waiting to talk details with the doctor

[annanicole]

Hi everyone:

I'm a thirty three year old woman. I have 2 kids a husband and 2 dogs. I'm going down the path of elective below the knee amputation to be freed from a mangled ankle and to get my active life back.

My story began at 10 yrs old when I first fractured my ankle. 8 known fractures, countless severe sprains, over the last 23 yrs resulting in 6 total ankle surgeries. The last three years have been spent trying to put my ligaments, peroneal tendons, and ankle back together again. After each surgery things get better for a bit than begin breaking back down again. I've spent the last 3 yrs on the couch, in a walking boot, or on crutches, trying this surgery or that. The last surgery in march has left me completely non weight bearing and in constant pain.

I'm currently in discussions with the surgeon about below the knee amputation. He had sent me for some additional nerve testing and counseling through this. I meet with the surgeon again September 17.

In my mind I'm prepared for amputation, I'm not scared, I'm looking at it as a way to take back my life. My counselor recommended that I try to find some additional been there done that folks. So that's why I'm here.

[cherylm]

Hi, annanicole, and welcome! If what you're describing is fully accurate, I'd say that your situation and mental state are very much in tune with an elective amputation. I'm not an "ankle" person -- my own elective amp was due to a complicated fracture in my left foot that kept breaking down over and over again -- but in my case the amputation was indeed the thing that let me get back to living an active life.

It's not an easy choice to make, but it's my belief that you will know when/if it's "right" for you. The only thing to keep in mind is that it is a very, very permanent decision: once that leg is gone, there will be no "growing it back." That said, for the vast majority of below knee amputees (BKAs) a well fitted prosthesis is reasonably close to a "real" leg. That "well fitted" comment is, however, very important: an ill-fitting prosthesis will limit you just as much as your current useless ankle, and it might even bother you more, simply because you know that you have put yourself in that situation. Therefore, before going ahead with the surgery, make sure you've lined up a prosthetist who is experienced at fitting BKAs, who can explain clearly what sort of prosthetic solutions he would propose for you, and with whom you feel very comfortable talking about everything. The people on an amputee's "leg team" become the most important people in your life...you must be fully honest with them about how you're feeling both physically and emotionally, how your prosthesis is feeling and working, your hopes, fears, and goals for the future. (I am not kidding about this!)

A good prosthesis will not hurt. It may take a little while to feel "comfortable" to you, and it may or may not ever feel "natural" to you...but if it hurts, there is something wrong with the fitting and you need to keep after your leg guys until they get the adjustments made so that it will not hurt. That means good communication on your part and a willingness to work with you on their part. That's why the client/prosthetist relationship may be even more important than the patient/surgeon one.

The willingness to work really hard at rehabilitation, along with a great deal of patience, are probably the next-most-important abilities you need when adjusting to life one-legged. You need to remember that it's not just "pop on a prosthesis and go skipping off into the sunset." There's a lot of effort that goes into learning how to use an artificial leg effectively, and it may take longer than you expect it to. It's not unusual to spend your first year working out various prosthetic problems, strengthening muscles and increasing your mobility, and adjusting to any number of other issues related to your new life as an amputee.

In my own case, I was basically quite positive about the result of my surgery...but I still had some real emotional roller-coaster rides about how slow my progress was and wondering if this was actually going to get me back to a normal life. (The one thing I was able to hold onto during those "down" times was the fact that I was no longer in pain and needing surgeries...that may be something that you can identify with as well!) And eventually, my amputation did get me "back to normal." After nearly ten years since my BKA, I can do just about everything I did in my two-legged days and literally everything a woman my age is generally expected to be able to do.

That's my view of "Amp 101" for you...do feel free to keep asking questions, both while looking at the surgery and, if you go through with it, afterwards as well. There is no such thing as a silly question when you're looking at this sort of change in your life!

All the best to you as you make your decision!

[annanicole]

Cherylm-

Thank you so so very much for taking the time out of your day to write this.

I have a great support team, friends, family, my spouse, who are super duper supportive and fully committed to getting me back to me. Honestly at this point, even if they told me the best I can get out of amputation is pain free, but need crutches for the rest of my life, it wouldn't be my first pick, but id take it. At this point I can't even be up moving about non-weight bearing for more than an hour or so a day without being in excruciating pain. I'm pretty spectacular on crutches I can even do stupid human tricks with them.

In my mind I've began the mourning process of my leg, I'm going to miss it. But the prospect of getting my life back as opposed to this life makes that pill a whole lot easier to swallow.

I've thought about things I need, I'm going to have my husband install a permanent shower stool in the bath tub as opposed to the crappy seat that has to be moved in and out. The rest of my house is setup for me to use crutches or a kneeling bench everywhere. Anything else needed done at home?

My surgeon does a ridiculous amount of amputations every year as well is a certified prosthetist, but ill interview more to get a feel.

My surgeon is located 2 hrs from my house, is it more important to find a prosthetist that is close to my home, or one that works with my surgeon?

Also, does not having your leg affect intimacy with your spouse? Do you still feel desirable?

[Ann]

Hi annanicole, welcome to the forum.

I do echo all what Cheryl has said. I've been a below knee amputee for many years now and fortunately didn't have to make the decision you are having to make now, so can only imagine how difficult it has been for you over the last 23 years and now having to make this decision. 

I am below knee (double) and have been walking on prosthetics for over forty years now, so am slightly older than you, but  am still walking and leading an independent life, I'm also married and have three children, so you see its all do-able and maybe this might reassure you with your final question on your last posting.

I am guessing that you are based in the US, so not sure if I have that right, but I know that procedures are often done differently there to what they are here in the UK, so others  here from the US will probably give you more info on that, but think its brilliant that your surgeon is also a certified prosthetist, it sounds like it will make things a lot simpler when it comes to your prosthetic fitting.

I am also guessing (sorry if I've got this wrong) that you are having below knee surgery, so in theory as a single b/k amp, long term II would imagine you'd be pretty active, but as always it will be depend on other things, overall health and fitness and particularly your prosthetic fit, which is why I think its so brilliant your surgeon is a prosthetist too, I don't think that happens in the UK but I can see the advantages.

It sounds like your house is pretty well set up and depending on how active you are able to be initially and how quickly you return home and are fitted with your first prosthesis, generally if it were me, I wouldn't make too many permanent adaptations because six months or so down the road when you have adapted to your prosthesis you might not find you need them, although, like me, at the moment, you will probably find there are always occasions when you might not be able to wear your leg so maybe something to bear in mind.  

Perhaps ask your surgeon whether or not you will be returning home from hospital on crutches or in a wheelchair, because that will make a difference, so if it is a wheelchair, just maybe think about the things you are going to need to get to etc., and maybe get things moved about so its easier, but again this probably will only be temporary for you and you may already have all this in place.

Also perhaps think about stairs, steps etc., if you are on more than one level, they are do-able even without prosthetics, though in the early days after surgery you will be quite protective of your leg so give that some thought to, you won't want to be knocking your leg or falling on it.  Top of my priorities is always the bathroom, so think about how you will manage with accessing it on one leg or maybe transferring from the wheelchair etc.

This is all actually at the moment from the heart as I am having to do all this currently, as am six weeks from my revision amp surgery and I have another few weeks before I start prosthetic fitting, so whilst I am very used to being an amputee, know how frustrating the weeks while the leg is healing can be when you are trying to remain independent and keep a bit active, so my tips would be keep everything as easy and stress free as possible. If you have the opportunity get as much as you can done now before the op.

Also it might be helpful to try and get a look at the different kinds of prosthetics available, and meet with other amps your age.   I don't think you mention your childrens ages, but maybe get them and your spouse involved with this too, generally I have found younger children take it all in their stride, though sometimes teenagers find it more difficult or perhaps don't want to be involved so much, which is probably normal at that age.

Hope this helps a bit, it sounds like you have got a really positive attitude so do wish you the best of luck with it all.

[stonecutter]

Good morning!

Ann and Cherylm have given you the best advice any amputee can to a prospective new member to the 'some-assembly-required' club.

The things I would echo are:

- Ask your questions - before, during and after... if you need to understand something before or as it's happening, don't be afraid to do so.

- Attitude is key! You need to get your mind in a place where you can accept it - it sounds like you are there and there will be days where you're frustrated / sad / depressed / up-and-down, but it will be better and you need to keep that in your mind through the rough patches in the road.

- Comfort takes a lot of work - on the part of your prosthetist AND you... You've been told in this thread that you need to keep in contact - regular contact with your prosthetist in order to adjust and get the "appliance" in a state that works for the soft/squishy/boney part that is you...

This is a good place to ask questions of others experiences but chances are there will be an individual or group of individuals who can answer and show you first hand what you might encounter. If you'd like to talk to someone like that, you can ask a medical professional in the hospital or the prosthetist's shop.

In your original post you used the term 'elective' and then go on to tell a story of life-long pain. Seems to me (and I am not, by a long shot a medical professional) that the solution you're looking for needs to provide you with a way to start living your life. That's not elective but required. Amputation may solve your issues, but its a decision that you alone can make. I wouldn't let the docs call it elective anymore. Eye lifts and nose jobs are elective. This decision is about a potential solution to life-long pain.

Hang in there and please do keep us posted!

Welcome to the forums!
Trevor

[annanicole]

I can hear in all of your responses your hearts! I feel your love and general concern for me! Thank you so much!

Those who didn't have a trauma amputation, but a planned scheduled one. Did you have a mixed set of responses to those you told? My mom and my dad (who have been divorced and not speaking for 26 yrs) both reacted very negatively. Telling me this is the worst thing o could ever consider and started sharing bizarre random horror stories with me. They have both since been put on time outs. But my close friends and neighbors and my spouse have all reacted very positively, some stating it's about dam time I started kicking this around more seriously. Have you dealt with this? I'm waiting to tell the rest of my family once a plan is in place, and some other family and friends I think I will wait until after its done to tell them, to not allow more negativity!

How have you dealt with this?

[Ann]

I think this is because of how historically this type of surgery/amputees has been thought about, it was usually thought last resort etc. etc., and to some people it is still the worst thing ever. Its still a pretty big decision of course, but the techniques, prosthetcs and society have changed and its not now always thought of in the way it was.

The cause of mine was trauma, but when I opted for my first revision amp., I initially got similar responses from some people including a few doctors, who thought I was risking too much, though those closet to me were aware I had been thinking about it for quite a time and I did talk about it with them and this time round, with the latest revision, it wasn't so much a big deal.  I think family and friends probably just worry for us and other people just don't always understand how it is.

I think some people always will talk horror stories, I even got told a few from other amputees believe it or not, but I think once people realize you've made the decision they will eventually come round to your way of thinking and I am sure will turn out to be quite supportive.

[cherylm]

I thought through my decision to amputate, set it up with the surgeon, then gave myself time to let those decisions "settle" before I told my family and friends. By the time I told them of my choice, I was able to say it in a calm, straightforward manner that made it clear that I was not going to debate this. To me, it was a relief just to be able to think of life without pain. From what I've been told by family and friends about my calls to tell them of my decision, the thing they felt about my action was precisely that: RELIEF. I don't know what any of them thought or what they talked about among themselves, but none of them questioned my decision to my face or wanted to disrupt that sense of relief. (However, both of my parents had passed on...I'm pretty sure that Mom, at least, would have had some strong opinions about my actions. Dad probably would have just cried a lot.)

One thing you may find is that people's reactions can be "oddly unpredictable" and sometimes just plain old "odd." I had one friend who simply could not comprehend just which parts of my leg were removed. She kept reverting to thinking that my amputation went from just below my knee to my ankle...but that they had somehow been able to "save the foot." I've come to the conclusion that amputation has been so little-known and seldom-discussed in the past that people have no frame of reference for the procedure. They can't wrap their heads around the idea that losing a limb can be an improvement in your life...they don't have basic knowledge of prosthetic limbs...they have no idea of what your everyday amputee is capable of doing. You will have to be their guide to your new life. Since you do have some good support, that shouldn't be much of a problem...and once your parents see how you are able to live post-amp, it's quite possible that they'll settle down and "come around."

You know, I tend to think that living near your prosthetist's office is a major convenience. In your first months you'll be going through so many prosthetic fittings that traveling long distances on top of that is just a major pain. However, I also know amputees who travel many hundreds of miles in order to see a prosthetist they especially trust and/or have had particularly good experiences with. If I had to rate the factors, I'd probably do all I could to find a good person and then worry about the distance...but know that you will be making that trip many times.

[annanicole]

Thank you again for the great words of wisdom. I think doing a canned type speech will be the most effective. As well as letting people know this is my decision and I don't want to debate it. Some I may just wait until it's done to tell. Lol like naming your baby!

I am hopeful my current surgeon is amenable to my decision, but if not I have already researched and found 2 other great ones in the DC Baltimore area.

I sincerely from the bottom of my heart appreciate you, your time, and your thoughtfulness!

[annanicole]

AHHHHH! So much anxiety about tomorrow, what if the surgeon says no, what if I let him talk me into trying something else, what if insurance says no.....what if what if what if. I have so much hope and anticipation and my life feels like its hanging in the balance. And I don't have control over it.

[cherylm]

As long as your surgeon is on board with your decision, everyone else will fall in line, I'm sure. If your surgeon does have have alternative suggestions, just give it your best consideration, knowing what you know about your own body and mobility...if it sounds like something new and "reasonable" and you want to try it, then OK, but if it seems like a "variation on a familiar thing" that's only likely to prolong a bad situation, there's nothing that says you need to go along with it. It's time for you to take the best course for YOU...and YOU are the one who will know what that is.

All the best for your appointment!

[annanicole]

I simply could not have dreamed a better appointment to happen. My surgery date is 10-27-14. So excited right now. I'm sure it will be a tough week before!

[Ann]

Glad the appointment went well. I am probably not going to be on here myself for a bit, so Good Luck with the surgery on 10-27-14. Come back after and let us know how you do.

[cherylm]

I'm glad you're pleased with how it went...and yeah, you're going to be going through a wide range of emotions and reactions for the next few weeks. After all, even if you know it's the best choice for you, agreeing to lose a rather large part of your body is a really major decision. Just "keep breathing" and remind yourself that your doctor supports your choice.

You might want to try using part of this time just to see how many of your questions about post-op, recovery, and life with a prosthesis you can get answered. You might also want to talk with your surgeon about planning for pain control, pre- during- and post-surgery. The best available info out there suggests that keeping yourself pain-free all around your surgery can do a great deal to prevent future problems with the "phantom" pains that can be the bane of an amputee's life. I know that I have had next to no problems with pain since my surgery, and several of my doctors have said that the fact that I was so pumped full of pain meds for a couple of days pre-amp and the same amount of time post-amp likely contributed to that result. (Since ridding yourself of pain is a primary goal of this surgery, do all you can to address that!)

Don't be afraid to ask anything that comes to mind...and don't be afraid to ask anyone you think might have useful info for you. That means surgeon, prosthetist, those of us here, and any possible other below-knee amputees you may encounter. A good in-person connection with someone who has already been through a procedure similar to yours can be the best thing out there! Someone who can share what has worked or not worked for them, who has been able to accomplish things you are hoping to do, and who can just let you know that what you're going through at any time is truly "normal" is a tremendous reassurance! If your surgeon or prosthetist doesn't know of someone who might serve in that capacity for you, you might want to go online to the Amputee Coalition site and ask about their Peer Visitors program...they have folks trained all over the country and will do their best to match you up with someone of the same age, background, and amputation level as yours.

Okay...I'll stop rambling now. Just know that you'll be fine, and keep in touch to let us know how you're doing!

[annanicole]

So here's the plan:

Following this phantom pain prevention regimen:

Phantom pain prevention- an epidural infusion containing bupivacaine 75 mg, clonidine 150 micrograms and diamorphine 5 mg in 60 ml normal saline was given at 1-4 ml/h 24-48 h preoperatively and maintained for at least 3 days postoperatively.

I go in at 6am and will be on an epidural all day and go into surgery that night.

Started working with a prosthetist Eric Schaefer. He works for Step Ahead with Amy Palermo winters. I'm sending him measurements and pictures now to work with my surgeon for optimal cut length.

Dr Lew Schon will be doing my surgery, he's modified the ertl a bit and creates the bone bridge with my Tibia.

I will come out of surgery in a pneumatic IPOP to prevent falls, increase circulation, and cut the time from surgery to prosthetic hopefully in half.

3-5 days in the hospital then home!

[cherylm]

annanicole, you sound ready and rarin' to go! I hope that the entire procedure goes smoothly and works out perfectly for you

[stonecutter]

Progress is good! Keep us posted!