Adult recovery

[Christine]

Hi everyone

I have just passed four months since my surgery and am wondering how others have felt around this time. Especially women over 40.

Last week I had my bloods checked and today found out that I have very little iron and my red cell count is low (not sure of the terminology here) so tomorrow I start a series of vitamin B12 injections which will last a few months. I have never eaten much meat and never eat dairy, but haven't had iron problems in the past. I expect it is due to the surgery, but not really sure.

Anyway, aside from feeling absolutely exhausted and still needing to sleep for a few hours each afternoon, I am also still extremely sore. Hence needing to lie down often. Mostly across my upper back. Even the slightest movement with my shoulder blades causes pain, which I imagine would be like the worst and deepest sunburn you could imagine (this is how I can best describe it). My rib hump, which wasn't corrected, is also very sore when I am trying to sleep as it digs into the mattress as it always has, but worse now as there is no give in my back after the fusion. Same when sitting. I used to be able to kind of wriggle it into a comfy position for a short while, but can't now. I am worried that this will upset the fusion process as it seems to push the rest of my back in a funny warped way. Sleeping on my side is scary as when I roll back again my ribs seem to be knotted, feeling tight, and then they pop back. Thus causing more pain. It is like a vicious cycle. I would love some comfort and a good sleep!

I am still on morphine.

Any advice? Is this nothing to worry about and just due to my age?

I am due to send my surgeon another x-ray at the start of December.

Christine x

[MySon]

Dear Christine I should still be letting you read your book. So sorry you are still having problems I have read that it does sometimes take longer than 6 weeks and you have more demand on you as a Mum. I hope the surgeons can be a good help for you in post op.

Again thanks for sharing your book see p.m. Good luck hope it gets better soon .

Chris

[Christine]

Hi Chris

No, I don't at all wish to read the book again so don't worry about that.

I know the recovery can take a long time, but I think I just need some affirmation that my ongoing pain is not abnormal or that something else is wrong. The B12 shots may help me repair a bit better, especially the muscles and nerves so will see what happens there. When I send my x-rays to the surgeon I will follow it up with a phone call and speak to him about things and see what he says.

My son is 21 and now lives about 45 mins out of Hobart so he doesn't drop in so much. Meaning I don't have him to tend to. And shouldn't have to at his age! But I do have a part-time stepson who is with me sometimes when Tom is away working. Tom and I don't live together, but he lives next door, which is really nice :p but he has been away in Europe for the past month and I found it really hard not having him here to help. He came home on Monday so I can relax a bit now. I didn't like being at home alone while feeling so weak and sore.

My doctor has given me 2 more months before I can start working more than my current 12 hours a week, so hopefully things will improve.

Christine x

[sueham]

Hi Christine
Unfortunately I don't have any advice that can help, I just wanted to say how sorry I am to hear how long your recovery is taking. I hope things improve for you soon and let us know what your surgeon says.
Sue

[katherineP]

Hi Christine,
My recovery was also slow I remember at 4 months I was still sore and needing sleep especially in the afternoon. Just wondering about your rib hump and why this was not corrected through your surgery. Thanks kathy:):)

[Dom's mum]

Hi Christine,
I am so sorry you are still in so much pain, it can be just so exhausting and depressing. Have no advice to offer except to say that your iron and B12 deficiency could make a real difference. I was diagnosed with similar a couple of years ago when I had a chest infection which I just couldn't seem to fight. It takes a while but once you start those shots it will give you a bit more get up and go!
Take care of yourself
Annette

[Christine]

Thanks for your replies x

I asked my surgeon about my rib hump and still haven't a clear answer on why it was not corrected. From what he did say, perhaps he expected the fusion and de-rotation to fix it. But there was hardly any change other than the actual straightening of the spine. I think my ribs are just very deformed. I do wish it was done in one hit.

So, in June when my 12 months are up, he says surgery to fix it can be looked at then. Sigh. I hope it does happen but not looking forward to going back in!

It is nearly a week now since my first B12 injection, and although it is hard to really figure if it has helped, I feel like I am getting some cognitive function back and I do have a bit more energy. But still sleeping in the afternoon, so I am happy to hear that you were too Kathy at 4 months. Apart from my hump and difficulty getting to sleep, I feel the cloud is lifting a little as my days are not so hard to get through. It is just the nights...

Love to you all xxx

[MySon]

Great to hear you so positive. A real nuisance for you to need more surgery. Keep getting better - we need you :) cause you help all of us so much.

Take care

Chris

[sirfur61]

hi there Im not on much but I had three stage surgery in march and am still very sore over a lot of my body and have numbness from my waist to halfway down the front of my thighs I am from Tassie too and am off to melb tomorrow for a possible broken screw.
nothing prepared me for how long it would take to feel better...it still feels like Ive only had surgery a month ago.
I too am very sore around shoulders and it is put down to nerve pain....good luck and although I sound negative I just want you to know you're not alone
will check back later in week after trip to melb
hope you are feeling better
:)

[Christine]

Hi everyone

It is now my 5 month mark so thought I would post an update. Not much has changed over the past couple of months really...feeling like things are where they were at three months.

My B12 injections seem to have made a difference some days, but lately there have been lots of things on and I have probably been overdoing it, and feeling very run down again. Having another this week. I am probably doing too many social things, starting festive celebrations already so maybe I have to say no a bit more. Yesterday I went on a friends yacht as it was a perfect warm day, and thought it would be good to get out on the water. It felt really good to have a change in scenery, but I am exhausted today and have just woken up after a 2 hour nap. And it was probably a bit silly thinking I could get on and off the boat without pulling too much in my back. So yep. A little sore today. The rocking was nice though and felt I was getting a nice lumbar massage while I was standing up balancing myself, so that was good.

I am still working only 12 hours a week. Sleeping every afternoon from around 3pm until about 5ish. I have tried missing naps but I don't even get to 7pm! So I will keep that up I guess. At least until I can manage to sleep well at night.

Still on Oxycontin. I asked my GP again last week if I should start trying to wean myself off them, but again he says not yet. He says while I am still very sore, what is the point in adding anymore pain.

On the working issue...has anyone out there had to go through that whole thing of not really being able to work like they used to after many months? Especially single people like me without spouses to fund their existence (I wish!!) What happens? My GP keeps giving me time off work and Centrelink are giving me a small sickness allowance, but that, along with my 12 hours pay each week means I am financially in a mess. But I physically can't do my job anymore as it involved quite a lot of physical activity and I fall asleep in the afternoons! Maybe I should see a social worker at Centrelink or something. Hmm. Love to have some advice.

Christine x

[Jen]

I think everybody heals at their own pace and that can vary widely, from my reading. There seems no reason why one might take longer than someone else. But your low red cell count and going back to work could certainly contribute to how you're feeling. On the American forum, I've read that some felt tired for the first 12 months.

Are you walking daily? It doesn't have to be a marathon. Just a brisk walk for half a k and back again, which takes less than half an hour out of your day, and this will have you feeling much, much better. If you can increase this up to 2 ks, you'll be jumping out of your skin. :D

[Christine]

Hi Jen

Yes I am walking every day. I don't have a car, so no choice really! Work is half hour each way, and on the other days I walk for about an hour or more. I am on my feet quite a lot. It is the only time I am really comfortable as it seems to loosen things up a bit and my hump is not touching anything. Same when I am in the pool :) and it is when I have the most energy. Then it all goes downhill!

Otherwise all is unchanged, which is ok. I just need some good sleep and to slow things down a bit more I think so my old bones can catch up!

Thanks for your concern :hug:

[Jen]

Sounds like you're doing quite a lot Christine, being on your feet all day on top of walking to work. Can you take a week off, to do as little as possible, early nights, resting and reading during the day, afternoon naps, that sort of thing? Obviously lack of exercise is not the cause. Whatever you do, I hope you start to feel good again really soon. I've read that sometimes it happens very suddenly, that change from lethargy to wellness. I hope that happens for you.

[Christine]

Hi everyone!

This week marked 6 months since my operation and i had another set of X-rays done to send to my surgeon for review. I will be looking forward to hearing what he says.

But I must say I was really happy from what I can see from simply comparing this lot of X-rays to the last ones in September. My lumbar spine has even straightened out a little! That explains the pain I get around that area as I guess it is moving, causing a constant aching pain, especially in the latter part of the day. No pain, no gain, they say! Over the past month or two I have felt less crooked and have noticed my gap between my arm and side is less. All of the walking I have been doing, plus the water therapy is really helping too. My hips are still a little uneven, as are my shoulders.

This week I have also made a decision to try to reduce my morphine, and will stretch out my doses until I absolutely need it. I am on the lowest dose anyway, so will hopefully be able to manage with paracetamol. Another blood test result came back this week and my B12 levels are ok after a few injections, but my iron is still way too low, so my GP has ordered me to go see him about that. It seems my body is not absorbing the supplements I am taking. At least that explains my continued lethargy and inability to do much other than what I have to do. Not sure what is going on there. I might have to eat meat :sick: It sounds like iron levels post-surgery are a very common problem.

I am still only working 12 hours a week, my GP has given me another 3 months medical certificate and he says I really should have all of 2012 off! He is probably right, that would give me more time to focus on getting back to my normal health, but I do need to talk to Centrelink about that as the sickness benefit support is not enough for me combined with only 12 hours pay. No wonder I am getting thin I can't afford to eat :rolleyes: !!!

The weather is so much warmer now in Hobart and it is great to wear less clothing and be outside more, and get some gentle morning sunshine on my back. I even wore a top today that had my still very visible scar peeping out about 4 inches! My hair still covers it though … I am still a bit hesitant to cut my long hair.

In case I don't get to post back on the forum ( I bet I do!) I would love to wish each and everyone some fun times and quiet times over the festive season. We have all had an amazing year, and although our stories are never the same, we are all kind of the same. I think you all know what I mean.

Thank you all for your friendship, encouragement, wisdom, advice, openness even when we all feel quite low. Most of all, I hope the younger members have a very special Christmas. They are the strongest little troopers ever and I wish I could give them all a Christmas hug. A gentle one of course:hug:

Lots of love,
Christine x

[Jen]

And the same to you Christine! :)

[Dom's mum]

Hi Christine,
Your results sound encouraging but on the other hand it is still such a struggle. Hard not being able to work and live on sickness benefits -if that lottery win I pray for comes in I will add you to the list! Keep taking care of yourself and that lovely positive attitude and hoping that 2012 will bring more improvement for you.
Annette

[Christine]

This is a funny time of year, being in limbo between Christmas and the lull before New Year, but I am liking it!

It has almost been seven months of taking morphine and I think it was starting to really slow me down. Thought it might be the reason I collapse in a useless heap each afternoon in a foggy daze.

I decided to use the break to wean myself off it. And today I have woken up, now seven days without a dose, finally feeling a bit more normal. A bit tricky doing it over Christmas, but I did pre-warn everyone so they knew and didn't just think I was a party-pooper :p

There was quite a lot of info online, so decided not to do cold turkey. A few weeks ago I started to stretch out my doses until my body was really demanding it, and eventually those stretches were becoming longer, so decided I could try omitting them altogether. It was horrible for the first few days, lots of night sweats, restless legs, a creepy crawly skin thing, headaches, the runs, you name it, I had it!

Popped two Valiums during the week after a few nights of no sleep. Which helped me catch up.

But the withdrawal symptoms passed and I am not having any cravings and am coping with the pain, kind of. The pain in my back has come back to be around the same as it was a few months ago...which was something I was not expecting so much. The pain is very concise now, whereas before it was like a slab/sheet of pain across my back. Panadol Osteo is now the only thing I take, around four or six a day.

I feel like I have joined the FJC. Former Junkie Club!

So, I have knocked over my New Year's Resolution already.

Happy New Year :D and hope you all enjoy a great start to 2012.

Christine x

[Jen]

Congratulations Christine. I suffered withdrawls after only 6-7 weeks on Oxycontin and it took 2-3 weeks to get it out of my system. It was a miserable time but worth it to be off it and have my brain back. Enjoy your New Year!

[MySon]

Hi Christine
Happy New Year - congratulations on your strength and determination to get off the morphine. Letting go of the thing that prevents the pain is tough - you have done well.

We had a lovely Christmas and New Year - I feel so lucky that Dane has been recovering so well and enjoying all his usual activities. i did draw the line at swinging from a rope on a tree to jump into a creek - but apart from that he enjoyed lots of walking (quite strenuous and lengthly up and down gorges) swimming and snorkelling.

I hope 2012 does give you some time to recover - I am convinced that the movement is actually better than the rest. So keep walking (as you have to anyway). I have a friend who was told he would never walk again after a motor bike accident at 21 - now in his 50's he continues to push himself to walk up to 30 mins a day - and despite the initial pain he maintains it is much better than the alternative to seize up and be sore from immobility.

All the best for a wonderful year Christine.

Love
Chris & Dane:hug:

This is a funny time of year, being in limbo between Christmas and the lull before New Year, but I am liking it!

It has almost been seven months of taking morphine and I think it was starting to really slow me down. Thought it might be the reason I collapse in a useless heap each afternoon in a foggy daze.

I decided to use the break to wean myself off it. And today I have woken up, now seven days without a dose, finally feeling a bit more normal. A bit tricky doing it over Christmas, but I did pre-warn everyone so they knew and didn't just think I was a party-pooper :p

There was quite a lot of info online, so decided not to do cold turkey. A few weeks ago I started to stretch out my doses until my body was really demanding it, and eventually those stretches were becoming longer, so decided I could try omitting them altogether. It was horrible for the first few days, lots of night sweats, restless legs, a creepy crawly skin thing, headaches, the runs, you name it, I had it!

Popped two Valiums during the week after a few nights of no sleep. Which helped me catch up.

But the withdrawal symptoms passed and I am not having any cravings and am coping with the pain, kind of. The pain in my back has come back to be around the same as it was a few months ago...which was something I was not expecting so much. The pain is very concise now, whereas before it was like a slab/sheet of pain across my back. Panadol Osteo is now the only thing I take, around four or six a day.

I feel like I have joined the FJC. Former Junkie Club!

So, I have knocked over my New Year's Resolution already.

Happy New Year :D and hope you all enjoy a great start to 2012.

Christine x