You’ve done your homework, and you are ready for that all-important first appointment with your prosthetist. You are excited about the process and the end result, as well as a bit nervous. Hopefully, it is the beginning of a long and beautiful relationship! That being said, don’t be like me and go to it “like a deer in headlights” (direct quote from my first prosthetist!). I did NOT do any research; I didn’t even ask my AC mentor about it. I knew my prosthetist was going to cast my limb and build me a leg, but beyond that, nada. Shame on me!
I interviewed two prosthetists, one from FDR and one from Next Step (both in the Boston area) for this article, and although their years of experience differed greatly, they both had similar comments. Here are their thoughts and my commentary:
Before walking in the door, you should already have had a conversation with your insurance company about your DME (durable medical equipment) benefits. Make sure you know what percentage of your prosthesis you must pay for; the insurance standard is 20%. (But I have a friend whose insurance pays 100%!) Know that your residual limb will probably continue to shrink, and you may need a new socket within the first year. You should already know if the prosthetic company has a payment plan or not, and it’s also important to let your prosthetist know if you change your insurance during the process. Ducks in a row people, ducks in a row…
Speaking of process, know that you will not leave that first appointment with your prosthesis. There are many steps to getting the correct fit, whether it be an upper or lower limb. Your prosthetist should already have told you an approximate timeline for the casting, building, and fitting of your limb. Be prepared to go back to PT/OT to learn how to use your new prosthesis. If the socket is uncomfortable, you will need to have it adjusted, and very often, more than once. If you have lost a lower limb, you will need to learn to walk and balance again. There are often setbacks, you know, literally two steps forward, one step back. For me, it took three weeks of inpatient PT/OT to learn to walk with a walker; however, I know another lower limb amputee who was hiking six weeks after receiving his first prosthesis. Remember that you are a member of an elite club, and each club member is unique. Embrace the process.
The most important information you should bring with you is your GOALS. What is your reason for getting a prosthesis? Is it to be able to do your everyday routine, go to the store, pick up your baby or grandkids, mow the lawn, function at work? Are you the outdoor type who wants to go hiking, biking, swimming, skiing, motorcycling, etc., etc., etc.? Are you an athlete who wants to get back into your sport at the recreational, professional, or paralympic level? Is your job physically demanding, and if so, to what extent? What kind of function is necessary for your quality of life? Make a list and bring it with you. Your prosthetist will build your prosthesis based on your functional wants and needs. Be specific.
Along with your goals, go with a basic understanding of the components of a prosthesis: foot, ankle, pylon, socket, liner, outer liner, pin-lock system, suction system, hybrid system, and your K-level (lower limb loss), and the equivalent if you are upper limb loss. Your prosthetist will build your prosthesis using components and a system based on your goals (yes, I said it again!) and for lower limb loss, your K-Level. This goes for upper limb prostheses as well. You can find a list of components and their functions at the Amputee Coalition website.
A quick word about K-Levels for lower limb amputees (and I will write more about this later!) – you and your prosthetist should know what it is. The K-Level test measures your function at that moment and determines, especially, what kind of ankle/foot your insurance will pay for. If you start out as a K-1 (as many do), that’s what your insurance pays for. As you progress and become more stable with your walking and balance, your K-level number will increase (there are 4 levels). A higher K-Level will allow you to get a more advanced foot/ankle, and the K test is the proof your insurance requires so that all you pay is your DME portion.
We can be an impatient bunch! We think we can get a new lower limb and walk 5 miles the next day or have immediate functional upper limb ability…..Uhhh, no. You must break in your prosthesis, just as you would your favorite pair of shoes or gloves. It will take more work for you to reach your functional goals (you’ve already worked hard to get to this point), and a good prosthetist will be with you 100% of the way. Follow your prosthetist’s instructions. When you finally get home with it and something doesn’t seem right, call back. Remember that this is the beginning of a relationship, and without honesty, it won’t work; communication is the key.
Learn to advocate for yourself. Being uncomfortable (at first) and learning how to be “one with your prosthesis” is different from pain. Pain can cause problems that keep you from progressing. There is a difference. Remember that this is the beginning of a relationship, and without honesty, it won’t work. (Repeated from above for emphasis :-).
My first and second prostheses were both pin-lock systems with a corset that encompassed my entire thigh. They were named RHO and RHO2 (a very long story – I held a Facebook contest!), and at that point in my journey, they were the right fit for me. As I became stronger and more mobile, my new prosthetist decided that a suction system, without the corset, would be possible. I was ecstatic! I went through the process, got home with it, wore it waaay too long the first two days, then sat in my wheelchair for the next three. The first two weeks were discouraging, and I struggled, both physically and emotionally. Not having the upper corset for support completely changed how I had to walk. When I arrived at my two-week check-up, a fellow amputee was there. She told me it could take up to four months before my body adjusted to such a huge change. I actually found that encouraging, because she knew about which she spoke! Glad to say that with physical therapy, pool therapy, and home exercises, RHO3 was quite comfortable after two months. It was (and still is) hard work, as I literally had to learn to walk again from scratch.
So don’t be that “deer-in-the-headlights” who knew next to nothing. Arm yourself with the knowledge you need to be successful. Know there will be setbacks; be kind to yourself. Ask questions and make sure you understand the process. Set a long term goal, then break that goal into smaller, manageable goals. Re-assess if something doesn’t work. Become a partner with your prosthetist. Their livelihood depends on your success and achieving those goals, and achieving your goals will bring positivity, happiness, and joy; I am living proof.
And remember: you don’t know how much strength you have until you are called upon to use it.
P.S. Many people give their prosthesis a name!