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Heather Mills - Amputee Forum
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firstborn

Pain Managment Dr calls me Crazy!

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As some of you already know, I am not yet an amputee but I am considering it. I have a useless foot after a car crash.

The doctor told me today I was crazy for wanting an amputation. I have a disorder called RSD from my injury. He told me that the RSD would only get worse if I went through with the operation. I have been upset all week and this is why I dont go to the doctors. I told my pain mgmt dr, that I wanted to move on with my life and be able to walk without pain again.

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Did the doctor explain how or why the RSD would get worse if you went through with the amputation? I'm asking because there is one member here who discovered following her own amputation that she had a condition which made fitting her with a prosthesis extremely difficult. She's still having problems.

Normally, when someone is dealing with an unrepairable foot and continuous pain, I'd suggest that they certainly consider amputation...I think we've talked about that before, in fact. My own amp was a tremendous improvement in my life. But how would a worsening of your RSD (if indeed there were one) impact your quality of life? Would it still be better than what you have now? Or could it make your quality of life worse?

From what I've read about RSD, it sounds like it could be triggered in another part of your body as the result of an injury...and an amputation, even with good pre- and post-operative pain control, might be read by your body as an injury. In that case, wearing a prosthesis might irritate the condition even more. It's something to think about, because if you do decide to do the amputation, you'll need to be able to accept the results. So please do think about it carefully before making a final decision. :smile:

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Cherylm, I am so torn now. I dont know which way to go. I thought that by having the amputation would allow me to be healthy again. I am being told it would likely get worse. I am so depressed after talking to my doctor.

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I think you may want to see how much more you can find out about possible complications if you were to go ahead with an amputation. Is the doctor you just spoke with an expert in RSD? If not, would you be able to get a consultation/second opinion with someone who is an expert on the condition? If it's possible for you to determine the "odds" on the RSD getting worse and/or moving up to the site of the amputation, it might be enough to get you feeling "un-torn" one way or the other.

If you decide to continue looking into the possibility of an amputation, I think it would be very, very important to discuss all possible methods of pre- and post-op pain control, so that you would have the lowest possible chance of the condition worsening or moving.

It's not an easy decision, and I wish you the very best in being able to gather enough information to let you make an informed choice!

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As some of you already know, I am not yet an amputee but I am considering it. I have a useless foot after a car crash.

The doctor told me today I was crazy for wanting an amputation. I have a disorder called RSD from my injury. He told me that the RSD would only get worse if I went through with the operation. I have been upset all week and this is why I dont go to the doctors. I told my pain mgmt dr, that I wanted to move on with my life and be able to walk without pain again.

Hi Firstborn,

I do understand your situation, although I found out after my above knee amputation that I had a condition (EDS) that would make it very difficult for me to be fitted with a prosthesis.

Interesting also that as well as this condition, my pain management consultant and rheumatoligist also feel that I have RSD, this accounts for the level of pain I still experience following amputation and the way pain medications just do not work on me.

I have had 38 operations now, 31 of them prior to amputation, so the pain levels were pretty severe at the time of my amputation and still are. However I would not say they were worse, they are just the same....if that makes sense.

I am not sure what I would have done had I known about the EDS and RSD, I was in so much pain at the time, I just wanted it all to end. I am not sure I would have been in a right mind to believe what they were telling me had they suggested that amputation would make me worse......I would have probably gone ahead anyway. When you are in that much pain and it is effecting your life so much you just want some hope...however small... that things will improve, I would still have gone for the amputation. I hope I am making sense. I still can't accept that things won't improve for me, ironically it's that, that keeps me going. I don't know many amputees who have not been fitted 6 years on, or had to have so many revisions. I am in the process of being fitted, but the amount of pain I feel in my stump makes using a prosthesis very difficult.

The problems you face are specific to you and only you can make the decisions.

I would be asking lots of questions, no one can tell you how much pain you will be left with afterwards, short term or long term, but they should be able to tell you if the amputation will give you better mobility and function.

You need to ask yourself if you can live with the continued pain, long term if it means an improvement in your mobility. Would that be worth it?

One last thing is to be kind to yourself, in this situation it is so very easy for your mental health to suffer. Believe me....I know.

Feel free to send me a message if you want to.

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Lynne, I'm so glad you checked in here...I figured that, if anyone would have a good first-hand perspective for Firstborn, it would be you!

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Guest bearlover

There is nothing like the real thing, no matter how bad it is..ULESS it a life saving need.

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I would like to respectfully disagree with you Bearlover!! My newly acquired (2yrs ago) carbon and titanium leg is 100% better than the one I was born with. The truth of the matter is firstborn has already lost her better foot, sure a fake leg comes with is own issues. However once a foot/leg becomes so painful/useless the person's mental state is such that they most likely will never fully trust in it again. A fresh start with a pros leg can absolutely be better than a busted up, painful, useless foot.

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Madleggs, if I remember correctly, bearlover's surgeon literally promised her that an amputation would leave her free of pain...and she's dealt with terrible pain issues (phantom, stump, nerve, whatever else can be thrown at her) ever since. So while my own experience is much closer to yours, I can understand where she's coming from.

I really think that doctors need to be as honest as they can in discussing post-amp pain issues with a prospective amputee. If you're going to make the decision to lose a body part, you do need to consider how much pain you'd be willing to take for an improvement in mobility.

That said, I go through very few episodes of pain myself, and losing my left foot and ankle made a tremendous improvement in my life!

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There is nothing like the real thing, no matter how bad it is..ULESS it a life saving need.

As Madleggs, couldn't disagree more.... I'm WAY better off without what I had left as an excuse for a leg.... have never looked back since my amputation, the best thing that ever happened...

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