Right after my last entry, I felt very convinced that the tibiocalcaneal surgery (explained in my August 9th entry) was the way to go. Yes, it sounded miserable, but at least I would end up with my own foot. Truly--in the last year and a half, I had had so many things attached to my foot, and had used so many gadgets to move my body from place to place—another year and a half was not going to be that bad. Easy schmeazy.
So, I went in to see Dr. Hutson to get some more information and get myself scheduled for surgery. Well, I sat with him and started going down my list of questions. Yes, not only would I be in the external fixator for 9-12 months, but also I would need to be in a cast, followed by a boot, followed by a brace for about another 12 months. He thought it would be at least 2 years before I could walk on my own. He was quite sure that my ability to walk would be fairly limited. He said that for the purposes of getting around my classroom or my house, I would be able to function. However, for example, when facing the need to get to the paint section of Home Depot, I might want to opt for the electric scooter rather than shuffle slowly to the back of the store (Hmmm . . .). Yes, my foot would become very arthritic, but we could deal with that when it happened. He said that he developed this surgery as a way to “salvage” the foot for those who found amputation unacceptable and/or came from cultures that typically ostracized those with obvious disabilities. In fact, of the 13 people he had operated on in the last 25 years, only three were from the U.S. Yes, he could probably get their phone numbers so I could talk to them about their “quality of life.” Again—whether going with the surgery or an amputation—I was going to have to make modifications to my lifestyle. However, with the surgery, you still get to go to the bathroom in the middle of the night without having to put on your leg.
OK—not quite the rosy presentation I was looking for but it still seemed like “right” thing to do. I went out and set up another appointment to sign the papers for the surgery but I would have to wait two weeks.
The next day I called Dr. Hutson’s office to get the phone numbers of prior patients. Sorry, his assistant was on vacation. Call in two days.
I called good ol' Dr. Carbonell to ask him about “quality of life” with the surgery option. No—he didn’t know anyone who had ever had the surgery. Yes--he agreed that I would definitely need to wear a brace for a long time—if not life-long. Also—fast walking was not going to happen. But he felt like my calcaneus and tibia “wanted” to heal and that the surgery could be successful. He explained that I could always opt for an amputation if I wasn’t happy with the results of the surgery.
I was determined to find a living human being who had had this surgery. I found one lady on my fusion support site that said that she had had the surgery two years ago and “she was able to walk a little bit more every day.” She said she really wasn’t sure about the success of the surgery because she suffered from other injuries (sustained during a car crash) that complicated her ability to walk.
I spoke to another man who said that he had had the surgery following a motorcycle accident. He said that he was a construction worker and desperately needed to get back to work following his recovery so he opted not to have his leg lengthened and decided to skip physical therapy. As a result, he could only walk by putting his foot out sideways (since the ankle does not bend). Although he walks with a very noticeable limp, he was thrilled that he could work at his construction job without using a prosthetic.
I started scouring the medical articles written about the surgery. Truly, if there is a contest somewhere for who can type the words “tibiocalcaneal arthrodesis with tibial lengthening using the Ilizarov frame” the fastest—I know I will win. Since I don’t belong to a medical school, I had access to the abstracts of many of the studies written on the subject—but not the actual full articles. Therefore, I had to pay about $20 for any one article. About $100 later, here’s what I learned: there are only a handful of people around the world who have had this surgery. Most have complications during the two-year process (infection/need to take more bone from another part of the body/non-union); however, most eventually had a successful fusion. All of the articles ended with some sort of conclusion saying that the patients were usually 80-85% satisfied with the outcome of the surgery.
But what did that mean? They were satisfied it was over? Satisfied that they could walk? If so—how fast? How far? How long? Inquiring minds wanted to know . . .
Meanwhile, I was stalking this assistant at Dr. Hutson’s office for phone numbers. After a few days of looking through files to even find the numbers, the doctor’s office needed to call the former patients to ask permission for me to contact them. A week later, the assistant assured me that messages had been left for all three former patients and that Hutson’s office would let me know when--and if--any would call back.
About this time, I was really feeling down. I kept trying to make a decision—but I really didn’t have the information necessary to make one. I felt very sure that the surgery was the “responsible” thing to do. It seemed reasonable that I should try it out, and then if I didn’t like the results—I could have the amputation then.
As the girls began talking to people about our options, we started getting some very negative responses. One day I took the girls to the pediatrician and the nurse asked the girls how their Mom’s foot got hurt. Elise went right into “information-sharing” mode and pretty much caught the lady up to speed in about 3 sentences. The minute the subject of amputation came up, the nurse said, “Oh girls—don’t let your Mom get an amputation. You don’t want her to limp at your wedding, do you?” As she kept talking, I managed to mutter something like, “Well, it seems like the prosthetics available now are pretty amazing . . .” To which she said, “But why would you do that when you can have your own foot?” And then again to the girls with, “You don’t want your Mom to limp everywhere she goes, do you?”
Good grief. Even though I knew this woman had no business talking to my kids like this, AND was obviously ignorant about my situation—I had such a feeling of guilt/shame about considering an amputation that I really felt like she was somewhat justified in showing her disgust.
Not that I was running around asking everyone what I should do—but it did seem that when people heard my options, they didn’t need to hear much to say that I should opt for the surgery. It got to the point that I felt I could say, “Well, they can take my foot, surgically attach it to my head, and within two years of physical therapy I could walk by hopping on my head . . . OR . . . I could have an amputation.” and the person listening would most likely say, “Oh, by all means—definitely have the surgery. At least then you will have your own foot.”
I started to feel the pressure of being judged for whatever I decided. Would people think I that I had made a rash decision if I went with the amputation? Would they always whisper that I hadn’t tried hard enough, or been patient enough to go through the process required for the surgery?
About this time, I decided that I was going to stop trying to make a decision. Rather, I was just going to research every option, suggestions, idea—whatever might lead me in the right direction. When people would say, “Oh, we have a friend who had the same problem as you . . .” I would get the phone number of the friend and call them—usually to find out that their problem was VERY different than mine. If someone gave me the name of an amputee, I would call and listen with an open mind. The burden I felt trying to MAKE a decision was lifted when I just allowed myself to research, listen, and let the decision come to me.
Talking with amputees was very interesting. Truly—you could not get these people off the phone. They were SO HAPPY to have their lives back. They all had very interesting and sad stories to explain how they lost their leg; however, all of them sounded the same when they spoke of the freedom, joy, and “new lease on life”-feeling that they had since adjusting to life with a prosthetic. Yes—going through the process of an amputation, stump-reduction, nerve-pain management, prosthetic fitting, etc. was difficult—but the quality of life that they gained as a result was worth the struggle.
When I heard these people speak, it became obvious to me that the general public did not understand how the life of an amputee was not this pathetic idea of a woman “limping” at her daughter’s wedding. However, I didn’t want to choose the amputation simply because it was the quicker way to get up and going again.
So—I started doing more research on the surgery.
I went back to the articles I had read and noticed that some of the doctors who had written the articles had their email addresses attached to the document. Ah hah! That night, I wrote to five prominent doctors and told them of my story, my predicament, and my search for information regarding “quality of life” issues. By the next day, two of the doctors had written me back! One summed things up for me by saying, “There is no question that you experienced a severe and devastating injury. Patients who undergo tibiocalcaneal fusions do not have a normal gait. The single most important outcome from surgery is pain relief. Below knee amputation can be a very good operation with a much shorter recovery. Fusion patients are satisfied about 85% of the time, but recognize they are not normal. If you look at AOFAS scores that range from zero (the worst) to 100 (normal person), fusion patients score about 55-60. Preop they are usually 15-20. It is a difficult decision to make.”
I wrote him back with a few questions. He responded with some polite answers with regard to the surgery, but ended by saying, “I think that with a contemporary prosthesis, you probably have a better chance of resuming normal activities.”
Just a few days before emailing the doctors, I felt so strongly that the surgery was the only responsible option. I think in my gut I felt that the pain I would endure by having the surgery would be a more “noble” suffering because I had chosen to do the “right” thing. However, if I chose to have an amputation and I had complications or experienced bad phantom pain—I better shut up about it because I was the one who “CHOSE” to do this to myself.
After getting insight about the surgery from someone who was highly knowledgeable about the subject, I felt the guilt of making a bad decision lift—and allowed myself to start considering both options in a positive light.
The next day, a Mom from our school called me to tell me about a friend who had had an amputation last November. I called her friend—Susan—and we started sharing our war stories of infection, wound vacs, picc lines—the whole thing. After about an hour on the phone, she said, “Why don’t you just come over and you can see how the prosthetic works and what it all looks like.” Wonderful! The girls and I got in the car and went straight to her house. She was amazing. There she was--walking barefoot through her home, navigating stairs, moving around her kitchen with ease—all with a prosthetic leg. The girls began sharing our story and she reciprocated with similar stories of her own. She asked the girls if they would like to see how the prosthetic was attached to her body. They eagerly said yes. Two silicone liners, a prosthetic leg, and a shiny human stump later—we were suddenly wrapping our brains around the reality of a lower-leg amputation. They were fascinated and amazed. She explained her routines for showering, and her method for getting in and out of the pool—but other than that—couldn’t say more about how happy she was to be able to function normally. While we were there, her daughter (aged 10) came home and talked with the girls. She was so proud of her Mom. She told Annika and Elise that if they ever felt sad about what was happening to their Mom, they should just give her a call. So sweet.
Driving home from Susan’s house Annika said, “Well, Mom. This is a no-brainer. You should definitely have an amputation.” Elise chimed in from the back seat, “Finally people are starting to see things my way! I said we should chop it off from the very beginning!”
Later, Annika caught me sitting on my bed with my head down. She said, “Mom are your feeling sad?” When I said yes, she said, “Mom, a year from now you are going to laugh. You are going to LAUGH that you even gave amputation a second thought. You are going to be just fine.”
I couldn’t believe it. Annika was always the one that wanted to be cautious and try the surgery first. But after meeting Susan, she could see things so clearly.
At this point, I was intrigued and encouraged—but not convinced. So I decided to start meeting some prosthetists. Long story short—I met with four prosthetists around town (my Mom, Annika, or Lisa even came along for the ride sometimes) and came away with basically the same information. 1) The fact that I have a knee makes all the difference. The function that you can have with a BK (below knee) prosthetic is almost 95% of a normal foot. The inside of the foot is made of carbon-fiber components and then covered with a plastic foot. 2) Although they work great, the legs are not cute. Not even a little. They look very plastic and fake. We would have to work on that. 3) A few months following the amputation, I would be fitted with a temporary leg that I would wear for about 5-6 months while the stump reduces to its final size. This leg would not have a cosmetic cover over the inner workings of the leg so it would look like a fake foot--attached to a pipe--attached to a big socket that would fit onto me. Once the stump is “matured” I would get a leg with all the bells and whistles—a high-functioning foot, axis ankle, cosmetic cover, split toe for sandals, and (if I like) a foot that will adjust to different heel heights. Pretty slick but still not cute.
Very interesting that each of these guys had some very similar personality traits: nurturing, caring, technical, artistic, practical, and “this is not a problem”-view of life. Every time I had another appointment, I would come back telling Doug that I had fallen in love with another prosthetist. They just make you feel very much like they are going to see you through this tough time—and insurance will pay for it. A guy who acts as your personal mental health therapist AND makes legs—what a combo. Who wouldn’t fall in love with that?
I looked into our health insurance and found that my insurance would pay for the first temporary leg and then the final leg. They would also cover to repair and/or replace prosthetics from normal wear and tear. The prosthetists I met with said that this means that you get a new leg about once every three years. I would really want to be able to have a cosmetic leg for every day wear, and then a leg that I could use when I was doing rougher stuff like woodworking, painting, gardening—or during a particularly messy week of projects at school. I would also want to get a water leg for days at the beach, swimming, etc. The prosthetists said that I might be able to convert my temporary leg into my second “beat up” leg for a couple thousand dollars. The water leg would not be covered by insurance and would cost about $5-8 thousand dollars. I thought I could maybe do a couple rounds of summer camp to finance my new water leg!
As I inched closer to thinking that amputation might be a decent idea, I would find myself quickly clinging back to the surgery option. I had to continually tell myself, “You haven’t cut your leg off yet—you are just exploring options. Chill.”
But as time went on, the panic I felt about making a decision started to subside and I started to feel real peace. I kept thinking that God would send me a big sign letting me know what to do. The harder I looked, the less I saw any sign of anything. But when I allowed myself to just openly explore, explore, explore and follow every lead that came my way, God actually led me to my final destination:
Amputation.
Never saw that coming.
There are so many pieces to this final puzzle that I didn’t go into detail to explain . . .
-All the calls to friends of friends, who had personal experiences with amputation or reconstructive ankle surgery,
-Finding my girls sitting on the couch happily looking through a prosthetics catalog,
-Meeting a physical therapist at a volleyball game who had experience with both BK amputees and patients recovering from ankle reconstruction surgeries (“Oh yea, your functioning would be much better with an amputation . . .”),
-Hearing the stories of people who personally know amputees who swim, run, walk—“and you would never know. . .”
-Discussing the phantom pain medications available with a middle school boy who lost part of his hand this summer during a boating accident,
-Marveling at the amazing abilities of a little girl in my Art class who was born without her lower arm,
-Sensing the deep desire of my family to put all this behind us and move forward in faith,
-All the friends and co-workers who made sure that I was seeing the best people in town,
-The faithful people who have also experienced ankle trauma (my ankle fusion support group friends, Sarah, Susan, and many others) and have given me lots of advice and resources,
-Being able to process the gazillions of thoughts and emotions that went through my head with friends, teachers and parents from school, and people at our church,
-The honest and straightforward emotional input from my girls, my parents, and Lisa (my friend and assistant at school),
-And all the late night talks with my dear, faithful husband--Doug.
Truly—this has been a journey. I know that it will not be easy. However, I am so completely confident that amputation is the right thing for us to do. We are not the first people to go through this and we will not be the last. God has been so faithful—He will not leave us. He is so good.
If you are still awake after reading all of this--bless you.
Love to you all!
Anne
There have been so many times in my life when I have been at a loss for words (shocking--but true). Standing in front of a Mom who has a son in the hospital with cancer, or a young girl who is sad about her parents' upcoming divorce--I can listen and sympathize--but I really can't fully understand what they are going through because I have never experienced those things myself. 
