Facing atk amputation

[joecool]

I'm going to have my left leg amputated above the knee. I am having a tough time dealing with it. My question to everyone is: what do do you wish people had told you beforehand? Are there any questions I should ask the Dr? What helped you? When my wife had major surgery, there was a board that helped her know what to expect. I guess I'm looking for something similar.

[cherylm]

Hi, joecool...This is the place to come for answers! I'm a below-knee amputee, so I'll just talk about "general amputation" issues and leave the specifics of AK surgery and prosthetics to folks with real experience.

You absolutely should ask your doctor any questions that pop into your head! If you have concerns about how the surgery will be done, how long you may remain in the hospital, what you'll need in the way pf rehabilitation or physical therapy...anything. Amputation is not something you're just "born knowing about"...your doctor is the authority and should keep answering your questions until you feel comfortable that you know what's going on.

If you have not yet met with a prosthetist, that's another person you'll want to get in contact with and ask many, many questions of. Your prosthetist will become one of the most important people in your life, so you want to make very sure you're comfortable discussing everything with him/her. Ask them if they regularly work with above knee amputees (and particularly with AK amputees who have similar levels of amputation to what you're looking at). Ask about what they foresee in the way of prosthetic solutions for you. Again, ask anything that pops into your head! It's so easy to just become overwhelmed with questions...don't think you have to deal with them all on your own.

The thing that was absolutely the best thing to happen to me, post amputation, was to simply meet another below-knee amputee who had a great deal of experience living a normal, active, one-legged life. Check and see if there is an amputee support group in your area...or, if you're in the U.S., contact the Amputee Coalition on-line and look into their Peer Visitor program. They can set you up with someone who has been through the same type of surgery as you, is about the same age and gender, etc.... It's a great reassurance to actually see and talk with someone who has already faced the challenges you are and who can give you advice on "what works."

Find someone you can talk to about your concerns! This forum is a very good place for that. It's common for a new amputee to want to "spare" their family members any more concern, so we "suffer in silence." It's amazing just how much less there is to "suffer" over if you can simply put it out there and find out that what you're going through is "normal" at that particular point in time and that it will get better.

Hope that helps!

[Ann]

Hi Joecool, as Cheryl says this is a good place to come for answers. I too am a below-knee amputee (bilateral), so like Cheryl don't know the specifics of AK surgery, however I do know very many AK amputees who live very active and fullfilling lives, and am sure other a/k amps on here will let you know, it is all do-able.

Can you tell us more about yourself Joe, perhaps whereabouts you are, as things will probably be done a bit differently, dependent on where you are located. Cheryl has spoken about the Amputee Coalition in the U.S., we have similar organizations here in the UK too and probably in other countries likewise. If you are in the UK we have the LA (limbless association) www.limbless-association.org/ they also do the peer support that Cheryl mentions is done in the US, and if you are in the UK, local amputee user groups will offer support to and can be contacted either online or through local prosthetic centres.

[snarfler]

JC,
There are a few things you need to know in order to survive an amputation. I am basing my opinions solely on my own personal experience. First, I had the finest Doctors, Hospitals, Physiologists, Physical Terrorists and Prosthetists available. Absolutely NOTHING they said compared to the information I received by talking to other amputees.

Next, a prostheses does not have to hurt. If it does then don't accept it. While it is true you are a patient, you are also a consumer. Question their choice of knee and foot products. Make them explain why they're the right ones for you. Ask about various socket styles.

Next, don't think that the most expensive products are the best for you. While they may very well be, the best products are the ones that work for you. Each of us is unique. For me, product weight is an issue.

Next, you need to get your mind right. There will be times when it will hurt. Possible blistering, sores and infections,falls. You'll want to throw it in the corner and give it up altogether. That's when you turn to us. We have an answer for you. You must find your courage and determination. For me, there are Four simple words that have saved my life when I should have been killed. Made me wealthy and wise.

I haven't been around much as it's been a great summer and I've spent it on the boat but I'll be checking in more often now that the Beach Bunnies will be going back to work.

[mwnelson3]

Joe, I had my right leg amputated (atk) 13 mos.ago. The Navy surgeon amputated btk initially but due to staff infection (twice) they had to remove atk. Bummer. ATK amputation is harder to work with because you no longer have the knee joint. It took me awhile but Im just now starting to walk without assistance [crutches, walker, cane]. I do still stay close to something I can lean on to steady myself etc.
Build up your good leg because its going to carry most of your weight and will wear out quickly. Take crutches with you as back-up. Some things will be very difficult, e.g. I love to flyfish but walking around slopes is hard if not impossible (for me anyway). I'm 68, so my balance may be worse than someone younger. I have seen videos of atk amputees running track but they were much younger than I. As far as the prostetic fit, make sure it does fit. If you develop any rash STOP wearing it until the rash is gone. If it continues, see the prostetics people. GOOD LUCK!

[bassett]

Joe Cool,

Your name is going to be a big part of the next few phases of life for you. Keep cool and educate yourself. I amputated below the knee 2 weeks ago, so I haven't even been in a prosthetic socket yet, but I tell you what, I can name about 15 different set ups now from just researching online and asking questions on forums and (most importantly for me so far) meeting with a prostetist to really talk about my case. Cheryl and Ann and Snarfler and mwnelson are all giving you great advice, so listen to them. The best thing I can tell you from my situation so far is; I'm so much happier now, living without my bad leg, that I can't even express it with words. My situation (we all have amputation in common, but our stories are our own) was 30ish months of trying procedure after procedure to salvage a bad lower right leg and finally, when my wife came up pregnant, I decided I was tired of trying operation after operation, so I wanted a final operation and I wanted to be on 2 feet (my own or manufactured)... Its a life changing ordeal, but it does not have to be framed as negative life changing ordeal. I fully believe my life is better than it was before. This is true for me and for my family. My wife is happier, because I'm happier and this is due to being pain free. So, I think Ann was asking for more details, that would help us help you. All I can say is that the mindframe that you put yourself in will guide your days. I have had days (before my amputation) that I woke up pissed off, went to work pissed off, came home pissed off and went to sleep pissed off. But, nothing was gained from that. Nothing changed because of it. The only change I have seen with my case has come from a positive mindset and me challenging myself to rethink everyday life situations. Its much much much easier said than done, and I'm not perfect at it either, but simply attempting to control your emotions and steer them positive will result in a better day to day experience. Today, for example, I spent 2 hrs researching snowboarding with a prosthetic. That has me thinking about taking a vacation next year to see some friends out in Colorado, which in turn made me text them and catch up. So, your emotions and outlook drive your days. be happy in the fact that you're going to be on 2 legs again soon, and that tech is only improving with time and that you get to park in handicapped spots now and never have to worry about parking again (I don't know why I love that thought, but I do). Anytime you get down, message me, I check this forum daily. I'm always here to talk. And, most prostetists know other prostetists, so if you give me your location I will ask my guy if he knows of a good person for you to work with. never hurts to ask. Good luck JoeCool and stay connected with us!