If you’re reading this, there’s a chance that you just became an amputee or that you’re about to become an amputee. Like you, I was in your same position about 2 years before writing this post. For some of us, we have a slight heads up that you’ll be losing a limb and for others it’s immediate. In my case I had about 7 days between making the decision and having my leg amputated.
In this post I’m going to outline some of the basic things you need to know and then I’ll make some follow up posts providing more information.
There’s going to be a ton of new terminology coming your way, mostly in the form of acronyms. Here’s a quick list of the most common:
Below the knee (BK) – an amputation that occurs below the knee.
Above the knee (AK) – an amputation that occurs above the knee.
Bilateral – having both limbs amputated.
You might see someone reference which leg was amputated, such as RBKA (right below knee amputation) or LAKA (left above knee amputation).
Stump or Residual Limb – the remaining part of the leg or arm after the amputation.
Phantom pain/sensations – a feeling that occurs in your residual limb that feels like you still have a limb. This is often a tingling feeling that can vary in intensity.
Prosthetic/Prosthesis – the device (fake leg or arm) that attaches to the amputated limb.
Prosthetist – the clinician that works with an amputee to build a prosthetic limb.
Socket – the part of the prosthesis that connects to the limb.
Foot – the part of the prosthesis that connects to the socket that acts as a foot.
Liner – a sleeve that you wear on the residual limb that will be used to connect to the socket.
Socks – think layers of material that you wear on the residual limb to increase the thickness of your residual limb.
Shrinker – a sock that you wear on your residual limb to shrink the leg down to natural size.
What to expect right after the amputation
Post-amputation the two main concerns that you’re going to have are pain management and wound care. The degree to each will largely depend on why the amputation occurred. In addition to bandages, you will likely be wearing a brace to avoid any harm to the residual limb.
You’ll likely feel a series of emotions. It’s tough to realize that you have lost one or more limbs. The good news is that life continues on and your quality of life will largely depend on your attitude about life. This is not the time to feel sorry for yourself. That won’t do you any good. It’s now time to look forward and determine how you can have the best quality of life possible. It will take some work, but you can do it.
It’s easy to get complacent when you’re in the hospital. Start setting goals for yourself, like when you want to be able to walk again. For example, my care team told me it could take 6 months to get back to walking. My leg was amputated in March and I made a goal of walking my daughter to school before her school year ended in June and I accomplished that! Goals like this help you to keep things in perspective and to move in the direction that you need to go. (I’ll write more about this in another post.)
As with any medical care, you need to be your own advocate. This is not the time to have pride or be embarrassed about what your body is telling you. Be direct and honest with your care providers and if you don’t feel if they are listening to you, feel free to escalate the issue in a respectful way. They are there to help you and are working for you.
For example, when I was in the hospital there was a decision to be made to move me off of IV-delivered pain medication to oral medication. During this time I experienced some extreme pain and the nursing staff wasn’t providing me with the medication that I needed out of fear that I was just trying to get more opioids. (A common reaction now due to the opioid crisis in America). As a result, I escalated this to my doctor by calling the emergency line for my doctor’s department. My doctor then made a call and corrected the actions so that I could get pain relief.
The post-amputation process
Upon exiting your surgery you will have a bandage and a soft brace on your residual limb. This will stay this way until your wound is healed enough that the risk of injury is not great.
As you heal you will be enrolled in physical and occupational therapy. The goal of these will to strengthen your body and to teach you how to do everyday things as an amputee. You will learn how to navigate using a wheelchair, walker, and/or crutches depending on what is best for you.
When your stump is healed enough you will start to wear a shrinker to shrink your limb down closer to normal size. This will help with the fitting of a prosthetic device.
Around this time is a good time to start interviewing prosthetists. Often times hospitals will have a prosthetist or orthopedic clinic that they work with, but don’t feel compelled to use them. You interview as many as you have to to find a clinician that you are comfortable with. Here is a post where I go into detail about this – https://www.silist.com/how-to-choose-a-prosthetist/
There you go. That’s a high-level explanation of what you should expect post-amputation. Feel free to comment to ask any questions.