to see if Ambers is suitable, or if she might need a different one
: Another thing for hospital, as soon as it is possible when you are back in the normal ward, get Amber back into her own pyjamas. It adds a little bit of normality back into everything. Nighties/ Night dresses are better than two piece pyjamas, because they are easy to get on and off, and there is nothing "pressing" on your back such as elastic.
:Also, make sure you take a pair of grippy, non slip shoes that Amber can slip her feet into such as sandals, canvas shoes or reef walkers (more stable than slippers, but take slippers too)., When the physio starts with rewalking etc, I felt safer having shoes on rather than being in bare feet.
: Just a little bit on when Amber gets home, she'll probably spend the first week or so having lots of little sleeps, cause surgery knocks you around a bit :-). One thing my parents made sure I did was that I got out of the house every day on a little "trip" after the first few days of being home. It wasn't anything major, just a walk down the street to the shops to buy a roll for lunch or some other little errand, or going to see someone on my street but it was good getting out of the house, as I think I would have gone absolutely bonkers if I had been cooped up in the house all day.

I'll add to this soon, I just want to send it in small chunks because I know lots of stuff / emotions are going through your head right now, I don;t want to overload you :-)

All the best

:-) Alison

[mumof5]

Thankyou for all that. I already thought of a chair for the shower, I got one of those plastic patio chairs it's really comfortable but has lots of gaps for water to get away and it has non slip pads. I have one of those shower heads with the 'hose'. But I hadn't thought of the toilet being too low. I'm sure I'll be able to sort something out. I'm glad you mentioned needing shoes with grip, I wouldn't have thought about that. We are going down for the pre-op stuff tomorrow. Amber is starting to get a little bit worried about what will happen, the thing she is most worried about is needles of all things. We have to leave at 4.30am (with 5 kids scary, luckily the other girls are going to my mum's I just have to drop them off.) Should I put a stable chair near her bed so that she can grab on to it for support while getting in and out or will it just get in the way? I know stairs are out to start with but what about walking up and down hills? We live in a hilly area, but are only a few minutes drive to flat ground for her to walk and a 10 minute drive to the shops. I am doing ok at the moment. I'm one of those people that handle the bad stuff pretty well and save the falling apart until after everything is finished and I have a chance to sit down and think. I'm sure I'll keep it together in front of Amber and my other girls. They all know how concerned I am but we are positive.
Cheryl

[spincon58]

I'm praying and wishing all the best for you and Amber....

[Alison]

Hope that the pre - op stuff went Ok and that Amber is staying positive, I remember that that was when it really began to hit home, I think I had been in kind of "denial" until then, you would think after wearing a back brace for 9 years that I would have accepted it, but I don't think it really hit home until then.

As with hills, it really depends on whether they are steep hills or not to hilly. For the first few week hills if they were steep it would be difficult because it would take lots out of her body, which would still be tired from surgery. However once that step was "over" in my opinion hills would be okay. It would be a good idea for someone to always be with her (in case she gets a bit unsteady), and you will probably need to take it slowly and have lots of rests (depends on the individual). You and Amber could work up to walking down the whole hills, and do a bit each day. My next piece of advice on hills might sound strange, but it is something that I remember well (with a smile). When walking down/up hills, and on flat ground too to some extent, whatever Amber does, she shouldn't look/ try and focus on the horizon. Otherwise she will be a stumbling drunk (quite literally). This is because before spine surgery, your centre of balance is different to when it is after surgery, and it means that your brain has to be "reprogrammed" into looking "out" at the world in a different way. Ambers' brain will eventually adjust, but it might take a while.

Whether to put a chair next to her bed for balance is a good idea but it is also a "bad" idea, all depending on how her room is set up, and also through trial and error. If there is nothing around either side of Ambers bed, I would suggest putting a chair there to give her a hand, but if there is something ie a bed side table/ dresser it wouldn't be a very good idea as it would get in the way. As after surgery you are taught how to log roll out of bed and you need basically the whole length of the bed, and you use the bed as a support.

To assist with dressing (ie putting sock on and pulling up pants. underwear etc) ask in the hospital about acquiring a dressing stick, it is basically a long piece of dowell with a coat hanger hook on one end to hook things. It means that you can dress yourself. When I cam home I was very concerned about breaking something in my back and moving my neck, don't be suprised if Amber walks a bit like a robot. and you don't want to squat to get things off the floor, you are scared to move. Something I used was a claw pickerupperer (I don't know what they are called :-), this is a long pole with a claw on the end to pick up things from the floor, they come in very handy.

As for other sorts of limitations that you'll find when you get home, (I am thinking about this still, and I'll post more as they come to mind are), , people with lumbar fusions as well seem to be a lot stiffer than just thorasic fusions because movement is different (so I have learnt) brushing hair at first will be sore because with the muscles in the back being cut, it is tender to lift your hands up above the head and Amber will probably need assistancce to brush her hair (I've heard some people have had problems with brushing their teeth, but I think that is more of an individual thing). If any of your plate cupboards are high up I would suggest for the first week or so (might not need to but it'll depend on how Amber feels) to put some plates/ cups etc more at bench/ waist height where Amber can reach them. Amber will be able to fix herself a sandwich, get food etc. The best advice I have is to hold things such as plates etc as close to her chest as possible. Carrying dinner plates with food on them (depending on what is on them) would probably not be a good idea at first for the first month or so. A suggestion is to have a few small bottles of drink in the fridge, so Amber can fix herself a drink, without having to ask someone.

The biggest hurdle to overcome is boredom and frustration, especially if you have never worn a brace (I've been told it is more if you have never worn a brace, having worn a brace for somethime, I had been used to limitations, but if Amber has worn a brace before, she will have some used to limitation), I'm still thinking on how to explain this and I'll get back to you.

I am one of the biggest haters of needles. The bad thing is that they hurt more coming out (such as IV lines) then going in. See with the anaesthesist how Amber is going to be put asleep, and how pre med injections are going to be given. A lot of needles are given when you are asleep and Amber will most probably have a self pressing PSA,which is as much benefit psychologically as it is for pain SOmething else I would suggest taking is a joke book, or a happy book of some other kind, to take Ambers mind off pain (it hurts like buggery when they turn you, I often cried)

I would like to leave you for now with something funny for Amber to look forward too in the future, I still get much entertainment from it myself. AMBER WILL SET OFF THE METAL DETETECTORS (either the overhead one or definetly the swipey one) I was in Sydney last year for the National Guide Jamboree and in Perth I set off the swipey detetector and when coming home from Sydney I set off the overhead one; which entertained me greatly because they had me take off my belt, shoes, glasses, badge etc and I still set it off (I told them why after that, but it was fun to play along:-).

:-) Alison

[Alison]

Hope that the pre - op stuff went Ok and that Amber is staying positive, I remember that that was when it really began to hit home, I think I had been in kind of "denial" until then, you would think after wearing a back brace for 9 years that I would have accepted it, but I don't think it really hit home until then.

As with hills, it really depends on whether they are steep hills or not to hilly. For the first few week hills if they were steep it would be difficult because it would take lots out of her body, which would still be tired from surgery. However once that step was "over" in my opinion hills would be okay. It would be a good idea for someone to always be with her (in case she gets a bit unsteady), and you will probably need to take it slowly and have lots of rests (depends on the individual). You and Amber could work up to walking down the whole hills, and do a bit each day. My next piece of advice on hills might sound strange, but it is something that I remember well (with a smile). When walking down/up hills, and on flat ground too to some extent, whatever Amber does, she shouldn't look/ try and focus on the horizon. Otherwise she will be a stumbling drunk (quite literally). This is because before spine surgery, your centre of balance is different to when it is after surgery, and it means that your brain has to be "reprogrammed" into looking "out" at the world in a different way. Ambers' brain will eventually adjust, but it might take a while.

Whether to put a chair next to her bed for balance is a good idea but it is also a "bad" idea, all depending on how her room is set up, and also through trial and error. If there is nothing around either side of Ambers bed, I would suggest putting a chair there to give her a hand, but if there is something ie a bed side table/ dresser it wouldn't be a very good idea as it would get in the way. As after surgery you are taught how to log roll out of bed and you need basically the whole length of the bed, and you use the bed as a support.

To assist with dressing (ie putting sock on and pulling up pants. underwear etc) ask in the hospital about acquiring a dressing stick, it is basically a long piece of dowell with a coat hanger hook on one end to hook things. It means that you can dress yourself. When I cam home I was very concerned about breaking something in my back and moving my neck, don't be suprised if Amber walks a bit like a robot. and you don't want to squat to get things off the floor, you are scared to move. Something I used was a claw pickerupperer (I don't know what they are called :-), this is a long pole with a claw on the end to pick up things from the floor, they come in very handy.

As for other sorts of limitations that you'll find when you get home, (I am thinking about this still, and I'll post more as they come to mind are), , people with lumbar fusions as well seem to be a lot stiffer than just thorasic fusions because movement is different (so I have learnt) brushing hair at first will be sore because with the muscles in the back being cut, it is tender to lift your hands up above the head and Amber will probably need assistancce to brush her hair (I've heard some people have had problems with brushing their teeth, but I think that is more of an individual thing). If any of your plate cupboards are high up I would suggest for the first week or so (might not need to but it'll depend on how Amber feels) to put some plates/ cups etc more at bench/ waist height where Amber can reach them. Amber will be able to fix herself a sandwich, get food etc. The best advice I have is to hold things such as plates etc as close to her chest as possible. Carrying dinner plates with food on them (depending on what is on them) would probably not be a good idea at first for the first month or so. A suggestion is to have a few small bottles of drink in the fridge, so Amber can fix herself a drink, without having to ask someone.

The biggest hurdle to overcome is boredom and frustration, especially if you have never worn a brace (I've been told this, having worn a brace for somethime, I had been used to limitations, but if Amber has worn a brace before, she will have some used to limitation), I'm still thinking on how to explain this and I'll get back to you.

I am one of the biggest haters of needles. The bad thing is that they hurt more coming out (such as IV lines) then going in. See with the anaesthesist how Amber is going to be put asleep, and how pre med injections are going to be given. A lot of needles are given when you are asleep and Amber will most probably have a self pressing PSA,which is as much benefit psychologically as it is for pain SOmething else I would suggest taking is a joke book, or a happy book of some other kind, to take Ambers mind off pain (it hurts like buggery when they turn you, I often cried)

I would like to leave you for now with something funny for Amber to look forward too in the future, I still get much entertainment from it myself. AMBER WILL SET OFF THE METAL DETETECTORS (either the overhead one or definetly the swipey one) I was in Sydney last year for the National Guide Jamboree and in Perth I set off the swipey detetector and when coming home from Sydney I set off the overhead one; which entertained me greatly because they had me take off my belt, shoes, glasses, badge etc and I still set it off (I told them why after that, but it was fun to play along).

:-) Alison

[mumof5]

Well 13 hours after leaving for the pr-op we finally got back home. And not with the news we were hoping for. During talks with two of the doctors and after they went through Amber's father's autopsy report, they have decided that she needs to have a heap of heart tests done in case she has a similar problem. Thay pulled me aside and said that they are worried her heart will not stand up to the surgery. So now instead of leaving on Wednesday morning for surgery at 9.30am we have to go tommorow morning which Amber (and me ) is quite upset about because we thought we would have a day to say goodbye to the other girls. Amber and Shayleigh (3 yr old) are exteremly close. So tommorrow is going to be hard. I just hope these tests go well and they say the surgery can go ahead. Now that I've got that out. Amber has never worn a brace. And thankyou Alison for your hints and ideas hopefully it is helping more than just us. I will try to keep in touch while we are in hospital they have an internet area, maybe it will fill in time for me, maybe I won't have any free time. I don't know. Right now things are just hard. But we are trying to keep positive. Amber's lung function was 80 percent so that good something in her favour.
Bye for now
Cheryl

[Alison]

dear Cheryl

I'm not sure if this is the right thing to say, so I'm sorry if it sounds offensive but it is really, really good (but also bad as well because your hearts must be sinking, but try and stay positive i know it would be very, very hard, I know if I was in the same situation I would be extremley upset) that the doctors are being thorough and going through every "body" angle to make sure that Ambers body is ok and are going through doing all the tests to make sure that the surgery can go as smooth as possible. Amber lung function is in her favour, because after surgery, the better your lung capacity, the "easier" it is for you to get your lungs to breathe again

And now .... even though I have only known you for a "short" time, and only know a few short things but when I read your news my heart just sank for you and a pit fell in the bottom of my stomach and is still there now :-(. I am not one to pray but I have all the parts of my body that can be crossed :-) for you and I am hoping very, very much for you and Amber that it is the third time lucky. It would have been a huge shock for you to get this setback only a few days before surgery.

I have thought of an idea for saying goodbye (even though there is no easy way to say goodbye), Especially for Amber and Shayleigh, and the distance from Newcastle to Sydney would make it especially difficult (I have a rough idea of how far it is from Newcastle to Sydney). To make a pair of family huggie hands (i know it might sound corny, but I think it may be "effective", which are meant to represent a hug for someone to someone else when they can't give it themselves. Get Amber and you to make one for your girls, which they can put in a prominent place and get your four girls to make one for Amber, which can be hung over her bed. And when you get home from surgery they can be reswapped. It must be very, very hard to have to know say goodbye and having these hands reminds each person visually that the other loves them very, very much. With the distance I would suggest also taking a couple of photos of the family for Amber.

Thanks for telling me that Amber never wore a brace. It puts a few "different" ideas into my head on what it will be like when Amber gets home from surgery. Ideas are also forming in my head for the long term as well.

Now a message for Amber:

If you need to cry, cry and let it all out. There must be a sledgehammer sitting in your chest right now and you don't know what to think, and there must be a lot of jumbly thoughts racing through your head right now. All my thoughts are with you, I remember how I felt well, especially before surgery. There are feelings of the unknown, scared, curious, devestated, fear. And this setback must be such an additional shock. I hope with all my heart that everything goes OK tommorow and that surgery does go ahead

Hope it goes well tommorow

Alison

[Peggy]

Good Luck Cheryl and Amber. Keep the faith. I'll keep you in my prayers.

[RUSSELL]

hello and i just wanted to write and say good luck with your surgery and recovery

[mumof5]

Thanks to all of you for you thoughts, praters, good wishes and messages. Amber's heart tests showed that she has a very strong and healthy heart. It was such a relief. The surgery went ahead on schedule. We are now back home. Things went really well surgically. They fused from T4 down to L4 and took out about 6 cms (3 inches) from the ribs at T8 -12. That was alot of bone and they still took some from her hip. Maybe that's because pre-op she was 174cms tall. They did an arm span measurement and said she should be around 190cm ( I am about 185cm). She is very relieved that post-op she is still shorter than me. Wehad a couple of mishaps in hospital. One where a nurse pulled pillows out from behind her without giving any support, yeah Amber fell back. Then her morphine was stopped 2 days earlier than planned because her vein collapsed and they had to take out the cannula. This happened at 3am. They didn't want to put another one in because she was asleep, when she woke they gave her panadol and codine until they could check wih her doctor. He said if she coped all right to leave the morphine off. She went really well and has not needed a great deal of pain relief since. She has a bit of shoulder pain, which seems to be above where they took the ribs out. She noticed today that she has 2 places that she can't feel properly. Does any one know what this is and will it stop.Shesays it's not numb just like half feeling and funny. She is getting stronger every day and is much happier now that we are home. This afternoon she even asked me to help her walk down the front to the letter box as she had so much energy. That's gotta be good. Shayleigh is a little upset that Amber can't walk very fast and can't go out the back to play. But the way things are going it won't be long.
The operation took 6 1/2 hours and she spent 19 hours in ICU as she was 'a bit cold' after the surgery. They gave her 2 bags of "packed cells". Since then she has improved very quickly. Thankyou again for all your support to everyone. Peggy how is your daughter's progress going? Well I hope.

[Alison]

My smile on my face right now is rather huge :-). I am so happy that everything went well surgery wise and that Ambers attitude continues to be unsquashable, which can often be one of the hardest things to keep after such a major surgery. Have you measured the scar yet? After surgery the two things that I really wanted to do was measure the scar and see how much I had grown. How is all the around the house stuff going? Is Amber having any difficulty "adjusting" to moving different etc. You didn't mention exactly where the numby patches are (would it be a good way to describe it that it is not numb as such but it almost like a dead area, that when you scratch it it isn't reactive). If it is on the front of Amber's, such as on the thigh or the leg the most likely explanation is that it is positioning during surgery related, I had a "dead patch" on my thigh after surgery, and it eventually gets . What I mean by this is that during surgery, because you are on your front for such a long time, there is a lot of pressure on your front (And with more weight distribution on the legs because of how you are angled, this is what my surgeon said when I asked) you often end up with numb patches on your front, post surgery, similar to the "dead legs" after sitting cross-leggeded for too long. It will take awhile, but it will eventually "go away". If it is numb patches on Amber's back my theory is that it is the back's reaction to the stress of the surgery. During surgery because there is all the cutting and rearranging and taking out of stuff the body it's the backs way of coping. Almost four years on from surgery, I still have a few numb bits on my back, but pretty much full feeling all over my back. The back "numbness" took a lot longer to go away, it was only in the last year that feeling started to come back.

The shoulder pain is also most likely from a combination of the ribs being taken out and also from the amount of muscles that are cut and "resewn" during surgery. In the surgery they cut all muscle away from the spine, and almost pin it back/out, then after surgery they are reattached. Mum started giving me backrubs when we came home after the operation. I found them to be of help in relaxing my shoulders and helping unstiffen them a bit. I still get them today.

A thought has come to mind, that might be of assistance in the scar healing process. A suggestion in helping the scar to heal (it was also a nice "backrub" for me and we found it to be of great assistance to the scar (it was a sorta backrub, more of a scar rub), was to rub Viatamin E oil into the scar. I don't know why it is good, as it was one of Mum's and Dad's ideas, but I thought it could be of some help.

I agree Amber's energy is definetly a great thing, I am so glad that everything is going so well, and I bet that a big weight has been lifted from yours shoulders as well as Amber's

Alison :-)

[mumof5]

Amber's "numb" patches are on her right thigh (on the outside) and on her lower left rib area on the front. She says when she rubs her fingers over these areas she can sort of feel it but it feels different. She slept really well last and is rolling herself to both sides in her sleep. Every time I got up to check on her she was facing a different way. She has woken with her shoulder burning. I hope this does go away soon as I can see that it is getting her down. But everything else is very positive. She is not wanting to stay in bed. Today she has said that she wants a shower, get dressed, go for a walk to the corner of our street then come back and try out the stairs. I hope she doesn't push herself too far. I guess it's up to me to make sure she stop if she looks tired. She is still getting a little dizzy when she moves upright I think this will get better as she starts to eat more and move around more. I have low blood pressure and get dizzy just getting up from a chair so maybe that has something to do with it as well. We have an old lounge chair in her room, I was worried that it would be bad for her as it is quite low and very squishy, but she says it is the most comfortable chair she has sat in since the op and yesterday was on the lounge more than anywhere else. Pre-op I don't think she ever sat in it. While Amber was in hospital before she was allowed to get up I gave her a pedicure complete with creams and a massage. She loved it. All the nurses wanted to know if I would do them too, Amber thought that was funny. Today I'm going to shave her legs for her. She is worried that she will never be able to do it herself. She has been trying out how much movement she has. Not much. I think she thought she would have a little more than she does. She said I used to get to my knees sometimes past, now I can't go past my hip. Is this it or as she recovers will she be able to a few more cms? She has been laughing about it with her sisters, so I don't think it bothers her too much. Maybe she is just so happy to be home and with her sisters again that nothing else matters until they start to annoy her. She said to me last night that she doesn't feel so much like an invalid now even though she still can't get her own food. She is so positive it's amazing.
To anyone that is just browsing this site and not posting as I did for a while. I hope that this is helping you and that if you have questions or need support that you do post as it really does help. Even if it is just to get stuff off your chest.
I'm am going through some legal stuff with my youngest daughters father, He served me a court summons the day after we got home. I'm supposed to be in court in 5 days time.(Yeah right) Now because my father doesn't think I'm doing enough to fight him (my ex) my father is no longer speaking to me. Which now means that I have no family support close by at all. So an extra big thankyou for all the support we are getting here.
Cheryl

[mumof5]

I forgot to add ( because Amber called me back downstairs) We came across an oil that is even better than vitamin E. It is emu oil. It's not very easy to get and is a little expensive. But a little bit goes a long way. We use it : itchy bites, grazes, varicose veins, acne, any itch or rash at all. Amber still has a bandage over her cut, we get it off next Wednesday. In the hospital they changed the bandage I think it was day 4 I took a photo of the cut so that Amber could see what it looked like before it had healed too much. She did want to see the photo as soon as it was developed. She said it helped her to see where it was and how long it is.
I have an idea for those about to have sugery, if you live in a two storey or a large house, for when you get home. I had an old baby monitor that I had packed away. It's a portable one. It means that by using this I can do what I have to do and no matter where I am I can hear exactly what is going on and if she needs me she doesn't have to yell and hope I hear her. It gives a bit of extra security to both of us.
Cheryl.

[Alison]

Cheryl,
I might have read it wrong, but I just want to check, that when Amber is "checking out" how much movement she has, she is saying that she used to get to my knees, sometimes past, now I can't go past my hip, that she isn't bending over, is she. Because bending over is a big no, no this early after fusion (not until after the first six months, because the fusion doesn't start to become solid until then).

An idea that might help with the burning shoulders is to fold up a small tea towel/ towel or put a small wheat pack (those ones that you heat in the microwave) under each shoulder (or on the side that she begins sleeping on). One of the biggest problems I had with sleeping after surgery was shoulder soreness/positioning, because they were at a completely different "angle" to what they were in a brace. And by using a heat pack under my shoulder it seemed to "relax" my shoulder a bit, and also reposition it slightly differently.

I do know that with a lumbar fusion with some thorasic, that the movement you regain is not as much as only a thorasic fusion (but not having a fusion down to L5 works in Amber's favour). However I do know that the movement that I have regained (my fusion is very long for a thorasic fusion) is more than a lot of people I know that have had short fusions (ie two to three vertebrae) Against my surgeons liking (he works with many kids who are in wheelchairs and are severley disabled, and has had many bad experiences with allied health personnel) my parents found a physiotherapist that specialised in scoliosis (muscleoskeletal physio), and I began to see him between the three and six month mark after surgery. At first it was nothing big movement wise (ie just simple movement and stretching, and working on my walking). The first time that I went to him I cried, because I was lying on the table and he lifted my arms up, to check my movement and worked on moving them towards my head it hurt like buggery because it was so stiff), and then once I was given the ok by my surgeon to go back to more physical activity (at the one year mark from memory), we began to do more work on a physio ball. Even though it was expensive, my parents say that it was doubley worth it. I found it an absolute godsend, in reworking my muscles, and helping me move in the best way possible. I'll give you a little more information when Amber reaches the six moth mark.

My movement range took a very long time to come, but now I can bend forward and touch my toes, and this it too most people's shock. They don't believe that I had surgery unless I show them the scar. It took a long time to be able to bend and shave my legs properly, from memory, I think I got around it by when I was sitting down, either resting my leg on the bath (we have a combined bath/shower) or I got around it by bringing my leg up close to me and doing it that way.

I read your reply that you gave to my thread that I posted in another forum, and it did trigger my memory to what I found when I began to wear a bra after surgery (I didn't wear a bra before then because I had been in the brace for so long, and with only on proper shoulder blade (it was a very pretty one sided hump) I couldn't wear them anyway as they just fell off my shoulder). Something to think about/ check is that the closure on the bra doesn't irritate Amber because it is directly across the scar or feel like it is digging in. You might want to check that the closure has a "padded" bit touching Amber's back, or a way to get around it if it does itch is to sew a thin bit of felt onto the bit that is touching the back.

With the description Amber gave you of the numb patches, my best theory is that they are an after effect from surgery/the bits of rib being taken out. But the rib one is probably worth checking with you surgeon about when you go back for a check up.

Amber's enthusiasm is amazing, she sounds like a remarkable girl.

:-) Alison

[Peggy]

Hi! I am so happy for you that everything went well for Amber. It sounds like she is having a great recovery also! Know you must be so relieved. Tell her I said Congrats and good luck with the rest of her recovery. It is wonderful that she is so positive and wants to do things on her own. Again congratulations!!!:)

[dapsbounce8]

mumof5:
I had surgery last february and I know exactly what Amber is talking about with the numb patches. Even four months later, all around the area where a few of my ribs were removed and along the scar the skin is numb. I can feel those areas when I press on them, but if I scratch the skin, I don't feel it. This is just the anesthesia left in the body. Sometimes it can take up to a year to go away!

I also had a lot of pain where my ribs were removed - that was much worse than the back itself! If her pain in this area increases, I would recommend a heating pad...this really helped me.

Good luck.

[mumof5]

Don't panic Amber tried to slide her hands down her side and not very hard at that. I think she is too scared that she will do damage if she tried too hard. She knows not to try to go forwards even though she wants to know what she can and can't do. She won't knowingly do anything that could cause a setback. We'll try the heat pads. I have two here. In the past I have used a lot of magnet therapy on myself and got great relief, I don't think they would be too helpfull to Amber though or am I wrong? My sister has just become qualified in bowen therapy, remedial massage, sports therapy and heaps of other things. The only problem is lives 1500km's away in QLD or we could get free treatments. I will look into who is around here. Amber doesn't seem too have too much trouble lifting her arms. She can get a singlet top on (with help) with not too much problem. She can't do it on her own though. When she is proped up in bed she can 'lay' with her arms almost behind her head. She can brush her hair and clean her teeth with the only problem being spitting into the basin. At the moment the bra issue is ok, she is comfortable in a cami. Most of the bras she has do have some padding behind the clasp. But if these are no good for her there are a lot of front closing ones on the market. Amber's attitude is so positive she is an inspiration to everyone. I am amazed at much she is improving everyday. She is doing so much on her own I am frightened that she will push herself too far. I don't like hanging washing on the line in the backyard as I am worried that she will use that time to try and sneak herself up the stairs. The doctors told her to wait a while and she says she has. I keep telling her I think they mean a little longer as her sugery was only 11 days ago. The only thing she has a problem with is the shower. She is and always has been a very shy and private person. She doesn't want to shower as she doesn't want me to help but knows she can't manage alone. I talked her around yesterday but I think we'll go through it again to day. Yesterday she got very itchy under the bandage, I called our GP and he said to take it off and he would come look at it later in the day. The cut looks fine and we think the itch was from the tape. Now she is wanting the bandage back on as she says it feels too unprotected without it and she is worried she will rip it open. I hope this won't be another setback for the shower.
Cheryl.

[dapsbounce8]

I really didn't like the whole shower issue either. I had my mom wash my hair for about the first week at home (second week after surgery), but only if I wore a bathing suit while she did it. I also had difficulty doing my hair, so I got into putting it into a side bun...it was very easy to do, though not very stylish :D .

Cami bras are a good idea for now. I tried wearing an underwire several times, but the pressure on my ribs caused me great pain. I was never very worried about the scar ripping open though.

Good luck, I hope I've helped.

[mumof5]

Amber's hair was just below her hips. When we were approaching the second of the dates that we were given I spent almost 8 hours plaiting it for her so that it would be easier to look after. She left these in in for 7 weeks. Between that date being cancelled and getting the final date she decided to have it all cut off and it is now above her shoulders. Although she can brush it she can't wash it and covers herself with a towel while I do it. Styling it isn't a priority for her a the moment (though it was a big one before surgery) I guess that will come. She had a rather quiet day yesterday, I think she over did herself the day before. She was a little bit cranky that her body won't keep up with what she wants to do. She did say that in hind sight she was glad I held her back on a couple of things, namely the stairs. She said ahe didn't realize that a good day like she had would affect her so much the following day and she will have to "listen to mum" and pace herself. It was nice to hear her say I was right but I wish it had been for something other than this. All said she is still very positive and looking forward to getting outside. The only trouble now is rain is forecast all week and it's very grey outside already. Well here's to laps of the garage!
Cheryl.

[mumof5]

I forgot to say Pre-op Amber was 174cms (5ft 81/2in) Post-op 180cms (just under 5ft 11in). She was very relieved that I am still taller than her. (I am about 185cms).
Pre-op they did an arm span measurement saying it was a good indication of what your height would be if you were straight. Amber measured 190cms. Needless to say she panicked. That's around 6ft 4in. I think that the measurement was high because of her rib hump. I have checked it again today and I measure her arm span to approx. 182cms. Has anyone had this experience?Cheryl.

[Peggy]

Hi,
Hope Amber is continuing to progress well. My daughter STILL won't take her own shower alone. I stand by the door. She is so afraid of slipping. Tomorrow is the day I am making her do it alone. Sometimes it is sooo hard being a mom! We never did that measurement of the arm span. My daughter is 5'11 too and afraid of growing more. In answer to your message about having friends cheer her up...she is a total loner and really has only one friend that she spends time with and she has only talked to her once since the surgery. Doesn't want to have her over at all. It would be so much easier with peers to help. But she is the way she is and I can't change her. I just hope she changes socially as she gets a little older. Good Luck with everything. Its great Amber has such a good attitude.

[mumof5]

Amber is a bit of a loner as well and won't even ring anyone from school to let them know everything went well and that she is home. She had her first outing yesterday. It was very funny watching her get into & out of our car. We have a people mover and she has to climb up to get in. But our 3 yr old had to go to pre-school and so Amber had to go. We are going again today. That makes 4 trips a week that she has to do 'cause I won't leave her home alone. There is a bridge near our house that has started to sink and I am taking her to it today. Everyone has said that you can really see a bow in it, she is excited to see it.
Amber came up stairs for the first time today, I think she was getting annoyed that I wouldn't let her come up before. But her op was only 2 weeks ago today.
She is now using the excuse that it is too cold to have a shower. So I am going to put the heater for a couple of hours so that she can't complain. Maybe I should tell her every day that she can't go upstairs until she has a shower!
Good luck Peggy, things can only get better. If I think of anything that might help I'll let you know.
Cheryl

[Peggy]

Hi,
I don't know if this would help you but this is the way we do our showers. My daughter wears a long white t-shirt in the shower and washes under it. Takes it off just as she is getting out so that she isn't embarrassed. Funny I know, but it works. I don't blame you for not leaving her alone. That is good to make her go out. Wish we had a bridge about to fall here! Well, no I guess not really :). But would like to have something interesting to bribe my daughter with. Good Luck to you too. By the way, what is a people mover? A van?

[mumof5]

Our 'people mover' is an eight seater van. We were only out for about 30 minutes this morning and when we got back Amber sat down then a few minutes later got up in a lot of pain and said I have to lie down. She had a pain in her side just above her hip bone. I gave her pain killers and she stayed in bed for a couple of hours. She says it's gone now. Thank goodness cause she looked pretty bad. Maybe we just have to be patient with this.
Peggy
Amber has suggested that you let your daughter choose where to go and within reason try to get her there. My suggestion is if you can think of a special treat ( ice-cream, burger, etc) that she only gets if she 'goes to get it'. Or maybe if there is something she really wants to buy, you could give a monetary reward for getting out and about. You know the further the more she gets. (hope she doesn't read this and then send you broke) Good luck.
Cheryl

[mumof5]

Amber has just asked me to post this:
When I sit down I can hear my back 'cracking' but I can't feel it, so I can't tell where it is coming from. Has anyone else experienced this?
Cheryl & Amber.

[Alison]

Can you try and describe the cracking a bit more. Is it more of the "cracking noise" that you can get when you move your wrists around or is that cracking noise that you hear when people twist and crack their back (I've never actually done this one myself, but I've seen many people "twist" and you can hear this cracking noise going down their back). Or is it more of an "empty" crack.

I agree with you that the differences in Ambers arm span is probably because of how they measured it (across the rib hump). I just measured my arm span by going across the top of my shoulders and then by across my back (which still isn't even on both sides and the measurement was different)

I know that people mover vans have pretty comfy seats, but an idea I have that you could try to make it less "back achy" afterwards could be for the moment taking a pillow/two pillows in the car ie one long one at her back and one on the seat. It might give her a bit extra support.

How was the bridge. Has it collapsed yet? It sounds exciting, I have never seen a bridge collapsing

Alison

[mumof5]

The cracking: Amber says it is more like a hollow - joint crack. It doesn't happen often. she thinks it is just everything settling. But says because she can't feel it is hard to describe. Amber doesn't seem to concerned and I don't know if I should be or not.
I don't think our bridge will collapse. It is about 50 years old. One of those opening span ones. It is sinking into the channel that it is crossing. There is a lot a ground movement around here. The water table is close to the surface and it is gradually sinking, so everything on top is going with it. Alot of buildings have big cracks because of. Maybe that's what happened to the leaning tower of Piza. She enjoyed going to have a look.
We have not long come back from pre-school and she does seem to be sore when she gets out of the car. Standing around is giving her the most trouble though. She doesn't/can't stand still and shifts her weight from foot to foot. Is this normal?
Cheryl.

[Alison]

As long as it isn't causing her pain, I don't think the "Cracks" are something to be too concerned about, but monitor it over a period of time and get it checked out if it continues or starts to give Amber pain.

Is Amber's difficuties with standing still more of a can't stand still because she feels fidgety or is it more of feeling faint. If it is a feeling faint it is most probably effects from the surgery. If it is more of a fidgety/wriggly sort of feeling, I have never been able to find/come up with a reason why, as I experienced a similar problem with wriggly/fidgetiness inability to sit still when sitting at my desk in school (when I went back after surgery). I asked my surgeon and then the physio about it many times, and they were at a loss to explain why.

My personal theory on it is that the body is trying to get used to being in a different position, but the brain is trying to tell the body that it is still in its olf position and mixed signals are coming through the body. I never quite got used to sitting without fidgeting (I have had special exam arrangements since year 10, where I have had an ergonomic chair and been able to get up and move around) but it did get better after time. My advice for now is to for Amber to try standing with a bit of a wider base (legs a bit further apart than shoulder width) and if she has to stand still for any length of time to wriggle her toes around.

Alison

[mumof5]

Amber says it hurts her to stand still. She gets pain in her hips which is sort of eased when she moves around. Maybe this is because they went to L4 and took a bone graft from her hip as well? Has anyone else had this happen? She is not sleeping well and gets up very stiff. She rarely takes anything for pain, preferring to move around for relief instead which is good in one way but also means she doesn't rest much. She is getting annoyed that she can't get up and just keep going. It's not her physical limitations but the pain, stiffness and tiredness. She remains positive and is happy. Her Aunt from QLD has just sent her a beautiful jigsaw puzzle of two dolphins. It even glows in the dark. I think our table tennis table may have a new use for a while. Maybe this will help with her standing.
Cheryl.

[Peggy]

Hik
My daughter has the pain in her hips also. The surgeon said this is because when the spine was crooked the kids leaned on their hips differently. Now that they are realigned correctly it is hard on the hip muscles because they aren't used to being straight! This will pass with time. It has been 6 weeks since my daughters surgery and she rarely has the hip pain now. She still gets uncomfortable when she is on her feet for a long time. Remember this is a huge surgery. It takes most kids 3-4 months to feel "normal". And longer than that to lose most of the side effects. Tell Amber to keep her chin up! And thanks for the hints about bribery, but unfortunately I've tried it all! I think she is getting more positive each day though. I've been doiing gardening the last few days and leaving her alone inside with her brace on and she is getting around without fear. Just needed a little push. Thanks again for the help. Hope you two had a good day~

[AndreaElle]

Hello!

I do see that you have had many replies, however, I just joined the site today and wanted to tell you my story!

I actually had a similar situation before my first surgery. I was 15 years old and had mono for months! Finally, my surgeon decided to go ahead with the operation even though I had the mono.

I am fine! I am now 27 years old and honestly quite happy that I made that decision to have the operation.

Before and after my surgery I had many people that wrote me letters and were able to identify with what I went through and was going to go through in the near to far future. I think that is a very important part of your daughter's overall look at the whole situation. As a mother, I think you should be proud of her strength, too! She may, indeed, be worrying about it-you have to! However, she could be handling it in worse ways, I'd say!

If you ever need anything at all..let me know!

Much luck and success and love to you both!
Andrea in Tucson, Arizona USA

[Alison]

Hi Cheryl,

This is simply a curiosity question, why did they take bone from Ambers hip instead of/ with bone from the bone bank. A glow in the dark puzzle, now that's something that you don't see every day, SPECKY :-) Thinking back i hindsight and after reading Peggy's thread, I'd have to agree that Amber's achiness in her hips most likely relates to that he went to L4 (I know that people find that the sorest part of their fusion is the top and the bottom and it spreads to the bits near it. Another question, "how" is Amber sleeping, what I mean by this is she taking pain killers before she goes to bed, is she on her side, is there any pillows around supporting her,

I think the most frustrating thing after a fusion is that your mind has not changed, you want to do lots, but your body just won't do iit or it'll let you do it, but you end up very sore and stiff.

Alison

Hi Peggy and Cheryl

This is a bit to Cheryl and a bit to Peggy (I am typing this between classes otherwise I would have reposted). Perhaps your daughter Peggy could wear flip flops/ thong shoes (I don't know what they are called in America but in Australia this is they call them) when she was in the shower it would give her a bit more grip/security on her feet in the shower.

I wish that I could relate to having my hips "Straightened". There was only a degree of correction from my fusion as it was more of a holding operation. But I like being "Crooked" (it has been a part of me for a very long time, and it is a part of what defines me) How was the correction that Amber gained, or your daughter gained Peggy from their surgeries

Betta rush class starts in 5 minutes

[mumof5]

Amber will not take pain killers at all, unless she is in a lot of pain that moving won't help. I have explained to her that if she takes them her body will be able to concentrate on healing and not fighting pain. She's just stubborn I guess. In bed she starts off where she is most comfortable, that is left, right or flat on her back. She can roll herself now. I get up every couple of hours to check on her, help her roll rearrange pillows, ask her if she needs anything for pain etc.. When she is on her side I put pillows behind her. Sometimes when I go in to check on her she has rolled right over and is cuddling the pillows. She seems to be comfortable but I'm not sure how honest she is being. When she gets up she is stiff and slow and I can see the pain on her face, but she says I'm fine and if I ask if she is sure she snaps at me. I don't know how to get her to understand that some pain is OK but she can take stuff for it when it is bad. The nurses told her that she should take something before it gets too bad. So it didn't sink in from them either.
I don't know why they took bone from her hip especially when they took out so much rib. In the hospital I was so tired and so much was happening I just didn't think to ask and we only saw the surgeon twice for a few minutes. I'll ask at her 6 week check. As for correction I'm not sure as we were discharged the same day the surgeon came to look at the x-rays. But from what I saw they looked pretty good.
Andrea,
How far did your surgery go Amber's was T4 -L4. Years down the track what differences do you notice or are aware of? Do you have any pain now? Have you had any problems?
Peggy,
What about one of those rubber bath mats? You can get square ones here that are for the shower. Or maybe a rail in the shower. Hopefully all our suggestions will be too late and she will have her "shower legs' (confidence).
Best wishes everyone.
Cheryl.

[Alison]

I know that this is still a form of "pain killer" but it is not a pain killer as such. It may be something that Amber might like because it is not addictive/not as dopey feeling as a pain killer. What about trying a muscle relaxant tablet (the only name that springs to mind is Mersyndol but there are lots others) or trying something from a health food shop (they have stuff that aid restful sleep, or muscle relaxing or something like that). I know that Mum takes them every so often and she says she doesn't feel too dopey from them.

Alison

[dapsbounce8]

Hello all!
I know this is an old topic, but I wanted to bring up the "cracking" noise in the back. I had surgery about four months ago (has it been that long???) and I occasionally heard that same noise, just from sitting down. Its completely normal, so don't worry about it.

About the painkillers: I am personnally opposed to painkillers because they only cause more problems...especially the strong ones. They made me nautious, constipated, and "out of it." If Amber doesn't want to take the pills, don't make her, as long as shes not in extreme pain without them. The sooner she can get off the medications, the better.

Good Luck!

[mumof5]

I got Amber to take 2 Nurofen last night before bed. She had a much better night. At first I asked her if she wanted to take something and she said no. I asked her if she wasn't in pain during the nights why wasn't she sleeping. She said she didn't know. I said well you can't get comfortable, your moaning and groaning constantly so somethings bothering you. She said she took the tablets just to shut me up. This morning she thanked me for making her take them as she slept better. Every time I checked on her during the night she looked peaceful.
The only pain killers I have to give her are Panadol, Nurofen and the new Nurofen Plus ( which has a little codine in it) The last one is only for when she is really bad. Even if I had anything stronger she wouldn't take it.
I'm glad the back 'cracking' seems to be 'normal'. It's so 'nice' when you're sent home not really knowing what to expect. I'm sorry if I am a bit all over the place. Shayleigh had a high temp last night, so I was up with her alot during the night, then she crawled into my bed and snored like a freight train. I'm running on auto pilot today.Amber won't get out of bed (it's nearly 11am), she says it's too cold and she has no reason to get up. I have to wait around for my solictor and Amber said that's not worth her getting up for. I'll take her out this afternoon though.
Cheryl.

[Alison]

I hope Shayleigh is feeling better. I agree that there should be an "instruction manual" (that's the only way I can think to put it even though its not quite what I mean) for what it is like after a scoliosis surgery. But unfortunately most orthapaedic surgeons/ orthotists have never worn a brace, had the scoliosis surgery. Thus never experienced it "life" they only know it medically, not the realities, and send you home almost "blind". I think that forums such as these are an absolute blessing for the "realites" of scoliosis experience. That we all tell it like it is. Having experienced scoliosis for my whole life, is part of my inspirtation in aiming towards studying Prosthetics and Orthotics next year at uni. I have never felt that when an orthotist says "I understand" that they reallly really "understand". I will be an orthotist who can say I understand, this is why, and this is how. I think that surgeons who do scoliosis surgeries should spend a day in a backbrace (well though it not practical, it does make me smile)

Alison

[dapsbounce8]

Haha, good idea Alison.

[mumof5]

Yes, thankyou, Shayleigh is feeling better. I agree this forum is wonderful, otherwise we would all be constantly ringing doctors asking all those 'stupid' questions. But if you don't ask you never no if it is normal or that you are doing the right things. Speaking of that Amber wants to lay on her stomach. Is that allowed. I never thought to ask her surgeon, I guess I thought she would be in too much pain to even want to. 99% of the time I can't lay on my stomach as it 'jams' my back and I can't get back up, when I do it takes hours for me to be able to walk again. I don't want this happen to Amber and neither of us want to risk her doing any damage. What does every one think?
Alison I can't believe you'd only make them wear a brace for one day! It would have to be at least a week to get the proper feel of it. Maybe it should be compulsory for them to read forums like this and when they are in training to have more contact with patients afterwards so that they can get more of an idea on what these kids are going through. Good luck in your studies. I bet you will have people from everywhere looking you up in years to come. What better recommendation, I've been there. Again, Good Luck. Amber had two car trips yesterday. We went to get a 'mobility parking permit' it will allow us to park in the wheelchair only parking bays so that she doesn't have to walk as far when we need to go to shopping centres etc.. Last time she was in the car she suffered the next day, so I hope today is not too bad. I have to go our chooks are fighting and I will have to break them up before they wake everyone up.
Cheryl.

[dapsbounce8]

Lying on the stomach is not allowed post surgery because it puts too much stress on the back, so I would definately say no.

By the way, what are "chooks"?

[mumof5]

Thank you, I didn't think she could lay on her stomach and I told her so. It's good to have some else backing me up. How long are you not allowed to for?
Chooks you know chickens, they lay chicken eggs and you eat them. We have 5 pet ones, we eat their eggs but would never eat them. We also have a dog, a cat, fish and a pet rat. (at the moment).
We just got back home from a short outing. I was looking at buying a new mobile phone at a shop 5 minutes away from our house. Amber got extemely pale and pasty, shaky, dizzy, she said her ears went funny, she couldn't hear properly. I think she came very close to feinting. I'm friends with the shop manager and he got her a chair. She was OK after a few minutes. When she got up she said "how embarassing". Now she knows why she should have someone with her all the time. At least it hasn't made her want to stay at home. But she is laying down now.
Cheryl.

[Alison]

How is Amber feeling now? I would agree with no lying on your stomach. And also too stressful on your back, and not a good idea especially because when you are on your front you tend to lift your head/turn your head, which places the same stress as twisting. As for when again, I've never been able to do it comfortably, because my fusion goes high. But my best guestimate would be at the six month mark, when Amber is able to go back to doing more things, and definetly a year.

Alison

[ellen]

hey mom of 5!! i had a question...about your daughter like almost fainting n tha store....was she able to see or likw was it all blurry? b.c like i had surgery oct 6 last yr and like since then i have passed/blacked out 3times....one on easter one time before that and then like a month or so after easter....and like i went to tha ER and liek they didnt kno what was wrong, so i hadto do a catscan of my head and like everything was normal....n i was just wondering like if your daughter was on morphine after her surgery.....b.c like i dont kno im startin to think thats y i blaked out....but did u take her to tha doc about it?! sorry like im not trying to like scare you or anything i was just wondering thank you so much! much <3 ~*ellen*
my email address is LilCutiPie_07@yahoo.com and my AIM sn is legalblondelle21
thank you so much again!!
and i hope your daughter is feeling better and has a speedy recovery

[mumof5]

Amber said yes her eyes did get blurry & sort of heavy. I'm sure that it was because she hasn't been eating much, her blood pressure is a little low, her surgery was only 17 days ago and she was on her feet for awhile. A lot of things combined to make her almost feint. One of my other children had a problem with passing out and collapsing, she has been through the cat scans and epilepsy tests etc. I'm positive what happened to Amber wasn't that. Amber was on morphine for 2 1/2 days. She is feeling a bit better tonight though she is still pale. Thanks for your concern. What was your problem is everything OK now. How does your back feel this far out from your surgery?
Cheryl.

[Peggy]

Hi,
Just a comment about sleeping on your stomach after surgery. My daughter does and has since right after the surgery. Surgeon never told us she couldn't and it is comfortable for her. She always slept that way before the surgery too. We went to the movie yesterday! Yeah. She wanted to go home directly afterwards but it is a start! Good Luck everyone!

[ellen]

hey cheryl!! my doctor never found out what the problem was, it hasnt happened for a month now, so i hope it wont happen again....my back is doing great now. its almost been 8months i was walkin fine 2 and a half weeks after my surgery and was able to be left alon tha 3rd week. i always had a phone with me incase sumthing happened, and tha elder neighbor would come by and get me sumthing or watever...i felt bad though having her come everytime i accidently dropped the remote to tha TV so i decided i would bend down and get it myself. mom got mad at me but i told her i was fine and it didnt hurt....i was tired of relying on other people to do things for me although it was pretty funn having my sisters wait on me hand and foot....by like tha 4th week i was doing great iw as ready to go back to school...i started my tennis back in december at tha beggining of tha 2nd semester and everythings fine now! im still restricted frum contact sprots i think, yet i have been playing softball every friday night for liek tha past 5weeks! at first my mom wouldnt let me but she felt bad and decided that everything was fine and that i could play....tha other team was told that i had recently had back surgery and played a little bit easier on me and liek didnt tag me out.....which took out all tha funn but o well....sorry this is so long, i just keep babbling....hope amber is doing better! ill send my prayers!! much <3 and take care ~*ellen*
if you have any questions feel free to email me at LilCutiPie_07@yahoo.com

[mumof5]

I'm glad you are doing so well. I can't believe you are doing so much sport already. Good work.
Amber is doing fine this morning. We watched the first two Lord of the Rings DVD's yesterday and had some friends come over. She wants to watch the last one today then I'm going to get her out somewhere again. Hopefully she won't try to feint again. At least having four sisters there is always someone close to her and can call me if need be. The baby monitor I am using is wonderful, it just gives a little bit extra security. Amber is managing the stairs really well and is becoming indepent in every area except washing her hair and shaving her legs. What are people veiws on showers versus baths? We have both separate but she is having showers while sitting on a chair.
Cheryl.

[mumof5]

Peggy I wasn't sure were to post this reply to you so I figured you'd find it here.
How wonderful that she went out to do something. That will make it easier to do it again. It doesn't matter that she went straight back home. Maybe next time she could see a movie then go for something to eat. Is her problem that she doesn't want people to see her? I don't know much about braces and how noticable they are but if that is the problem would clothes shopping help? I guess it warm there at the moment (we are almost winter) otherwise she could get a new jacket.
Anyway you must be so proud of her. I know I am. Congratulations, keep up the good work.
Cheryl.

[Alison]

With something like a bath, it would take some trial and error, to see if Amber could "manage" sitting for that long in a bath. What I mean by this is that she might find sitting uncomfortable or perhaps even impossible (for the moment), if it does work, she could probably only be in their for a short period of time (because sitting cross legged and/ or kneeling buts stress on the lower back/ espe towards tailbone area,). It would probably be more of a sit in the bath, because "soaking/lounging" would be a little back uncomfortable. I would say, give it a go, and just make sure that someone is watching/around when Amber is getting in and out of the bath (cause it can be quite slippery). Sorry if this is a little rambled (my brain thinks too fast for my hands sometime)

Alison

[mumof5]

Don't worry sometimes my brain goes too fast for not only my hands but my mouth as well. I think we might give the bath a miss for awhile. Having a not great back myself, if we both get stuck it might be a bit embarassing to have to call for help. Everything else is going well though. I just thought I'd ask about the bath incase she wants to try.
Cheryl.

[Peggy]

Hi Cheryl,
We haven't figured out the shaving leg thing either yet. So I'm still helping. Even putting the leg on a stool in front of her is causing too much bending. Yes, I was happy about the movie. Today we are going out to the hospital where she had surgery to see my newborn nephew. A little at a time. She thinks she looks strange in the brace. Even though her clothes cover it she still feels big and bulky. Can't get her to go shopping yet. By next week she will have too because we have some graduation parties and some other things to attend. We went to the surgeon yesterday and he said everything looks great. She goes back in mid July for her 3 month checkup and he said he would cut down the time she has to wear the brace a day. So that was great news. Even though I'm sure in the fall she will still have to wear it for the full school day. But it is something to look forward too. Hold Amber is holding up ok. That light headedness is normal early on. Its easy to forget what a huge surgery they went through when they are recovering well. Takes a long time for your body to get back to normal. My daughter hits the 7 week mark tomorrow and I noticed a big change in the last week. Movement wise and confidence wise. Sounds like you guys are on the right track. Good Luck.

[dapsbounce8]

I totally understand the leg shaving difficulties - I made my older sister do mine until about two months after surgery. It was probably easier for me though because it was cold after I had surgery, so I was wearing long pants and didn't really need to shave anyway. I only made her do it right before spring break.

[mumof5]

I suppose we are lucky. It is winter here now and Amber will be wearing long things so "hairy scary' legs won't be too much of a problem. When Amber got out of the shower yesterday she looked at her back in the mirror and said to me; "Will my scar always look like this?" I said it will stay like that for a while but it should start to fade and maybe go white after awhile. (all my scars have)> She really suprised me with her reponse to that because she then said :" I like it like this it looks pretty cool, I hope it doesn't fade too quick."
She is going really well and managing most things on her own. The stairs are my major concern incase she gets dizzy, but she will sometimes sneak down and up without me noticing. Has anyone had a fall? How? What happened? I think that's what I'm most worried about.
Amber is not able to sit at a table for very long. She says it the position that she has to sit in. She wriggles around constantly after the first 5 minutes or so and is up 10 minutes later. She says that it doesn' exactly hurt but she is very uncomfortable. She is still unable to stand still for long either. I realise this is because of how low they went and her hips being straightened but how much longer until it becomes easier? Is there anything that we can do to help it along? We have no hope of getting her back to school if she sit for more than 15 minutes. I know it will come gradually but she is frustrated with herself and I don't know how to help her.
I know things are getting better because she has started picking on her sisters and they are comfortable enough with her to be giving it back.
She is not moving/rolling much during the night and I don't want to wake her up to tell her to move. Are the reasons for rolling to prevent bed sores and stiffness? Is it OK too leave her to herself? I'm up alot through the night and always look in on her anyway.
Peggy I'm so glad things are going well. I hope each day keeps getting better.
Cheryl.

[ellen]

hey cheryl!! about tha falling down tha stairs, liek i said my surgery was oct 6 and well during march this yr i fell down tha stairs pretty hard when i was at my dads house! i counted them up and it was 8stairs i fell down!! lol but anyways...nuthin hurt my back its fine i went for a chek up today b.c last saturday i was puched into tha pool and hit tha bottom b.c it was only 4ft *im 5'7* and it jaulted my back and its been hurtin since then, so my mom made an "emergency" appt. *b.c i leave for Va on sun. for 2weeks* so they got me in and took 2 Xrays and my bak is actuallubetter than it was b4, im guessing its because its longer after my surgery so my back has had more time to straiten....but anyways....just keep an eye on her b.c since it isnt that long after her surgery it will most likely hurt her back if she shall fall b.c tha bones havnt quiet fused yet!! just be carefull...take care and good luk with tha recovery! much <3 ~*ellen*

[Alison]

Before I start, I'm sorry if I use so many personal anaecdotes , but I find it is the easiest way to explain things

:As long as Amber is comfortable when she is asleep and doesn't wake up too sore it is Ok that she isn't moving much (rolling) during the night. In hospital they roll you a lot because you are not moving/immobile and to prevent pressure sores and blood clots (i think) forming. Once you are home, you are moving during the day.

:One of the biggest problems I had when I went back to school was sitting for long enough and comfortably (about two and a bit months post op) I would get bloody wriggley then would either kneel, stand up or sit on the floor (i was desperate for some relief). There are a couple of ways that we "solved" this. I'll try and explain it, but ask again if I don't explain it enough). This might take a visit to an office supply store, and some creative pillows. We found that by me sitting on an office chair that had a height adjustment lever and a seat depth adjustment (could angle the seat), it means that you can angle it to the most comfortable position (the most comfortable position for me is the most uncomfortable for everyone else). It may be worth for when Amber goes back to school checking out to see if this type of chair is in the school, and then Amber could "swap" with the teacher for the lesson. Another option to try could be to try a wedge cushion, that go to a foam supply store (or to the independent living centre in NSW), and they can create one to the angle that Amber finds most comfortable, and then she could sit on it. At this stage, I can't think of how you can help the uncomfortableness along, in my memory I think sitting got easier with time. It gradually got easier to sit for long enough/ long enough at school, and only occasionally did I have to "sit alternatively". As time goes on and sitting at school became easier, the only time it got really uncomfortable was during tests/ exams where you have to sit pretty still and in one position. At home and for tests and stuff like that I swap chairs with the teacher or bring to school my chair (when I was at a "normal" high school (i'm at a senior college now), there was a couple of chairs in the school, and the school made sure one was in a classroom for a test). Ask Amber what it is like to sit and to look at something laying on the table eg a book. (this was something that I had a problem with, it may have been because my fusion went a litle high_

Alison





We found my office chair in one of the chuck out piles in my Dad's office.

[dapsbounce8]

The only reason for rolling is to prevent stiffness and bed sores, so as long as Amber isn't too stiff in the morning, she need not roll. I woke up several times a night for about three weeks post-op, so I kept a lumbar pillow nearby to change my position. This prevented stiffness.

I'm having final exams (90 min) right now and its really hard on my back! Like Alison said, all of the sitting with the neck bent in the same position makes it really sore. After an hour and a half like that, I'm practically shaking! I find that the best solution is to spend a lot of time walking or standing in between exams, or whever my back gets sore. Its hard to resist the urge to just sit down, but the walking is better for the back.

[mumof5]

It's wonderful how all this help, support and advice comes back so quickly. We have an office chair at home. I'll ask what they have available at the school. The wedge cushion sounds like a great idea. We have a shop hear here that does rubber everything. I'll give them a ring and see if they can help. I don't think that Amber is ready to go back to school right now, but I don't think it will be too much longer. All of her teachers are pre-pared for her to have the rest of the term off, which is another 4 weeks. I am sure she will be there at least a few hours a day by then. How did everyone know when they were ready to go back to school? Amber's surgery was 3 weeks ago yesterday.
Cheryl.

[Alison]

Even though my situation was slightly different (I had surgery at the end of the school year- one week of school left) and was more than ready to be back at school by the start of school the end of February. But I do know a couple of people who had fusions in the midle of the school year and these are some factors that they considered before they went back

:Am I able to go through the day with not needing to lie down much
:Can I sit reasonably comfortably (teachers are pretty understanding and mine never had a problem with me getting up and moving about during class when I became uncomfortable)
:How is my concentration
:How are my shoulders feeling, can I write comfortably
:DO I feel ready?
:How is my pain/pain relief (even though you get pretty sore sitting at school all day, if pain generally is getting better, mum sent me to school with some panadol- gave it to the school nurse and if I needed some I went to her)

My best guestimate would be once you reach week five post op, start to consider Amber going back half days (ie up until lunchtime, when you are fresher and less stiff in the morning). If they don't seem to work (or a bit early) have the teachers send home some schoolwork for Amber and then she can do it at home. She will definetly be ready by the start of term three.

I've got some more to add to this about school related stuff, which I will add on later.

Dapsbounce 8, have you considered leaning on a leaver arch file (big ring file) in class and using a sloped writing board for exams). I have found that this has greatly helped with neck stiffness and being more comfortable.

Alison

[Alison]

Heres a bit more:

Amber will be the best judge of when she's ready (along with you :-) it will be when she is getting frustrated, edgy, restless, bored and wants to go back

I have a few questions before I add the next bit about school stuff. They'll help me make my suggestions a bit more specific to Amber

:Are any of Amber's siblings at the same school
:does the school have lockers
:do you take textbooks with you or do you use a class set
:doyou do physical education
:How many classes are there a day
:In subjects such as Art and Science do you sit on stools with/without a back to them
:What are the chairs like in school

[mumof5]

The school has started to send work home for Amber, at her request. She does need to lay down if she has done anything at all 'strenuous'. Her concentration seems OK. But she is really lacking the stamina and the ability to sit or stand for too long. Time will improve both of these problems. She does have a bit of shoulder pain but hasn't really complained of it being worse while she has been doing school work. I hadn't really thought of that being a concern, I'm glad you mentioned it. Her year advisor has said that when she is ready she can come back for 1 or 2 periods (40 minutes each) until she is ready for more. A few days a week, whatever she can cope with. They are being very understanding and helpful. Though Amber is really enjoying the break from school. I know she wants to go back.
Cheryl.

[mumof5]

1. Yes she has one sister at the same school. I will be driving them all to and from school.
2. Yes the teachers have agreed to provide a locker for Amber (even though they are supposed to be for yr 11 & 12 only)
3. This year she only has one text book but she has to carry it. Though her teacher may 'keep it' for her.
4. The teachers have 'decided' that Amber can sit out PE and sport. I think they are worried that she will get hurt and they will get the blame.
5. There are 8 periods a day, 40 minutes each plus lunch, recess and a short break.
6. Her roll call class, science, art and cooking classes all have backless stools. Amber says they are all wobbly or the top of the seat falls off. (Scary). The rest of the chairs are the ordinary plastic school chairs of the 'normal' school condition. The teachers chairs apparently aren't much better.
Cheryl.

[Alison]

This will come in bits and pieces

Seat falling off, now that's scary. I know that schools in Australia can get disability support for specialised equipment such as stools etc, or they often have money set aside in their budget or in the education department budget. It may be worth looking into, or getting in touch with the disabilities services commission in NSW. That the school may be able to get funding for the provision of a stool for Amber that has a back. She will find it difficult to sit on a stool without a back support because she will have to hold her back up,and there is nothing to support you. It makes the bottom of your back pretty sore (i found), there wasn't money in the school budget when I went back to school for the provision of a stool, and the way I got around this was I asked for a normal chair to be in the class and I sat on that (it was a bit difficult in subjects such as cooking and art, but we got around art by having a normal desk in there whilst I was in there and then someone took it out for me when I was not there.

I still wanted to be able to complete the objectives for sport as much as I could (in Western Australia some of the curriculum is outcomes based). When I was still in the no sport stage, the teachers came up with some written assisments that I could do, that would cover the syllabus objectives. I often still got dressed in my sport clothes, when I got sick of doing the written work in the library when everyone was doing sport, I either got a study period in the library and did homework, went for a walk around the school, school oval (I still wanted some physical exercise, whilst the game was going on ie footy/soccer/netball. Or participated on the sidelines in some way such as keeping score, helping to umpire etc.

I found that my shoulders started to feel sore when I had been writing for awhile in school (you write for a while ie copying stuff off the board and you sort of stay in one position and you have a tendancy to tense up)

When I went back I was still in the no carrying/little carrying stage. I either left my textbook at home, or the teacher kept it for me if I didn't use it very much at home for homework, or I shared someone's in their class. My sister carried my school bag for me which had my lunch in it, my calculator, a pen, pencil, eraser, ruler. For each of my subjects I used anexercise book and put my pens and stuff in my pocket or used a small pencil case. I would hold the exercise book close to my chest (i often had an exercise book and a textbook if it was a pretty small one, and was given permission to go to my locker either after every class or every two classes, I held it close to my chest so it would be weighted close to my chest). I know ways that other people have done it is to take a few sheets of paper to every class, but I would personally find it difficult to do this, because it would be hard to keep everything organised, or there would be sheets at home that you would need in class, that's why i found an exercise book easier.



Alison

Alison

[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!:D. Well done Amber, you are a smarty pants :D. 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.:p

[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

[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

[mumof5]

Everything seems to be going really well. It's so good to have it all over and done with and to able to just recover.
It looks like Amber is going back to school next Tuesday, She talked me into having Monday off because it's her birthday and she said "I always have to go on my birthday". What a cheap present hey!
Cheryl.

[Peggy]

Hi Cheryl,
Just wanted to let you know that my daughter had some tingling every once in awhile too in her feet. She hasn't complained of that since about week 8 post-op. She is thin also. Glad to hear Amber is doing so well. Going back to school! Wow! My daughter's ended in June and won't start up again till the end of August. Even then I wonder about her mentally, going back with the brace and all. That will be a really long break. Her last day of school was April 8, the last day before Spring break. Good Luck to Amber, sounds like you guys are doing great!:)

[Peggy]

Good Luck Connie! Everything will go fine and soon you will be on the road to recovery! :)

[mumof5]

Amber is going back to school tomorrow. It would have been today but she wanted her birthday off school and I figured she deserved it. They are on holidays in a week so I am hoping she can use this week to catch up with all her friends. We will try for just part of the day and see how she goes. Hopefully after two weeks of holidays she will be ready to go back full time. (or be really close to it).
Fingers crossed.
Cheryl.

[mumof5]

School went well for Amber this morning. She stayed for the first 2 classes, 80 minutes. Her teachers are 'mothering' her but she said it's not to bad. Her hips were aching and she said she couldn't have lasted any longer. I'm so proud of her getting back there, even if I was worried while she was gone. Just being a parent I guess. She'll have tomorrow off as I have to go to court and she is coming with me, but she will be at school on Thursday. She said she feels like she will sleep well tonight. We did a bit of walking to try and help 'free up' her hips this afternoon (shopping).
I hope everyone else is doing well.
Best wishes.
Cheryl.

[mumof5]

Hi everyone,
Amber's hips are 'ok' now after going to school on Tuesday. She spent all up about 3 hours sitting in the court yesterday and travelling to and from there. She didn't really rest very much when we got home. I think she was restless and wanted to be moving around. This morning she has woken up looking a bit 'peaky', tired and in pain. She was planning on going to school this morning but is not up to it. She says her back is achy and exhausted. Any ideas? Has she been over doing the sitting? What else could it be? She is a bit pale today as well.
Cheryl.

P.S. For any one curious court for us has been over access regarding my youngest child. After 3 years her father has just realised he is a dad and wants to be involved. Things went well for us and hopefully will can all be happy and settled now. Yes he will be involved with her.

[Alison]

I wouldn't quite phrase it as over doing the sitting, instead my best guess that Amber's muscles/back are sore as they are getting used to sitting for that long again in basically one position (the muscles are probably either "tight" or feeling a little bit floppy). It is also probably also the concentration in Ambers mind and her back; what I mean by this is probably having to sit "straight" and also have to listen to the teacher at the same time does take quite a lot of concentration. Also her body would be trying to get used to "going" to school again.

I know that Amber doesn't want to use a cushion, and I can understand why. I remember personally fighting my Mum against it for the first six months back at school, because I thought it would be a pain and that people would look at it and think I was strange. I can't remember how mum eventually won out, or I relented, but I think it was because I was sick of spending much of the class standing (what I ended up with was a support for the back of the chair because the school chairs were shaped funny, and using the teachers chair got too difficult cause the chair was too high for the desk, I did get many stares at the start as it looked kind of odd, but after a while people just forgot it was there (when I got fed up with using it on occasions, I would practice bouncing erasers off it as it was quite "bouncy)

My suggestions, other than using a cushion include:
:Even though the school lessons are forty minutes long, if perhaps Amber got up in the middle of the lesson (during the lesson) and either walked around the back of the classroom a bit, or go outside and go for a bit of a walk/stretch. To give the muscles in the back and hips a bit of a break
:Perhaps upping Ambers pain medication a bit whilst her body gets used to sitting for a long time again. Even though personally I dislike pain killers cause they have a habit of making you feel a bit dopey and drowsy I personally found that they helped a bit in the first few weeks of going back to school
:Another idea is to Amber to "practice" sitting at home for a bit longer in a comfortablish chair to get her brain used to sitting again for longer periods of time

Alison

[mumof5]

She has been 'practising' sitting at home. She says she did get up and wnder around during the class. She actually said that she had to get to get a few things during class and she was sure that the teacher had spread the stuff around the room so that she would have to walk.
Today was the first day in about 4 weeks that she had taken anything for pain. She spent most of the day laying down. When she got up to come and have tea she said she felt much 'straighter and taller' and the muscles weren't 'tired'. I guess it's just going to take time to re train herself into being a student.
I have repeatedly asked her if she wants a cushion and she says it wouldn't help as it is the shape of the chairs. Maybe time and my constant 'nagging' will change her mind.
I have to keep reminding myself she's only 7 weeks post-op.
Thanks for the advice.
Cheryl.

[Alison]

This is going to sound like a really odd question, what is the basic shape of the chairs/what do the chairs look like. Why I ask, is through the combination of my sisters, and my best mate's occupational therapy brain and my dad's brain who does stuff with ergonomics they might be able to come up with suggestions for you of how to make the chair more "comfortable"/easier to sit at for a longer time for Amber. Just curious ask Amber if it is the back of the chair that is the shape problem.

I think the hardest thing always is after a scoliosis surgery is that you look so "normal" feel relatively normal but the body isn't quite there yet

Alison

[mumof5]

I have seen the chairs. They are designed so that the kids 'can't swing on them'. The backs are slightly moulded but very upright. Personally I don't see how anyone could be comfortable sitting on them without sliding down on it. She says she is sitting in the same position whether she uses the backrest or not. I've tried to explain to her that sitting like that uses more muscle control than if she was leaning against the chair. I know she can feel the rods in her back when she leans on things, even sitting in the car and laying in bed. I think she feels that even with a cushion she will still be uncomfortable. I doubt it would be as bad though. Also there is the problem of not wanting to be noticed. But that is going to happen anyway after being away for so long.
Well today is the last day of school term and she will have 2 weeks holiday, hopefully I can change her mind. I might take her shopping and see if we can find a suitable cushion that she really likes, then we can work over the holidays finding the best and least noticable way of carrying it.
Thanks for all the advice and ideas.
Cheryl.

[Alison]

Maybe a compromise with Amber could be that if you find a cushion that she likes/is suitable that she keeps it in her locker and uses it when she gets really sore or in the afternoon classes when your muscles are more tired (she may keep it in her locker all the time for fear of embarassement I do realise this)

What I have found with some of the really straight back chairs (like the type you find in doctors surgeries), we have them for Band that even though I can "Sit" in them for a long time, it is more comfortable to have a comfy pillow behind me to give my back a rest.

Alison

[mumof5]

Amber has been to school this morning. She lasted about the same length of time as Tuesday. She has just read what you wrote and said 'Yeh!, but I don't want to get dependent on it.' My arguments are just not working. But I'm not going to give up.
Cheryl.

[Alison]

Here's another line of reasoning for you that might work (what I found for me)

You find for about the first year and a bit that a cushion is helpful in comfort and pain staying low whilst sitting in school chairs. As your muscles improve you find that your mind "tells" you that it doesn't need this anymore and you find yourself wanting to use it less and less. I used my support on the chair all the way through year nine and half way through year 10. I eventually stopped using it and bounced erasers off it instead because I found that I could once again sit reasonably OK without it and still be comfortable. And when I moved schools in year 11 I didn't use a support at all. But you do find that when you are "comfortable" in the chair at school you can concentrate on school and school work better and you seem to do better in tests because your mind isn't focused on the wriggliness. But for exams/tests and TEE i use an ergomomic chair and writing board because I have found that for the 3 hours I can't sit comfortably for that long without wriggling and losing concentration

Alison

[mumof5]

The ergonomic chair you are talking about, is that a 'chair' chair or one of those ones that has a knee rest/pad and a seat with no back? My Nanna had one like that years ago but I haven't seen one since. I always thought it was the most comfortable thing I had ever sat on ( except when my knee was sore). They force you to sit very straight, if you lean backwards you 'strain' your atomach and forwards your legs of you topple off. My Nanna's one was a bit heavy though.
Cheryl.

[Alison]

For school tests/exams etc I use a chair chair, the one that has the backrest and the adjustments for the seat depth and the height. We managed to snag it at a businesses closing down sale which I thought was pretty good. I find it really comfortable, but everyone else tells me that it is uncomfortable because unlike most people who have the seat adjusted really flat and the back really far away I have the seat sloped a lot (cause that's comfortable for me). It is also the computer chair in our house. We usually call it an office chair, but when I wrote the reply I had ergonomic chair on the brain as that was the term we had to use to fill out my curriculum council application to be allowed to use it for TEE.

My GP doctor had similar surgery for her back a long time ago and she uses the seat with no back and the kneerest bit. I have sat on it a couple of times. I found it strange sensation but comfortable. After I had surgery we looked at different chairs for schoolwork and even though the odd looking chair was more comfortable because the fact that it was heavy and looked strange for taking in for school we went for the chair chair. As it looked a bit more discreet and it also fit under my desk at home without two many bothers.

Also at home I sometimes sit on a fitness ball (a big one), my physio made me start to sit on one a couple of years ago as another way of working up my back muscles and my general balance overall. That isn't as comfortable and I spend much of my time falling off cause I don't pay attention :-)

Alison

[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.

[mumof5]

We have been to see the doctor this afternoon (x-rays this morning). He said that her shoulder 'problem' is due to the way that the rib is regrowing after her spine being straightened. It is just a cosmetic thing.
Getting 'stuck' leaning forward, he thinks that the pain was caused by tearing scar tissue.
We are both so relieved. You just don't know when you're sitting at home if things have come loose or not.
I'm glad it was good news.
Cheryl.

[mumof5]

Amber has had her 3 month check-up today everything is going really good. The 'weird' rib is ok, it's just a cosmetic thing and can be fixed if she wants when she is around 12 months post-op.
Cheryl.