Making the desicion...

[bassett]

Hey everyone. My name is Joshua and I've been removing from a motorcycle accident for 2.5 years now. Basically, the first and second fix did not work. So it's try again or bka and use a prosthetic. The issue is my lower tibia and upper tibia will not fuse. So I cannot walk without a great amount of pain from the bones moving. I had a metal rod inserted in 2014, but it broke last summer. Then they tried an external fixator and the did stretch and bring the upper and lower tibia together, but we found out yesterday that they are not fused and free moving. My Dr. wants to try again. I want to walk. I've been teaching and coaching for 2 years from crutches and wheelchairs. The difficult thing for me is, the foot is fine. I have a tight ankle, but the real problem is the no fused tibia. Should I keep going with surgeries or amputate?

[cherylm]

Hi, Joshua, and welcome! Here are some questions for you: Has there been ANY sign of the tibia at least ATTEMPTING to re-fuse after either of those previous attempts at a fix? (It sounds like maybe something was happening during your time with the rod insertion...but was there actual bone growth, or just the rod holding things in place?) If there has been no actual bone growth in the past, just what does your doctor propose to do differently this time and why does he think it would help matters?

After 2.5 years, there should be some signs of healing, and if there is nothing better than "more of the same" being proposed, all your doctor is doing is keeping you immobile and in pain. OK, I admit it, I'm a bit biased against multiple repair attempts if there is nothing new to try. Losing a leg is, obviously, not a great thing...but neither is being in pain while bones keep breaking down.

I went through something similar 12 years ago, with a broken foot. I went through four different repair attempts...each one of them featured something a little different in the surgical procedures, casting, and rehab, and three of the four lasted for anywhere from two to eight months. (One never did anything.) But in the end, each attempt broke down...and when attempt number five was just going to be "Let's try procedure number four again and leave you in a cast for over a year," I went with a below-knee amputation and have never regretted it.

Have you done any research on how your particular situation might work out with a prosthetic leg? As long as the location of your broken tibia leaves you with a decent-length stump, and you're willing/able to put the work into the rehab to learn to use it, there's a very good chance that you'd be in much better shape using a prosthesis. Especially for a below-knee amp, standard-issue activities are more than do-able.

If you have questions or concerns about amputee life, this is the place to ask them. Whether you take another crack at a repair or go ahead and amputate and get fitted for a prosthesis is, ultimately, up to you, but there are plenty of folks here who can offer advice and information as you reach your decision. Look around the various threads here, ask ANYTHING (there's no such thing as a stupid question when you're dealing with the pros and cons of losing a limb), and I wish you all the best!

[bassett]

Thanks for the input. We tried the rod the first time around because of all the trama to the leg. I also had a PCL and post lateral ligament reconstruction to the knee. So, in the beginning, the rod was the best choice. Then, when that broke, we took out the failed bone graft and went with an external fixator to "strech" the tibia down to meet the lower tibia and close the gap. The issue now is that the tibia did not fuse. So its free floating and grinding with each step. So, the short answer is, yes, the leg has healed well from ankle to knee, but the tibia seems not to want to heal. It rejected the first bone graft (hence the failed rod) and it did not fuse using the external fixator. Also, I have a kid on the way in 7 months time, so I'm bound to be walking by then.

[cherylm]

Okay...a few more questions/suggestions: If your leg were to be amputated at the point of the broken tibia, how much of your lower leg would remain? Mid-calf or longer = good prospects for a prosthesis; the closer the amputation site comes to your knee, the more complicated it can be to fit and adjust to a prosthetic leg. (Still do-able...I have BK friends with very short stumps who are extremely active, but there are some considerations to address when you have very little residual limb to act as a "lever" for moving your prosthesis.)

And how would you rate your overall strength and physical condition after all the time you've spent dealing with recovering from the accident and all the subsequent repair attempts? If you have really good upper-body strength, a good sense of balance, and reasonable energy and endurance, so much the better when trying to transition to amputee life. Those are things you can work on now, even before deciding whether or not to amputate...they'll become essential if you do go for the amputation.

And...well...if you're intent on being more-or-less functional/active by the time your child is born, that does mean making a pretty quick decision. Just getting a first prosthesis can take from several weeks to many months. (My own case is longer-than-normal, but it was a full five months from my amputation date to the day I took my first prosthesis home.) Once you have a prosthesis, there is a moderate "break-in period" to get your stump accustomed to being/walking in a prosthetic leg...and this is NOT something you should try and rush, as "pushing too hard" can actually cause injuries that will just prolong the break-in. Once you're wearing it for a substantial part of the day, it will take time to build up to truly active walking.

Sooooo....in addition to online research, try to make contact with a surgeon experienced in performing amputations and also with at least a prosthetist or two and see what they have to say. If you can actually meet up with a BK amputee of about the same age, weight, and amputation level, that could give you some valuable information. (If you're in the USA, the Amputee Coalition keeps a listing of certified peer visitors who are willing to talk with prospective/new amputees; if you're in another part of the world, a prosthetist might be able to connect you with someone.)

This is a lot of info to drop on you...I hope it's not overwhelming!

[bassett]

That's a good bit of great information. Thanks so much.

To answer your questions about the stump length, my leg is healthy from the knee down to, maybe, 3 inches above the ankle. So, unless they chose to move up the leg for other reasons, I think I should be able to keep the entire calf. I did read that the "low profile" prosthetics did not have as much energy return and the mid length, 7-15 inch, versions. So, for that reason, I may want to move a bit up the leg in order to have a 10 inch or 12 inch ankle to stump leg section.

As far as fitness level, I've been in a chair and crutches for 2.5 years. So, I'm not in the best shape of my life, but my upper body is strong and my balance is pretty good. One issue to consider is my weight. I was 255 lbs when the accident happened. I'm around 310-320 lbs now, mainly due to sitting. I used to be very active and eat a large amount. Now, I eat the same but I am not as active. So the feet and leg combos I've been looking at are all rated for at least 350lbs.

Another question I have is, if I get a prosthetic rated for 350 or 400 pounds, how does that translate to working out. Say I'm 300lbs and I want to power clean (ground to shoulders lift) 185lbs. Does that mean I'm over the limit, or would it be the total weight devised by two because of the good leg supporting half?

Also, with that in mind, are the prosthetic limbs designed specifically for heavy loads, like those in a weight lifting situation. Something up to 500 or 600lbs rating?

Also, you mentioned siting down with a person with a prosthetic and also a doc that could walk me through the process. I'm meeting with my trama surgeon and a prosthetics doctor (who happens to be a person who uses a prosthetic leg as well) in March 15th. So I will be able to hear the next incarnation or saving the leg vs the amputation route from both drs. They are both very skilled and I trust each of their opinions. So, I'm going to lay out my needs as far as my family is concerned and let both of them "pitch" or explain the pros and cons from their perspective sides. I'm excited to have that meeting. I'm really excited just to have a plan. Right now I'm in limbo and it's not a fun place to be.

[cherylm]

Sorry I checked out there for a few days....I've been going through my own little prosthetic adventure. (Getting a new leg made following a revision surgery that left me a couple of inches shorter on my amp-side.)

Anyway....since I was in seeing my own prosthetist (and I know very little about weightlifting myself), I asked him about your situation. His opinion was that you might be able to get a leg that would withstand a fair amount of "heavy lifting," but most manufacturers would not warranty prosthetic components for that use. If the leg were to break down while you were in the middle of a lift, it would likely be a QUICK break and collapse, which could be a liability issue for the vendor if they had issued a warranty. A couple of possible solutions: Take up bench pressing instead of power cleaning...or seek out someone who builds highly specialized prosthetics to be used by athletes and who might have access to components that COULD get a warranty for weightlifting. That last one, if you could even manage to find someone who could do it, would likely be very expensive and would not likely be fully covered by insurance. If you are truly VERY good at your sport, you might be able to get a prosthetics company to sponsor you.....but that's a whole new world! Just get yourself up and about first!

It sounds like you're on the right path with your research. I once had a prosthetics technician who was a below-knee amp himself, and he was a fabulous source of information, ideas, and suggestions for me! He also understood the differences between his situation and my own and was able to explain what I was going through and why there were some things he could do easily that drove me crazy to try. (I'm a very tall, older, rather clumsy gal who lost her leg after a long period of disability; he was on the short side, very well coordinated, and lost his leg in his teens in an accident, so he'd more-or-less grown up one-legged.) So do keep looking for someone of about your age, weight, and physical condition who has been using a prosthetic leg for at least a couple of years....being able to talk to someone who has already been through what you are currently experiencing can be invaluable.

I'm glad to hear that you seem to have a good amount of leg to work with. Do let your surgeon and prosthetist guide you on what level of amputation would work best for your prosthesis. You're right, too long a stump can prove problematic when you're trying to assemble a variety of prosthetic components, although longer is definitely better than too short. Get everyone on the same page as to what your new leg should consist of, and then let the surgeon aim for that result.

My own little "pitch" here...I went through a number of years fighting for an ankle that would actually flex in response to my weight and stride. My prosthetist for those years kept insisting that I was too much of a klutz to have an articulating ankle. My prosthetic tech at that time kept insisting that a flexible ankle would make me "less klutzy." It was frustrating. When I moved away and had to find a new leg team, they were fully in favor of that articulating ankle. And yes, it DID make me much less of a klutz! So at the very least, ask about any additional "bits" that might be added to your leg to make it function as well as possible for you.

Be fully honest in your meeting with your team of experts. Level with them about where you are now, what you hope to do soon, and also what your future goals for daily life and activities are. If you do go ahead and decide on the amputation, be brutally honest with your prosthetist about EVERYTHING that is going on with your fittings. A prosthetics team is an extremely important part of an amputee's life, and excellent communication -- both ways -- is essential. You might as well start developing that habit right now, in making your decision!

[bassett]

Cherylm, thanks for the input and for sharing your story.

I'm continuing to research and seek out people to discuss my situation with. Just yesterday I got in touch with Ryan Fann in Savannah, GA. He was an athlete in the Athens Greece Paralympic Games. I know one of the US Para Coaches, Kelly Carter. Kelly is the Georgia Southern Track Coach and his athletes are using my (I Coach track at Statesboro High School) track while they have repairs done to thier's. Anyways, look up Ryan Fann. He run a non profit fitting running prosthetics for young track athletes and he is a director of a prosthetics lab in Savannah. We spoke at length about my situation and he thinks a good everyday foot is the Fullauer AllPro for my needs. So I'm researching more into that system today and continuing to look into stump length. I believe my doctors will have the ability to go anywhere from 7 inches to 15 inches below the knee, so it will be a team desicion as to how long will be best.

My support system has had 2 weeks now to process the idea that I am cutting off my good foot because of my bad leg. That stuck some people as insane, but it's as close to sane as I can get. I've read some research in the last week focused on the long term outcomes of salvaging limbs like mine. It doesn't usually turn out well once osteoporosis starts to sethe in. My mind set is simple; I would rather rely long term on tech getting better rather than my bones getting stronger.

So, with all that said, I believe I can confidently say that I have made my desicion and that I will be BKA in the near future. It feels good to say that, even if it's on a keyboard.

Thank you for asking questions and being a sounding board. My wife is great and my support system is wonderful, but they shy away from asking serious questions. They just shake their heads and say "I'm so sorry". But that's not what I need. I need to be able to answer real questions about real issues. I live them all very much, but this seems to be something only another amputee can openly speak about without feeling like they are prying.

Thanks again Cherylm, please know that our short discussion was meaningful to me. You can cross off "nice deed for the day" for the next few months!!!