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Heather Mills - Amputee Forum
Mary Farquhar

For the woman out there, I need advice?!!

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Hi, this might only be interesting for the woman? LOL...

After the Dr. looked at my ct scan last summer, she told me the only thing I could do is amputate. So for a year I have prepared myself for a bk amputation. Then I finally get in to see the surgeon...I was all prepared to discuss amputation and it didn't happen. I came out of the Dr's office kinda disappointed.

We both looked at my ct scan and he explained some things....he thinks it's possible that because the pain is in one area of my stump, that there could be a nerve causing me the pain. So, before he goes to amputate he wants to make an incision and lift up the skin and look to see what is there. This could happen only in 4 to 8 weeks.

I kinda felt disappointed.....I couldn't sleep very well last night. I had my mind set on the bk amp, thinking I might be able to wear dresses again etc....summers always sucked for me cause I can't wear summery clothes. Only wore summer pants. I'm not sure I want to spend the rest of my life with the limited prosthetic I have. It 's a bit bulky as it has to fit over my heel, and a bit of my "real" leg. I have done great with it for all these years but...need a change. I find the prosthetic legs look amazing now a days.

I also want to mention this prosthetic I have makes me uneven at the hips. They always try to make me even but it never happens because I still have my own heel, so it makes me higher on one side. That is why my whole body is out of alignment and hurts. After all these years.

So, I know having this surgery doesn't mean there is a nerve there but....it comes down to I either stay the way I am...if this surgery is a nerve causing me pain OR go to a bk amp. so I can have nice looking legs etc...and not be limited???

I maybe need to talk to my prosthetist about what kind of other prosthetics they could make for me if I don't need to have a bk amp?

Thanks!!

Mary

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I dont know the rules for medical treatment in Canada, but if possible I would try to find another Dr. to get an opinion. Are you able to have this done in the US? I know if a really good surgeon, and you could probably get in and out in less than a month.

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If your current level of amputation is throwing your hips out of wack then even if the nerve issue can be solved you still will have hip and back issues. Don't let your Dr. "practice" on you when you know what you want. Your Dr. is not the one that is going to live with the pain afterwards so he is not nearly as invested in what is best for you as you are.

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Mary, if your primary concern becomes something based on "cosmetic issues," you might want to step back and take a good, long look at things again. A below-knee prosthesis CAN look amazingly good--there are people who either don't know I wear one, or else they think that my "real" leg is the prosthesis because my prosthetic side looks so much better than my "real" leg--but a BK prosthetic does come with its own "cosmetic issues." When I wear shorts, which I do pretty much all summer long, the difference in my legs shows clearly...and my suspension sleeve seems to encourage all sorts of folks to ask me "have you had knee surgery?" So there's still a chance of being noticed and having to either try to ignore it or else having some sort of oddly uncomfortable conversation about how it's actually a prosthetic leg.

Now...if your current partial-foot prosthesis is throwing your hips out of alignment, then there is a real, live, important reason to change that situation! At the very least, I'd talk to your prosthetist (or perhaps more than one prosthetist) about possible new designs in a partial foot prosthesis. Something less-bulky that can keep you in alignment. Or some way of adjusting the shoe on your "good" foot so that you're standing properly. Hips out of alignment mean serious pain issues!

And I absolutely agree with Kender...get a second opinion, so you know whether your surgeon actually is intending to "practice" on you. It actually could turn out to be a neuroma that's causing your current pain, and it might indeed be possible to fix it...but it's also true that some surgeons are so intent on not doing an amputation that they'll "fiddle about and practice" for ages. And (although I have no personal experience here) I've heard that neuromas have a real tendency to return once they've been repaired. Try to get yourself a variety of opinions here to help you decide on the "best" option for YOU.

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Yes, I do realize that even if it's a nerve issue that my back, hip, knees will still continue to cause me pain.

I need to see an Osteopath, but I think until I treat my foot, and get a better prosthetic made then I shouldn't go to an Osteopath. Reason why I have already done that and soon as I started walking the knots return in my back etc...it's been so long that I have been uneven at my hips.....I am so scared that my body is ruined. Hope it's all fixable. I am in so much pain from neck to feet.

I have tried other prosthetics like the silicone one and it didn't work for me. I would just limp in it. I think I will have to see my prosthetist when this surgery is done, and IF I get it done. Think I need to see this Orthopaedic before the surgery date and discuss more with him?

I tink the Orthopaedic Dr. doesn't want to just practice on me...he has done 5000 amputations. He wants to see if he can fix my current situation without amputating.

I think my decision is made.....going to try this surgery since it's not months away, only weeks away. See what he finds in there and decide from there?

I guess being a bk or ak you will be even right?

Thanks!

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Mary, as a BK I am usually "even" on the hip front. Sometimes, though, things "shift" (like when my stump shrinkage sets me sliding deeper into my socket), and then I can really comprehend what you go through when your prosthesis has you standing unevenly. That said, there's a lot of various things they can do to readjust my BK prosthesis to get me "even" again. So I spend the vast majority of time without major hip, back, or knee pains, but it can take a bit of "maintenance."

If no-one has ever mentioned the possibility of a nerve being the source of your pain before, and this doctor honestly thinks he can arrange a "fix" for you, then yes, I'd be inclined to let him take a look at this point. Once the leg is "off," it's "off" forever...so it may well be worth taking a few more weeks to make sure that "off" is how you would really need/want it to be. What I would be cautious about would be anything where the doctor might insist, after one or two "failed" attempts to repair the foot, on just continuing to "try it again" and see if it works "this time." That's not productive.

I know that it can be depressing to have been thinking that you're going to be making a decision, only to find that there's "another step" to get through...but you want to make certain that You've investigated the options before going ahead with amputation. Hang in there...you'll eventually reach the point where you know what's the right thing for you!

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Totally agree with everything Cheryl said...if there is a possibility that it is something that can be helped without having to amputate...you have to try it. Like Cheryl said..once it's gone, it's gone. I would always wonder if I had your option and went ahead with the amputation without at least trying the less invasive surgery first...hang in there.

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My decision is this....going to do the exploratory surgery and see what the Dr. finds if anything? I know amputating is permanent so I think it's best if I try all my options before I go ahead and do it. That way I will feel more at ease with my decision in the end. Knowing I have tried everything possible.

Now it's the wating for the surgery...maybe in June sometime?

Thanks for all your replies, it means a lot!!

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I agree with all that's been said on here, Mary ... it took me five years to have my revision op ... from the first time it was suggested to me. I saw a surgeon at that point, got an idea of what could be done ... then further explored the options of different types of prosthesis/different centres etc. When I got to the point of finally deciding to go forward with the surgery, I was happy in my own mind that I had done everything else that I could and that the time was right.

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Like I said for about a year I thought I only had one choice and that was to amputate to a bk. It was hard but I accepted it and talked to many on this site and I also looked into the Ertl procedure, I even went to my prosthetist. He explained to me what would happen after the surgery prosthetic wise. He even showed me a prosthetic leg and explained how it holds. I did everything.....then my Dr's appointment came, and bam...didn't discuss amputating. Only to see if there is a nerve that is causing this. I just don't want to go through the surgery to have nothing there? I know amputation is permanent, and why wouldn't I want to try one more thing.....just tired of trying I guess! I have waited soooo long for my life to start again. I guess what's a few more weeks? Can't take the pain.....my foot ( stump ) is not even killing me as much as the rest of my body. Huh, how to get by the next month?!

I appreciate everyone's replies, and I am definately grateful that I have found this site!!

Mary

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How to get through the next month? Well, with most folks I'd suggest education and preparation...but you've already been through most of that! The one thing that might be useful is to try and learn about various types of nerve pain...but beyond that, I'm inclined to say "just find some ways to distract yourself while you wait." I know that, when I've been in pain, just getting my mind focused on something else can sometimes help.

You know, when I was dealing with all the failed attempts to repair my broken foot, I once joked to the surgeon, "Oh, heck, let's just hack it off and be done with it." I was truly NOT serious at that time, but he treated it as if it really were a serious suggestion. "Now, Cheryl, we're not at that point yet. We may reach that point, but there are still things to try." He tried it all...different ways to reattach the bone, different ways to try and anchor the tendon that kept pulling the bone out, different types of casts, even the amputation of my baby toe and a slice of the outside of my foot in order to stop an infection from spreading. By the end, he was able to say, "We've tried everything reasonable to fix this; we can try to repeat some of the more promising procedures and hope one of them works this time, or you can consider amputation. Your choice."

By that time, I was serious about wanting to be through with all the surgeries. When it came down to "repeating things" and "hoping they worked this time," I knew I was ready to lose the foot...and so did the surgeon. I asked a few questions, then asked to be left alone for a while, and by the end of the day I was asking them to amputate. While it was a terrible decision to have to make, I knew that it held the most promise for restoring my life. It was a relief.

Had he been able to suggest one more "NEW" procedure, I probably would have gone with it, simply because if I didn't do so, I'd have always wondered if it might have been the one that would have worked. That may be the way for you to look at the waiting period for this exploration of a possible nerve issue, Mary. It's a "new" procedure that may actually solve your problem...or at least get you to the point where you can concentrate on just trying to get your body back into alignment, as opposed to having a stump that's also "killing" you. And if there is "nothing there," you can go forward knowing that all the possible fixes have been explored and you are really free to lose the foot and get on with your life.

It's hard...but the rest of your life is worth it..........

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THANKS Cheryl for sharing your story. You, like everyone on here has gone through a lot. What you said to me really hit home because what you wrote is exactly what I am feeling. Yes, this is a " new " procedure and I definately have to try this surgery because if I don't I WILL wonder if it would have worked or not. if it doesn't work then I know in my heart that I have tried. Of course the decision to amputate won't be an easy one, although I have kinda been at peace with it for a year now, but I know it will be worth it because I will get the "rest of my life back."

Thanks again,

Mary

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Hi Mary,

I am late getting into the discussion, but I wanted to share my experience as I think it has some relevance. Also, living in Canada I think I can understand other issues such as waiting lists. The doctor had tried three different things with my ankle and although each one was successful something else went in the ankle three months something else would be wrong. After those three surgeries I was tired of living in a wheelchair. The doctor wanted to do one more thing, but knowing it was a long shot I did not want to have to wait eight weekends until surgery, then see if it worked and if it didn' work it would be a total of eight or more months before an amputation could be scheduled and after three years I had had it. That is my story. It seems you would not have to wait for a long recovery to see it it were a nerve problem or not. Any way it is a tough decision. I will be thinking about you during these difficult days,

Peace, Beth Marie

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Hi Beth Marie,

Yes, there is a lot of waiting here in Canada. I`m not quite sure how I am going to get through until my surgery but I do know that this is my last try. I have had enough of this pain and waiting for my life to start so I have decided this is my last shot at it.

Mary

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