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hannahc410

Newbie - amputation after failed subtalar fusion cant decide

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Im really annoyed just found out my boss said he thinks its a bit extreme of me to be considering an amputation !!! does he not realise that the docs wouldnt even consider it if there wasnt justification !! i hate the fact that you cant see pain ! everyday is a struggle and i dont even sleep properly because of pain ! !!!! aaarrrrggghhhh im so angry !

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He would have to walk in your shoes, so to speak, to understand. Your pain is yours. You own it.

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Hannah, there are just some folks who don't "get it." (I was glad that my mom had passed on by the time of my amp. She would have had one of two responses: either she would have spent the rest of her life crying over my situation, or she would have claimed that I'd "just done it to get attention." And I honestly don't know which response would have been worse.) Your boss is an idiot, as far as I'm concerned.

Your situation is your own. Your pain is your own. And how you choose to deal with that pain is your choice. It's very clear that you're giving this a lot of thought, and that's all that matters. Don't let someone who's not been through your situation be the one to make your choices for you.

You're right...if pain was something that was clearly visible, it would help in getting folks to understand. But one thing I've found is that people who have reached the point of considering an elective amputation are often the same folks who are so darned good at hiding their pain from others that the choice to amputate comes as a "shock" to the folks around us. My own boss told me recently that when I announced that I was choosing to amputate my foot and ankle, she was surprised that I sounded "relieved" about it. I told her that, after all the time I'd spent on unsuccessful repair jobs, only to have the pain and disability continue, I WAS relieved about it! It was an end to a terrible episode in my life, and a chance at a new beginning. And it worked.

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cherlylm - what you have said rings so true when I tell people they look at me and say 'but your walking on it, surely its not that bad' I just want to scream sometimes !!! behind closed doors its awfull but you just have to keep going !! I have a 4yr old daughter what do people expect that I just take to my bed and never come out !! other peoples perceptions are the most frustrating thing about all this ! xx

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hi everyone ive not been on for ages !! I have my surgery date for a lbk its the 17th may 10 ! Im so sure ive made the right decision !

Im just so nervous about the actual surgery itself. Insomnia has kicked in ! i feel like my mind is racing at 100mph. does anyone have any suggestions as to how to best get through the next 2 1/2 weeks ??

Thanks guys xx

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Hi, Hannah...glad to hear that you've reached a decision and that you're feeling good about it. The "waiting" can be the hardest part. I was lucky that way...once I'd made my decision, it was only about a week before my surgery, and I was already in the hospital and on some serious medication: in other words, I was basically KEPT asleep!

That said, there are some things you can do to try and stop the speeding train that is your mind. Physical activity can be a good thing...even if you're in too much pain to be "really" up and active, you can do some exercises to help prepare you for your recovery: things like leg-lifts, sit-ups, balancing on your good leg, etc. Physical relaxation exercises can also be useful: deep breathing, focusing on tensing and then relaxing various muscle groups. Learning more about "what's to come" can also be a reassuring thing. Write down some of your questions and concerns and go about researching them. (Don't do this late in the evening, though...that can just get you more energized!) And don't be afraid to ask for a mild sleep medication from your doctor, as well as possibly "something for nerves." Heaven knows that you have a right to be nervous when facing something unknown that will change your life.

Keep yourself interested in other things, too. If you have a hobby, spend some nice, relaxing time with it. Read for pleasure...perhaps an engrossing novel would keep your mind off yourself for a bit. Listen to some music...soothing or upbeat, either one works. Sit out in the sun and just relax! Visit with some friends who can be counted on to NOT insist on questioning you about your decision and the upcoming surgery. (Or, if you're in the mood to talk about it, find someone who is willing to just be a "listening ear" and not provide much in the way of advice.) Take a nice warm shower or bath. Get a manicure!

Mostly, you want to try and keep the surgery as just "ONE of the things in your life." :smile: That's exactly what it will be, in the long run...just "one of those things."

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I agree with Cheryl about keeping your mind occupied. Try not to dwell on the surgery. Maybe you could look at it as a beginning. I waited a week and was fully aware of things. You shouldn't be in the hospital very long. I was only in for 2 days. In retrospect, I could have been an outpatient.

Good luck.

Neal

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Although my amp wasn't optional, I had about a week to wait. And it was during Christmas. So I had quite the knot in my stomach. But I somehow carried on, got thru Christmas and spent New Year's Eve in the hospital as a new amp. I am constantly amazed at what the human spirit can do. I wish you all the best.

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hi everyone ive not been on for ages !! I have my surgery date for a lbk its the 17th may 10 ! Im so sure ive made the right decision !

Im just so nervous about the actual surgery itself. Insomnia has kicked in ! i feel like my mind is racing at 100mph. does anyone have any suggestions as to how to best get through the next 2 1/2 weeks ??

Thanks guys xx

Just about everything you can think off races though your mind. I only waited about a week from being told to having my legs resized. I went into hospital the day before, I spent most of that night sat in the hospital car park wondering if I was doing the right thing and should I just go home. What did it in the end, I couldn't walk to the bus stop or back into the hospital. As it turned out it amputation was the right thing for me to do.

Life in the beginning is going to be different, spend time working out how you are going to cope with your living environment and how you will overcome some of the obstacles - that's what I did to occupy myself.

Good Luck

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Good point that Sparky made, Hannah.

Those first 6-8 weeks post-op, you are going to be on crutches (at best) or in a chair (hopefully only occasionally.)

I don't know how you get around at present - maybe you're a whizz on crutches, or a bit of an acrobat, but if you're NOT (like most of us) then you are going to need to make some adjustments to daily life (and get some HELP).

In your mind, go through a day, from getting out of bed, getting to the bathroom, washing etc., to the kitchen, making a cup of tea, making beans on toast for daughter, etc., etc. Can you do all that on crutches? Even sitting down on a toilet (and getting up again) can be problems.

Most UK local authorities have an 'occupational physiotherapy' unit (or similar) whose job it is to sort out various 'aids' for you, like getting grab-handles fitted in bathrooms/toilets, on stairs (can you DO stairs on crutches?), and making sure you can live an independent life, which might mean getting daily helpers coming in.

Your GP is the first port of call on this one - his receptionist should be able to give you names and phone numbers.

You CAN buy a lot of the necessary kit yourself, and either fit it yourself or get (paid-for) outside help. I got a retractable armrest for the toilet (like you get in disabled toilets) and still use it, 5 years on. Similarly a folding shower stool which I fitted to the wall of the bath, and again it's still in use.

The local authorities won't give you much, not as a BKA, although your family circumstances might make them more generous.

But it definitely needs both thinking about and sorting out now. The only good thing about this phase is that it doesn't last that long. Once you're back on two feet, most of these sort of problems go away.

There are quite a few mail-order suppliers. Here is one:

http://www.mobilityworld.co.uk/store.aspx?cp=38&item=Mobility%20World%20Home%20Page

(Note: most 'disabled' products are SILLY prices. They think we're made of money! But, once you are registered disabled (you might well be already) you don't have to pay VAT on things you need).

Allen, bka, London.

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Thanx everyone !! After my initial reaction of panic (oh my god Im actually loosing a leg) I feel ready for it. Ive gone through everything in the house moved some furniture around packed my bags its mentally prepared me I think. And Im really looking forward to NO pain ! How much pain should I expect after the op?? I only ask coz I forgot to ask that one when i was in with my surgeon??

Thank you xx

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Pain, what a subject, everyone on here could write a book about pain and they would all be different and all be right. I have found after reading a lot of posts that the post op pain is down to the skill of your surgeon. You will have some pain and that should be managed by the staff. I had a bit of pain for the first day and then it was just stitches pulling and I was home about 3 days after the op, I was sent home with morphine, never used it.

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Thanx everyone !! After my initial reaction of panic (oh my god Im actually loosing a leg) I feel ready for it. Ive gone through everything in the house moved some furniture around packed my bags its mentally prepared me I think. And Im really looking forward to NO pain ! How much pain should I expect after the op?? I only ask coz I forgot to ask that one when i was in with my surgeon??

Thank you xx

Hi Hannah

I think Sparky's posting on this is along the right lines, its different for everyone and different hospitals and surgeons have different ideas ... in some you will be under a 'pain' team who will manage the pain meds side of things. When I went back for my revision the other year, I was quite impressed with how much better things are with that side of things nowadays and how little pain there actually was, so hope things will be ok for you too.

Will be thinking of you on the 17th.

Ann

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Pain is a relative thing. I actually felt so much BETTER after my amp that I didn't use near the pain meds I'd been on before my surgery. I had morphine for one day, post-op, but asked that it be discontinued. Mostly, I got by with tylenol during the day, and something "stronger" (vicodin) at night. And that didn't last long, either.

Mostly, I just enjoyed NOT feeling my left foot any more! (Actually, I did "feel" a left foot...I had very strong phantom sensations for my first year, but the "phantom sensation" was of my foot BEFORE all the fractures and surgeries. It really helped me adjust to walking on a prosthesis, because I was convinced that I could still feel what I was standing on!) And in time, that phantom sensation slowly faded and I went merrily off on my new leg.

Just go with what happens...if you find that you need pain meds, make that known to the medical staff. If you find that you're doing well without, don't be afraid to ask that the medications be cut back. This is a time when you rally CAN have control of your pain...and of its absence!

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I made the mistake, immediately post-op, of being Very Manly and refusing painkillers.

So I don't get everything right...

That was overnight, and it was a LONG night with just paracetemols for company. The next day they turned up the morphine drip and prescribed some stronger pills, which I was on for a few days.

Suggestion: keep as pain-free as possible in the hours and days after the operation, and take whatever drugs are on offer. After a couple of days, you probably won't need them, and after a week the operation site becomes achey rather than painful, then fades to nothing. As you already know, the body heals itself amazingly quickly under extreme conditions.

Allen.

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I made the mistake, immediately post-op, of being Very Manly and refusing painkillers.

So I don't get everything right...

That was overnight, and it was a LONG night with just paracetemols for company. The next day they turned up the morphine drip and prescribed some stronger pills, which I was on for a few days.

Suggestion: keep as pain-free as possible in the hours and days after the operation, and take whatever drugs are on offer. After a couple of days, you probably won't need them, and after a week the operation site becomes achey rather than painful, then fades to nothing. As you already know, the body heals itself amazingly quickly under extreme conditions.

Allen.

Yep ... Allens right. I did similar to him. Didn't realize the system .... I'd spent the afternoon in post op came back to the ward feeling quite comfy ... nurse asked me 'casually' what my pain levels were and 'would I like some painkillers' ... I said I was ok ... which was a bit of a bad move ... as a few hours later was climbing the walls .... I learned after that .... so in the first few days, at least, don't be turning down the pain meds.

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Hi Hannah,

Welcome to the forum. I hope your amputation is well past you and you are well on your way to recovery. My injury was very similar to yours and I too went through three surgeries and finally told me doctor to "cut it off." Best decision I could have made. After the initial pain I really had very little pain, more just discomfort. I am three years post amputation and am back to leading a full and happy life--have even continued the renovation of my home including climbing ladders.

I do wish you all the best. When you are feeling better let us know how you are doing and if we can help.

Peace, Beth Marie

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my surgery was delayed due to illness so im now scheduled for mon 23rd may. so more waiting but thank you all for your replies. im so nervous. i have no doubts just nervous about the op ! but hopefully all will go well ! xx

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Hi Hannah,

Waiting is terrible and to have yourself all psyched up for the surgery and then it is cancelled--UGH!! I know I had to wait about four months and I hated it. What Cheryl suggests is great--keep your mind busy, but not crazy. I tried, pretty successfu for me--demanding to tell him a month in advanced--I live in Canada and it doesn't work that way as I only had a week's notice once I got the date. He wanted the doctor to tell him exactly what he was going to do, what kind of rehab etc. etc. Thankfully I had a great doctor and he told my boss to take a hike as he had not right for that information. Then my boss tried to put me on medical leave--now I know that sounds great, but he tried to get rid of me whatever way he could and I had almost gone crazy when he did the same thing at the time of the accident (I did not need four months--being with people and I could easily do my job from a wheelchair, was the therapy I needed. Anyhow, the only way I could avoid all the was I had surgery on Monday and was back the next Monday teaching. I was only there for the six hours a week I taught. He also refused to make the place accessible, so I had to bum up the stairs and hope someone was around to get my wheelchair up the few steps. All this is to say I hope your boss is more accommodating--for he truly does not walk in your shoes. If he is reasonable talk out some of the issues like accessibility before surgery.

You are in my thoughts and prayers these next five days.

Peace, Beth Marie

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