Day 3, Day 4, Day 5

January 28, 2013   I checked with Dennis on Monday and he agreed that it was good to give my knee a rest for a day, then to try the Venture foot. After a full day with the Venture foot, my knee is sore but not quite as sore as it was after using the Echelon foot. One additional suggestion that Dennis made was to try using the test socket and feet for a limited number of hours instead of for a full day.

Because of the difference in the length of the prosthesis with the Echelon vs. the Venture foot, we have played with foam shoe inserts to raise or lower my height as needed. The Echelon foot makes the prosthesis longer, so we take the inserts out of my right sneaker for that foot. With the Venture foot, we put the inserts back into the right shoe to allow for the shorter height.


January 29, 2013   On Tuesday, my knee is still too sore to wear the new socket so I will use my old prosthesis. The discomfort I have in my knee from the new socket is a posterior knee pain which mainly occurs on initial contact of my heel during gait. On Tuesday evening, I decide that I will start out Wednesday with my old prosthesis again and wear the new socket later in the day as Dennis suggested, trying to build up wearing time more gradually.


January 30, 2013   After a full day's activities of household duties, cooking, cleaning and homeschool, I notice that my knee and leg are feeling really good in the old prosthesis. I'm going to try out the new socket now. I put on the new socket with the Venture foot at about 5 o'clock and immediately notice that my gait is not as comfortable. Duane notices right away as well. Hmmmm. It feels like my right leg is too long. I do not have any inserts in my shoes at the moment. That is puzzling. All right, I try putting the foam insert into my LEFT shoe. Wow, that feels a lot better! Wearing the new socket with the Venture foot for the remainder of the evening feels pretty good. I think I'll try this again in the morning. Another point for the Venture foot.

...Now for the Hard Part

January 27, 2013  Or, "The Honeymoon is Over." And honestly, I mean that in the best way. It is actually a pretty good analogy. After the honeymoon there is the hard work of marriage; learning to communicate well, to build one another up, to serve, talking about common goals and arriving at them together, learning what works and what doesn't work; sometimes there is pain, sometimes there is joy. It requires patience, diligence and faith.

Not unlike bringing a test socket from the trial phase to the final phase. This is the hard part. Each new prosthesis I have ever had made requires adjustments, testing, discomfort, adjustments, testing, ....until finally it is right. And every time, they get it right. But it requires patience on my part to persevere when there is discomfort, diligence to communicate the problem, and faith that we will get it right in the end. Communication is crucial. I have to be able to communicate well to my practitioner what I am feeling in the socket, at my knee, at my ankle, walking on the different surfaces.

I used the Echelon foot for several hours on Friday after my appointment and then all day on Saturday. My knee joint was very sore when I took off the prosthesis Saturday night. Usually, if my knee is sore at night it feels better after resting through the night. It was more painful Sunday morning. My husband Duane and I decided that it would be better for me to use the old prosthesis for a day, then apply the Venture foot to the new prosthesis to try on Monday. That will give me a fair comparison after using the Venture foot all day. If my knee is comparatively sore with the Venture foot, then there may be an alignment adjustment needed. Either way, I'll call Dennis Monday for suggestions and to see if he agrees with our assessment. I have no discomfort at all resulting from pressure or friction, so that is really great news. In the past, that has always been a problem when trying out a new prosthesis. At the end of the day on Sunday, my knee feels fine again, so we need to do some detective work to determine the cause of the knee pain.

Chronicle of a Prosthetic Limb....PART FIVE

January 25, 2013  Today I was able to test out the Echelon foot. At the time we arrived for our appointment, snow began to fall in Baltimore, which is an infrequent occurrence. When I stood up on the Echelon foot, Dennis made a couple of adjustments to align the foot properly, then I walked up and down the hall. Ambulating on this foot has a different feel because of the hydraulics. On a level surface,  it feels like I am walking over a hump with my right foot. This foot has more adjustment possibilities than the Venture foot that I tried on Wednesday. The stiffness of the plantarflexion and dorsiflexion (pointing and flexing of the foot) can be adjusted. Mine needed some adjustment, so after this was done, my gait was a bit smoother. I tried taking a spin outside on a set of stairs. Great! Step over step with no problem, just like when I was 25. Functionally, it's feeling much like the Venture foot did on Wednesday. It is snowing, but I've got this four-wheel-drive set of wheels, so I try out a steeper grassy incline. Wow! This is where the Echelon foot really shines! When I take a step down the hill, the foot plantar flexes along the incline taking all of the impact instead of my knee. It is awesome! I can descend the hill so easily. With my Seattle foot, descending hills is a painful chore and I try to avoid it whenever possible because my knee takes all of the impact and results in my hobbling about for the remainder of that day. With this Echelon foot on, I feel like taking a jog around the parking lot.

The top video shows me using the Venture foot on the hill.

The bottom video shows me using the Echelon foot on the same hill.

Back inside, we replace the Echelon foot with the Venture foot so I can make an apples-to-apples comparison on the same stairs and hill. With the Venture foot back on, one thing I notice is that on level surfaces this foot feels more natural - it does not have the extra roll that I noticed with the Echelon foot. On the stairs, the function is great and comparable to the Echelon. On the grassy incline, I do notice a bit more stress on my knee with the Venture foot than the Echelon foot. The hydraulics of the Echelon foot are outstanding on the incline surface. I also notice that I can balance on my right foot alone with the Echelon foot. That is a first. I've never been able to do that.

So, my assignment for the next two weeks is to take both of the feet home and test drive each of them. Then, I have to make a decision about which one I want to keep. I will have to weigh the pros and cons of each. This is what I have so far:

Venture Foot:
Pros:
-natural gait on level surfaces
-ease on stairs and inclines
-with shell on, the foot is narrower, allowing more shoes to fit :)
-height more accurate, allowing comfortable gait with all shoes
Cons:
-steeper inclines less comfortable

Echelon Foot:
Pros:
-ease on stairs and inclines
-outstanding on steeper inclines and uneven surfaces
Cons:
-extra "roll" in gait on level surfaces
-wider foot may not fit into my shoes
-extra height requires removal of inner shoe linings (ideal for athletic shoes)

So there you have it. I'll be trying these out and may have some more pros and cons to add to the list before my two weeks are up.

Chronicle of a Prosthetic Limb....PART FOUR

January 23, 2013  Today Dennis had the Venture foot attached to the test socket along with the adjustment jig. He also brought along my Echelon foot and when he held it up to the socket, I was able to see just how close it is going to be to fit it onto the base of the socket.

Venture foot with adjustment jig

In the picture on the right, you can see that the top of the ankle unit on the Echelon foot (in front) comes just to the base of the socket.

Today, I am walking with the Venture foot. When we have the liner, stocking and socket applied, first I try just standing to see how the height feels. It is pretty close, just a bit long on the prosthetic side which throws me a little to my left. Dennis makes a quick adjustment. The liner feels very comfortable even at the distal end, which has typically given me problems when trying out a new prosthesis. I'm feeling no discomfort distally or at my knee.

Making an adjustment

Walking feels really awesome! With the motion at the ankle, my steps are very smooth. My current Seattle foot causes my knee to be thrust forward with each step, giving me a clunky gait. The "clunk" I feel at each step is transferred to my knee, causing banging and friction which over the miles and the years is tearing up my knee. Walking with this new foot, I'm starting to think about some things I've been wishing I could do with the kids.....OK, but let's not get too far ahead of the horse. Let's try a hill. They happen to have a pretty good hill outside the office and when I give that a try it's amazing. Walking on a significant incline really feels no different than walking on a level surface. Normally I limp down hills, sometimes even turning to descend sideways in order to avoid pain. With this foot, I can descend with an even gait, going forward step over step and then ascend again the same way. I am noticing a little fatigue in my right quadriceps (thigh) muscles, but that is good, because I know that means my right leg is working along with my left. I also try walking in the grass to see how an uneven surface feels. No problem. The motion is occurring in the ankle, so my knee is happy.

Old prosthesis with Seattle foot

New test socket with Venture foot

Because of my particular birth defect, I have quite a lot of valgus at my knee, which is basically my right knee "bending" in toward my left knee. That's just the way my knee is, so we have to work around that. When Dennis adjusts the jig, he is able to compensate a bit for the valgus in my knee. So, with the adjustments made, he will take the Venture foot off and before my next appointment he will apply the Echelon foot. I will get to try it out on Friday. As good as the Venture foot felt today, I can't wait to try the Echelon foot to see how the hydraulics will improve my gait. I'm very excited! I do not remember ever having the first weight-bearing fitting go so well as it did today. When I try out the prosthesis on Friday, I will be bringing it home to use for a week or so to see how it works under stress.

Chronicle of a Prosthetic Limb....PART THREE

Wednesday, January 16, 2013    Today was my test socket fitting. This is what was fabricated from the fiberglass cast that was taken at my last appointment. I explained to my CPO that I am writing on my blog about this whole process and asked if he objected to my naming him and his business as I write. He doesn't mind. So my CPO is now Dennis (he is Dennis Haun of Metro Prosthetics in Landover). The test socket is a hard opaque plastic. To fit this, there are a few steps. First, lotion is applied to my limb which allows the gel liner (from the last visit) to slide on; next, a thin nylon sock goes over the liner so the socket will slide on; finally, the new test socket is applied. It all feels comfortable so far.

Gel liner applied

Test socket

Nylon sock

My Venture Foot

Dennis makes a few adjustments to the socket to make the fit conform better to my bony knee. He places a dense foam block under the end of my limb so that I am able to bear weight and he checks the alignment of my pelvis to see where it feels level to me. When he measures the distance from the end of my limb to the floor, the measurement is 4 5/8." I need 4 3/8" to be able to use the Echelon foot, so it's looking good for that right now. He explains a couple of things. At my next appointment, I will do some walking and he will do some adjusting. The adjustments happen using a jig which adjusts forward/back and left/right. In order for the jig to be used on the test socket, extra space is required, so for the alignment adjustments, I will be using the Venture foot. When the alignment jig comes off and the final prosthesis is fabricated, the Echelon foot will go on. So, I'll have a chance to try out both feet.

Heating the plastic

Molding the top of the socket

About the gel liner; this is made of really cool stuff ( I know, so technical but it is really cool). Dennis explained that it is urethane and the man who designed this liner is an amputee and also a prosthetist. He found a material that simulates the fat pad under your calcaneus (heel bone), which acts as a shock absorber with each step you take. This urethane material distributes pressure in a similar manner, thus reducing or eliminating pressure sores on the skin (which is a big problem for my knee).

My next appointment is in one week when I will be able to try out the test socket with the foot, do some walking and see how it all works in action.

The kids entertaining themselves with their Legos

Me with Test Socket

Chronicle of a Prosthetic Limb.....PART TWO

My initial prosthetic consultation was with a prosthetist who is new to me, recommended by my orthopedic specialist. So here we are, me, my husband Duane and two of our kids. I really love having Duane come along with me to these important appointments, because he is a better advocate for me than I am for myself and because we each catch different things. During and after the appointment, we mull over what is being discussed and usually end up with a more complete picture, and make better decisions as a result. The prosthetist is a very energetic, positive, friendly man. I like him. He's personable, a good listener. My current prosthesis is a dinosaur. It's one piece, with a Seattle foot, which is....functional, but that's about it. I am an active person and I need to keep up with four children ages 4 to 11. My main reason for my initial consultation was to relieve the pain I have had on my knee due to pressure and friction.

Echelon Foot

Right away, after looking at my current prosthesis, the CPO (prosthetist) is sure that he can fabricate a new prosthesis for me that will allow me to be pain-free and more fully functional. He recommends a socket that utilizes a gel liner (no more socks) and is suspended with a gel-lined knee sleeve; he wants to try to use the Echelon foot, which has a multi-axis ankle joint with hydraulics to aid with hill ascension/descension and stairs and is more comfortable for walking on uneven surfaces. So, I am feeling very excited. If I can do all of those things without pain, I will be a happy lady! He tells me he will have me running! I'm thinking, "I just want to to walk without pain." He casts me for the gel liner using conventional plaster. I have memories of claustrophobia feelings when one of those casts gets stuck, he used cellophane before applying the plaster, and when the plaster was dry, it slipped off with no problem.                                                        

        

My amputation is called a Syme amputation which basically separates the ankle from the tibia (I do not have a fibula). For me, this leaves a long residual limb and a limited amount of clearance between the end of my stump and the floor, into which space the prosthetic foot and its mechanics must fit. It's going to be tight, so my CPO will research this and let me know what he finds on the next visit.

One last important part of this visit was a temporary fix for the pain I am experiencing with my current prosthesis. For this, the CPO applied a gel-lined knee sleeve over my prosthesis. I was amazed at the immediate relief I felt as a result. When I went to bed that night, I was amazed at how light my leg felt right up until I removed the prosthesis for the night. We left that day with great hopes for this new prosthetic limb to help me with removing pain and increasing function.

My next appointment was one month later because I could not make it in over the Christmas holiday what with our having company in and out over a three week period. During that month, however I have a couple of anecdotes to share. First, I developed a pretty severe rash on the skin above the knee sleeve, red, extremely itchy and raised. I thought I must be allergic to the sleeve material. I called my CPO. He said that it is quite unusual to have an allergic reaction to the sleeve, and to try washing it with mild soap and water. As a long-time amputee and prosthetic user, I have learned that I am very skeptical. I do not like new things. But right now, the thing I have is not working. So, I have to fight the urge to argue. I try washing the sleeve, knowing that this was an allergic reaction and washing it is not going to help. So this is step one towards trusting what the CPO tells me. After washing the sleeve, I have had no more problems. I figured out a couple of days later that sometime during the night, our cat would come into our room and rub up against my prosthesis as it was leaning on my night stand. So, of course that was causing the allergic reaction and when I washed the cat dander off.....no more problems! My second lesson was learned when I called the CPO about two new pressure sores on my knee. He told me to try cutting the top and bottom off one of my 3-ply socks and wearing that between the sock layers to build up the center a bit more. That should relieve my knee. Not quite so skeptical this time, when I gave it a try, it worked like a charm! Trust in your health care professional is very important and mine just earned huge points with this stubborn, doubting old amputee.

Venture Foot

At the second appointment, the CPO revealed the fabricated gel liner. We applied that to my limb and he used a fiberglass plaster to make a cast over the top of the liner. That will be used to fabricate the socket, which will be fitted at my next visit. He also shared that the Echelon foot would not have enough clearance with my limb and we would have to go with the Venture foot. This foot has multi-axis motion, but no hydraulics. Still a big improvement over what I have currently. Post Script.....after further measurements are taken, we are going to give the Echelon a try first. It will be close, but it just may work. Here's hoping! I sure was looking forward to taking those hills and stairs with some hydraulics in my ankle! And did I mention that I can also wear different heel heights? Right now, my shoes all have to have exactly a 5/8-inch heel height to accommodate the foot. Hmmmm. This new foot may feed my shoe fetish. Well, at 5 foot nothing, I could use a bit of a lift at the heel. Next installment....the socket fitting.      

A Long-Time Amputee's Chronicle of Acquiring a New Prosthetic Limb PART ONE

2 years old; that's Beth on right

 I am 49 years old and have been a below-the-knee amputee for 38 years as the result of a birth defect called Fibular Hemimelia. There are a variety of results of my particular birth defect, and in my case the result is a completely absent right fibula (the bone you feel on the outside of your ankle and lower leg) and also some absent metatarsals and phalanges (basically toe bones). So, after many surgeries in my first 10 years of life, my parents and doctors agreed that a below-the-knee amputation would give me the best function. At the time, I was an 11 year old girl who had been wearing a double-upright metal leg brace with one choice of a shoe all of her life. So what did I want to know? How much it would hurt? How long until I could walk? Uh....no. My question for the doctor was, "Will I be able to wear Frye boots?" Seriously, I have a shoe fetish to this day.

Newspaper clipping 7-ish years old

On November 20, 1974, my life as an amputee began. I have to say that being an amputee has never been the thing that defines me. Most of the time I don't think about it. During my teen years, I struggled more with self-image and the desire to be like everyone else, but that changes later, as you will see. Being an amputee is part of who I am, but not what makes me who I am. For that, I give huge credit to my very awesome parents. I am the second of six children and they encouraged me to try anything I felt inclined to try. Let me just add that during my 8th grade and freshman years, both my older sister Beth and I wore Boston braces for scoliosis. These were worn 23 hours a day for 2 years to stop the progression of a lateral spinal curvature. Oh, yes, and there were braces on my teeth as well. So, needless to say, without the unfailing support and encouragement from my parents, I would have been a very maladjusted teen indeed! Instead, I played varsity field hockey, participated in school theater, school government, worked as a day camp counselor for kids with special needs, got my driver's license and did well enough in school that I was accepted into the Physical Therapy program at Boston University (I adored my PT, Penny, and knew I wanted to be a PT).  My childhood home is in Brattleboro, Vermont only a Greyhound ride away from BU. I received my B.S. in Physical Therapy in 1985. 

I have fond memories of my first job, at National Rehabilitation Hospital in Washington, DC. I was hired before the hospital was opened; it was exciting to be part of the foundation. I am so grateful that the Lord brought me to NRH. It was there that I met those friends who told me about Jesus. My life was radically changed, and it's here that I realized that God made me, He had a plan for me ALL ALONG and part of that was the birth defect that truly has been a gift, pushing me to be what I would not have otherwise been. 

I had relocated to Washington, DC from Vermont, so I was frequently asked if I was a (downhill) skier and I would have to reply in the negative, no I had never learned to ski because I did not know that I could! So, after being repeatedly asked, I decided to become a skier. I joined a learn-to-ski trip for handicapped athletes and learned to ski using outriggers and a single ski. My knee has always had a degree of instability due to the missing fibula and ligaments which would normally attach to it, so that I could not ski using my right leg. I loved it! And what a thrill to witness so many differently-abled folks learn to ski that weekend. It was very inspiring!

In 1987, I met my husband Duane. He proposed on a ski trip to Mount Snow, Vermont. We were married in 1989. We had our first 2 children in the early 1990's and I worked as a PT until 2000, when we became convicted that I needed to be at home for our family's sake. Subsequently, 4 more children came along, 3 of them were born after my 40th birthday. Pregnancy as a twenty-something was wonderful; I loved every minute of the first eight months. My knee never felt better and I experienced no problems at all with my prosthesis fit. Pregnancy as a forty-something is a whole different experience. While I had no problems related to my prosthesis or even to my knee, each pregnancy was harder than the last, but the blessing of a sweet new life at the conclusion made me glad to bear the difficulty. So here I am, our 2 eldest young men are in their early twenties, our 4 younger children are home with me and I have the distinct honor of being their mom and their teacher. Now you know who I am and my journey thus far.

Jersey Shore Vacation 2005

Our six children

Kite Flying at the Park 2006

Expecting # 6  2008

Strolling Around the National Zoo 2009

Camping Trip 2011

Baby Smiles

Since the birth of our last son in 2008, my knee has never completely regained its former function and has been the source of an increasing amount of pain. I generally just live with some amount of pain, but until more recently, nothing that has been sustained.
Over the past year, the pain has intensified and
has affected my function. I found myself declining walks around the block with the kids and dreading trips to the wholesale warehouse because of the concrete floors. By the end of most days, I was hobbling badly. Stairs were taken one-at-a-time. Exercise routines that I had performed for years were torture. Most of the time I just skipped it. Finally, I consulted a specialist (how I found her is another story). She saw that the fit of my prosthesis was quite inadequate (we get bonier as we age and lose muscle) and immediately referred me to a prosthetist with whom she likes to work. I have had a new prosthesis about every 7 years as an adult and I thought it would be fun to chronicle the process. My current prosthesis is only 4 years old, but it no longer works for me, so it is time for some new wheels, or wheel as it were!