Monday, December 9, 2013

Here we go...

I am a soon-to-be VIP member of the BKA ("below knee amputee"....or as my brother-in-law calls it, the "baloney amputee") Club.   Surgery Date Set:  January 9th, 2014.  New year, new leg, new lease-on-life.   

How does it feel?  Very strange.....especially since the last few months have been filled with medical appointments, referrals, records requests, and lots of soul-searching.  I also have been making a lot of connections with folks who have gone through similar ordeals.  Without question, the decision to move forward with a BKA is consistently the wisest choice (given the other sub-optimal choice of more trial-and-error painful salvage procedures....although it is admittedly the most difficult one.)   Here's the deal:  Gear up for six months-to-one year of frustration and another arduous recovery (especially early on).....after that, you totally get your life back, with the inconvenience of having to put on a prosthetic leg every day.  Folks who have been down this road can attest that the new prosthetics (after good fittings and a good relationship with a prosthetist) are a better alternative than continuing to hobble around on a painful, salvaged, cobbled-together biological limb.
 A couple of months ago I signed to have my medical records sent to three reputable, highly regarded surgeons (in Denver, Oklahoma, and Washington DC) for their impressions, and was given invaluable information which confirmed my hunch that it was time to get off the salvage train.   There are different schools-of-thought on this, and in my doggedly researching the subject, I've come to understand that many factors come into play with a surgeon's decision-making process.   In the end, it becomes a delicate in which the whole person / patient is taken into consideration in a trusted partnership, and the best possible outcomes are ascertained given all the realistic variables.   It involves careful listening on the part of both parties (doctor / patient), with the acknowledgment that while there are potential risks and benefits to any procedure, there is a shared goal of obtaining the best quality-of-life possible.  Unfortunately, in this era of specialization and sub-specialization, this "whole person" / systems-oriented approach is not easy to find, and we as patients are often left trying to put the pieces together (luckily I'm pretty educated....I worry for those who wouldn't know where to start or what questions to ask.)  It is the rare surgeon who is able to look at a situation objectively and who can admit to the limits of their specialization.  Surgeons love, LOVE to fix....and they're generally really good at it.  But like any highly focused endeavor, there is an art to knowing when to let go and trust that a new / different path may be a better option. 

So it's pretty cool when physicians have the multifaceted gift of being good at what they do while allowing a piece of their own humanity to shine through.  The ability to connect in a way which expresses empathy AND professionalism is a rare find, especially when looking for a surgeon who is at the top of their game.    I had the pleasure of speaking with not one, but two of these guys.  (This is the luxury we have nowadays, given easy access to technology and ease of information sharing.)

Enter surgeon # 1Dr. Wm Ertl at Oklahoma University Medical Center.   I wanted to get Dr. Ertl's medical impressions for several reasons:   1) He is a trauma surgeon and was trained at one of the most reputable hospitals in the country: the Hospital for Special Surgery in New York (known for dealing with complex orthopedic cases.)   2)  While Dr. Ertl is a trauma surgeon and understands poly-trauma, he also has worked extensively with the rehabilitative medicine community, and 3)  He comes from a family of surgeons who developed an amputation procedure which works synergistically with prosthetic componentry to maximize positive outcome.  This procedure (called the Ertl [osteomyoplastic] procedure...named after his grandfather who developed it) creates a bone-bridge between the tibia and fibula, creating the strongest possible load-bearing surface to fit well into a prosthetic...a pretty important issue!   In my digging, I found that not all amputations are created fact, lots of folks with traditional amps end up having problems which require revisions.   Dr. Ertl in OK is the guy many patients seek out to fix the less-than-optimal job done by their previous surgeons.     These were reasons I sent my records to him for review.  

Enter surgeon # 2:  Dr. David Hahn at the Limb Preservation Institute in Denver, CO.   Dr. Hahn came highly recommended by a prosthetist working in Denver, and I discovered that he had also done the BKA for another climber I got connected with.  He has an extensive history in treating the most complex orthopedic cases (mostly leg trauma), and has worked a lot with injured veterans in his tenure as an orthopedic specialist.   I felt Dr. Hahn's focus on limb-preservation / salvage would give me a balanced platform to weigh my options, being that I only have two of them (I wanted to exhaust all options.)   The fact that Dr. Hahn is out in Colorado....a community of highly active outdoorsy-types, is another reason I felt he'd understand my situation.   I am not, and do not intend to be a couch potato. 

I received phone calls from both of these docs around dinner time (after their typical "work hours"), a few of weeks apart.   Both were incredibly personable and honest, and both had an ease with which they discussed my medical situation.   Both Dr. Ertl and Dr. Hahn acknowledged the "end-stage" prognosis for my ankle, as well as the realization that amputation and ankle fusion were my only options......and that if I fused the joint, I would end up with an approximate two-inch limb-length discrepancy.    Both Dr. Ertl and Dr. Hahn also acknowledged the limitations that come with ankle fusion for maintaining an active lifestyle, as well as the known realization that future (sub-talar fusion) surgeries are a given.    Dr. Hahn went as far as admitting that mine "would not be an easy fact, it would be a rather difficult one, given the particular ankle pathology and destroyed joint surface. It would be tricky."  

I appreciated Dr. Hahn's rather folksy and genuine approach with me as he discussed his profession and treating others with these kinds of pathologies.  Here's an example: 

"When folks come to me, very often they're interested in saving their limb at all costs.....and I'm very happy to do that.   I love the challenge and working with people to see how I can help make that happen.   But many times, folks like yourself have been through so many surgeries already, and by the time they come to me they're just tired.  There is no guarantee that medical science can fix it either, although I do enjoy the challenge of trying.... 

I love working with Ilizarov Frames to see what we can do to lengthen and save limbs." (He actually shared that working with Ilizarov frames is kind of fun ...yes, fun.  As a layperson I think I'd liken the Ilizarov apparatus to a working grown-up / orthopod version of a human interactive, bone-moving, very sterile erector set.  But ah, I digress...) He continued..."While I love doing what I do, what is most important is that I help my patients gain the quality-of-life that they want.  Sometimes, that involves lengthening a limb.  Sometimes that involves fusing a limb.....and some folks are happy to maintain their biological limbs so walk down to get their cup of coffee, go to work and come home every day.  Others want a high activity level.   The techniques and procedures I've used sometimes work, but not always.  In the end it comes down to 'how long are you prepared to try certain things with no real guarantee of the outcome.'  Often the best functional alternative IS a BKA with a good prosthesis.  I have worked with lots of patients where this is the case, and they are very much like you....highly active folks with a can-do attitude.....I think that's what is important in the end.  The attitude."   

My conversation with Dr. Ertl was similar.....he was very personable, real, and professional. His opening comment regarding his medical impressions:  "Well, your ankle is basically destroyed."  (I appreciate frank honesty!).  Dr. Ertl took an hour and a half to talk with me through the lens of his specialty as a trauma surgeon.  In fact, he requested specifically that my pelvic images be sent (they did not make it in the packet), so as to better understand what we are dealing with in regard to my limb-length issue.  Outside of the obvious dedication I could sense from him in our phone conversation, four things impressed me:   1)  His ability to consider a "whole person" perspective (ie. the way my "limb" effects the rest of my skeletal body), 2) The ability to problem-solve creatively and collectively, enlisting the expertise of a physical medicine / rehab specialist and prosthetist, 3) The fact that he views amputation as the beginning of the rehabilitative process from an optimistic perspective (not "loss" but regaining a quality of life), and 4) He's an active guy who intuitively understands active people, which I obviously am.   When I got off the phone with him, I told my hubby:   I've got to have him do my surgery.  It just feels right...

Both Dr. Hahn and Dr. Ertl disucussed the psychological implications of limb-salvage experience, and both of them have seen people in high states of emotional distress due to the grinding nature of multiple surgeries, pain and less-than-optimal outcomes.  (I haven't heard back from the third surgeon yet, in Washington D.C., but will love to hear his impressions as well.) 

Determination, Moving Forward...

I guess I attribute my dogged determination to my experience of inheriting difficulties in two instances:   The culture of the Catholic upbringing I was raised in, and the dire circumstances with / through which we adopted our son.   It has taken many years to shed the belief that people are to be placed on pedestals, as priests and doctors often are.  In reality, I've learned that all folks are just human beings trying to do the best in their little corner of the world, and that gets messy sometimes.     That said, we only get one go-around in this life of ours, so we owe it to ourselves to be sure we make the best of our decisions (especially where they relate to our health, well-being and quality-of-life).

 I left no stone un-turned when I was faced with the reality of my son's complex medical, psychological, post-institutional issues....and eventually made the choice to have him seen by the best neuropsychologist in the country.   I have NEVER questioned that decision, and owe a lot the gratitude for my son's progress to that two-day-long appointment in Virginia four years ago, during which we gained appropriate diagnoses and a foundation for which to move forward optimally.  As I send him off to school to his neuro-typical first grade class, I know without question that our hard work has paid off. 

I guess I've had to apply that dogged determination to myself this time around.    I owe it to my kids and my family to be the best version of "wife" and "mom" that I can be, regardless of whether or not I've got all my limbs intact!

So....Oklahoma, here we come (It's not often we make our way to the flatlands!).  Not sure if we'll be feelin' the wind come sweepin' down the plain, and I don't think the wavin' wheat will be smellin' too sweet (they've had lots of snow), but I know I'll be making a new start to a new life as a "less than four" (Josh Sundquist's term for someone with limb-loss).

Am I scared?  Heck yeah.   But I'd be more fearful to lose any more precious years with my family  through enduring more "trial-and-error" procedures for this ankle that was destroyed two years ago.  It'll be hard....but I'm up to the challenge.    Bring it on.