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mtman

Any regrets?

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I have a question for some of you. This mainly is for those who had an elected amputation for pain issues. I’ve posted a link to a study pertaining to those who had elective amputations for pain issues. By the way, Dr. Saltzman was my doctor in Iowa. Great down to earth guy.

After reading the article please tell me what your choice would be. Do you regret your amputation? Are you pondering that very thing?

Thanks

http://www.ejbjs.org/cgi/content/abstract/83/10/1479

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My amputation was elective, though not due to pain. I was facing a year of reconstructive surgeries with no guarantees that I would ever walk again anyway. I made the choice to amputate so I could get on with my life. I absolutely have no regrets. There are those occasional bad days when I wish my leg were back, but all-in-all I'm quite happy with my life and don't think about the prosthesis too much.

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My amputation was elective, though not due to pain. I was facing a year of reconstructive surgeries with no guarantees that I would ever walk again anyway. I made the choice to amputate so I could get on with my life. I absolutely have no regrets. There are those occasional bad days when I wish my leg were back, but all-in-all I'm quite happy with my life and don't think about the prosthesis too much.

Did your surgeon try to talk you put of an amputation? What else did they want to do as far as the reconstruction?

I’m in a similar boat. I’ve already had three surgeries to fix my ankle but nothing has worked yet but amputation is not a viable option for my surgeon.

Did you see an ertl doctor in OK?

Thanks for posting. :)

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I knew nothing about Dr. Ertl at the time. I wish now that I had. He is 100 miles away. If I ever need any kind of revision, I'll talk with him about it.

I had two Drs. One a plastic surgeon for the tissue rebuilding, one an orthopedic for the bone. My plastic surgeon was the one who wanted to rebuild the foot. There was extreme tissue loss as well as no heel bone left at all. My achilles tendon was what gave me the most pain. With no heel bone to attach it to, it had moved up the leg about 6 inches. They cleaned the wound and placed my leg in an external fixator from the knee to the foot immediately after the accident.

I was okay with this plan until some of the tissue started dying. The plastics guy wanted to take muscle from my abs and glutes and skin from my thighs to graft to this foot. I was very concerned about infections from so many surgeries. They still couldn't tell me how I would walk with no heel bone as there is no prosthetic for the heel at this time.

I used that time as you are, I talked with two amputees and a prosthetist. I decided to amputate instead of the surgeries. Only after I made that decision on my own did my ortho doc tell me that it was the best decision. He wanted me to make the choice. He never would lead me one way or the other. They could have saved the foot, that I am certain. I would never have walked properly again.

I know you ask yourself how I walk properly now? With the prosthetic foot, I can walk, run, climb stairs and ladders and do anything I put my mind to. I stand all day on my job with very little problem. I think it was the best choice for me.

I hope this helps you in some way.

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Thanks Neal. Anything anyone here has to offer is much appreciated. :)

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Guest bearlover

I have huge regrets! Only I had no choice in the matter.. I had developed a major bone infection in my leg It was my leg or my life. after a life time of operations since infancy..The last 3 years have been brutal on me, Iam much worse off now than ever. And have more pain real pain and phantom pains. :unsure: I strugggle every day..But I try and don't let it run my life. I work part time as that's all my leg will allow me to do. My real leg was totally messed up 4 size differences in shoes, and deformed. Ans had many surgical scares...What I have learned from amputauion is...Their is nothing like the real thing! No matter how painful or ugly and deformed it is!

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Mine was not only for pain, there were other issues involved but it was the best decision I ever made. In my case the orthopedic surgeon strongly suggested it but told me to go away and think about it as he would only do it if I was sure that I wanted it done and the other doctor I saw about the appliance I had to wear on the deformed leg also recommended it so in my case everyone thought it was the best option.

Sue

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Only I had no choice in the matter.. I had developed a major bone infection in my leg It was my leg or my life.

I had the same choice because of infections and non-existant circulation. My operation was set for the Friday and I was admitted on the Thursday. I spent all Thusday night and the early hours of Friday sat in the hospital car park going over my limited options. As it turned out it was the right thing to do, I feel fitter and it has now been 8 months since I last took any antibiotics - that is a record for me.

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Guest bearlover
I knew nothing about Dr. Ertl at the time. I wish now that I had. He is 100 miles away. If I ever need any kind of revision, I'll talk with him about it.

I had two Drs. One a plastic surgeon for the tissue rebuilding, one an orthopedic for the bone. My plastic surgeon was the one who wanted to rebuild the foot. There was extreme tissue loss as well as no heel bone left at all. My achilles tendon was what gave me the most pain. With no heel bone to attach it to, it had moved up the leg about 6 inches. They cleaned the wound and placed my leg in an external fixator from the knee to the foot immediately after the accident.

I was okay with this plan until some of the tissue started dying. The plastics guy wanted to take muscle from my abs and glutes and skin from my thighs to graft to this foot. I was very concerned about infections from so many surgeries. They still couldn't tell me how I would walk with no heel bone as there is no prosthetic for the heel at this time.

I used that time as you are, I talked with two amputees and a prosthetist. I decided to amputate instead of the surgeries. Only after I made that decision on my own did my ortho doc tell me that it was the best decision. He wanted me to make the choice. He never would lead me one way or the other. They could have saved the foot, that I am certain. I would never have walked properly again.

I know you ask yourself how I walk properly now? With the prosthetic foot, I can walk, run, climb stairs and ladders and do anything I put my mind to. I stand all day on my job with very little problem. I think it was the best choice for me.

I hope this helps you in some way. I have tried harder than anyone of my prosthetist patients...Or so he says..I put my mind to more than anyone knows..Sometimes you can try and try until the cows come home and think positive all you can. And still have problems..At least for me. But I never give up trying never I push my self to the limit . My remaining limn (stump) has no mucel tone, no matter how much PT i take, and nerve damage, scar tissue, and a bowed tibia that is left. Due from the birth defect. But I never say I can't I try more than anyone know!

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Neal,

Mine was very similar to yours. I had a total crush injury to my right lower leg / foot. I smashed every bone there was. I had a fixator fitted and a few rescue ops too. When the decision for amputation was made, I sort of knew that it was the right thing to do. I had no heel, loss of tissue, major damage, severed the arteries and had tissue that was dead too!

After I talked about the operation with the surgeon, I was really calm and focussed. I knew I had to get through it, and get back up again - not just for me, but for my children also. I needed my life back and that became my driving force. I didn't want to be changed by the amputation - not personally changed - only physically, and that could be addressed with good prosthetics and a stubborn nature! I think that I surpised myself at how calm I was, but I just knew, really knew, that it was for the best.

Since that day, 3 years ago, I've had ups, and downs (mostly ups) and the only time I've second guessed the amputation was recently, with further surgery looming to remove the neuroma - but when I really thought about it, I was never going to come out of that hospital with 2 feet - there was just too much damage done!

We can't go back, and although 'what if' is part of human nature, I try to say 'what next' instead, and to try and remain positive - doesn't always work, but I try and get on with it anyway.

Sue

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Guest bearlover

This is funny because all my life I have heard.."you would be better off without it" Or why not amputate?? It is better than this.... Well the day came and I had no choice. The out come has not been everything I was promissed or told. Due to the remaining limb being so messedd up..But I do fourge ahead I never sit and fell sorry for myself ever. It was never allowed growing up. I gut through all the struggles and pain. I need to keep on fighting and hopefully someday it will be better! :)

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Thanks everyone for responding.

Bearlover, I’m sorry things haven’t worked out for you the way you were told. Sounds to me like you had no choice and had to accept what ever outcome came about. That’s stinks.

I am in the process to try to get a consultation with Dr. Saltzman in Utah. He was my surgeon in Iowa and is the best in his field so I trust his opinion.

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Guest bearlover

Many thanks mtman! Yeah it dose stink..But I have accepted it and Iam still trying Ans I will never stop hpoing or trying...Hey Thanks again! :)

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Bearlover,

It is a shame that there is not enough information before and after amputation for patients, about some of the things that can happen. I was only told about the possibilty of phantom sensation, but I've had all sorts of things since the amputation.

The phantom sensation, was phantom pain, and lots of it! I've had a rather large neuroma, which is about to be removed and I've got fibular instability, that causes a lot of problems, both pain wise and prosthetic wise too. Add into this the difficulties with prosthetics, liners, all the drugs and the post traumatic problems, and you kind of get a better picture - all very well with hind sight!

When I saw the surgeon for the neuroma removal, he didn't really go into how the stump can change shape, the problems with cutting scar tissue as opposed to the clean tissue at the time of the amputation, and also that the surgery is a lot more complex - that was told to me by the limb centre manager, when I went for a check up!!

Having said that, I still feel that when they discussed the amputation, and the reasons for it, I would have still said yes to the amputation!

Sue

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I just spoke with a guy who I had done a peer visit with before his amputation. His leg was amputated last Wed morning, he went home on Friday and back to work this morning. He even drove himself to work.

He is not in any pain. He is marvelling at the feeling that his foot is still there. His was an elective amputation following infection from a compound fracture over a year ago. He is 58 yo. He does sit at a computer all day at work.

I know that this isn't typical of all amputations, but it does serve as an example of how the brain works. He was in so much pain before the amputation, that what little he experiences now is minor.

Just thought I would share this with you.

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Guest bearlover

Thanks Sue! Oh get this.....I was told "you will not have any phantom pain the way I do it" ALso I was told I would have a life and be pain free nd do things" The Dr. Big time miss-lead me. I had no choice or I would be even more angry! They say now..After my amputation that if a amputee has a lot of pain before, that they ciontinue to have pain after words.And I had a lot of pain before since it was a birth defect..The jerk (DR) also looked at my husband and assked him "are you going to leave her once I take her leg off?" :unsure: :?? Can you believe that? It has been brutal and a real struggle..But I do push myself and try. I work in 1st grade class so I have to keep up with 6 year olds..It does no good feeling sorry for yourself and you will get no whear...Thanks for your kind words and comments!! Very appreciated ;)

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Hi Bearlover,

I've been reading this thread with interest in how you are dealing with this. You are biting your grit very, very tight. You must be careful ! Being strong and hard on yourself is OK to a certain degree but you must watch out that it doesn't eat the substance of who you are. You must go out there and try to find a solution for this situation you are in. You shouldn't have to be in pain in this day and age !!! :(

Yes, your doctor sounds like a nightmare. Asking your husband that question alone, ... shocking !!! :unsure: Are you still being seen to by this person or has he left you out in the cold to fend for yourself. I mean, he can't just say 'well, here is your lot , deal with it'. There must be a solution to make this pain you are going through more bearable. Have you looked into seeking professional advice from another doctor ? as this doctor you have mentioned just sounds totally incapable !

I'm so angry you have been left in this situation. I really hope you find a solution and fast !

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Guest bearlover
Hi Bearlover,

I've been reading this thread with interest in how you are dealing with this. You are biting your grit very, very tight. You must be careful ! Being strong and hard on yourself is OK to a certain degree but you must watch out that it doesn't eat the substance of who you are. You must go out there and try to find a solution for this situation you are in. You shouldn't have to be in pain in this day and age !!! :(

Yes, your doctor sounds like a nightmare. Asking your husband that question alone, ... shocking !!! :unsure: Are you still being seen to by this person or has he left you out in the cold to fend for yourself. I mean, he can't just say 'well, here is your lot , deal with it'. There must be a solution to make this pain you are going through more bearable. Have you looked into seeking professional advice from another doctor ? as this doctor you have mentioned just sounds totally incapable !

I'm so angry you have been left in this situation. I really hope you find a solution and fast !

Oh How I know Kaz! I bit through a lot of pain all my life..It was just p[art of life for me. I did not know any better.. Well One day the pain was so bad I could not walk and my leg swellwd up like a elephants! Again I thought this is just life...Well it turned out it was a infected bone from all the pins and rods in ly leg. You could see the infectin flotting around in the xray :o ..The end result?? A nasty life threating infection..So after years of operations and pain I only lost the leg in the long run... :blink:

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Guest bearlover

To anwser your question Koz..No way I will ever go back to that Dr..I felt cofident as he was a well know very good orthopedic surgon..The local Hocky teams Dr..Well he turnesd out to be a very poor one. Only after did I learn that I should have had a vesicular surgon do the amputation..As orthopedic Dr.s ralely do amputations..Some ortopedic surgons consider amputation a failure on their part.. Live and learn :unsure: Thanks for the kind words and advice! :)

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You're welcome, Bearlover :-) You are always so supportive for other members here when you yourself are in a difficult position always pushing yourself forward (yes, i've noticed !) . Says alot too about your character :-)

I just think you shouldn't be left in such a predicament. You mentioned above that the pain is worse now since ampuation besides having the typical phantom pains. Have you considered a revision? I know an OP is to be avoided when possible but it could mean making your life a little easier. I lost my foot in Greece and the docs there did a miserable job so i was left with the bone almost poking through the skin at the bottom. :( 12 years later (22 yo) when the pain and infections were just unbearable i had a revision on my stump making it a little shorter but with a muscle 'cushioning' under the bone. I thank my stars every day that i decided to have this operation done. No pain at all and walking is so comfortable i forget i have a prosthesis.

This is ofcouse a different situation to yours but you must keep all options open :-) if it will improve your quality of life.

Good luck :-)

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Guest bearlover

Iam slowley re thinking it Kaz! I just fought so hard to come as far as Iam..It took 3.5 years for the swelling to go down. And I have had operations since I was 8 months old. Iam a little worn of them. But I haven't closed my mind on it completley. I have a appt. January 22 with a specialist. I think I have a exposed nerve that is causing some of my problems. Just to wear the liner all day hurts. I do have a socket built away from the area. But this area has been a major pain since day one. It may also be a neuroma we are not sure..Thanks Again! ;)

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Bearlover,

I can relate to the nerve pain/liner/prosthetic pain - it wears you down! :( Your Dr was a jerk - how could he even think to ask a question like that, of your husband - beggars belief! :o

You should not have to live your life with this pain, they need to sort it out for you, sooner rather than later.

I wish you luck.

Sue

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Guest bearlover

I know sue..I have lived all my life in pain from childhood..I have a very strong tolerance to it. I was told all my pain would go away..Along with saving my life :rolleyes: Well yes he saved my life....BUT.....

Is your neuroma very senstive? The slightest touch feels awful? I think a feather would hurt it! Wesein the liner all day also hurts it...Thanks! for your kindness and understanding!

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Yep, my neuroma is very sensitive! As you say, the slightest brush, touch etc sets off the sensation. With me, I 'feel' my crush injuries, so strongly, I can pinpoint each and every area that was damaged - not nice.

Also, it's right between the two bones - I'm RBK. So, when I put on the liner, and ratchet into the leg, it squeezes it, as I've instability in the fib, it moves a bit! When I take off the liner, my stump throbs, and it goes a sort of purpleish pink colour too!

Hopefully, the op on the 15th December will help this, although when I asked about bone bridgeing to add some stability, the orthopaedic doc looked at me as though I were an alien! His answer was to cut it off higher - not a chance!

Sue

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Guest bearlover

Oh I know I can still "feel" the infected bone! :o :rolleyes: And the leg is gone. I have a lot of pain 24/7..But I try real hard not to let it run my life..It is hard but I can't sut and have self pity!

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