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Heather Mills - Amputee Forum
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What to expect?

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I am going to meet my surgeon tomorrow and part of me wants to cancel my appointment and the other is just do it. I want to schedule my procedure to have my amputation. I have a few question for everyone, both elective and non elective amps. I need to know how my first year is going to look. I am currently working at a job I hate so I can carry my health coverage. I have not quit because I want to have the surgery. So my question is this. Can someone give me a time line of you life after an amp for your first year. I know that you can return to work after so many weeks after surgery but I hate to say it but I want to have my prosthetic before I proudly go back to work. My bf and I have been together for almost five years and 3 of the years we have been engaged. I would like to be married but I want to know if I should do this before the procedure so that way for any reason I lose my coverage I will be insured under his. Yes, I know this is a horrible way to look at life but my life is no longer worry free. I worry every single day of life. I cant afford to lose my job but I need health insurance. I hate feeling stuck. I have zero hope right now. If I continue my life the way it is now I am going to feel disable and I will not be able to do the jobs that I want to do. I want my freedom to do whatever I did before my accident. I want my health I had prior to my accident.

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Jenn:

I've just been re-reading the answers people gave on the Introductions thread, and in general agree with everything they said.

You want to know how the first year goes? Okay. It's different for everyone, so all I can tell you is MY first year.

I am far older than you. Now 62. Male. Unfit. Similar injury - broke ankle, carried on walking on it, buggered up the bones, elective amputation in the end to get rid of the constant pains. Biggest difference: living in the UK, so no dreadful insurance decisions affect us, thankfully.

First year: just looked back at my diaries from 2005 and this is what it tells me.

Operation early March. Home from hospital, on crutches, 5 days later.

First leg end of April (had to wait for cut to heal - that's normal). Physio during this pre-leg period - very important to get you ready for the first leg.

May: walking with first leg, small distances (100s of yards, not miles).

June: end of June, physio told me not to come back, that was that. Walks, up to 2 miles, diary says 'Fine', which they were, as I hadn't walked more than 50-ish yards for the past 18 months.

From then on, walks, getting on with life, occasionally problems with the leg and stump, in and out of the clinic getting it sorted, couple of new legs over the course of the year (your stump shrinks a LOT in that first period, so your first leg will be way too big in a year's time).

A year later I was walking 20+ miles a week, FAR more than I'd done in the old days on two legs.

Overall: pretty smooth year, some problems (hope your insurance covers continuous care for such like, as those year 1 problems are virtually CERTAIN to arise).

Since then, up and down. Periods of 'ups' when the leg works fine, sometimes downs when it doesn't fit properly. But this is ONLY my experience - I know a girl of about your age who had her leg ripped off in the Tsunami of 2004/2005, and apart from some 1st year problems has been pretty good ever since. If you were reasonably fit and active before, you've probably got an advantage over old patients like me, who were neither!

Finally, this thought, Jenn.

Thousands of people before you have had amputations, survived, and prospered.

Very few people have had CONSTANT pain from an unfixed broken ankle and been as successful with their lives.

Best wishes,

Allen, bka, London.

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Jenn, first off, do NOT cancel the appointment. GO and ask questions...discuss...THEN decide if you're ready to schedule the surgery now; if you want to wait, think, and perhaps get a second opinion; or if you want to try to continue with the pain you're in now. All of those can be valid options. (Although my personal choice was to get RID of the painful part of me.)

Okay...my first year:

I'd had just over three years of increasing inactivity due to increasing pain and foot problems. The foot on the amp side had been fractured, repaired, refractured, re-repaired, etc...etc... several times, over just about one year. By the time I arrived at the hospital ER, a bone fragment had punctured the sole of my broken-again foot and numerous infections, including MRSA, had set in. There was a team of doctors already waiting there for me. I was in my late 40s, out of shape, and had gained a lot of weight over the last three years. After several days of trying to keep me alive long enough to treat my foot, we arrived at "amputation day." (Oddly, my amp surgery was also in early March.)

My timeline is a LOT longer than most folks, because of all the additional medical problems. After my amputation, I stayed in the hospital for somewhere around 8-10 days while they continued to work on controlling the infections. I started physical therapy at that time, and then I was transferred to a rehab facility, where I remained for somewhere around a month. Much, MUCH physical therapy, and many post-op visits to the surgeon, who kept promising me that I'd start working with a prosthetist "soon." One consult with the prosthetist while I was still in the rehab facility.

I went back home in a wheelchair, still waiting for my incision to fully heal and my residual limb (I actually prefer to call it a stump, but some folks really don't like that word) to lose its post-op swelling. Was visited at home by the prosthetist several times to take measurements. (Yes! I got house calls! I think it had something to do with the fact that I live all of two miles away from his office....) Unlike the Brits, there seems to be more of a tendency for folks in the US to "wait until some degree of stump stabilization has happened" before starting to construct legs. Mine was an unusually long wait, though.

It was early May before I got my first prosthesis. Walking was GREAT...but after all that time in a wheelchair and hopping with a walker, it also took me a while to walk very far. My first trip outside on the new leg was to walk about 50 yards to my mailbox, sit and rest a bit, and then walk back. I was weak, sweaty, and completely exhausted! The next day was a little better....and each day kept improving.

By late May, I was actually ready, leg-wise, to return to work. However, I had another medical problem (I'm diabetic...all the hopping on my walker had burst blood vessels in my eyes and I was temporarily legally blind) that kept me off for another month. By the time I could go back to work, I was MORE than ready for it!

Allen mentioned "first-year problems." Mostly that comes from the fact that your stump goes through many, many changes in shape and size as it adjusts to wearing a prosthesis. I got my first leg on a Thursday, I believe, and I was back for my first adjustment the following Tuesday! For the first few months, you'll feel like you're living at the prosthetist's office..... After a while, I went from every week or two, to every month or two, to six-month check-ups and a new leg socket once a year. I got my second "entire" leg--new socket, new foot, new connectors, the works--at just under five years. I adore my "new" leg!!

There are some times when you'll know that you've made a "BIG breakthrough" during that first year...there are many other times when you won't understand how far you've progressed until you suddenly realize that you're doing something without thinking about it that once was difficult in your early amp-days and was incredibly painful in your pre-amp days...and NOW it's entirely normal.

At just over five years, I am living a perfectly normal life.

(And now, as if this post weren't long enough, I have to tell you about my sister's wedding! :biggrin: The bride was perfectly healthy and beautiful...the groom has a bad hip and walks with a cane...the bride's escort down the aisle had a badly sprained ankle and was hobbling in a "moon boot"...the maid of honor (me) was wheelchair-bound after yet another foot surgery and was pushed down the aisle by the best man! It was still a lovely wedding.............)

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My appointment went okay. I asked my foot surgeon if he has ever done an ertl amp and he replied no. That scared me. He suggested we do another fusion before moving forward with an amp. I told him that I wanted some time to think about it and I would follow up with him at a later time.

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Jenn: got to be your decision, of course, but over the years I've encountered quite a few fusion patients, and 100% of them were unhappy with what they'd had done - still painful, greatly restricted movement (a bit like being in a permanent plaster-cast was one description).

Conversely, of all the amps I've come across, only a tiny minority regret or question their decision to amputate, so on those odds, I'd vote against fusion.

Nasty decision, either way.

Allen.

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Jenn: got to be your decision, of course, but over the years I've encountered quite a few fusion patients, and 100% of them were unhappy with what they'd had done - still painful, greatly restricted movement (a bit like being in a permanent plaster-cast was one description).

Conversely, of all the amps I've come across, only a tiny minority regret or question their decision to amputate, so on those odds, I'd vote against fusion.

Nasty decision, either way.

Allen.

Allen is absolutely correct here. I have met countless people over the last ten years who have had fusions of limbs in one form or another. Not a single one of them has had a positive comment about the experience. In fact I'd say 80% approx of those people were left with far greater disabling issues following fusion. I cannot for the life in me understand, why ortho consultants would rather fuse a limb (risking/causing greater complications) than take the decisive step to amputate and allow the patient to rehabilitate to their new life of walking on on a prosthesis--in a bizarre way it is progress having an amputation. Pain is almost immediately a thing of the past, you quickly set into a structured plan of recovery to restart your life (instead of living in an agonising limbo) and in my case, an overwhelming sense of relief and elation. My life is mine once again, and its now totally up to me to get the most out of it.

My surgeon tried to explain his reluctance to amputate my leg by telling me it was such a negative procedure to carry out, he was in the business of trying to maintain function of limbs, and in his 16 years as a consultant, he had never had to amputate a leg due to complications arising from failed knee replacements. Initially I sympathised and tried to understand his side of things. Then it suddenly hit me. None of his reasons were in any way related to or concerned with ME or his medical opinion of what was in MY best interests.

I could argue, to satisfy his ego, and protect his professional pride, the decision to amputate was unneccessarily delayed. Maybe.

So if you've had enough and things are unbearable as they are, I would reject further attempts to fuse and demand the process be started (getting 2nd opinions etc) to electively amputate. But as Allen rightly states, thats just personal opinion based on my experiences.

From the outside looking in its easy to say just do it, the difficult decision is ultimately yours either way--but it is YOUR decision remember, not the Surgeons.

Unlike the opinion of surgeons (which might have their own self serving spin on it!), the advice you get from members on this forum comes from real life experiences of dealing with and living with issues similar to your own, and how we have subsequently coped after the loss of a limb.

Good luck whatever you decide.

deets

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