Contemplating amputation...

[gerberadaisy]

Not sure where to start here... hmmm... Okay, my name is Penny, I am 39 yrs old, living in Canada. I was involved in a car crash in March of 2009. (A drunk & drugged driver was heading north on a southbound carriageway of the highway. We collided head on at highway speed. She killed her passenger, my husband was driving and sustained some vertebral injuries and I.. well, the most serious were a fractured femur and then shattered talus and calcaneus.) The orthopod on call that night happened to be an ankle specialist. He did warn me before he took me to the OR to fix my femur, that he may have to amputate my foot. In a nutshell, 2 yrs later, yes we managed to "save" the foot, but I never realised that "saving" the foot would mean such a deficit in mobilty. 2 yrs later, I am at work, in a sedentary capacity. I use a walking stick every day, and if I overdo things, I'll be back on 2 crutches for 3 days to 3 weeks! I can barely manage the housework and the grocery shopping and my foot will be knackered!! I am still going to physio to try and get more strength happening, and although they say it may get a little better, no one knows for sure. I guess I am kind of at a crossroad, which is where you guys come in... please...?!! I think often about trading my foot in for a sportier model, but although I realise wearing a prosthetic is not without it's own perrils, I don't know how to weigh up whether this foot is worth keeping or not. I have done some online research with regards prosthetics, and I see people living normal lives, and walking without canes and without even limping. I know it'll not happen overnight, but thats the part I'd like to hear from anyone who reads this. WHAT'S IT REALLY LIKE TO WEAR A PROSTHETIC EVERY DAY? How do you deal with getting dressed and showering, and what if you have to have a pee in the middle of the night? Could you do an 8 hr day on your feet? Ride a bicycle? Take the dog for a walk? Would it really be all bad? Any insight you could give me would be greatly appreciated!! I think you are all extremely brave people.

[cherylm]

When someone is in a lot of pain and is losing mobility, a successful amputation can be a godsend...I know that mine was for me. I had been through three years of progressively worsening foot problems -- first on my right foot, then on my left. The right foot was able to be literally saved with a massive surgical rebuilding...the left foot turned out to be unrepairable. After several failed attempts to set a spectacularly bad fracture, I developed MRSA and "died" briefly...twice. Once the infection had been knocked out, my orthopod said that he'd be willing to continue attempts to save the foot, but that I "might want to think about amputation as an option." I chose to amputate, and I've never regretted it.

Would I rather they'd been able to save my foot? Absolutely. But did I want to keep up repeated attempts that inevitably ended in another breakdown and more pain in the hope a save MIGHT happen? No....and I think that's what you have to decide when determining whether you're ready to look at amputation.

Soooooo...how sedentary have you had to become since your accident? How pervasive is your pain? How many times have you had to resort to going back on crutches? How much time can you spend on your feet now? Are you able to get any enjoyment from walking? Are you willing to take a chance of facing possible problems related to an amputation? Are you good at adapting to new methods of doing things? And, most important of all, how determined are you to succeed at living life one-legged? All of those things are worth thinking about honestly. If you expect to slip on a prosthesis and go skipping off into the sunset, you'll likely be disappointed. But if you're willing to put the effort into learning to work with a prosthesis, you can have a good life!

It took me about three months to get to the point where I could wear my prosthesis comfortably for a full day. My entire first year was a continual struggle to keep me in a prosthesis that fit well...a new amputee loses a LOT of muscle during their first year, and the stump shrinks dramatically. I felt like my prosthetist's office was my second home during that time. And by the end of a day, I was exhausted. That's the downside.

Now for the good news: After six years at this, I'm living a pretty much normal life. I do not have pain issues. I wake up in the morning, put my leg on, go about my business for the rest of the day, and don't take the leg off until I go to bed at night. It's not much different from putting on my shoes. I do sometimes use a single cane (mostly when I'm outdoors in a crowded situation), but I know plenty of amps who are cane-free, as am I when I'm in familiar surroundings. I worked for several years following my surgery (retired about a year ago), I go out with friends, go shopping, visit museums, drive, swim, garden. I do move a little slower than I did when I was younger...but so do most of my able-bodied friends.

Practical matters: I get dressed just like anyone else, although I admit that I tend to like a wider-legged jean than I used to. I wear skirts, shorts, bathing suits, whatever. For the first few years, I used a shower stool to sit on to take care of bathing issues...but a couple of years back I treated myself to a water-activity prosthesis, so I can now shower standing upright. The water leg also makes it easier to get out of a swimming pool, although I know plenty of amputees who have no problem exiting a pool without a prosthesis. I continue to do household repairs, but I did invest in a ladder with a handle on top to help me steady myself when I'm "up in the air." When it comes to maintaining my prosthetics, it requires a few extra minutes a day and a little extra space in the bathroom. The nighttime bathroom run depends on how good you are with crutches...I'm lousy on crutches, so I just pop on the leg to the point where I'm able to walk on it and I toddle off to do my business. No problem.

Amputees are not especially "brave," really...but what we are is VERY determined. A successful adjustment to being an amputee requires that you're willing to work at figuring out how to do whatever it is you want to do. Attitude is at least 80% of what matters...at LEAST.

Good luck in reaching a decision that's right for you...feel free to ask any questions that come up...when youre looking at a life-changing event, there is no such thing as a stupid question!

[allenuk]

Hello Penny.

That really is a rock and a hard place, isn't it.

Cherlym is right, of course. Many amputees live lives just as she describes - getting on with it, walking, cycling, (some even running!), working, looking after families, having babies (well, some), and on and on. And all with very few complaints.

Unfortunately, many other amputees spend years traipsing back and forth to hospital clinics, to prosthetists, physios, and so on, in apparently never-ending attempts to 'get their sockets right'. And this is as possible in Health Insurance USA as it is in socially provided Health Care in the UK. (Not sure how it works in Canada).

I tend to fall more in the second category than the first, but I do still 'get on with it', cycling, walking (less than I'd like), doing housework, cooking, and so on.

I think you need to REALLY push your doctors/consultants on the question of 'how much better will I get?' and 'how long?' If they won't give you a straight answer, and you get the impression that it could be decades, and then only MAYBE get better, then amputation might be a better choice. (On the other hand, if they say give it a year and it'll be much improved, then maybe listen to them).

Difficult, I know. But one thing to keep in mind is this. There are vast numbers of health professionals in most of our countries dedicated to the care and rehabilitation of amputees - partly because of wars, partly because of the prevelance of amputations as a result of some diseases. There are also vast numbers of amputees, many on websites such as this one, willing and pleased to offer help and support all the way through, and after, the operation.

There isn't such a network for pain management, as far as I know. It tends to be drug (medicine)-led, with some hypnotherapy or yoga thrown in occasionally.

Not much consolation, but you will get more help as an amputee than as someone in pain.

Wish the answer could be black and white, which is what we all want, and seldom get.


Keep asking your questions! That's what we're here for.


Allen, bka (below knee amputation), London UK.

[gerberadaisy]

Wow! Thank you both for that wealth of information! You've certainly given me heaps to think about. I am going to go do just that, think about all this info, and no doubt will come up with a bunch more questions... I'll be back...

[barclay]

Hi Penny - I am impressed with my board mates - I think you have two really good answers. I asked the same question about 5 years ago and decided for the amputation and it was a good choice for me.

That said - For 15 year I lived with a mangled foot and that was OK. I was losing a toe every few years due to infection and the foot was twisting over on it's side so I actually walked on the outer edge. I would say roughly that what I have now with the prosthesis is about the same in terms of the ability to do things - maybe this can help you estimate what you will be facing with the prosthesis.

The advantage for me is that the infection risk is gone. Five years ago when I asked this question, I was had been through 9 operations to try to get an infection healed and had no life outside of the hospital anymore.

I am lucky as pain has never been an issue due to nerve damage.

One last thing on the down side is explaining to people that I am not "sick" for having chosen an amputation - esp doctors can't understand why someone would 'opt' for amputation and that can be very distressing. What people somehow don't understand is the a healthy foot was not on the list of options - after 20 years that was clear. Maybe for the Dr. it's a clear show that you don't believe that they can help you and that's what can make them aggressive ? Anyway - for me that's probably the most difficult thing - and mostly I hide the fact that the amputation was a choice.

I hope you find a good solution,
best,
cynthia

[gerberadaisy]

Oh my.... Thank you guys for all your input here. No I still have not decided yet! I do have pain, yes, but mostly when I overdo things... actually, I am not being really honest there... I have a desk job, and after a few hours of just sitting, my foot locks up and hurts like crap. I don't take anything for it, as it doesn't really help if I do. I am in the process of trialing a day (8hrs) of being on my feet. I am at 4 hrs, and it is a struggle. It leaves me very little "battery" when I get home to cook us dinner and do a bit of housework. And I am usually a bit stiff and sore the next day. Again, nothing really helps with this pain, so I don't bother taking anything. In a nutshell, NO, I am not having fun!! I do not get any enjoyment out of walking. It is something I have to do. Allen suggested I press the docs for a better understanding of where this could be going. Truth of the matter there Allen is that I have already way exceeded expectation!! It boggles my mind that if they never thought I could acheive more than a VERY sedentary life, why keep the darned foot? It woud've saved me a pretty tough decision... Yes... spilt milk, I know... I guess maybe I should be grateful that I get some level of choice in the matter, although, as Cnythia pointed out, there are not many out there that can understand actually WANTING to be rid of a foot that is seemingly not serving as a foot should. I didn't realise that doctors were of the same mindset. Cherylm, I can totally believe you when you say that attitude is more than half the battle won. I do believe that that is why I got more out of my foot than doctors/physio etc expected. My stubborn independent nature. I have put a lot of time and energy into trying to rehabilitate this foot, and from what I gather from various sources, you gain the most ground in the first 2 - 2 and a half years. So now that I have gone beyond the 2 yr mark, I am kind of thinking... is this it...? Is this what I am left with for the rest of my life? Would my energies not be better vested in something we KNOW could work, rather than something that maybe might perhaps if we try this... could work...? That is just my current frame of mind... WOW!! It certainly helps to have somewhere to talk about this stuff I just realised!!

[cherylm]

Penny, from what I know about rehabilitation from foot problems, that 2 - 2 1/2 year time frame seems to be put out there fairly often. I know that I was able to start walking (at least for short distances) as soon as I got my prosthesis, but that it didn't start feeling natural and comfortable until close to the two-year mark. I have a friend who suffered a shattered calcaneous as the result of an accident, and he was told that about two years and a good number of surgeries MIGHT get him back to limited mobility. (He opted for an amputation right then and claims that it was the right decision for him.)

I also have a "calcaneous condition" on my remaining foot...I had a calcaneal transfer as part of the surgical rebuilding of that foot. It was a success, but it took a long time to recover from, and I do have some problems with stiffness and aches in that foot. If your injury was serious and the repair not fully successful, that could be something to look at closely while you're considering the possibility of an amputation. A badly damaged heel can be hellish to walk with.

I've learned since my own amputation that not all doctors are as forthcoming as mine were...it's a sad truth that some doctors believe that amputating ANY body part, no matter HOW painful or useless it may be, constitutes a "failure" on their part. I was also an "elective" amputee to a degree...although I really can't imagine going through any more of the failed repair attempts I endured on my left foot. A good number of family and friends took a while to adjust to my having chosen to lose my leg, but I was fortunate in that my doctors were supportive of my choice.

If you've really pushed hard at rehabilitating your leg and have exceeded medical expectations, and are still mostly sedentary and in pain, it does leave you in a real quandary. If you can consult with a doctor who is experienced in performing amputations and ask about possibilities of gaining an improvement on that front, it might give you some more good info in reaching a decision.

[allenuk]

Penny.

Thanks for posting again, and thanks for the additional information.

In some ways what you need is a forum for People with Foot Problems who decided Against Amputation, just to see how they all got on in future years! Round here, 99% of the elective amputees are going to say that we made the right decision, for all sorts of reasons ranging from (a) because it's true, down to (z) because we wouldn't like to admit we were wrong.

Well, as I said earlier, I am in the category of less-fortunate amps who just can't seem to get a comfortable socket, but thinking back pre-amputation, I can recall not being able to walk more than 50 yards, and spending a lot of time sitting around. In fact my weight-gaining time definitely started in those couple of pre-amp years (and haven't got much better since). And although I have (do) had problems over the six years, in the first year or two I was walking up to 20 miles each week, on the plastic leg. (Far more than I'd walked before I had foot problems, come to think of it).

And even now, I still get around the shops, cycle 10 miles at a time, and find time to cook and do housework (wouldn't be a bad idea to show your man where the kitchen is, either!). Point is that even on a not-very-good plastic leg I can do FAR more than I could on my definitely sub-standard real leg.

But as you well know, come the crunch it's going to be your decision. All that the rest of us can do is to tell our stories, and hope that you can find parallels in our experience.

Best wishes,


Allen.

[ann-]

Hi Penny
Just wanted to add to what Allen and Cheryl have written, agreeing with what they both have said. I have been an amputee for over 40 yrs, and can confirm that if you are otherwise fit and healthy, and the residual part of your leg is in good condition, with good fitting prosthetics you can, and prob shld in theory should live a normal life.

I say in theory, because as Allen has said, acutally getting a comfortable socket that allows you to do everything day things without pain, is the key and can be sometimes difficult. Both Allen & I are in the UK with the NHS system, where to be honest the system is struggling, which is what I find the most frustrating aspect of being an amputee. Do check out what the provision is in your location, if you can talk to other amputees, etc.

Also, be prepared almost to put regular life on hold for about nine months if you go ahead with the surgery. You will probably be out of hospital fairly quick after the op., and also may have your first prosthesis fitted very quickly. But as Cheryl explained, it takes a while to build up tolerance to wearing/walking with a prosthesis, it is a process. You will be putting your weight thro part of your leg that isn't used to taking pressure/weight and also that has been newly operated on.

I hear many people pre-surgery say they are going to tough it out and get through the rehab quickly, it is though a process. Your nerves etc will be healing, your stump will be shrinking, and you will be having to have frequent socket changes through the first year or so, and probably spend quite a few hours sitting in prosthetic fitting rooms. Once again, a lot depends on your prosthetic provision, and rehab facilities, and if everything goes smoothly you may not be inconvenienced so much, but if you have to wait many weeks between fittings to get a better fitting sockets it will be more difficult, you are likely to have more pain and be off your leg more. So I'd probably say the year following, you need to have enough time to concentrate on yourself, and your leg, and building up your strength, and friends and family also need to realize this.

Initially, you might well feel you have swopped one pain for another, but that should settle down and gradually subside, though for some people this doesn't happen so well, and they do continue with pain and need pain meds. This could be from something as simple as an ill fitting socket, but other times it could be due to damage thats previously been done to the residual limb, so that is something else you probably need to check out before surgery, the better condition your residual limb/stump is in, the easier it is going to be for them to fit and you to walk with the prosthesis, so ask lots of questions and check things out.

Sorry, if I am sounding negative, just want to point out to you that, it isn't always as easy as people imagine ... you will need a fair bit of patience and be prepared to put the time in, it will be for a short while, like a job in itself.
All that said, most of us live a pretty happy and normal life, which for myself, in the main, is pain free. You ask about washing, showering etc, most of us do it pretty normally, or find ways round doing things, which you will get pretty good at.
I have both legs amputated below the knee, and have raised three children, walked the dogs (that you mention) and have worked full-time (though not standing on my feet for 8hrs) etc., so you see once you have established walking, things are not particularly difficult from that side of things. For the main I walk unaided, though have crutches on standby in the car for if I have problems, and when I am not wearing my legs, these days I use a wheelchair. I imagine your face is dropping when I say wheelchair, but I think of it more as an enabler that keeps me independent, and remember I have two legs, so you will prob be much more mobile than I am. Like Cheryl, I too go out with friends, go shopping, drive etc and as she says, we are not particularly brave, (and if you saw me in the Dentists chair, you would see that) but we do get very determined.

Good luck with it all ... feel free to come and ask and questions that you think of, knowledge and preparation will make you feel more in control of the situation. Take care.

[allenuk]

Penny: Ann's right, of course; it IS a process, not a one-off, and it's very hard to jump the queue. I have met a couple of people who HAVE jumped it, but they were both fit and young - a bloke of 19 who wanted to play football again (after a bka), and did, within 3 months. Amazing. The other was Fiona, who was in her late 20s when the 2005 Tsunami amputated her leg below the knee. To give you an idea of HER determination, when I first met her in our London hospital she was travelling across the city on the underground (subway), on one leg and CRUTCHES, and wearing a shoe with a moderate heel on her one remaining foot.

So, your speed of recovery depends to some extent on reality, plus luck (good or bad), plus that iron determination that Ann alluded to.

Allen

[gerberadaisy]

You guys are just awesome. I am so glad I found this site. and yes that definitely is the scary part I think, is potentially being worse off than I am now. There is no such thing as trialling a prosthetic for a month or so to see how it works for you! And thank you all for your input. I certainly do need to know the good and the not so good stuff too. Oh, and Cherylm and Ann, I don't care what you say, I still think you are all very brave people!!

I do know that I have the determination to make life work for me. My big concern I guess on the mindset part is that I put so much time and energy into trying to get my foot right, that I hope I haven't flattened the battery. Every time you get set back it is harder to bounce back. Perhaps that too is where I think it could be different with a prosthetic, is that things do get better as time goes by. It wasn't 3 weeks ago, I overdid things (doesn't take a lot!!) and I woke up the next day with a foot so sore I was back on 2 crutches for 2 weeks. This now 2 yrs down the road... That is really when I think to myself.... well, I have pain now, and very reduced mobility. At least if I got a prosthetic, and still had some pain, I am sure that I would get more mobility in the trade off.

These are all thoughts, and I am a great theorist. Come to the crunch... I am an even bigger chicken!!!

The extent of my research has been a few websites on foot prosthetics, and well, you guys really. I haven't even plucked up the courage to talk to my doc and ask him what he thinks. (he is a bit arrogant and not easily approachable, but a very good surgeon.) And yes, I would have to check out with my insurance how much they would cover for prosthetics, and maybe go and visit one even. The problem is you see, if I physically DO something about it, it makes it seem more real!!! Right now, in my little head, if I am just exploring, it's just venting thoughts and stuff. It is not actually really doing anything... silly... I know... And exactly what the deciding factor will be, I really don't know...

There are some pretty amazing stories out there, and you guys are all contributors. Why is it Allen that you are having such a hard time finding a prosthetic that fits snugly? How do they make them? And what are they made of? I sure hope things better for you mate.

[cherylm]

Penny, you might want to actually do something about "making it real" for you...if it's possible for you to consult with a doctor or two, and then perhaps visit a prosthetist's office and ask to see some samples of prosthetic legs and discuss what types of prosthetics might apply to someone in your situation, it could give you a realistic look at what an amputation could entail and what challenges you would have to face.

One of the things I wish I could have done is exactly that. I was stuck in the hospital, trying to do my own "research" with NO mobility and NO access to the Internet. I asked massive questions about the surgery itself and possible complications...but I knew so little about prosthetics that I didn't even know what I should be asking on that front! Had I thought to ask to see a real below-knee prosthesis and how it went on, it would have both reassured me and let me know that there was a fair amount of effort going to be involved in learning how to heave it around. (That was probably my biggest surprise with my first leg: it weighed a LOT! I eventually learned that, the better the fit of the socket, the less you notice the weight of the prosthesis. Nowadays, my prosthetic side feels no heavier to me than my "real" leg, because it fits much better and my muscles are much more used to walking with a prosthesis.)

I can't speak to Allen's situation on his socket-fitting problems, except to say that he's given it his best shot for quite a long time, but I'll tell you about mine. I have a spot on my stump where the bone is pretty close to the surface...there's not much more than a bit of skin separating the bone from the side of the socket. Now I was told by my "leg guys" that a good prosthesis does not hurt...but my first leg DID hurt at that point, and it took a few adjustments to enlarge the socket at that point where the bone hit. It STILL takes a couple of tries to make that spot pain-free...but I've learned now that it can be done, and I know to keep letting my leg guys know that I'm still having a painful spot, until they get the adjustments "just right" and I'm back to being pain-free. That entails grinding away just a tiny bit of my socket wall, right where the bone touches the socket...you need to provide a "relief" for the bone without making the socket so loose that you lose the snug fit. That's easier for some people than for others.

Soooo....keep on with your research and don't be afraid of facing reality head-on!

[allenuk]

Penny: funnily enough, I was about to make the same suggestion as Cherylm, that is to say visiting a prosethetic 'centre'. In the States, they have CPOs offices; over here, it's limb-fitting centres attached to general hospitals. Not sure how it works up there, so do enlighten us. If it's the 'CPO' system, then as it's a commercial enterprise they'll be DELIGHTED to see you and sell you a leg; if it's like the UK system, there are usually patient support groups to talk with.

But definitely worth girding up your loins, again, and seeing what you can find out face-to-face.

Why is my leg so hard to fit? Dunno. Luck, I suppose. I've had my share, both ways; after being an alcoholic for 30-odd years, giving up the drink and not having liver damage is Good Luck. My boney stump is possibly Bad Luck, but I'm not that bothered; there are more important things in life than the ability to walk 10 miles!

(Oh, and as for your arrogant doctor (and most of them are), if he's 'just' your surgeon, fair enough, but if he's supposed to be your general practitioner, then change him!)

Allen.

[ann58]

Allen & Cherylm.....Oh and Ann. You guys are awsome....this is surely the website to talk on.You have given out so much info. I was more like Cherylm. {knew nothing abt. amputation} even after it . I have to give credit to my daughter-in-law {who is a nurse} that helped me out. And also a friend on another forum Higgy. Good luck in whatever you do.

[allenuk]

Ann(58):

Enlightened self-interest, I fear.

Shantideva, a Buddhist sage, wrote:

Whatever joy there is in this world
All comes from desiring others to be happy.
And whatever suffering there is in this world
All comes from desiring myself to be happy.

So I'm just making myself happy!


Allen

[barclay]

Hi Penny, When I was in the situation you are now, I was also in therapy to get out of a unhealthy marriage. Having a therapist be able to reassure me that I was not self-destructive or considering the amputation for any other 'ulterior' reason (he was against it I think, he didn't say though) took a lot of worry and pressure off me. It was very helpful to have someone who's job it was to listen to me and help me sort things through as well.
Because therapy still has a stigma attached to it, let me just say explicitly that I would recommend this to everyone who is facing this situation and that the recommendation has nothing to do with what you've posted!!
my heart is with you - the horns of this dilemma are sharp.
Cynthia

[ann-]

I understand what you are saying Penny, I think any kind of major surgery which is irreversable is a difficult decision to make.

My initial amputations were as the result of trauma and there was no discussions, but even as many years of being an amputee a few years back, I had to make the decision to have one of my stumps re-amputated a bit higher up. It had never been in the best condition and at the time of my accident the knee only just saved, but everything below it quite mangled.
I'd always had problems getting limbs made but since the 90's had major problems and off and on over the years there had been talk about further surgery, I had conflicting advice which ranged from it not being a good idea, to it being the best thing I could do, then different ideas about the level etc. The concerns were, probably much as yours, what if something went wrong, what if I got an infection, would I be worse off, etc. etc.

For quite a few years I got by on what is prob quite an old fashioned prosthesis, for some years it was pretty good but then I had probs getting that made and kept getting infections. So finally had to weigh the balance and decided to go ahead and have the surgery, but even then some of the doctors didn't all agree it was the best way to go, though I knew prosthetically I was running out of options to keep mobile.

I think to most non amputees having a limb amputated is really the last resort and they can't comprehend it, so don't understand it and are probably quite worried for you, so I think talking to someone who is not emotionally involved, like Cynthia suggests would probably be helpful.

You asked Allen about having prosthetics made and why he was having problems so do think it would probably be helpful for you to visit a prosthetic centre and talk to other amputees, maybe see part of the process. The socket of the prosthesis is moulded to fit your actual stump, however, our stumps do change in volume even through the course of a day, so getting the right fit is crucial to your comfort and skin protection really. These days, there is quite a variety of materials used, and types of components, that go into making a prosthesis, so is quite involved.

Like me, you have to weigh up balance of whether or not you are going to be better off long term, for me it wasn't about 'becoming' an amputee, more about the risks. My own surgery was quite successful and I ended up keeping my knee and have been free from infections, though do, like Allen still struggle with prosthetic fit, and do juggle the times I wear and how much I walk with the leg, though still think this is preferable at the moment.

Knowing that you've arrived at whatever decision you make having done all the research, explored the options etc., I think will help long term.

[gerberadaisy]

Hmmmm.... why do I feel like I've been given a gentle kick in the rear end, to get up and get active??!! It's quite okay, I am not offended... rather amused actually. Perhaps thats what I need!!

I guess there was a system I had implemented without realising it myself. I think what I was trying to acheive was to get a peek in the window of a day in the life of an amputee. Then decide if it is something I could deal with. Then I could take on the next step and maybe discuss it with my surgeon and visit the prosthetist and also see if I can find out about how much my insurance will cover for prosthetics... you know, the serious stuff!! One step at a time. You all have certainly helped me with the first step...

I don't go on too much about the surgery part... I am an operating room nurse. For better or for worse, I have some knowledge of the surgery and its risks and complications. Perhaps this too, is the reason why I am not keen on going down the road of surgery after surgery to maybe fix this problem, which creates that problem, which.... we all know that scenario...

Since you asked, Allen, in Canada, there are no private hospitals/doctors etc. Actually, rather not say there are none, lets say they are few and far between. In Canada the belief is that everyone has the right to great healthcare, and money should not be a dividing factor. Hospitals and doctors are all publicly funded, however some things are then privately outsourced, like xray/scan dpts, some physios have gone private, counsellors/psychologists etc can, so, yes prosthetics are people setting up shop I guess. And then, even tho our equivalent of NHI contributions are minimal ($44 per family) that coverage is minimal. Most people have additional private health coverage to cover drugs, dental, optical, orthotics, prosthetics... all the stuff not covered by state health. Hospitals I imagine are not too different to yours. I know that you are right in saying I should get a second opinion etc. Problem is to get in to see a specialist holds a 5 - 6 month wait list. It all seems rather hypocritical put in black and white... don't understand it all myself, really.

Thanks again all of you for your input. The information you have left me with has been priceless.

[gerberadaisy]

Just to give you all an update on my life, thought I'd let you know that I haven't been sitting idle, wishing this decision away. Since I was last here, I have met with a couple of amputees, and I have also met with my local prosthetist... all who have given me another wealth of information. At this stage it is looking like an amputation is the most sensible option. I have been to see my family doc, and we have 2 referrals out to the specialists to get a second opinion. I am just waiting for an appointment... Hope you are all keeping well...

[cherylm]

It's good to hear from you, Penny...when someone comes here looking for advice and then "disappears" for a while, you wonder whether you've actually been able to be helpful to them. It's nice when someone checks back in with an update!

I'm glad you've been doing research in the "real world"...that can make a tremendous difference. You'll eventually reach the point where you'll know that you've compiled all the info you need, and then you'll know that it's time to made an informed decision.

Good luck with your second opinions!

[allenuk]

Just to second Cherylm's comments, Penny. Good to hear from you, good to hear you're still 'taking charge' of your situation - as much as you can, anyway. It's important, believe me.

Best wishes,


Allen.

[stonecutter]

Good to see you back.

I'm sure that with the research you're doing and the questions you're asking, you will be able to make a decision that's right for you.

Please do keep in touch.

[gerberadaisy]

Thank you for the support here... I will surely keep you posted. And Cheryl, you were all more helpful than you will ever realise. I know what you mean too Allen. It's pretty darn easy to sit in the chair wallowing and feeling sorry for oneself. But when you take control of the situation and start directing the bus, you realise there are choices involved... at some level or another... you begin to feel a little less of a victim... thanks guys, your support is appreciated.

[allenuk]

That's precisely right, Penny.

In a daft sort of way, even the pain (well, discomfort) is easier. When my stump hurts it's MY pain; no-one else is causing it.

Whereas if someone else 'owned' it (I know it's management-speak, but it makes some sort of sense), I could blame them, and being a victim is harder.

A.

[gerberadaisy]

Hey Guys,
How is everyone doing? I am once again coming in for some advice... I finally have an appointment with a specialist on Wed, Sept 21st. Thought I'd stop by and ask for any words of wisdom on what I should be asking the man. (Aside from the obvious...) It's always the way, that you leave a doctor's office and think afterwards, I should've asked this, or I should've asked that... So am trying to be at least a little prepared...!!

Hope this message finds you all well...