worried mum from Australia

[spincon58]

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

[Alison]

HOw did it All go

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]

How did it go

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]

good luck

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.