PDA

View Full Version : scheduled for surgery-scared



hvdeen
15th September 2007, 06:24 AM
Hello, I just found and joined this group. I am 24yrs old with severe Kyphosis though the doctor only recently discovered it and I never said anything b/c I always thought my curved back was my fault and didn't want to draw attention to it. My sister always told me I should stand up straight and that it was b/c I slouched but I have since learned that the curve that I have had since as long as I could remember is not from slouching and it isn't my fault and there wasn't much I could have done to prevent it. I have been unable to work now for a couple of yrs (a little longer than the time I have known what it is) b/c of severe back pain and leg pain (I have been unable to stand for more than an hour or so w/o pain in my legs). About a year ago the specialist tried to tell me I needed surgery but I was sure I could find something else less invasive and in my mind it wasn't an option until I tried everything else. Well I read about it anywhere I could and tried physio and a chiropractor and excercises but nothing made much of a difference unfortunately. So when I saw my specialist in the spring I agreed to have the surgery. Now the surgery is in a month and I am getting really nervous (I have been pretty nervous the whole time but it is worse now) and I don't know if I am doing the right thing-the only thing I know is the past couple of yrs have gone by and I haven't accomplished much and I don't want to continue this way and the only solution I could find is the surgery. I am thinking even if I still have some pain after, I sort of didn't lose anything but then I think about that I will probably lose mobility in my back and I don't know if that will bother me and I have heard about things that can go wrong and this is all a little scary. What is worse is that everyone around me is so busy that I feel somewhat like I am going through this all by myself. I have a very supportive family but they can't put everything on hold to sit and talk and I don't want them to put their life on hold either. I need to apologize if this sounds negative or like I am complaining-I don't mean for it to sound that way. One positive note to make-Edmonton, Alberta (not extremely far from where I live) has a group that has donated 1.5million dollars to research into the cause of scoliosis and the Alberta gov't matched that amount so it is a total of 3 million dollars. It may not help me so much (I have Kyphosis) but alot of people including me are happy at the prospect of future generations possibly not having to go through surgery and having different treatment options other than surgery. So that is basically my story and if anybody can help ease my worries, I would really appreciate it!

Seeking_help
15th September 2007, 04:46 PM
Hey - no need to worry about the surgery. Spinal fusion is a major operation but its a very safe one. It is going to be a tough road ahead but I think it will be well worth it. There are quite a few members who have been through surgery here and have had great success.

I know how you feel about not being able to talk to anyone - so just come online here and you'll be able to find ppl to talk to, discuss your condition, treatment, concerns of surgery and recovery...basically anything you need to know!

GillyG
15th September 2007, 04:54 PM
Hiya :welcome:

Sorry to hear you're having so many problems with your kyphosis. I can certainly relate to being in chronic pain, although my cause was scoliosis and has lessened considerably since my surgery last August. I do still have pain and I find it hard at work as the pace is so relentless, but at least I'm no longer in danger of ending up in a wheelchair.

The prospect of surgery is always very scary and it does help to have someone to talk these things through with. Family and friends, however supportive, can't possibly really know what it is like living with these conditions, but that's where we come in. There is a wealth of knowledge and experience on this site, everyone is really friendly and no-one will ever think you are moaning on, so please don't worry about that.

My spine is now fused from T5 to L5 - the very bottom of my spine - yet I can still bend fine. Apparently, I can only bend at the hips now, but, to be honest, I can't really tell the difference! :P Twisting is a bit more tricky, but I don't find it stops me doing anything.

The risks associated with the surgery - although very scary - are very small, tiny fractions of a percentage in some cases. You need to be made aware of these risks, if only to protect the surgeons from law suits (!), but the risk of infection remains the highest risk, as it does with any surgical procedure.

It sounds as though your quality of life is seriously affected at the moment, so having the surgery could make a huge difference to you. Being so young will give you a major advantage when it comes to healing and recovery. I was 49 when I had my op, recovery has been slow but I'm definitely reaping the rewards now.

I'm glad you've found this site, there is always someone who can help and advise you, plus quite a few of us have a wicked sense of humour, so ther's fun to be had too! :D

Please feel free to ask any specific questions, someone is sure to be able to help.

Take care and try not to worry too much.

Gilly xx

hvdeen
15th September 2007, 05:35 PM
Thanks for the words of encouragemnent and advice and stuff. I really appreciate it. My mom and I are not sure exactly how long I will be in hospital-they said about a week and we are trying to plan when she should come to pick me up so that is a little difficult but not impossible. I told her though that it probably isn't much sense her sitting by my bed the whole week b/c I don't know if I will be really good company and I will possibly be sleeping most of the time. What should I expect during the time in the hospital? I am not sure if I will be wide awake and wanting to do stuff to keep busy or really drowsy that I sleep most of the time. Is it different for each person? Also when I get home-what should I be expecting for the first few weeks (ie lots of pain)? As you can see, I have many questions. I am quite glad I found this group. Thanks for the support during this-I really appreciate it! TTYL

GillyG
15th September 2007, 07:48 PM
Well, like you already guessed, pain and pain relief tends to be quite an individual thing.

The first couple of days you will be probably be hooked up to a morphine drip via a PCA, which basically allows the patient to control their own dose by pressing a button, but is pre-set so you can't possibly overdose!! :P People tend to have different reactions to morphine, some are fine and others don't get on well with it at all. I was OK but it did make me feel a bit nauseous and dizzy, I was glad when they took it down, but it is very good at controlling the pain so is useful for the first couple of days. You'll probably find you sleep a lot during this time as your body is busy getting rid of the anaesthetic and beginning the healing process.

Once you go onto oral pain meds you will be much more 'with it' and awake. Younger patients usually find their pain is still quite well controlled, although obviously you will be stiff and sore for a while. I returned to my usual chatty self at this stage, although I didn't feel like reading the books I'd taken in, so I got a bit bored at times if there was no-one to talk to!

The hospital physio came on day 3 to show me how to 'log roll' off the edge of the bed and sit up, but standing made me go really woozy, so I had to sit back down again! Over the next couple of days I spent more and more time out of bed sitting in the chair and was up and walking by day 5 and back home on day 8! When you consider I had my surgery at 49, I don't think I did too bad, and many of the young 'uns are even faster than that! I think the time scales are probably very similar for kyphosis surgery as the surgical techniques used are essentially the same, but don't quote me on that!

I found things much easier once I got home as I could actually get some sleep at night, which helped!! I was able to do quite a lot of basic stuff straight away - making cups of tea for my visitors, walking up and down stairs, etc. I found it helped to keep getting up for a little wander around as it stopped me getting too stiff.

Hope this helps, if you think of anything else, just ask! :D

Little Ali
16th September 2007, 12:41 AM
Hi there :welcome2:

You've had some very good advice already so, there's not much I can add. I definitely agree that you are doing the right thing by having the surgery, especially as you've tried everything else and pain is seriously affecting your quality of life. Living in pain is really wearing and brings you down and surgery will be so worth it if it eases your pain.

In my experience, the hospital managed my pain brilliantly. I had the PCA for the first couple of days and then, if I ever felt any pain after that, they gave me something for it straightaway. I don't have any reactions to morphine and didn't feel drowsy after the morphine wore off. It's different for everyone though.

You're the same age as me so, your recovery should be relatively quick!

We're all here to support you through it all

:squeeze:

scolioscott
17th September 2007, 05:10 PM
As usual, everyone has got in before me with the good advice!

For what it's worth, I agree with the others. You've tried other cures, and on the basis that you only have one life, I think you should make the most of it and take the surgery. I know there are risks, we've just had to sign our 13 year old daughter's consent form and they have to point them out, but when you look at the alternative of not having surgery, ie a lifetime of discomfort/pain, disability and deformity and possibly impaired breathing - it has to be worth it. In an ideal world we wouldn't have to make the decision, but quality of life has to win (in my opinion).

If you read though the old threads on this site, you'll mainly find success stories - some more successful than others, but I don't think I've found any negative ones.

My daughter's scoliosis surgery is next week, so I'll be able to tell you more after that.

H 8)

hvdeen
17th September 2007, 08:54 PM
Hello again,
Wow-some great advice! Thanks again-it means alot to have support like this from people who have gone through similar experiences. Also some of my fears have gone a bit b/c of knowing a bit more about what I might expect to go through after the surgery from what you all have said. I like to draw so I was thinking that I might take some paper. I am thinking I might not have the concentration to read. How will I be able to sleep though in the hospital b/c I was thinking that it might not feel very good to lay on my back but I don't know if I will be able to sleep on my side. Is there a position that works best (ie side, back, stomach)? Is it hard to sit up as well after the surgery? Well I think that is all the new questions I have for now-thanks again! Also to scolioscott specifically-I really hope your daughter's surgery goes well-I will definitely be thinking of your daughter and you as you go through this.

GillyG
17th September 2007, 09:23 PM
I woke up from surgery lying on my back and for a while it was hard to even shuffle myself around as my muscles refused to listen to me! I have to say, I found it very frustrating not being able to shuffle myself back up the bed when I slipped down! :P

The head of the bed itself could be raised and lowered at the press of a button, so that I could sit up without having to move myself - it just sort of bent me in the middle!

Drawing would be a great way to pass the time - I definitely didn't feel up to reading, although I did go through a whole load f Sudoku puzzle books - I became quite an expert!

Don't worry, they soon have you walking up and down the ward, so the time passes more quickly when you can go off chatting! :spin:

Gilly xx

hvdeen
18th September 2007, 03:36 AM
Thanks for the info-sorry one more question. How soon do they get you up and walking? Is it like the day after or a couple days after or does it kind of depend on the person? I have heard that they will get me up the day after and I have also heard that it will be a couple days till they get me moving. I (and my family) am just wondering. It might be nice to try get moving sooner rather than later huh? I am worried about it being harder if I wait longer. Anyways thanks again.

GillyG
18th September 2007, 04:02 PM
I think every case is probably slightly different, but it's usually after the first few days, once you're free of the morphine drip.

Little Ali
20th September 2007, 08:10 PM
I think I first got up two days after surgery