The biggest reason I want to have an amputation is my quality of life. At the minute my condition rules my life and I am unable to do a lot of the things a 19 year old girl wants to do. My life is ruled by doctors and hospitals and every week I have to take the long journey to London to have the cast (on my CRPS leg that covers the ulcers) removed under general anaesthetic and another put on. After trying lots and lots of different ways I might be able to tolerate a dressing the only way was under general anaesthetic, this is absolutely draining. Believe me if there was another way I would love not to have anaesthetics, apart from anything else it completely freaks me out not to mention the negative affects on my overall health. Going weekly is absolutely exhausting, just as I recover from the previous anaesthetic I have to face having it done all over again, it destroys me. If I had an amputation, all of this would stop, and as a consequence my overall health would improve significantly and I wouldn't have to spend a lot of life in bed and lacking energy.
Another reason I want part of my lower leg amputated is mobility. At the moment my mobility is poor, I rely on crutches constantly but because of the pain, lack of energy and tiredness for the anaesthetics and my medication I am only able to hop very short distances before becoming too tired. The majority of the time I rely on my wheelchair because I am able to go further distances and not get as worn out. Sometimes I feel really old because my wheelchair is not comfortable and not really one made for a young woman. With amputation, there is the potential that I could be able to walk with a prosthetic leg which would be really exciting. There is also the potential that the pain might return, but if that is the case then I would still benefit because the part of my leg that does not function will have been removed meaning it wont be heavy to carry around and it wouldn't get in the way when I try and do things. The outcome is unpredictable and I am aware of that but sometimes you have to take risks and do what you believe is right.
For me, the ulceration on my foot/ankle is one of the biggest reasons I am going to have my leg amputated. Since August 2014, my foot has had an open wound on it in one place or another. I've had skin grafts and skin flap surgery to try and heal my foot but all attempts have either failed initially or just reopened again. At times, the ulcers have been as deep as the bones in my foot and almost the entire length of the top of my foot. There is the constant threat of infection at any time and my body is always fighting bacteria that get in the wound. The CRPS means that the dressing can ONLY be changed under general anaesthetic which damages the rest of my body and limits what I can do for ages afterwards. My leg has been in a cast for about 18 months and so has almost entirely wasted away and so I am unable to move any part of my foot or ankle.
Last but not least, pain. Pain is not one of the reasons I am having my leg amputated but obviously, it is a contributing factor. CRPS pain is like nothing else, it is worse than any pain most 'normal' people have ever experienced, but you feel it all day, every day and it never stops. Some people believe having an amputation will solve the pain, but the chances of being 'pain free' even after amputation are slim and this is because the nervous system is so complex. The risks of having an amputation are that the CRPS simply moves further up the limb to the stump and the chance of phantom limb pain is pretty high. It is a risk but for me, it is a risk worth taking. Not only do I have the nerve pain, but I also have the 'normal pain' anyone with a big ulcer on their foot would have and amputation will get rid of this pain once everything has healed.
I hope by reading this, you'll realise just some of the reasons why I am going to have my leg amputated. To be honest, to list all the reasons I would be going on and on forever so I thought I'd make this as concise as possible. By no means is this the 'easy option' and it is not right for most people with CRPS, but it is for me. After having my amputation, I am hoping to be able to walk again with a prosthetic leg. For me, this is a big 'ultimate' goal but something I will do my best to make sure it happens.
I have a long, hard journey ahead of me but I also have renewed hope.
I hope by reading this, you'll realise just some of the reasons why I am going to have my leg amputated. To be honest, to list all the reasons I would be going on and on forever so I thought I'd make this as concise as possible. By no means is this the 'easy option' and it is not right for most people with CRPS, but it is for me. After having my amputation, I am hoping to be able to walk again with a prosthetic leg. For me, this is a big 'ultimate' goal but something I will do my best to make sure it happens.
I have a long, hard journey ahead of me but I also have renewed hope.
Cheers to the future!
Hi Hannah, as a fellow suffer of CRPS of the legs I can fully understand your reasoning for electing to have this surgery..
ReplyDeleteMy ulcers are nowhere near as bad as yours however they are driving me mad with the constant dressings, infections, weeping, additional pain and unknown outcomes!!
I am 45 years old now and was 40 yrs old when struck down with this condition but I had bought up a daughter, travelled, started a career that I had enjoyed, I can't imagine being 19years old and having to go through all of this!!
I think you need to do what is right for you, whatever will give you the best quality of life...
No one has to live your life, experience your pain, fatigue or frustrations except you!
You are obviously a very mature young lady that has fully researched amputation and you know the benefits as well as the risks, you are going in to this with your eyes well and truly wide open...
You don't and shouldn't have to explain your decision to anyone however it's great that you are spreading awareness of CRPS..
Good luck on your journey, I am sure with your positive attitude that you will eventually have the life you so rightly deserve..
Take care
Claire