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Heather Mills - Amputee Forum
RozM

Hello! ...choosing to amputate is tough!

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I've moved to the north west of England, where orthopaedics are not a speciality

Really? My sister is an orthopaedic nursing sister in the north west. I would have thought that you'd be able to find a pretty good orthopaedic surgeon in Liverpool or Manchester, Roz.

Lizzie :)

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Hi Lizzie;

I'm just going on what my new GP told me; I'm further north than Manchester and Liverpool (without spelling out my location to casual browsers!), and apparently anything orthopaedic from where I am will require an out-of-area referral.

I haven't stopped looking - I'm just pursuing the leads I have now.

Roz. :)

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Hi Roz

I'm new to this forum to. Haven't been on in awhile but, this was great reading with so many great people in this forum. I'm a right a/k and fly planes, dance profressionally, race cars, jog ect... you get the idea. You'll be doing more than you ever thought you could in no time at all. When I drive a standard I shift to neutral just before I'm goin to stop as to use my left foot on the brake and coast to a stop, I've been doing it so long now that it sometimes takes someone new getting into a car with me to say something and then I just look at them and say what do you mean isn't this normal ? Ha Ha Don't worry and were all there with ya.

Take Care

Pete :D

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Hi all;

Well, I've seen my top-notch private orthopod, and it all went very well! I arrived half an hour early, but was taken straight to X-ray, and I was in his consulting room within 3 minutes of my appointed time - this kind of service is well worth the cost!

He's very happy to do an Ertl amputation on me - in fact, he actually suggested that it would be preferable in my case, to stabilise my fibula, because of my foot-drop-related muscle atrophy and knee instability.

However, much to my surprise, he also told me that he could do what none of the NHS orthopods in recent years have said was possible - straighten my leg and arthrodese my ankle. This was offered primarily as a fix for my pain, not to give me optimum mobility and ability.

Now, the arthrodesis is not guaranteed - my circulation is already compromised, so the operation itself might fail, and I might get non-unions afterwards, which would then probably require a trans-tibial amputation anyway.

Even if it worked, I would have a rigid foot, so stresses and loads would be transferred to other joints, which may well lead to pain all over again.

Other factors include the fact that if I were to require an amputation later, I would have developed even more muscle atrophy, which would lead to a very boney stump, which I understand is harder to fit a socket comfortably to.

In short, I see my options as being as follows:

Either, take a chance with the arthrodesis (pantalar and tibiotalocalcaneal, I think, but very extensive in any case), hope that this fixes all of my current arthritic pain, accept the limitations of a rigid foot, hope not to develop arthritis in any other joints, hope that this newly-salvaged limb is not more limiting to my ability than a good prosthesis, and hope that it works for the rest of my life;

Or, go for the amputation, and start with a clean slate with the best possible residual limb, facing largely known issues and largely known potential outcomes.

The recovery period is apparently the same for both procedures, but I would hate to have to go for the arthrodesis and have it fail somehow, and then have to have the amputation anyway!

I would very much welcome your opinions, particularly from anyone who has previously had an ankle arthrodesis.

I know the decision is mine alone, but given the above information, what would you do?

In any reply, please tell me how long you've been an amp, as I am trying to think long-term.

Thanks again, everyone!

Best wishes

Roz. :)

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I haven't had one either Roz, and in the end it's always going to be your choice.

From what I have read from you in the past it seems as if you are after quality of life. Sounds fair to me, chase after what gives you that quality.

Good luck with your decisions.

Cat :)

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Roz

My father had a very successful ('the works') ankle arthrodesis...and I was in a similar situation to you, 2 years ago - should I have limb reconstruction/salvage or amputation. I chose amputation, but somehow my surgeon persuaded me otherwise, and I had the limb salvage.

It's very lonely 'at the top', isn't it? Unfortunately, it's only you that can make that decision...all I can suggest is that you take your time and that you will know in your heart which decision is right for you.

Lizzie x :)

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Hi Roz;

I haven't had one either but, I agree with Cat in that you have had what you have long enough and looking for the best mobility with the least amont of pain. Keep talking to everyone you can that has had that and I think that would help alot. Keep smilin cause no one can ever take that away even if only in our dreams.

Take care

Pete :blink:

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I had the choice of attempting to save my leg with an ilizarov frame or go straight for amputation. After some deliberation I opted for the amputation as I didn't want to waste a couple of years of my life on something that could have had all sorts of complications and seemed to have little chance of success (based on what I'd been told about the state of my injury). The decision was probably a lot easier for me as my leg became more stinky. Once I'd made it though I didn't look back and that decision became the right one for me no matter what followed.

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Right!

This has gone on long enough! (2 months, actually, and I seem to be back asking the same questions again, so it's definitely time to take stock...)

Thank you for all your replies, and your patience, everyone - I have an announcement:

Today I have asked my GP to refer me for the amputation. He dictated the letter for an NHS referral when I saw him this afternoon.

It will be interesting to see how long the wait will be, but I've saved at least 3 months by having the initial consultation privately.

I've decided to go for the best possible residual limb as a new starting point.

Marcus - your post really clarified it for me - even if I were pain-free, I want to be able to walk properly, not like I'm decades older. And I want to do other active things again too, things I haven't done in 26 years!

I've also come to recognise some very interesting psychological aspects of my situation: it's really difficult for me to see my current leg as anything other than a painful, ugly, detriment to my life - the prospect of the arthrodesis seems akin to suggesting that a mortal enemy will suddenly appear in the guise of a friend; I'm not inclined to trust it, and if I do, how will I feel if I'm let down?

And there is a good chance that in addition to not facilitating as much activity/ability as a modern prosthesis, it would let me down, by possibly failing, and/or not adequately relieving my pain and/or causing other problems to develop.

"All change" feels more appropriate to me than speculative tinkering, and I'd rather try to eliminate the need for future revisions by going straight for the amputation - the pragmatic Muz approach!

So, now the decision is made and the wheels are in motion! Now I have to start a whole new kind of research!

I'll keep you all posted.

Thanks so much once again for all your advice and support in my reaching this point!

Best wishes to you all

Roz. :)

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Hey Roz,

I am glad that you have been able to come to a decision. I appreciate that this must have been one of the hardest decisions you've ever had to make in your life. I have to say, though, you seem at peace with it. :)

Now you can try and enjoy the feeling of being liberated from having to make that decision.

I wish you the very best with the surgery. I hope you don't have to wait too long. :rolleyes:

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I thought you had made you're mind up, Roz! ;)

Good for you! :) It feels the right thing to do, doesn't it?

Take care

Lizzie x :)

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Hi Roz

My daughter, like you was horribly injured after a motorbike accident. In her case the accident was her fault, and thankfully noone else was injured. She bought a 600cc bike just six weeks after passing her test, and the rest is history.

Her accident was almost 4 years and 43 operation ago, and she de-gloved from just above her knee down to her ankle. She also smashed her femur, and broke one of the small bones in her ankle.

The result of all this is that she is now addicted to morphine (400mg trice daily) and all the other drugs to try to contain the pain.

Last Friday her surgeon regretfully admitted that he, and the other 4 surgeons involved in trying save her leg could do no more, and referred her to the prosthetics department to determine what sort of prosthesis she would need.

As a mum, I am really struggling to come to terms with the enormity of what she is about to do. I know and accept in my head that it is the only way to go, but my heart just won't take it in.

I am told, by her surgeon, that surgery will be very soon, and pray for the strength to be positive for her, although secretly I don't want her to have the surgery.

I just want my fun loving wild child back, who seemed to vanish back there on the road so long ago.

Forgive me fo being so maudlin. I know that I have no right to feel sorry for myself, but I feel that members of this site will understand where I am coming from.

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Hi Anne and welcome to the forum.

I'm so sorry to read of such a tragedy happening, not just to your daughter, but to your whole family; I know from first-hand experience that something like this, and its aftermath, is devastating for the whole family.

I hope you can begin to believe that the decision to amputate is potentially a good thing, even though it seems like such a drastic measure; I never knew until after my father passed away that, as a GP, he thought I would have been better off if I'd had my leg amputated immediately after my accident, but he never told me because he wanted to spare me any further hurt. However, he was right - I would have been better off - but in my case, things stabilised, which meant I kept my leg but have had 26 years of pain and debility, and I still need the amputation. A huge saving grace as far as I'm concerned is that surgical techniques and prostheses have come such a long way in 26 years, so I will become much more able and pain-free by having the amputation.

I wouldn't have known any of this if I hadn't joined this forum, and I hope you'll be able to see from the other stories here that for many, amputation has been an enabling process, where a shattered and painful limb is the opposite; having been supported and advised (and amused!) by all these wonderful people has revolutionised my outlook, and I'm looking forward to a great future as an amputee!

There is so much helpful information here - I'm still finding fascinating stuff over 2 months after I joined, so please keep posting, asking questions, and trawling the archive of previous posts, and I think you'll see there is a great deal to look forward to. Being here will greatly ease your mind and tell you all you need to know!

Please also feel free to send me a Personal Message anytime.

Very best wishes to you, your daughter, and your family, with everything.

Roz. :)

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having been supported and advised (and amused!)

Amused ... tell us who and we'll have a stop put to it immediately.

This is no place for amusement.

Jeez you'll want to be laughing next and no good ever came of that ! ;)

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Hi Roz

Thank you for sharing your story with me. I cannot imagine what it must have been like for you to tolerate all the pain and suffering for 26 years, and only then to lose your leg.

Already, in only two days, both myself and my daughter feel at home with people who really KNOW where we are at. And guess what, The future doesn't seem so bleak.

Obviously this forum can be used for questions, to just sound off and to share all of our experiences with like-minded people. But, in my opinion, hospitals should reccommend that potential amputees visit the site.

Because my daughter's surgery is so imminent, we are unable to think about much else at the moment. Not just the surgery, but the practical stuff like organising the children etc. But just two days in the forum we are beginning to think ahead, and Victoria is already talking about whether to to return to her former career, or to pursue a new one.

Once again thankyou for putting a smile, albeit a small one, on our faces. :lol:

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Hi All;

I have a date!!!! :o :blink: :D :( :blink: :) :ph34r: :P :huh:

It's to be 10th August 2006.

22 weeks from now...

5 calendar months and 1 day...

Assuming there are no issues over the NHS funding (which I've heard can crop up out of the blue!), I'll be having an Ertl Procedure right trans-tibial amputation.

I've been working out like mad already, trying to get in the best possible shape for the op, which - ironically - has exaggerated the old leg pain, but with my goal now visible on the horizon, I'll grin and bear it!

I just have to stay sane until then... any suggestions?!

Best wishes

Roz. :) :blink: :)

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The only adice I can off is to keep occupied...keep occupied...and keep occupied, Roz!

* Plan a project that will fill your time and carry it through, for instance decorate your new house.

* Try not to focus on your operation too much, so for instance, limit the time you spend on sites like this one (don't cut it out, just limit it).

* Get out in the fresh air as much as possible.

* Be kind to yourself emotionally.

If you keep yourself busy, time will pass very quickly and you'll feel that you've achieved something.

Take care

Lizzie :)

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Dear Roz,

16 years ago I was faced with a similar dilemma.

A liposarcoma had been diagnosed in my right thigh, and I opted for

amputation to get rid of the primary tumour for good.

You can read my story in the 'Personal Stories' section of the Sarcoma

Alliance website: http://sarcomaalliance.org (Michael W...) or I could mail it to

your private e-mail address.

Take care!

God Bless!

Mike

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Hi Roz

I'm afraid that I'm too new to offer any advice, but my heartfelt prayers go out to you.

August must seem a long way away, but really it's a moment when you take the last 26 years into consideration.

I will watch for any news, and know that it will be a new beginning for you.

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Thanks Lizzie, for more sage, level-headed advice! B) I'll be back for more later! :wub:

Thank you, Mike - I found your story in Sarcoma Alliance - I admire your clarity of thought, and your determination, and they are a great example!

Hi again Anne - thank you so much for your thoughts - as I've posted on Vicki's thread, I've been working towards getting a date for my amputation, and now I have it, I somehow have to plan it into my life!

I wasn't aware that tapestries could be quite so rich..!

Best wishes

Roz. :)

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Roz, I'll be thinking of you! My own amp was August 6, 05, so we will nearly have a same anniversary. Silly thought isn't it?!

I think Lizzie gave you very sage advice... keep busy, busy, busy!

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Hi Marilyn;

I've seen your posts and followed your story, as what you've been going through is highly relevant to my future!

I'm very glad to see that you're doing so well, and I love your optimism and sense of humour!

Actually, I think Lizzie is psychic as well as wise! It's been a fortunate coincidence that my new job has kept me insanely busy, which is why I hadn't posted sooner to say hello, and I think that once I'd been given my date I preferred to be busy and let it all sink in, and try not thinking about myself and my damned leg for a while!

Anyway, it's nice to have "met" you now, and I also think that anniversaries are good things - after all, every year I remember the anniversary of my accident, and congratulate myself for being able to walk at all, when I was told I never would! I REALLY can't wait to be able to celebrate walking well and quickly, and painlessly!

Best wishes

Roz. :)

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Actually, I think Lizzie is psychic as well as wise!

Thanks for the compliment, Roz! :)

My mother would agree with you about me being 'psychic'...I'm not sure about the 'wise' bit, though! ;)

Take care

Lizzie :)

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hi Roz

just wanted to say how pleased i am for you, that you have decided that amputation is the right way to go for you. i know from very recent experience how hard it is when you are going throught the 'shall i? should i not?' stage. Then the do i really need this or can i cope as i am? would i benefit and improve my life?

i know it was a real relief and weight lifted when i actually made my mind up. I was lucky in that i only had 4 weeks to wait, but that seemed like a life time coming. I spent my time cleaning anything that stayed still long enough and cleared out all my cupboards (they resembled something out of fatal attraction!' all neatly stacked and in rows! :D

i knew in my own mind that i had made the right choice and felt at ease about it, but i did have two days of 'why me?' what had i done to get into this situation and life was unfair, but after short time got over that! i have kept a diary, before, during and after, and look back and see what i have already been through and overcome. (i found it to be helpful and funny in places)

i have had absolutely no regrets since, and people have commented how, for the first time in years i dont looked in pain (and i dont feel it either!) infact my family unit are all very excepting now (thats hubby and two kids) so much so that theres a competition going on in our house, to see who can best dress my stump! my daughter is winning at the moment with 'inspector stump!' (dressed with wig and glasses!)

Enough of me waffling on, the best thing i can say to you is stay positive, talk to those close to you about concerns, stay in contact with all in here, i found that to be one of my biggest helps, theres some truely inspirational, caring and genuine people using this forum! laughter is a big help!

anyway, good luck and time will go really quickly!

best wishes to you and sorry for waffling on! :rolleyes:

Terri :P

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Roz, I cannot imagine what it must be like for you now. I was in the hospital when they told me they MUST amputate... I didn't have a choice. Making that decision must be very difficult.

That being said, I know I could never have walked on my leg. I'm glad after all this to be looking forward to walking again. (I'm walking a little teeny bit now, with more to come in the future!)

Roz, we are blessed to know you during this part of your journey. I keep thinking, I wonder if we are amazing people, or what!?

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