Should I opt for amputation

[19django47]

I am a 66 year old male and a few years ago I developed leg ulcers on both legs. Now though they have both increased in size so much that they have gone from knee down to ankle and right around the leg. So both legs have no skin from knee to ankle and on the left one it has reached the sole of my foot also.

The district nurse comes every other day to change dressings but two weeks ago she called an ambulance as I was very ill and unable to move. At the hospital I was put on an anti-biotic drip and had regular blood transfusions.

I am in pain all the time and at times it's so bad I ball my eyes out like a baby. All the strong pain killers have little affect.

Some health care professionals talk about grafting skin from another part of my body whereas others say that it will not work because of the reason they developed in the first place. As I see it, while they are treating me like a lab rat, they are subjecting me to unnecessary pain and in the end, they all agree, amputation will most likely be the only option.

I dream of waking up without pain, I have totally forgotten how it feels.

I chose this forum because I know nothing about managing with losing my legs. Would I opt for having one removed, then the other at a later date. How would it affect my every day life, how difficult is it to drive, would I need to make major alterations to my car or can I learn to use the pedals with false legs.

You see I know so little, I have a hundred questions, as the doctors say, "Once it is done, you can't reverse it". Do they honestly think I am that stupid. Or as my GP was banging on about, 'phantom pain'. I told him that I am already in pain, I will take my chances.

What I value most is my independence, but as I also have a shattered right pelvis, it is very difficult to get around, even with a pair of crutches. I need an artificial pelvis replacement but I can't have that operation until the leg ulcers are under control.

I would really be pleased if any one who has been through amputation and know what it means to an individual like me. True it's not reversible, for that reason I need to do lots of homework, or research.

Thank you,

Micky Sullivan (19django47) 

[cherylm]

Hi, Micky, and welcome......
This is a good place to start doing homework...and yes, you're right: you do need to do a lot of homework before deciding whether amputation would be a good solution for you.

My first question is: what caused the leg ulcers to develop in the first place? Was it an accident? If so, is that where the shattered pelvis came from as well? Do you have circulatory problems (such as diabetes) that are contributing to the ulcers staying open so long? How active are you generally able to be now? Are you bedridden, housebound, or are you able to get out and engage in limited activities? Is your pain constant, or does it "come and go?" Are both legs equally bad, or does there seem to be hope for one of them?

Ten years ago I chose amputation as a way to rid myself of a badly fractured foot that had been surgically "repaired" many times and kept breaking down on me. I was also in pain and had become less and less active during the year-plus that a variety of surgeons tried to repair the fracture. I went through a similar hospitalization with IV antibiotics and blood transfusions at one point...that's when my doctors said that they would offer me two choices: they would make one more try at fixing the fracture, keeping me in a cast for many, many months with extensive after-care and antibiotics as needed...or I could choose amputation. They also told me that, if the infection that had landed me in the hospital ever returned, it would most likely kill me. It took me only a few hours to choose the amputation...and in my case that turned out to be a good solution. But it is, indeed, a radical and permanent choice.

It's harder to be a bilateral amputee than to lose only one leg. I'm really lucky: I still have my right leg and that can make a real difference. I do know amputees who have lost both legs and live a good, quite active, life but it takes a lot of energy and effort. If there is any choice at all in the matter, surgeons will advise amputating "one leg at a time" with time to recover and learn how to deal with one leg at a time. It's really the most sensible way to go, as long as your health and condition of your legs permits it.

Driving is a very individual question. I do know bilateral amputees who drive with an automatic transmission...but it does depend on how well you can learn to control your prostheses and how well you can learn to sense the pressure on the pedals. Having one "real" leg can make the driving issue much easier. Some bilaterals use cars with hand controls instead of pedals...if I were in that position, I do think that I would want to go that route myself. And I also know of one bilateral amputee who drives a truck with a manual transmission...but he's fearless (and perhaps a little crazy).

I will say that phantom pain can be a problem for amputees...and while it's called "phantom" pain, the pain itself is very real. It just happens to be truly painful in a body part that you no longer have. But phantoms are not a "given" in an amputee's life. In the ten years since I lost my leg, I've had very, very few instances of phantom pain, and they've been very short-lived. I definitely have MUCH less pain since my amputation. Phantom pain is a bit of a mystery, but there are ways to decrease the chance of it occurring. A surgeon and anesthetist who are experienced with amputations can help with pain control in ways that can improve your chances of remaining pain-free after amputation.

Ask every question that comes to your mind. Since you have time to look into this decision, gather all the info you need in order to feel comfortable making your decision. There's enough experience among our members that someone is very likely to have gone through whatever you're wondering about.

[19django47]

Thanks for your message Cherylm. let me explain what happened more clearly. About 10 years ago I developed an ulcer on my left ankle, very quickly it became larger. Then I developed one on my right foot.
Then in November 2009 I was hit by a car causing both pelvises fractured, pubic bone, shoulder, back bone(lower Vertebrata)
were all fractured. I was on my back for 4 months, of the 5 months I spent in hospital. All fractures healed except for right pelvis that has many fractures for which I need crutches to move about.
Because I was laying down for all that time, it helped my blood circulation and the ulcer on my left leg went down to the size of my small finger nail and on my right foot healed 100%. Then because of a tiny knock on right shin,that went the same.
Surgeons refuse to touch r pelvis while I have ulcers for fear of infection.
I must say good night, can't keep eyes open. TTFN
Michael

[grigoryevich]

Hello Michael

I am a double high AKA amputee. I lost first years ago and the other followed last year. I do not wear legs at all and have no intention of doing so. I am also older than younger and to wear prostheses with above knee is always going to be a struggle. Much harder when older and harder still with broken pelvis. I do everything I wish by using other techniques and frankly am very adapted already.

There is of course the pride issue because there is no question, people will stare but (I always say to myself 'that is because I am an international sex symbol'! LOL

I drive myself with an automatic with hand throttle/brake and I also fly a high performance Mooney Ovation (modified to my own design).

If you wish to have more information, just ask

[stonecutter]

Nov 21, 2014 10:01:09 GMT -7 grigoryevich said:

...people will stare but (I always say to myself 'that is because I am an international sex symbol'! ...

Glad to see you are keeping that sense of humour!

[annanicole]

I figured I'd be more comfortable on the beach now, because people will be staring at my missing leg versus my chubby belly:-)

[Ann]

Hi Micky, Welcome to the forum .... I was wondering whereabouts you are located, whether in the US or UK, because some things might be very different, though I am thinking that you may be here in the UK as you talk about GP's and District Nurses.

I have been a bilateral below kneeamputee for many years, but, although I don't consider 66 years, as particularly old, I will be honest and say that to rehabilitate bilaterally above the knee on prosthetic limbs is not an easy process even for young amputees, and the kind of very high-tech prosthetics seen via the media are often very costly, not always available on the nhs, so that is something to consider and get advice on from the healthcare professionals if you were considering the prosthetic route as a bilateral above knee amputee. The other route would be the same as our friend Grigory here has taken, which obviously is still giving him a good quality of life.

Driving in the UK and other parts of the world will probably be different, in the UK you probably would not be allowed to drive with your prosthetics and be required to have hand controls instead of foot pedals, though this easily do-able especially with automatics.

Phantom pain often means different things to different people, for me it hasn't been a major problem, although  can sometimes still be for some amputees, but as Cheryl says there are ways of addressing this and modern surgery techniques can often help too.

You really need to gather as much information as you can and if you can talk to other amputees of this level in your area., also find out what kind of support would be available locally. If you are in the UK, you are quite likely to find local disablement services centres who may be able to put you in touch with local amputee user groups, or organizations who can give your more advice. It might be good for you to ask your GP to refer you to a specialist amputee rehab consultant at a disablement services centre and talk things over with them, as they will probably be able to help you better perhaps, even with your present situation, but they can also help with referring to a specialist surgeon.

As others have said, keep asking questions and gather all the information you can before you make a definite decision, also get the right specialist health input too, so you get the right advice.