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Mary Farquhar

Rehab Dr!!

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Hi All,

I just came from my rehab appointment feeling very discouraged. I had an appointment for an evaluation before I go through with my bk surgery. I first met with the Dr's resident, she was wonderful! Then when the Dr came in, then it all went down from there. The first time I met this guy I didn't like him, and I still don't!

So, the first thing he says to me is....do you know this is a big thing to go through. You know that things might work out and then they may not. He asked me how long I can walk now with my pain, I said 3 hours. Then he told me well even if you have a bk amp.you might not be able to walk 3 hours, you will get tired faster. He went on.....in the end he said it's your decision, and you will have to live with it. When he said that I felt that he was saying it's a mistake to go ahead with the surgery and that I am better off the way I am. Then we went on and discussed the rehab part of it.

I left feeling angry, sad, discouraged, and 2nd guessing myself! What is with these Dr's?!! Nice that they can make their patients feel this way?!!

Mary

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In my opinion you shouldn't take his views personal! He is a doctor, it is their job to treat and save limbs no matter how much it slows up down. Most of them see amputations as failure, not success. He is right in some aspects, there is a possibility that things don't work out for the better. However doing nothing and getting no results is worse than trying something and failing. This is a big decision and he wouldn't be doing his job if he didn't tell you how things could go! Again at this point you've made the decision and are most likely ok with the choice unfortunately it may take longer for everyone else in your life to get there with you. I hope the surgery goes well and you get back up and going soon. Remember now is the time to stay positive!

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Mary, he's doing what doctors are required to do...he's warning you about possible consequences. That doesn't mean that the consequences WILL happen, or that your decision is a "mistake"...just that you should know that a BK amp is an important and irreversible decision to be considered seriously.

We all know here that you've been thinking seriously about this decision for a long time now...he may or may not realize how much time and study you've devoted to reaching this point. And as Madleggs pointed out, some doctors (I'd say "most" doctors) really do believe that amputating a limb--even a painful and useless limb--is a "failure." In a way, I suppose it is...it would be much better if there were more possibilities for restoring a limb to a full, pain-free, active state. But until that time comes, I see amputation as a viable way to get a limb that functions well...even if it's a prosthetic limb that comes off at night!

I've known a couple of amputees whose doctors acted more like "cheerleaders" than physicians when preparing them for their amputations...and then things have NOT worked well, and the new amputees have felt not only disappointed but betrayed by the rosy picture painted by their doctor. I think that's probably a pretty rare situation, but being promised a "100% return to full activity with no discomfort or pain issues" and then finding out that is not going to be the case...I think I'd have felt pretty betrayed myself in those circumstances!

My own doctors were pretty upfront about everything that losing my leg would entail...that the odds were good that I'd be able to live a normal life again, that I'd most likely have a very significant lessening of my pain (possibly even no major pain, which has turned out to be the case), and that removing the bones that had been riddled with infection would make it much easier to get my health back...but also that fitting and adjusting to wearing a prosthesis was a long and intense process, that it would take some time and major effort for me to recover from the surgery and learn how to use the leg, that there was still a chance of some types of pain (phantom pain in particular, which I've had to deal with only very rarely), and that some of the health effects of all that I'd been through were permanent and I'd be living with them from here on out.

But, as in your situation, they left the choice to me, saying that they were willing to go on trying to save the leg if I wanted to keep on with it, and were equally willing to cut it off and proceed to rehab if that's what I wanted to do. I went with the choice that seemed to offer the best prospects for controlling the pain and getting my health and activity level back to normal...and I've not regretted it.

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Mary, he is just putting the worst case scenario in case it happens even though it is unlikely. Way back in the 70's I was't given any warnings about possible problems just told that it would make walking a lot easier, luckily for me that is how it has worked out but it I would have been devastated if things hadn't gone according to plan and I had been left in more pain than before. You have spent a long time thinking about this and now have to do what you think is right for you - you are going in to this aware of all the possible outcomes.

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I agree with all said. The doctor has to let you know what the consequences are. You can't go back. Don't blame him.

It is true that most of us live a pretty full, active life following amputation. I've had my share of downs this past year. I hope it doesn't last. There are others that we may not hear about that have complications due to their amputation. They can lose more leg or even their life.

This isn't meant to scare you, only to let you know the possibilities. The decision is yours to make. You need to ask yourself......If I'm no better after the surgery than I am now, will I be as happy? That is what I asked myself before asking the doctor to amputate. I knew that walking would be a big challenge with no heel. I would have worn some sort of brace and special shoe for the rest of my life. I decided that the options with a full prosthetic leg and the possibility of walking more normally would be better. I have had my share of problems with the prosthetic leg, but I can honestly say that I am happy with my decision.

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I do agree with all that has been said. I do understand that the Dr has to tell me what the consequences may be if I go through with the surgery. I just thought there was other ways of doing it. My own Orthopaedic Dr didn't talk so negatively about the surgery.

I spoke up and told him that I have researched this for many years now. That I have talked to other amputees, and that some do have problems and some who don't. That I understand it may not go the way I want it to. I know it's not really meant to scare me, but it does! I hate that I am in this position to make this kind of decision....real sucky!

In my opinion he could have said what the consequences could be then go on and tell me some of the positives, maybe add in some of the patients he has had. I didn't like leaving feeling scared and not wanting to go through with the surgery now.

Thank you for replying!

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Madleggs nailed it. It's all about failure if a limb is removed in the mind of a surgeon.

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Mary,

I understand what you are saying about the Dr. Sometimes it's not what they say - but the way that they say it and that's what leaves the lasting impression - rightly or wrongly! When I was first told that amputation was my only option, it was a female plastic surgeon that gave me the news - in a rude and matter of fact way (it was a week after my accident and I really wasn't expecting it). When she left, I complained to the nurse about the 'lack of bedside manner' and her being so rude and blunt. Her boss then came to see me and explained the why's, hows and fully dicussed all options leading up to amputation - which was my only option really - but he was lovely, explained it all fully, showed some concern and left me thinking that I knew why and what was going to happen.

Whilst I've had a mixed bag of health, as a result of amputation, I know that there was really no chance of saving my leg/foot, and I've had ups and downs along the way. Amputation is different for everyone, some sail through, some initially, with problems later, and for some, like me, it's a mixture of good and bad. However, I am an amputee and I see that these health problems are part and parcel of this. I hoped for, and still hope for better health, but I understand now, that I have to go with it, and deal with each situation as it arises. I can't stop my nerve endings from growing so fast, but I manage my workload and life around what I can do, when I can do it, and always hope that some day, all will be well.

I wasn't told about nerve growth or any of the other possibilities - only that I may have some phantom pain! However, when I am unwell, I always look for ways to resolve my problems, new drugs, techniques etc and then surgery if all else fails! But even if I had been told, I would still have lost my leg and still have had to deal with it all, so I do.

You need to have in place good support, a good relationship with your prosthetist/physios, and a good relationship with your doctors and surgeons. Mine all know I push myself, and that when I call for help it's because it's become too bad! I have also learnt (almost 8 years) to accept my situation and health problems and to listen to my body more and to accept who I am and what my limitations are.

Only you will know when it's the right time, and the right decision - after all it's you that has to cope and live life as an amputee. You will have access to lots of advice, help and emotional support here, as we all understand what it's like to be an amp!

Sue

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Sue.....you're right, it's not so much what he said, it's how he said it that really discouraged me. You had no choice but to go through with a bk amp. but I do have the choice. I can live my life like this or go ahead and see if a bk amputation will give me more of a life. I have pretty much made up my mind, but it's still difficult. I understand that everyone is different, some have problems and some who don't.

I know the Dr will do a bone bridge just like the Ertl. I will be seeing my Ortho surgeon again soon.

Thanks for sharing some of your story. I didn't realize that nerves can grow?

I have great support, and I do have a good relationship with my prosthetist, and they work with my orthopedic Dr. and my surgeon works with the rehab Dr. So everyone is connected which should be good.

Everyone is great on here, and love the support!!

Mary

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Hi Mary,

I was surprised that the Ertl isn't available in the UK - well not in my region anyway. I asked about it when I had problems with an unstable fibular, but the told me it wasn't an option! They ended up taking my fibular out, which in turn caused a bone spur to grow and I have a nerve that rubs along it. Ertl seemed such a better option!

It looks like you have given such a lot of thought to your amputation and you have done your research too. I always feel that you know when the time is right to go ahead with surgery and I would say that amputation, whilst such an afwul operation, does give many their lives and mobility back, especially after struggling for so long and trying to avoid it!

I wish you well, and you already know that you will have such support.

Sue

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Sorry that you had to go through that. Yes, the Ertl does seem to be the best option. About 2 weeks ago I watched the Ertl surgery DVD, it was very interesting.

It's been almost 4 years since my foot trouble started. It was great finding this site, and talking to many people on here. Learning about the Ertl as well. I have tried treatments, a revision surgery, and my prosthetist has worked hard with me but it has all failed. I definately wouldn't jump right into an amputation without trying all I can. At this point I either stay the way I am or go ahead with the surgery. I am ready, and even though I am scared to go through it, I know I have great support around me and I have a great will to get my life back!

I wish you well too Sue!

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