One of the most difficult things about being an amputee can be dealing with prosthetists.  (no, not prostitutes!).  Prosthestists are the guys (it’s almost always guys making the prosthetics, working in the shop as techs, and women “running the office”) who make prosthetics, in other words, artificial limbs.

Like any practice there are good ones and bad ones.  The 80/20 rule certainly applies, though I kind of wonder if it’s more like 90/10 where just 10% of the  practitioners in the field account for 90% of the quality.

I’ve seen about 5 or 6 different prosthetists since my amputation in 2003.  That’s not a huge number if practitioners, but it’s a few.  I’ve moved from one practitioner to another over the years for various reasons.  More than once the change was the result of the company the practitioner worked changing, or the prosthetist went to work somewhere else.  In some cases we just seemed to be out of ideas, and thought it would be worth while to give someone else a try.  There was another that was just doing specialized work on my first riding leg.

My most recent prosthetist left his company, NOPCO (I hesitate to share the link because they’re such a hack company!), to start an office for A Step Ahead, who doesn’t accept Blue Cross (the largest health insurer in Mass).  This was the second practitioner NOPCO had lost due to leaning too hard on their staff to squeeze more profit out of their patients.  They’d been looking for prosthetists to get limbs fabricated, fit, delivered and billed in three appointments.  Even I would love it if there were someone that skilled!  Unfortunately the guy they replaced my prosthetist with made that gorilla from the ’70’s American Tourister t.v. commercials look like a skilled craftsman.

So I decided to take another look at Next Step, the place that gave me my first leg.  Before I lost my leg, they blasted right through any sort of HIPAA regulations at Dartmouth Hitchcock hospital to make sure that they had first shot at me as a patient when I went leg shopping.  They even gave me my first leg to get me started.  They built a couple of legs after that with some success, but in time I didn’t think I was getting quite what I needed.

I’ve figured out more than a few things since I left them about 7 years ago.  I’ve learned where small changes can be a big help, and that hardware under a socket isn’t useful unless the socket fits.  I also discovered that one of my main problems with fitting had little to do with fit, and more to do with a circulation problem that I’ve since had resolved through surgery.

Indeed, Arthur Grahm, the lead prosthetist at their Newton office remarked that now that I have 10 years of life as an amputee, it’d probably make his job a lot easier.  That first appointment there was a lot of “Glad to see you” and “You’re doing really well”  and “We’d love to work with you.”  I left optimistic, but with a grain of salt in my cheek.  They only thing that had troubled me was that while I’d spent the past 10 years learning about being an amputee, it sounded like they’d spent the past ten years doing exactly what they were doing when I’d last seen them.

They were very proud to point out that they had several of the Boston Marathon bombing victims as patients.  Jerry, who’d been a tech when I was there last was now a Certified Prosthetist.  Soon, they’d be opening a new, improved space in Newton.  It was just that they didn’t have much new to say about prosthetics that bothered me.  I told them that I’d been having trouble with the durability of the suspension sleeves that hold my leg on.  They seemed pretty sure the sleeves were breaking down from strikes and being leaned on by sharp objects, rather than the finish on the trim of my socket being worn off.

Anyway, they ordered some Otto Bock suspension sleeves for me.  Of course, since we didn’t address the socket trim line issue, I ripped through the new sleeves in about a week.  So I made another appointment to get a different type of sleeve, from Ohio Willowood,  that might last longer.  (These are the kinds of leaps in thinking that are left up to the patient.)  “Oh, ya, I’d forgotten about that sleeve.” Arthur said.  “Not really sure why we stopped using that one.  We could give that a try.”

When I stopped into the office to pick those sleeves up, a really interesting group of Amps were visiting the office.  Aaron Holm, and friends that work for his non-profit “Wiggle Your Toes” were talking to Arthur about the work that they do to help amputees recover from their injuries, and return to their daily lives.  They’re a a really cool group of people!  We all shared stories, complained prosthetists that weren’t willing to go the extra foot, let along the extra mile to deal with traumatic amputees.  Arthur chimed right along with all of us…

On my third appointment, I walked in on my daily walking leg, and tucked my two other legs under my arm (one for riding horses, the other for skydiving & skiing).  I was interested to see what Arthur would have to say about the other legs, and what ideas he might have for improving upon them.

The first thing he told me was that they had cancelled my appointment earlier in the week for an unexpected meeting with the owner of Next Step.  In that meeting the owner made it adamantly clear that they would not work on legs built by anyone else.  “Not a problem” I told Arthur, “We’ll start from the ground up, I have no problem with that.”  We agreed that the current set of legs could serve as guides for what worked and didn’t in the past, but we’d be going on to build new things.

As we talked, I could sense some misgivings under the surface on his part.  We detailed out some notes about each leg and so on.  He voiced doubt that Blue Cross would be willing to pay out for three legs in one year, despite the fact that they’d done so in the past.  He said he’d have their insurance person look into it.

As the time drew to a close, I could see I was no closer to getting a new leg than when I had walked in there.  So I put it on the line for him.  I said that it seemed to me that there was some question as to weather or not Next Step wanted me as a patient of theirs.  I acknowledged that I’m not your typical amputee looking for a leg to help me get around.  I’d be looking for legs that could keep up with me and perform in the various different arenas that I’m active in.  So I left the question on the table, “Does Next Step want me as a patient, or is it something that your just not interested in tackling.”

After following up with them on Monday, I got a return call from Arthur this morning.  Despite the fact that I half expected what he told me, I was still a little shocked and dismayed at what he said.

“We have certain protocol that we have to follow when we see a patient that we had seen in the past when considering them as new patients.”  Funny, three appointments in, and I’d heard nothing of this “protocol”.   He went on to say that Next Step felt that they “wouldn’t be able to meet your expectations.”

Despite the fact that I had a feeling this is what they were going to say, I was still let down.  I guess I should be happy that they could be big enough to admit that they don’t have the skills or inclination to handle I highly active prosthetic user.  Still, it’s frustrating that this is the state of prosthetic companies.  They want the easy-in, easy-out, low demand patients that really maximize their return on the time spent.  I have no criticism for someone who wants to make a profit, I’m all for that.  Of course, they wouldn’t exactly be loosing money on a patient like me either.  They’re just unwilling to stretch a little, take a little risk and challenge or improve their skills.

So, the search for a prosthetist who has the skills, guts and passion to take on a horse riding, skiing, skydiving and just generally active and healthy amputee continues.  There’s got to be a practitioner out there somewhere that’s willing try.

~ Amped Andy