Iraqi Veteran considering an above knee amputation.

[wildman]

   Hello all,
I have already read thru a lot of posts already and there is a lot of great information here and I have already learned some things.
I was wounded on 19 Oct 2004 while guarding one of the gates on the base I was at. The round came in thru the back of my leg and shattered my femur, severed my femoral artery & caused nerve damage to my leg. I couldn't walk for 6 months but once I started physical therapy I surprised all my doctors. They had told me I might never be able to bend my knee more than 20-30 degrees because of how close to the knee the damage was. I now have 90 degrees of movement and can walk but still have a limp.

My problems are that due to the nerve damage I have chronic pain, neuropathy, muscle loss, drop foot & am on a ton of drugs for the pain. Because of all the drugs I have lots of side effects that are not good for me or my health. I am also in pain everyday even with the pain meds. I have gone thru all the lower strength meds and am now on methadone to try and keep the pain below a 7-9. I also take oxycodone for breakthrough pain when needed. I can't walk more than 2-3 blocks without being in pain and if I am on my feet for more than 20-30 minutes I'll be hurting so much I have to sit down. Now all this has limited my life style and makes it hard for me to enjoy my family. I have a 11 year old daughter that I can't play catch with or other physical type things. I use to be a very active outdoors type before I was injured.


So now with almost 9 years of living with my leg the idea to have it amputated has really started looking like a good idea. This is not an over night idea. I have actually been thinking about it since I was first hurt but have been researching and trying to learn all I can for about the past 18 months. My wife is in agreement with the idea and I have talked with my counselor also and she thinks it is a good idea. Also brought the idea up with my primary care doctor and he agrees. Now finding a orthopedic doctor who is willing to take what they call a living viable limb has proven to be a challenge. But now I have found one so I have to make up my mind. I strongly feel my quality of life will improve if I have my leg amputated. My one issue is finding other amputees to talk with that have an above the knee amputation. Also I have not talked with the doctor to make sure that I would have enough stump left to allow me to wear a prosthesis. Even though the bullet hit my femur close to my knee it shattered the bone pretty bad. I have a plate with 12 screws holding my leg back together right now. I also have the saphenous vein from my left leg in my right which repaired the severed artery.


So I would really like to hear your thought on my situation. Also if there are any above the knee amputees I would really like to hear from you. I have a web page that has pictures of my leg if anyone is interested. www.4x4nut.com

Thanks in advance,
Rick    

[cherylm]

Hi, Rick...I can't answer on the "Above Knee" front, as I'm a BK amp, but I can say that finally deciding on my own amputation, after a long period of disabling pain and limited mobility did indeed improve the quality of my life. However, if you do decide to go this route, just try to remember that pain in amputees is a very, very weird thing: Losing your injured leg might get you pretty close to pain-free, but there's also a risk that it could trigger phantom pains, leaving you with pain in the spot where your leg ISN'T.

There are a number of theories on how to prevent phantom pain following amputation: one of the primary ideas is that, the less pain you're feeling immediately before, during and after the surgery, the less chance of phantoms developing. So if you do go the amp route, make sure you to continue your ongoing research as you prepare for the surgery and make certain your surgeon is in agreement on the pain control and prevention options.

Just a word of warning, as you've been both living with this leg and thinking about this option for a long time now. That said, I've been very happy with my own amputation, as it's allowed me to get back to living a basically "normal" life!

Good luck with your decision, whatever it winds up to be.........

[allenuk]

I'm below knee, too, and that knee joint makes an enormous difference.

But in general terms, the way I'd look at it is this:

At present you have major problems, and you're going to spend the rest of your life trying to solve them, or live with them.

After amputation, you would have a DIFFERENT set of problems, but there is a whole industry devoted to solving those problems, of prostheses, physiotherapy, home aids, and so on.

And while you often hear of people with one leg (or less!) doing amazing things like running races or climbing mountains, you don't often hear of people in intense pain doing the same things - although they might, I suppose.

Your decision, and not an easy one, but I'm sure we'll be able to offer some thoughts to help you make it.

Best wishes,


Allen.

[stonecutter]

Hi Rick,

Couple of things:

1) Welcome to these forums. It's great that you found this place, although I wish it were for happier circumstances.

2) As a Canadian, I recognize that the security of my family and country is dependant on the relationship between our countries, so accordingly - I thank you for your 28 years of service and sacrifice. I real your website in its entirety (even the 'after military' page) and can understand why you'd be frustrated. I hope things get better for you in that regard.

Now then, I was injured in an industrial accident when I was 19. I had doctors try to save my leg for three weeks when I was given the choice. My choice was to either hang on to a glimmer of hope that I would have a good quality of life after suffering severe damage to my bones / muscles / nerves or just amputate below the knee and get on with life. For me, even at 19, the choice wasn't too difficult.

This being said - everyone has to make that choice for themselves. For me - I have never regretted the choice I made for one second. Well... that's not true. After the amputation I had a really fine case of insomnia. The nights were the worst as I laid there alone with my thoughts, trying to sleep while I was worrying about how my life was to fold out and I did have a few "What have I done?!" moments, HOWEVER, once I was healed enough to be fitted with a prosthesis, NO REGRETS!!

Like Allenuk and cherylm have said, amputation does present you with a different set of circumstances. While not a fully pain-free life, I can say that for me, I am much better off without my mangled leg than with, even after having to have a revision surgery last year. (Phantom pains were more frequent and intense before the revision surgery than after).

We do have a number of AK amps here. I hope we can talk you through pros and cons and help you make the decision that's right for you.

Please feel free to ask any questions or make any observations on any thread regardless of age. We're here to help. Again... Thanks for joining our forum.

Trevor

[grigoryevich]

Hello Wildman

You say that you need to talk with above knee amputee. Well you have one here; since the 1970s! Different war and not your 'team' but who cares? My amputation now leaves me with a femur of 6" Initially I have femur of 10" but it was necessary to have a revision and have a better 'job' done. Even with short femur length, I was completely adaptive and able to walk without limp although I would get tired and sore if walking too far.

There is a mentality among some medical people to preserve a leg no matter how awful it is for patient or in fact disabling and I really wish they would listen at times to 'users' who frankly I sometimes feel are treated like idiots.

I did suffer from the usual phantom leg sensations for about a year and then they subsided and after 3 years went completely. My world that side now stops at the end of my thigh!

Personally, I went through usual trauma psychological issues and had to find my own resolutions. (Russians are supposed to 'endure' without complaint it seems). For many years I continued in military and would never, ever be seen without my prothesis. I would rather have died. Even now I find current Western habit of 'flaunting' a false leg incomprehensible but we all think differently. While I have no personal problems of my 'body image' to this day I have never gone to a public swimming pool to be seen as I really am. I tried it once in the 70s and a little girl started screaming and I bailed out never to return!

So what does an above knee amp mean? Well, one does have to do things a little differently, such as stairs etc. The loss of knee makes a big difference but I have to say does not ruin life and I continued to pilot aircraft and repair the roof.

At 67, I have now completely worn out other leg which has also developed issues from same original trauma and shortly I lose that one too. I have been wheelchair bound for ten years now and have not worn prothesis. It was difficult at first for me but I quickly adapted to be seen as one legged.

Surgeons wanted to amputate other leg at knee and I have told them to go to hell and amputate at same level as other one. While fit, I have no ambition to try to walk again except on my backside with hand blocks. I did not want a long stump stuck out in front of me as a vulnerable battering ram. I also still like making things in workshop and want to be able to rotate in wheelchair etc. So shortly, for first time in 40 years I shall again be symmetrical!

I do not know what questions you would wish to ask but would be happy to PM with you if you prefer.

best of luck from a very stubborn Russian.

Григорьевич

[allenuk]

Well said, grigoryevich, well said indeed.

Does it strike you as ironic that 20 or so years ago, you and Wildman might have been facing each other down the barrels of your guns, as our Lords and Masters tried to get you to kill each other in yet another pointless war?

And now you are just two men with leg problems.

May you both find Peace, and more peace.


Allen.

[grigoryevich]

Hello Allen

That is very true but in truth, I would have loved to face the Americans in my MiG instead of the 'proxy war' we actually fought. I always respect another serviceman though, no matter which side!                   

of courseright now, we are closer to a real shooting war than since Cuba.

Peace? I think never unless women run the world. Testosterone fuelled male pissing contests will always result in us trying to kill each other.

Jokingly, when I see McDonalds close to our Kremlin, I must say I often feel we should attack the USA pre-emptively for Big Macs alone!  LOL

[allenuk]

Well, points taken, and generally I would agree that testosterone-fuelled men are the bigger problem (although Margaret Thatcher and Golda Meir spring to mind as exceptions).

But apart from the second World War, I think most of the conflicts of the past half-century have been about power-politics, not good against evil. And the winners? Certainly not the squaddies, not ever...


A

[fattkidlovescake]

I'm going through same issue with knee always in severe pain. Can't physically do really anything, use a cane to walk and on morphine several times a day. Was injured in combat in 2007, several knee surgeries and have done te pain management , steroid shots, ot/pt etc. nothing has worked. Had the head doc of CFI in San Antonio when I was in wtb look at my knee and he said above knee amputation would help with all my injuries and I could have a better quality of life. Then I was transferred to bliss and they said no, now i been trying to talk to va to do it. I am ready to have a normal physical life, walking ,running ,hiking , riding my bike. I don't get why the docs don't want to do it even though everything else has failed. Why is it ok for me not to be able to enjoy my life and be in pain. Wildman if you find out who to talk to let me know what you did.accomplish or fail please need help. Also if anyone has advice of being an amputee good /bad I would appreciate it. Thanks  my email [e-mail]

[allenuk]

Fattkids: can't help with the US medical system, I'm afraid - although in many ways it is similar here in the UK. There is a class of doctor who believes that amputation is a failure of medicine, and what you have to do is to find the more intelligent surgeons who believe that amputation is (sometimes) the ONLY way out of a big black hole.

Plus of course the cost of the operation and rehab, which (I would guess) runs into $50K plus, so some insurance companies see it as cheaper to give out expensive medication rather than bite the bullet and get you moving.

Dreadful dilemma, after you've sacrificed so much for your country - I hope Wildman comes up with some practical advice.

In the meantime welcome to the forum, although I'm sorry you have to be here.


Allen.

[fattkidlovescake]

Thank you allenuk. I wouldn't do it but with technology they have now I could be up and running 6 months later if things go right. I'm going to keep pushing the issue to me less pain and being able to get around better is worth the last option. 

[ann58]

Jul 10, 2013 10:58:54 GMT -7 fattkidlovescake said:

Thank you allenuk. I wouldn't do it but with technology they have now I could be up and running 6 months later if things go right. I'm going to keep pushing the issue to me less pain and being able to get around better is worth the last option. 

fattkid: I do not know how the VA works, but why can't he refer you to someone {another surgeon}. Do you have any insurance coverage besides the veterans? I would think the clinic in Florida {Prosthetic & Orth} in Orlando, Fl., run by Stan Patterson, could be a big benefit to you to find someone. Maybe they could at least advise you what route to take. I have heard he takes care of alot of veterans.

[fattkidlovescake]

No all I have is va for now. Pretty much I have to get nursery to decide if I should see doc now or have appt to see him, then doc decides if he wants to do anything or refer me to ortho. Then ortho does same. They have on record I have done everything else. They just repeat the process with excuse. Well you didn't do this stuff for me so it doesn't count then I have to do it all over again. Pretty much it's a fight to get them to do anything but so easy to get meds. I will keep pushing for it to be done maybe as elective surgery for pain. I don't know. I look at it if it eliminates or helps relieve pain then why not do it if everything else has been done.. Any other suggestions . Thanks Ann58 for reply

[wildman]

fattkid,
If you look under tell your story I explained what is happening now. I have real bad arthritis in my right hip so they want to replace my hip before we can talk amputation anymore.

Wish I had better news right now. My best advise is to just talk to as many doctors as you can till you find one that supports you getting your leg amputated.

[wildman]

Well it has been 5 years since I first posted on here. WOW how times have changed. I was about ready to give up on getting my leg amputated when I was sent to Harborview Hospital in Seattle. I met with a Dr Smith first and he was willing to talk with me about the amputation. But first he wanted me to try a new type of AFO to see if it would relieve the pain I was having. So I wore this AFO for 9 months and it didn't help any but of course during that time Dr Smith retired. The new doctor that his place wasn't interested in talking with me abut amputation. So they sent me to the foot and ankle clinic instead. I met Dr Brage there and after talking with him for about 90 minutes. he agree to amputating my leg. Fist he wanted me to go thru a psych evaluation again. So I got this done and then was waiting for summer to come around so that my daugher would be out of school.


Well on 14 May 2018 I had my lower right leg amputated and I am doing pretty well now. I am shrinking a lot and am in a new test socket trying to get it fitting correctly. I was in a suction socket and am now using a pin lock.

[wildman]

[cherylm]

Sounds pretty good to me! I am VERY happy that you were able to keep your knee...that can make a big difference in both mobility and getting a socket that's comfortable to sit on. Good for you in persisting in your quest AND for being willing to try out some alternatives and go through the psych eval....if nothing else, you'll know that the amputation was indeed the right thing to do.

All the best to you in your recovery!

[stonecutter]

Hey! I was thinking about this thread just the other day (probably no more than 10 days ago or so) - what a coincidence!

Thanks for coming back and sharing this update. I'm glad to hear that things are looking up for you and that YOU got what YOU wanted from the doctors!

I truly hope that this gives you a more comfortable life!

Welcome to the "some assembly required" club - Keep in touch!

[wildman]

Thank you all for welcoming me back. I was shocked when I first went to see the doctors and they said I could get a below the knee amputation instead of an above the knee. My knee has had a rough life and having that bullet hit so near the joint hasn't helped much. I will be around and will keep everyone updated on how I am doing.

Right now I am having lower back issues which I think is partly due to me walking wrong for so many years and am now trying to walk better. Plus I am completely off the Methadone I was taking for over 8 years due to pain. But since I have been off the Methadone I have a issue where I get pains in BOTH legs. It is kind of like when I have restless leg but the pain is WAY WAY worse. So the doctors are still trying to figure that one out. If we could stop that pain I would be happy as HECK.

[stonecutter]

That's a good point. In 2013 I had a bad back. I hadn't been thinking that it could be attributed to the fact that I am an amputee. I sought the advice of a chiropractor. For the first year or two it was twice a week, then I graduated to once a week and more recently once every two weeks.

She has found that amputees compensate a lot with the unaffected sides of our bodies that it causes a lot of other issues. Issues that she has been able to adjust and correct. (She doesn't only work with my spine). I feel pretty good now.

She's also fascinated with phantom pains and convinced that she can make adjustments to my spine that can alleviate the severity and lessen the frequency of the occurrences.

I hope you get your pain in your legs under control. Maybe a chiropractor can help with your back?