Update: Dealing with the Amputation

Hello everyone!

It's definitely been a while. Some of you may or may not know but I had my right leg amputated below the knee on August 2nd due to synovial sarcoma in my right ankle. If you want more info go here: http://www.synovialsarcomasurvivors.org/forum/topics/final-decisions-urgent

Hopefully if there is anyone out there considering amputation this update will be helpful to you, I'll share some tips:

Here I am now 2 months later and to be honest I can confidently say that despite the impact the amputation has had on my life as a whole, I still feel like me. It wasn't a traumatic experience like I thought it was going to be. Being only 14 years old and just entered into highschool it definitely has made me a bit more socially awkward, and to be honest I despise sitting in a wheelchair the majority of the time I am at school, but I know that soon enough I'll be up on my feet again. I was strangely zen the day of my surgery, up until the moment when they were putting me to sleep. I remember crying, a lot. This experience has been terrifying for me, no doubt of that. But I want anyone out there who is afraid of amputation to know that it's okay to feel this way. You don't have to be a tough person. But you do have to be a strong person. And if you don't think you're strong, trust me. You are. Everyone is. We just never realize it until it's the only choice we have. The first few weeks after my amputation was brutal, not going to lie. The phantom pains were very intense and I definitely didn't feel like myself. I had a few pretty bad falls in the beginning, which really sucked, but nothing that I had to recover from. Thankfully the phantom pains toned down after about a month and I was able to start school on time. Now I feel great. I feel normal in my own skin. I barely notice my leg to be honest. I do have phantom limb sensations, and I still have the phantom pains, but definitely not as intense as before. I was on Gabapentin for my phantom pains, and it made a pretty good difference. Now I don't take anything. Trust me, life goes back to normal sooner than you think. Of course it's different than before, but not as drastically as you think. Unfortunately my school is not accessible whatsoever for wheelchairs so I am limited to staying on the main floor for my classes and such. I feel very self concious at school and can't wait to get out of my chair and on my feet, but being patient is difficult. Good news is I should be getting fitted this month! Unfortunately my wound did get infected, and so a small section of it is still not fully healed, but I don't know how that will affect my fitting. I use a walker to get around at home, and a wheelchair almost everywhere else. A very important tip I have to any new amputees out there is don't push yourself too far out of your comfort zone. Don't feel the need to walk with crutches if you feel more stable on a walker. Do whatever you feel safe and comfortable doing. What I'm worried about the most is putting on extra weight. Not having much physical activity has definitely taken a toll on me, and I don't want my weight to be an extra issue when it comes to walking with my prosthesis. Please, if anyone has any tips on how to maintain a healthy weight while still in the early stages of being an amputee, I would GREATLY appreciate it if you would share below. I really don't want to hurt my stump by putting all this extra strain on it, but I have no idea how to exercise in this state. I would really appreciate any tips or advice any amputees out there have, and if anyone has any questions or comments, feel free to share! I would like to thank all the other survivors out there who have helped me come to my decision and prepared me for my surgery. I couldn't have done it without this amazing community!

Sarah, are you getting any physical therapy? The first weeks after my amputation, a therapist came to my home and made me do exercises. It helped with the phantom pain somehow ( I think because it helped blood circulation). My wound took a long time to heal. You can see some pictures here:


My local YMCA has a liveSTRONG program for cancer survivors, a free 12 week membership to aid in recovery. I don't know if you have anything similar close to you but it may be a good idea to sign up for some physical activity tailored to your condition.

Thanks Sarah. You're awesome!

Hey Sarah,

I'm so glad to hear you are doing so well! That's awesome!

Definitely look into what Elodie said about the physical therapist. I also had a physical therapist that came by my apartment twice a week for a little over a month after I had my amputation. They give you great tips for building strength in your other leg and arms and stuff.

Also, if you do feel up to trying crutches, go for the forearm crutches. They are incredible and give you much greater range of motion than the under arm ones. You should get some just for your life after this. I am an above knee amputee and have never used a wheelchair (until recently when I started playing wheelchair basketball... which is awesome! Haha), but have used forearm crutches every day of my life since losing my leg. They can hurt your hands at first, but it is worth getting used to them because they can change your life and give you access to those upstairs areas, etc.

As for phantom pains, have you tried any mirror therapy? If not and you are still having some pains, you should check it out. It changed my life as far as the pains go. It doesn't seem like it would work, but it actually does and is worth giving a shot if you have any pains at all! Here is a link where I describe how that works: http://survivingsarcoma.com/?p=987

But the number one way I found to keep the weight off after my amputation was chemo. I call it the chemo diet. It'll help you drop those unwanted pounds in no time! Haha. Kidding... kind of. I think the key is to just make sure you are eating right. Something I have trouble with, but am working on!

Keep up the good work Sarah! Once you're on your leg you'll see exactly what little difference this is going to make in your life. And then you can start living it to the fullest once again. Every day is a gift from here on out. Get the most out of it!


Oh Sara --I am sooo very glad to hear about your experience! I have been praying for you & wondering how things turned out for you! You are an amazing 14 year old!!

Glad to hear things are going quite well for you --continue to stay strong & take good care of yourself! Your story is an amazing & encouraging one!