Muscle Spasms

[mumof5]

Well it has been awhile since I have been here. Amber, 16, is now 18 months post op. She was fused T4 to L4. Everything has been going really well. Up until now that is. 3 weeks ago her back got really sore, I took her to our local dr and we were told that the muscles had gone into spasm.
Well now she is back on morphine for pain relief. It is just not getting any better. She can still walk around and all that but she is in alot of pain.
We have an appointment the a surgeon tomorrow and she had x-rays done a couple of days ago.
Has anyone else had this happen or heard of this happening. We are at a loss as to what to do. Does anyone have any ideas on pain relief, I have tried everything that I can think of.
Cheryl

[mumof5]

We have been to see the surgeon. He is not sure what is going on in Amber's back and has ordered blood tests and a bone scan. He gave us a list of possible things that it could be and how we are going to rule them out. He did say that it could even go away by itself without us ever finding out what it is. It could be something as simple as an infection or something more serious like a cracked fusion or a problem with the rods. It is very scary to hear that all this time after surgery that the rods may need to come out.
Is there anyone else who has gone through any of this?
Best wishes everyone
Cheryl

[mumof5]

I would just like to add, for anyone reading this and getting worried about having the surgery. Amber says that the surgery was definitely worth it and if she was going into now, knowing all she does and with this recent problem, she would still have it done. She would like to send encouragement and good wishes to everyone who is now facing surgery.
Cheryl

[mamakay]

Hello Cheryl,
I was wondering how Amber has been doing.
I followed your story back then as my dtr was preparing for surgery, you had many good suggestions.
I am sorry Amber is having some problems.
Stephanie never said the surgery was worth it untill just yesterday.
She has pain sometimes but says she thinks it is bc of the way she slept in a funny position. I hope it is nothing serious and know this is stressful for you both, my prayers are with you.
Sounds like the Dr's will figure it out for her I'm sure.
Good Luck and keep us posted,mamakay

[mumof5]

Thankyou Mamakay, I do remember you and Stephanie. I actually had a bit of a read of some of my old threads the other day. (over 2,000 reads , wow). It is amazing how far we have come since then. Before this problem Amber was running and jumping down stairs etc, being a normal 16 yr old. I'm glad everything is well at your end.
Amber had her blood tests done yesterday and is having a nuclear bone scan done on Monday. That should show is there is anything major going on. Amber is convinced that nothing will show up and one day it will just be better. I would love for that to happen but personally I would like to have an answer as to why it happened.
She is now on 25mg of morphine twice a day as well as valium and anti-inflamitories and paracetamol and codine. It is not helping to ease her pain.
Does anyone have any 'natural' ideas? I've tried heat packs, but is there anything else?
Best wishes to all
Cheryl

[Karen Ocker]

I am sending you a pm with my ideas.
Karen

[mumof5]

Amber has been for blood tests and a nuclear bone scan now. We are waiting for the results to come in.
Her pain levels are the same though she does seem to be becoming used to it. Most here will know what I mean....
Ice and heat are giving slight relief but it is not lasting long.
Best wishes to everyone
Cheryl

[judyk]

Cheryl,
Please keep us posted and our prayers are with you.

[matt]

Hey Cheryl. I'm sorry to hear that Amber is now have more problems. I really hope she starts to feel better. Well, just so you know, I also had muscle spasms about 8 mon. postop. And they are not fun. They really hurt. But, thank God, they went away after about 2 months. I hope she feels better soon. Keep us updated. You are in my prayers.
Happy Thanksgiving! Ross

[mumof5]

Matt, did you ever find out what caused the muscle spasms? Did that happen around the same time as the problem with the wire? What did you do for the spasms when you were going through it?
Amber's blood tests have come back good and we are just waiting on the bone scan now.
Thankyou to everyone for all the good wishes.
My msn addy for anyone who wants it is wonkywalka@hotmail.com, yahoo is the same name but @yahoo.com.au
Happy thanksgiving to all you Americans.
Cheryl

[mumof5]

Amber's bone scan results are back. Everything is looking normal and solid. Which is good, but doesn't explain her pain.
The surgeon is giving her another 6 weeks to see if it will just get better on its own. If it not... it all comes out. Pretty scary to be facing that. So fingers crossed.
She is sick of the side effects from all the medication. We had a good talk to both our GP and the surgeon and are now weaning her off everything.
Best wishes to everyone.
Cheryl

[Sheena]

oh my god, i just read that and im shocked!! is amber ok??? you have to let me know how it all goes cos im worried now!!
hope you are ok, and regards to your daughter
hope shes better soon!!
love sheena xxxxxxxxxxxx

[mumof5]

Amber is now off all of the medication that she was on. Today will be the first full day of none, so I am wondering how she will cope. She is still asleep right now.
She does not want to have more surgery but I think she will do what the surgeon thinks is best because she trusts him. I just don't know what to think at the moment. But if her shoulder blades are rubbing on the screws and sending off fragments, then I can't really see any other option besides having the rods out. I am really worried about her missing even more school.
I guess whatever is meant to happen will and we will cope with whatever is thrown at us.
Best wishes to all.
Cheryl.

[mamakay]

Dear mumof and Amber,
I am still checking on you to see how things are developing.
Bone fragments? Did they see those on xray?
Well you are right as my husband said about our situation, you have to play the cards you are dealt. I know this is sooo tough for ALL of you.
Have you gone to another Dr? I know that is way hard to do too as you have to go so far.
We will continue to pray and think about you, post when you can.
mamakay
Amber you are such a strong sister and role model for your siblings!

[mumof5]

The surgeon that Amber is seeing here is in consultation with the one in Sydney that did her surgery.
So far nothing has shown up on any of the tests that she has had done.
Now that she is off all the meds, I am noticing a difference in her. She is more alert as expected, but she is still not sleeping well and is now becoming very stiff and she is moving awkardly. She says that there has been no change to the pain at all. Just that she is stiff now. I want her to at least take some anti-inflamitories but she says no.
On top of all that over the last few weeks she has devoloped a rash on one of her hands that has now started on the other hand and wrist. The doctor has done some blood tests to try to work out what it is, if it shows nothing he may have to take a sample of the skin. I'm sure that will make her happy. lol.
One day the problems will all be solved and I will be stressing because there is nothing to worry about. The joys of being a parent.
Best wishes
Cheryl

[ozziemum]

My daughter 17 is just three years post op (Royal North Shore, Sydney) and all went well but recently has experienced quite severe pain around her upper back/shoulder area, her local GP prescribed anti inflamatory drugs which did seem to help but it took quite a few weeks. Did you go back to your original surgeon? We only had one visit 12 months after surgery and I wonder should we perhaps go back for a check up.

Thanks. My 15 yr old son is scheduled for surgery for pectus carinatum also in Sydney on the 3rd Jan.

[mumof5]

Amber has taken lots of anti inflamatories but they did not help at all. We have been seeing a spinal surgeon that we have been seeing for several years. He did not do Amber's surgery but he did recommend the one who did. They are friends and he has been keeping the sydney surgeon up to date on what has been going on. We are supposed to go back and see the one in Sydney in May. If Amber does need to have more surgery it will be done here. We find out what the dr thinks in 2 weeks.
Cheryl

[mumof5]

Well Amber has been moving around much better lately. She says the pain has not really changed but she is learning to live with it.
None of the tests that she has had done have shown anything wrong, so it is all still a mystery.
The surgeon doesn't want to rush in and remove the rods. Which Amber is very happy about because she doesn't want to have any more surgery. He has said that removing the rods is no guarantee that it will fix the problem. The pain may always be there.
The kids here are still on christmas/summer holidays, so he wants us to go back in 3 months after she has been back to school for awhile. If the pain gets worse with all the sitting at school, we will seriously start to think more about surgery.
When we go back in April he is also going to recheck my other 4 girls backs to see how they are progressing. I haven't noticed any changes with them. Jordan's curves seem to have stopped. Gabrielle has bit of a twist but I can't see any difference in it since the last time he checked. Isabel seems ok and Shayleigh is only 5 so hopefully they won't develop problems.
Having one child go through this has been hard enough, I don't want to go through it all again. An acquaintance the other day said to me that he can't understand why I don't get married agian so that I would have support and things would be easier for me. He got upset when I told him that was the dumbest I had ever heard. lol. I have everyone here for support. Thankyou to everyone here for that.
Cheryl

[mamakay]

Glad to hear Amber's rods are not coming out and hope she can work with the pain.
I am sorry, but so happy there is not an infection.
Guess no new is good news huh!
Stephanie has pain off and on, and of course the hair on my neck goes up when she asks for a tylenol or has been in the nurses office to lay down.
She said the pain is not like it use to be so I guess these kids are just d#mn tough!
I always ask "where" on her back it hurts and just try to make mental notes.
She is 17and half now, driving her friends ALL the time and not home much on weekends so I'm sure she is hard on her body. (I notice it hurts more when she has been walking on hard surfaces for a long time.)
You are so right we are here to support each other, I think I would have really caved without everyone here.
stay in touch! (and single ha)
kay

[mumof5]

Thankyou Kay, where is Stephanies fusion?
Amber is worried about learning to drive. They are very strict here on looking over your shoulder, you know when changing lanes as well as reversing. She can't do it very well. So she won't even do the written test to get her Learner licence.
Amber's pain is over her entire back. Not just over the incision area but out to the sides as well. I have noticed that she is in more pain after she has been walking lots on hard floors, like at the shopping centre (the mall?).
We still haven't really found anything that helps a great with the pain, rest panadol, which I think is the same as tylenol, heat and ice. I have tried rubs and creams for pain relief , but she says they don't help and they stink. So they are out. At least the actual has gone from her back and the muscles don't feel like rocks now. I just wish the pain would ease off a bit for her.
She is coping at the moment and I think right now we have to be content with that.
I keep everyone poosted on what is going, hopefully though no-one else will have this happen.
Cheryl. (happily single mum of 5 girls lol)

[Alison]

Hi Cheryl

I know my fusion's a lot shorter than Amber's, but when I learnt to drive I was still having a lot of problems (basically not very well ) being able to see over my shoulder.

Whilst learning to drive, I found it took me a bit longer (I was also learning on an unknown at the time busted ankle which didn't help driving manual), but what really helped was that I had a sympathetic instructor. At the first lesson, we told him I had a spinal fusion, and in all his 'teaching' he took this into account.

He set the mirrors up in the car so I only had to look over my shoulder minimally. The mirrors in the car were quite 'big' and had those sticky things (like you get in K-Mart) to get rid of blind spots. When it came to reversing, he taught me to reverse using only the mirrors and the lines of the car park (ie not having to turn around to look in the rear-view mirror).......it is possible to do. He did try to teach me the 'normal' way.....but it was just not working, and I was getting very frustrated.

For the driving test, I just checked the mirrors the best I could. I spoke out loud (as most learners do in their test) to say "checking over shoulder", "looking in mirrors", "no car coming etc". By the time I went for my test I was a bit better at looking in the mirrors then when I started to learn to drive.....but it still felt a bit like 'going through the motions' :-)

I've now been driving for just over 2 years. I've driven my sister's car (which is a Ford Festiva Trio) for most of that time. The car is absolutely beaut for its mirrors, the rear-view one, you can see all of the back window easily, and the side mirrors and big enough and positoned well enough, you have minimal blind spots. What I've found is that with time, experience, and knowing the car well.....things such as reversing and changing lanes (ie looking over your shoulder) have gotten a bit easier (not perfect, but easier). I still rely on the mirrors a lot when changing lanes, on the freeway/highways I always make sure I look over my shoulder........however on 'normal roads'......I rely on the mirrors mostly when changing lanes. When reversing, I use a combination of looking behind me (by wiggling myself around in my seat......I can't just straight look over my shoulder), as well as the mirrors and the lines on the road (or where I'm 'aiming for')

Good luck.....I hope you can encourage Amber to take her written paper for her learners, and start to learn to drive. Once she has her license, she'll find that she has an immense sense of 'freedom' as well as achievement

Regards

Alison

[mumof5]

Thanks Alison,
How are things with you now? I hope all is well.
I guess Amber will do it when she is ready. There is no rush. It is good to know the other success stories though. It does help boost confidence.
Cheryl

[mumof5]

Just a quick update on Amber.
As we hoping but not really expecting, gradually her pain eased and one day she realised that it was gone.
We still don't know what caused it, I guess we never will.
Best wishes to all.
Cheryl

[lin515]

Mum of 5.
Wow I just read all your posts you . What a traumatic time it must have been for you. I was so glad to read that her pain is gone. We are only 4 weeks post op and I was shaking in my shoes as I was reading them. Here's hoping that they never return and it was just one of those things.

Hugs,
Linda