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Old 08-11-2012, 01:33 PM   #1
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Unhappy Ultimately Will My Foot Be Amputated

I posted this on another thread for foot problems but only had one response so going to try here!!!!

Seven yrs ago I had a STAR ankle replacement. I have just seen a new surgeon...the news was not great. I will have surgery in November for another total ankle replacement, fusion of the talar navicular and fusion of the sub talus...along with bone grafts from my hip, to deal with the two very large cysts within my talus. My surgeon is hoping to a alleviate about 70-75%of my pain. I'm currently on Butran patch for severe pain. I cannot take anti- inflammatory drugs or NSAIDs because of failing kidneys. My surgeon is hoping for no serious complication, however if this doesn't work I will need an amputation. I am so scared and very depressed by this news. Has a anyone out there had this somewhat convoluted situation? Can someone shed some light on the outcome? He told me he'd give it 9-12 months post surgery to see where we're at before he'd recommend amputation. Am I only postponing the inevitable.......The general consensus from my adult children is why wait and have more surgery just have the foot amputated, my husband is totally against losing the foot.

 
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Old 08-11-2012, 03:34 PM   #2
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Re: Ultimately Will My Foot Be Amputated

I am so sorry to hear you did not receive any responses before, but I hope I can offer something to help. First, I am so sorry you are in such a difficult position. While I am not expert in issues of the feet and ankles, as a woman and a mother myself, I can only imagine what a burden such a dilemma would be.

Has your doctor actually offered you the chance to skip the planned surgery and have the amputation? Can he or she offer you and kind of percentage of a positive recovery? What quality of life do you expect during the recovery process from the planned surgery, as opposed to the amputation?

What are the risks of infection and other side effects of the operation? Only you and your doctor should influence your decision, although your adult children likely have a very broad understanding of the suffering you have already endured and likely hope to reduce any further pain for you.

I wish you the best...

 
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Old 08-11-2012, 04:41 PM   #3
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Re: Ultimately Will My Foot Be Amputated

Thanks for your reponse. I really appreciate your comments and have made a few notes to gets some answers from my Dr.

Yes, he did say he could go straight to amputation. My reaction was not positive, I was not expecting that option at this consultation. He did say that during the scheduled surgery if there were severe complications he would stop but emphasized he would not amputate. He said he would wait until I was able to have a full discussion before going back to surgery. I believe in some parts of Canada but not sure about the province I live that two surgeons have to make the call and you also need to have a psychological evaluation. Going to check on that later today. He did not indicate how much my pain would be reduced.

There are huge risk for complication due to my age 65, infection, healing of the fusion and joint replacement. The biggest risk are the bone grafts, if they don't take and my talus bone doesn't stabilized my ankle coulld disintegrate.


I did not have any complication on the first replacement but I was younger and had not had a gastric by-pass, now he's a bit concerned about whether my body is malnourished......so all these tests have to be done before November as well an aspiration of the joint to see what going on with the cells. They have to do this while I'm being /x-rayed so they can guide the needle by the original replacement.

Thanks again for listening..

 
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Old 08-17-2012, 05:59 AM   #4
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Re: Ultimately Will My Foot Be Amputated

I am sorry for your dilemma. You do seem to have a lot of medical issues that could impact healing of your ankle, no matter what you do. Naturally, you want to try to preserve your ankle. I'd be inclined to try this. I can understand that your children want to save you from a possibly unhelpful surgery, but there are no guarantees that more radical surgery will make you feel that much better.

All the best. Hugs, et al

 
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Old 08-28-2012, 11:20 AM   #5
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Re: Ultimately Will My Foot Be Amputated

mgceru: Hi there. I am a 56 year old female amputee. My story is not exactly like yours but I wanted to give you some reassurance about amputation. I am an above the knee amputee who lost her leg 13 years after an accident that severely injured my leg in 1992. Amputation had been recommended to me at the time of the accident but my family begged me to get a second opinion. I was told I could live with the leg in its compromised state but eventually complications did lead to amputation. For years I was terrified at the prospect of amputation and couldn't figure out why I was so afraid. When the time came that amputation was necessary, I awoke one night, sat bolt upright in my bed and realized that my biggest fear was that first moment when I would awake to see my lower leg missing following the surgery. When I came to that realization, I wasn't afraid anymore. For me the amputation made life so much easier-no more nerve pain, no more bone infection, no more circulatory problems. Because of my years of using a brace and crutches, my leg muscles had atrophied and my knee was gone and I couldn't use a prothesis but I do fine with crutches and a wheelchair. Getting used to a below the knee amputation is much easier-it's like wearing a heavy boot. I am seven years post-amputation. I do have some phantom pain that I manage by massaging my stump and most phantom pain fades with time. Sometimes amputation is the best way to go as scary as it can be. You are much stronger than you think and you will handle whatever comes to pass. All the best!

 
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Old 09-13-2012, 07:12 PM   #6
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Thumbs up Re: Ultimately Will My Foot Be Amputated

Thanks so much for your reply. You have had many years of struggling with pain and final made one of the hardest decisions someone is asked to make. I'm in a better place than I was when I posted the first time. Talking to people that have gone through amputation has been such an eye opener. I have yet to have a conversation with someone negative about the outcome. Most have taken a positive approach and been very encouraging and open about their circumstances. I'm very grateful for people like yourself, who are willing to share your experience.

I'm not ready to make the decision, as I'm willing to put the time and energy into one last try to save my ankle. I am however, very aware there is a strong possibility of failure. I think I will approach the final step more informed and prepared for the outcome. Those who have share their stories with me, give me hope. Knowledge is a big key to understanding that there is life after amputation. Most including an 87 yr. old woman are more active and engaged in their live than I am in mine. Pain and mobility are not holding them back and I say "Good On Them".

I'm sorry it took so long to answer your post. I've been off the grid because I need to travel to the coast to have more test done. Hopefully, I'll hear soon about a surgery date.

Thanks again,

 
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Old 09-13-2012, 07:25 PM   #7
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Re: Ultimately Will My Foot Be Amputated

It is so nice to hear from you, and to know that you have gained confidence and encouragement from positive conversations with other amputees.

I hope you come back anytime and keep us informed about your progress.

 
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Old 10-15-2012, 10:14 PM   #8
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Re: Ultimately Will My Foot Be Amputated

I would never let them amputate my leg!. As much as I hate doctors I would rather take pain killers. (Why don't you take fentanyl patch by the way, it's stronger).

Anyway, once your leg is amputated it is irreversible. If I had to choose chronic pain or to have my leg amputated, I would choose chronic pain. At least with chronic pain you can somehow.....maybe someday.....they find a cure for it....eventhough I am not sure they are working on it. Cause we are all their customers and they need us. But if you amputate your leg....forget it.....you will never be able to get a new leg.

This is my opinion.

 
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Old 05-03-2013, 02:30 PM   #9
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Re: Ultimately Will My Foot Be Amputated

I am wondering how you are doing, MGCERU. What is the latest news? Did you have your surgery? Where are you in the healing process?

Although my situation is a bit different, I am on the brink of a decision between a triple arthrodesis or a BK amputation. After two failed midfoot fusions, my hindfoot is falling apart, which is why I need the TA. I walk with a heavy limp, aided by an AFO brace and a cane or crutch. I was once a very active person, but I have been turned into a sedentary one. I have a variety of other orthopedic issues, and a history of many surgeries to go with them. But, those other issues pale in comparison to the impact my foot problems have caused. As many of you know, foot surgeries are not easy to recover from, and they can fail or cause other problems, such as has been all-too-evident in my case.

The chances that the TA will fail are, in my mind, fairly high, although my surgeon would disagree. He does not disagree with my way of thinking, but I believe he feels the way he does is because he is programmed to "fix" things, not eliminate them, and once they leave the foot and ankle venue, they become someone else's problems. {Perhaps a bit unfairly (but maybe not), he would have me in his care for much, much longer with a TA, and therefore, stands to profit more from the surgery, the office visits, the aftercare, and so on. From what I have heard and read, the success rate of a TA is not great, especially when you add in the need for revisions or for surgeries to surrounding joints. Add to that the impact on other joints from the change in walking techniques necessitated by a TA. I am resolved to try to eliminate surgeries for the sake of "trying" to see if they will work out in favor of a solution that will greatly diminish pain and greatly increase mobility.

I am likely to choose amputation as the route I want to take. Is it a sure thing? Of course not. Like any other surgery, there are risks of failure or the need to revise. But all-in-all as a generally healthy 60-year old, I would rather take the plunge towards amputation than take the path of likely further surgeries at an older and perhaps less healthy age. I am seeing another surgeon next week to get another perspective. I am not in a rush, per se, although I will want to make a decision over the next couple months.

Unlike NoChange, I will most definitely consider amputation. I don't know what health issues he/she has, but I venture to say it is not a problem with the feet or ankles or legs. It is one thing to take pain medication -along with the side-effects, risks, visits to doctors, etc - but once you add in the risks involved in surgery after surgery after surgery, the scale is tipped so far to one side that I think it is pretty hard to ignore. The main thing is to make an informed decision about the surgery, life after the amputation, prosthetics, and so on.

I do not have a body image issue regarding amputation. I would not feel less whole without a leg or arm. I might feel different, but I already feel different because of the way I walk. I see amputees all the time at my prosthetist's office and they all walk with more ease, speed, and pleasure than I ever will if I do not go the route of amputation. I realize that not everyone feels as I do, but I know that my husband will back whatever choice I make, as will my family. They know how impacted I have been with all of my ortho problems, and will appreciate my hopes and expectations of a happier, more mobile, less pain-filled life minus my leg.

I welcome comments from anyone.
Thanks,
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Old 05-03-2013, 03:48 PM   #10
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Re: Ultimately Will My Foot Be Amputated

You're wise to try and do everything you can to save your leg before you opt for amputation because, as nochange said- it's forever. In the twenty years since my accident, there have been amazing medical advances. I could have chosen experimental vascular growth therapy to try and heal my leg. With minimal insurance, I didn't want to burden my family with bills so I chose amputation. And I'm fine with that. Whatever you decide to do, you'll be fine. Although your life changes forever, your new life can be just as wonderful. I can't use a prosthesis but I work full-time, ride a rowing bike around my neighborhood for seven miles every day, kayak, attend cultural events (always get the best parking space!),drive with a left-foot gas pedal and travel- everything I used to do except dance ( I always had two left feet anyway! ). The best gift you can give yourself is to keep a sense of humor about your situation. You set the tone for the way that people treat you. When I took a job, my new co-workers were very tentative with me so I tried to think of ways to put them at ease. One good way was to ask them if they heard the one about the 'one-legged waitress who worked at IHOP'. People will stare and children will come right up and ask you where your leg went. I always look straight into people's eyes and smile and say hi. I answer every question that people ask because they're not trying to be mean-they really are just curious. One more thing- fight fiercely to maintain your independence. You'll surprise yourself with how much you can still do-you find ways to compensate for that lost limb in the resourceful manner! You'll get down once in a while and feel sorry for yourself but that's normal. Best of luck to you, mgceru. fleafly: I agree with you. I lived for 13 years with a condition in my leg called 'compartmental syndrome' with the most agonizing and debilitating pain imaginable. It was caused by arterial damage behind my knee that bled deep into the innermost portion of the leg that went unnoticed by doctors and nurses for five days. By that time, I was in critical condition and alternated between screaming for help and losing consciousness from the unrelenting pain, untouched by high doses of morphine.The arterial bleeding caused pressure to build up in the lower leg which crushed the nerves and circulatory system and paralyzed my foot. I was med-evaced to a trauma center where I spent five months. Got addicted to morphine and for months I couldn't bear to be moved or have anyone touch my leg. I ended up with a bone infection and, although the pain did eventually lessen somewhat, I lived with the pain for every day of my life until the leg was amputated. The horrendous chronic pain left me profoundly depressed, hopeless and exhausted. I had no patience for people who complained of minor aches and pains and was just plain miserable. Life as an amputee is a piece of cake by comparison! All the best to you as you make your decisions.

Last edited by gobnait06; 05-03-2013 at 03:49 PM.

 
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Old 05-04-2013, 09:23 AM   #11
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Re: Ultimately Will My Foot Be Amputated

Dear gobnait06, thank you very much for your insight. I do so appreciate learning about your situation, although I am so sorry that life dealt you the problems and difficult circumstances that you described. You have certainly faced them with courage, determination, and a sense of humor. I say this to you with the most profound respect.

You are certainly right when you wrote how persistent and tremendous pain wears us down, makes us depressed, greatly diminishes our quality of life, and leaves us with an intolerance to others' complaints of pain. To the last point, I have found that expressing any sort of discomfort, let alone profound pain, almost always is returned with comments about the last visit to the dentist, or when they last stubbed their toe, or the aches after a hard workout in the garden. While I do not wish my pain on others, I sometimes do wish that it could be off-loaded onto them for a day so that they can "walk in my moccasins!" In any case, hearing them voice their pain issues simply makes me stop expressing mine. It otherwise feels like it becomes a so-called ******* contest (pardon my language) that I will never win anyway. The fact that people don't understand my situation just wears me down further, so I find that keeping things to myself is just simply easier.

Gobnait, given that you and I are nearly the same age, I know that you can understand quite well how I feel about not having much time to waste. I want to LIVE the remainder of my life, not spend it in hospitals, doctors' offices, or PT clinics. As it is, I know I will need further ortho surgeries on my knees, and perhaps my hip, in years to come, so why add to the workload?

With each orthopedic problem, I have gone through various degrees of grieving for the loss of mobility, strength, and function. It seemed that almost every surgery resulted in my having to give up some activity or hobby that I had previously enjoyed doing, or some function that I was able to perform prior to the surgery. The process of recovering from that loss as well as the depression that often accompanies surgeries anyway is a weight I do not wish for anyone to have to carry. I certainly don't want to continue carrying it myself either!

If I felt I had the time, the capacity, and the chance of real success with the TA surgery, I would go that route without thought to the amputation. But I have lost too much time already to spend more on a risky TA. It would not only have to relieve my pain but allow me to regain some function so that I could go back to doing some of the things I have had to give up. I am not a pessimist, but in this case, I am certainly not an optimist either. My determination now lies with finding a way to regain some of what I have lost, not loose more of my diminishing capabilities.

Whether or not I decide to go ahead with the amputation surgery, I still have to go through a variety of tests on my lower leg due to damage caused by previous knee surgeries. The results from those tests might make my decision for me one way or another. Another month or 6 weeks and I imagine I will know.

Mgceru, you have my respect as well. These are not easy circumstances, nor are they straight-forward decisions. I hope things work out for you so that you never have to make a decision about amputation. I wish you well. I really do.

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Old 05-04-2013, 11:56 AM   #12
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Re: Ultimately Will My Foot Be Amputated

fleafly: The decision to amputate is very difficult because of its finality. But it can be the right decision for some people. Some kind-hearted doctors just can't accept what they consider to be the 'defeat' of amputation and will try to do whatever they can to cure you. I understand completely your sense of urgency -you've already lost too much time and too many of the things that mean the most to you to the pain. The thing about chronic pain is that people, even the most devoted loved ones, who have never experienced it really cannot relate. They can empathize in the moment but then they go on their merry pain-free way and you are left alone to live with your pain 24/7. There is little to distract you from it when you're trying to push a shopping cart through the market or climbing the stairs or putting your feet to the floor first thing in the morning. And you have to deal with that pain on top of the everyday aches, pains and life problems that plague everyone. It's overwhelming at times. You expend half your energy trying to avoid that movement that causes the most pain. The muscle tension that arises from the stress of chronic pain leaves you exhausted and demoralized. It's easy to become isolated and lose all joy for living. The future looks black and it's hard to remember a time when you didn't have pain. I've been there, sweetie. Having my leg amputated released me from all that. I'm not trying AT ALL to influence your decision but I want you to know that should you decide to amputate, life can be great! It sounds a bit strange for me to say this but you're lucky in some ways. A below the knee amputation is MUCH easier with which to cope than is an above-the-knee amputation. It will be very much like wearing a boot. A well-fitting prosthesis will cause NO pain whatsoever and will actually be comfortable to wear. Great strides have been made in the designs. Most people will not be able to tell that you even have a prosthesis. Your walk will be just about normal and you can return to many of the activities you did before. As I mentioned in a previous post, I can do lots of things even without using a prosthesis. Imagine what you can do with one! If you ever need to talk or ask me anything, I'd be more than happy to chat with you again. Sending you hugs and encouragement. Debbie

 
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Old 05-18-2013, 06:30 AM   #13
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Re: Ultimately Will My Foot Be Amputated

Gobnait/Debbie,

I really do appreciate your thoughtful comments. I have been thinking about all you have said. I am pretty sure that I want to go ahead with the amputation. However, at the urging of one the surgeons I have seen regarding amputation, I am re-tracing some of my steps to make sure I understand the TA (its chances of helping me, its likelihood of not failing, what my foot will be like, and so on) and the amputation (what level, what functioning I'd have at the various levels, the risks given my lymphedema and neuropathy, the risks given other failed surgeries, the concerns given my TKR on same leg, etc.). I think this retracing of steps is as much for the surgeon as it is for me, but I am willing to do it to make sure all the i's are dotted and all the t's are crossed.

There's just no clear-cut way to go. Not by a long shot. One of the surgeons talked about a Syme's amputation. That one didn't make sense to me, but he has since abandoned the idea anyway. Others have only talked about the TA, but none have agreed about what they would do, or if/how they'd touch the failed midfoot fusion, or whatever. I've been to a couple teaching hospitals, my surgeons have spoken to their professors and classmates, and we've all looked for studies or journal articles. No one has seen or heard of a single case like mine. I don't know where to get more info, or who the best surgeon might be to handle my case. I don't even know how to go about finding out!

As I return to some of the doctors I have already spoken with, the discussions will range from what would be done during the TA surgery, to the length of my residual limb should I decide on the amputation. While waiting for all of these appointments to come along, I am continuing with physical therapy to regain some of my strength and balance. Regardless of which surgery I have, strength and balance will be essential parts of the recovery process.

I don't really know what else to do, or to whom to turn to get some experienced surgical help.
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Last edited by fleafly; 05-18-2013 at 06:40 AM.

 
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