Life In A Brace after Scapulothoracic Fusion
If you are about to undergo a thoraco-scapular fusion due to the problems caused by FSH Muscular dystrophy, you might like to know about my experience in the situation that you might be about to find yourself in.
First of all, I will give you a bit of a background as to why I am writing this article. My name is Gareth, I‘m 26 years old, male and work as a store manager for a well known retailer. I am the fourth of five children and I like one of my other siblings suffer from FSH muscular dystrophy that has run in my father's side of the family tree for an unknown number of years and generations. My father only found this out once all five of us were born.
I first of all underwent the procedure that you may at the moment be considering, in December 2003. In fact as I type this, I am wearing an arm brace for a second time as I convalesce from surgery on my left shoulder which occurred in April 2005. The surgery on my right side proved to be a success after a brief problem with the style of brace then being used. The stability of my shoulder is now much better then it ever was.
Like many people suffering from this condition, raising my arms and lifting items above my head proved to be problematic at times, the surgery has remedied this complaint. I feel more comfortable now (in my line of work there is a lot of lugging boxes around above head height) lifting and lowering things from above shoulder height. My shoulder is definitely a more stable platform after the op.
I would like to share with you some information (both positive and negative), that I discovered whilst recovering in the brace after both of the operations I have had to go through. I do hope the following list helps to put some of the questions you may have to rest.
1. Trust the consultants, they are the experts and I could not have asked for a better level of care during my time under them (cheers Mr Funk!). They will answer any questions you will have, don’t be scared to look like a fool, if you are at ease and know what is going on you will be more relaxed.
2. This is the biggest thing I learned, and the only thing I wish I could have changed - Exercise before the op, the fitter you are the better it is. You will lose muscle during the time you recover. My upper arms lost a lot of muscle which I‘m still trying to recover, due to the fact that they are stabilised to stop your shoulder moving.
3. Exercise during recovery, as soon as you feel comfortable. I put on a lot of weight during my first op due to being lazy, and eating and drinking too much (it was Christmas mind).
4. My experience was it’s not as painful as you expect (all depends on your pain threshold I suppose). It’s more discomfort then pain, after 4/5 weeks the bone will have started to fuse and your shoulder starts to feel a bit more solid.
5. Support - I have been very lucky to have had a good support system within my family. This is a key measure to help you get through the 10/12 weeks before your brace comes off. You need to get at least 2 people to help you out on a regular basis. You need someone to support your arm after the brace is removed whilst the other person washes you, changes your upper body clothing and sticks the brace back on. Without this support I would have struggled to have gone through the recovery period, it is important.
6. There are times when you are going to smell, wearing a brace at all times and only washing twice a week means you are going to smell at some time. Get over it, it’s going to happen
7. You will crave a bath or shower, it is the thing that I look forward too as soon as the brace is removed.
8. Sleeping - it is difficult, especially when you are healing up as you can never find a comfortable position to lie in. If you sleep on your side like me, you will wake up as it can’t be done in any comfort whilst wearing the brace.
9. The brace can be constricting, it can be uncomfortable at times and it will frustrate you as it will stop you from doing certain things. I can not really tell you what your experience in the brace will be like as it all depends how your shoulder has been fused. Everyone will have a different experience. However, my second time has been much easier as I had an idea what to expect, and once you get used to it, it is not really that bad.
10. Your social life will probably be impacted upon, as you are limited to what you can do, no driving, no nights out in packed pubs, sitting in the cinema can be problematic, as can eating out.
11. However, I rekindled my love of reading.
12. Physio after the event is key, work at it as hard as you can. It will be tough, in my opinion, even tougher then the op and the time in the brace. This is because it is up to you the harder you work the more the operation will have been of a benefit. You will get tired and sore but the effort is worth it.
13. Three months off work, hurrah!
14. I feel that the outcome is well worth what you are thinking about undergoing, at times you will find the going tough, as will your family, if you like to sulk and moan like me. However, I feel much more confident in my body's ability now, to do something that was a struggle before. Yes, it will be hard, but it will in my opinion be worth it. I hope that some of this spiel will help you make up your mind.
15. It can’t be that bad I‘ve had it done twice!