The following interview is a conversation between Theresa (Last Name Private) and Daniel Rinella. Theresa was kind enough to share her time with us to describe life as an amputee. Our goal is to help new and future amputees that are looking for answers. This information is not medical advice, but as health information we can try to promote ideas that you can learn about and research further… (TH will be short for Theresa as we move forward in the interview)
DR : Hi there, is this Theresa?
TH :… speaking.
DR: Hi Theresa.
TH : How are you?
DR: Good, good, thanks a lot for taking my call. I’m just curious, I don’t want to assume anything, how much time do you think you have right now? Five minutes, ten…
TH : I’ve got time.
DR: Okay. Like I said to you on Facebook, we’re just trying to put some information together for new and even future amputees that really need more information, the ins and outs of life after amputation surgery. I’m just going to ask you some questions and then you feel free to answer them. If you don’t want to answer one just say “pass”. I totally would get that. We’re not trying to be too intrusive here…
Can you tell us Theresa how long you’ve been an amputee?
TH : I got cut on February 19th of 2014.
DR: So 2014, so relatively recently.
TH : Yeah, just two years, I just had my two year just a couple days ago actually.
DR: Okay. This is kind of a broad question, but if you had some advice that you would like to have received right when you had your surgery, what would it have been?
Is there anything that you would like to pass on to a future amputee…
TH : Oh yeah. It would have been the various pain treatments that were available, other than just you know hard drugs all the time. There are alternatives out there.
DR: Okay, so there are alternatives, can you mention some that you like or that you know about?
TH : …My case was a little bit complicated because I had a compartment syndrome. It was chronic regional pain syndrome that I had. So which means that my pain was, my brain has, is perceiving it all that much more than what it actually was, simply because I had several traumas at the same site before the amputation.
DR: So can we just take a step back? So, you’re saying is that your brain was thinking that something was worse than it really was, am I taking that the right way?
TH : Yeah, and that was from, it’s called chronic regional pain syndrome. If nerves are damaged and your brain is gonna think that either there is absolutely nothing going wrong, or it’s gonna go to an…
TH : Yeah, extreme, and more often than not it goes to the extreme side.
DR: It sounds like your brain is probably trying to, trying to help you…
TH : Yeah, it’s trying to deal with it and so…
DR: Okay, so when you’re talking about pain, after the surgery you’re saying you had pain, and then you learned about some techniques that really helped?
TH : Yeah I’m very much into alternative medicine. Western medicine I guess we can call it, and a matter of…
DR: Is there one that you like the best that you can recommend?
TH : I’m a big believer in massage therapy.
DR: Okay, so massage therapy?
TH : Yep, always works.
DR: Is there any sort of books that someone could read that you think is a good idea? Or, if they wanted more information on that where would they go to?
TH : Just contact a registered massage therapist. They actually have, registered massage therapists [who] have training…, it’s very limited training but it still is in their training component, their education level, they do talk about massaging amputees.
TH : Yeah.
DR: So they talk about that, that’s great.
TH :Yeah they talk about that, and so yeah it was just a matter of shopping around to find a massage therapist that was comfortable, because not everybody is, and…
DR: So they just don’t want to hurt you or something?
TH : Yeah.
DR: Okay. Can you talk about your prosthetic leg? Theresa, you’re an above knee or below knee amputee?
TH : I’m an above the knee. I’m actually a long residual above the knee.
DR: I see… Is there any sort of thoughts that you have about prosthetics? Like is something working for you better? Have you tried more than one system? Do you have any thoughts about that?
TH : I am currently in a suction system, and it seems to be working right now… With my activity level and my prosthetic guy, we are looking at possibly changing the system, simply because I’m really active and my leg still sweats a lot….
DR: Oh I see, so something different than suction you’re saying? This might be good for a very active person?
TH : Yeah.
DR: What would you tell a new amputee? Should they taper their expectations ever, or should they not? I think there’s, you know, sometimes as a prosthetist we don’t wanna get people super excited as if we’re gonna give them their leg back, there’s a difference. So from that standpoint we don’t wanna let anybody down.
Do you have any thoughts to tell a new amputee?
TH :Well when I was a new amputee nobody told me anything about what I didn’t have, like when I was learning how to walk and stuff like that, and trying different knees as to which one I was going to be settling with, I was doing things that amputees really couldn’t do.
DR: Can you say that last part again? I think the phone cut out, sorry.
TH : Oh, I just said I was doing activities, like basic walking on uneven surfaces, stuff like that. Nobody gave me a book so I had no idea what I could and couldn’t do, and so I was just doing things as I normally would. And I think because of that attitude I had I was doing things that seasoned amputees couldn’t do.
DR: So a lot of it is mental, in your opinion?
TH :Oh yeah, a lot of it is mental.
DR: Yeah so you know, you get what you focus on or want out of the situation?
TH :Yeah to a point, and like when you’re walking, it was hard for them to describe to me what you’re supposed to be doing, what you’re feeling, and all I kept saying to myself is just trust the knee, trust the knee, it’ll be there. And eventually, you know…
DR: Right, that’s some good information. So trust the…
TH : Trust the hardware.
DR: That’s the hard part, you’re saying?
TH : Yep, trust the hardware.
DR: Oh I see. So how would you go about finding a prosthetist? Some people say, “you have to love your prosthetist”, some people might not feel the same way. I’m just curious how you feel about that?
TH : You really gotta be able to openly talk with your guide, or your person, your leg guide. Like, I’m very critical about what’s going on with my leg, and I don’t, I….
DR: You don’t want to be told what you can’t do with it?
TH : Yeah, and like I’ll say, “you know what, it needs to be lifted up a tiny little bit.” Like, I’m not gonna leave until I know I’m happy with it, so I don’t feel like I’m being, like you only have a half hour or you only have an hour. No, my guy knows now that you know he books the morning with me because it’s not a matter of just you know making a small adjustment and then off and being done. No, we make the adjustment, then we walk around with it. I trial it out, and if I’m happy with it then ya, I’ll go, but if I’m not happy with it we stay until it’s done.
DR: Okay, that’s a good point that you bring up. When you go in for a visit, it sounds like there is no set time limit. It’s never really a half hour, or sometimes is it?
TH : No, never.
TH : And I’m not afraid to go, for instance last week I just had a permanent socket. I got it on Wednesday.
DR: Was that your first one?
TH : That was my second permanent one. And I saw it, I got it fitted on Wednesday with it, so that took a little while. And then I saw him again on Friday because we had to make a slight adjustment, and I’m seeing him tomorrow because we have to make another adjustment because it’s not fitting. Something is off.
DR: Okay, so this actually brings up a great point. Sometimes you read these things maybe online and someone says, “I got my leg, and the first time out of the gate it was just perfect, and I’m walking perfect now.” I think there’s some sort of an expectation level that people should know from a healthy viewpoint that you have to go back in for adjustments. And that doesn’t mean everything’s terrible; it just means that’s just the process.
TH : Because your limb, whatever it is, you know changes from day to day. As it changes from morning to afternoon.
DR: That’s a great point. So, it changes day to day? And does it change less now since the initial surgery, or does it change more, or what?
TH : No, mine apparently seems to be affected by the weather. So if it’s high humidity I seem to swell more, I’m doing a lot of activity during the day then…
DR: That’s interesting.
TH : Like mine totally changes.
DR: So how do you deal with your changes from your standpoint? Do you use socks still or no?
TH : Oh yeah I’m still using socks.
DR: Okay, do you find that some amputees that you might talk to, do they ever say, “I don’t use socks anymore, I don’t need them”? Or does every amputee use them?
TH : I think ones that I know that have been so for quite a number of years, they don’t use the socks anymore because they’ve probably shrunk.
DR: They’ve probably shrunk down you’re saying?
TH : Yeah and it also depends on your activity level. Because if all you’re doing is walking around, you know, you’re not really building the muscle that you have. And I run and I do a lot of hiking, do a lot of snowshoeing up here, and so…
DR: Are there any adaptations that you use with your prosthetic leg because of these activities that you do?…
TH : Nope I just go out and do them.
DR: Okay, so that must mean that you have a pretty active leg as it is.
TH : Yeah, well I was pretty active before because you gotta realize I’m a police officer, so I had a very active life before, and then before I lost my leg it was like three years of different surgeries and stuff, and I managed to stay in shape during that timeframe even though I had a leg that I couldn’t use. And then post-op you know I’m trying to regain all of that as well, so…
DR: So you were just an active person beforehand, period…
I think I heard you say there was a couple surgeries at least you said?
TH : Yeah I had five surgeries in three years. And it’s because I had bone tumors in my leg, and so it was all at the knee,…
DR: Okay, I remember another gentleman I was talking with said that he’s never met an amputee who has not had a revision surgery. Would you agree with that, or have you heard of people who only had one surgery and that was it?
TH : Yeah I have heard of both, no revisions, I’m looking at myself like I’m not looking at having a revision.
TH :Yeah like since I’ve been cut I’m probably never gonna have a revision.
DR: Oh okay, so you had different surgeries for other reasons you’re saying? Or you had…
TH : I had bone tumors, and you know they cut the bone tumors out, they do the reconstruction, and then you know, like it was all trying to keep the leg. I had bone cancer so they were trying to, fighting that and…
DR: And then finally…
TH : It got to the point where we can’t do anything [more to address the tumors independently], so…
DR: So after the final surgery then that was it. There was no more revision.
TH : Yeah because after the amputation I’ve never had any, and it looks like I’m healing really well and everything is going well, so…
DR: How long did it take your residual limb to heal up? Can you talk about the healing process after a surgery?
TH : I got fitted when I was six weeks post-op. Kind of unusual. A lot of it has to come down to, again, I was in good shape.
TH :So if you got somebody, like I know, like I’m sort of helping another, a below the knee amputee right now, and she was in horrible shape. She was in the hospital for like nine months and she’s still not walking. You know. She was cut maybe six months after I was. Yeah, so it’s still, it all depends on your health.
DR: And you were in good shape, right?
TH :Yeah like where you were and how you were during, because some people have had, like me where I was having to deal with my bone cancer for three years, and then it also comes down to your mental wellbeing. If you, like with this girl that I’m working with here, it’s the end of the world for her.
DR: Oh I see. Yeah I don’t know if there’s any perfect way to deal with that. Do you have any thoughts on the best ways to deal with [amputation]? – I mean it’s a life-changer no doubt.
TH : Well, it is a life-changer. The way I look at, like my original diagnosis was stage four bone cancer; [with that diagnosis] you’re dead in three months.
DR: Right so having an amputation is better than being dead, right?
TH : Yeah so I look at it, the way I look at life now is like yeah, I was supposed to be dead like three years ago.
DR: Yeah, that is a positive take on the whole thing.
TH :Yeah like you know, so I’m striving,… this knee that I have is not the best one for running on, but I’m learning how to run on it because for my job, to return to full duties I need to run. So I’m going to run.
DR: So your goal is to get back to full duty?
TH : Oh yeah.
DR: Have you heard anything about water legs in general?
TH : Yes and no.
DR: Okay. I hear it every so often, people wanna go to the beach, some people just take off their current leg and just go to the beach.
TH : Yeah I do. For me cosmetically it’s not an issue. I am not afraid; I’m not ashamed of my leg. I know there’s a lot of people out there that “oh, my god I can’t leave the house without, you know…”
DR: Right, so that’s again the mindset. You know, [what you are saying is that] I’m not gonna let that hold me back. Is that [right]?…
TH : Yeah, I have a good friend of mine, she’s an above the knee as well, and she does not use a leg, and she will not be seen in public with a bare leg. Like she can’t show her stump.
DR: Oh, but she will use a leg?
TH : She won’t use a leg either.
DR: Wow that’s interesting; I would think that she would want that.
TH : Well she had some fit issues when she was younger. Like she’s been like this most of her life.
DR: Oh, so she’s just kind of used to not having one, is that right? I mean in terms of a prosthetic [leg]?
TH : Yeah she just… had issues when she was young and everything. But yeah that’s the difference between her and I is that yeah I don’t care who sees my leg. I’m like…
DR: You’re thinking, “hey I’m walking, this is good”.
TH : I’ve had like, you know, I could put a grill on it, one of those covers, one of those nice little covers, or I can put like a skin cover on it, but nah.
DR: Yeah to be honest I know some people that have prosthetic legs and I would have never even known that they had it unless they started talking about it, so, especially if you’re wearing pants or something. But…
TH :Yep, or shorten the pant leg on that side. I like to show it.
DR: One of the gentlemen that we spoke to said that his prosthetic leg, it would actually rub on his pants and it would kinda eat through pants faster. Do you agree with that or no?
TH : I agree because if you’re using a suction,…that’s what rubs through on the pants all the time.
DR: So is there any sort of way that you approach that? Is there a, you know, I don’t wanna say a cure for the pants… Is there something you can do to help the longevity of your pants so you’re not always buying new ones every five minutes?
TH : All my pants are cut short on the one side.
DR: Oh that’s what you do? Okay so you just cut them short on that one side and that’s how…
TH : That’s how I deal with it.
DR: Okay. So I mean at least that’s one way to deal with it.
TH : Or because I’m a girl I’ll wear skirts but yeah, it’s minus twenty eight degrees here so…
DR: It is?
TH :Oh yeah.
DR: Oh my gosh are you serious?
TH :It’s minus twenty eight, I don’t know […]I think it’s still like, it’s still minus ten Fahrenheit so…
DR: Wow that’s amazing.
TH :It’s still cold out here.
DR: Yeah, still cold, I think that’s a fair statement.
As we come to a close, you know I wish I had more questions right now, but is there anything else, what would you tell a new amputee who’s looking for answers? What would you tell them from your viewpoint now? Is there anything more?
TH :Yeah it would be talk to your professionals, ask lots of questions, and research.
TH :I did research before I did mine, so I went into, like my amputation was an elective, and I knew exactly what I was getting into, and exactly what I was… well I didn’t know exactly what was going to happen after, but I knew that it’s entirely up to me as to how things are gonna happen.
DR: You mean afterwards?
TH :Afterwards, yep.
DR: Is there any sort of resources out there that you really look to for answers? I know that the amputee coalition is a big…
TH : Yeah, I looked at them, and I looked at the War Amps.
DR: The War Amps you said?
TH :War Amps.
DR: I’ll have to check them out and kinda give people a website to look at.
TH : Here up there in Canada if you, once you see your prosthetic guy, they go into the War Amps and they send you a whole bunch of information. I got like an inch-worth of paper from them.
DR: Hopefully it was a good…
TH :It was a lot of good information. It was you know dealing with depression and talking about living a healthy lifestyle, and you know things to ask your prosthetics… it sort of did step-by-step for you.
DR: Okay, sounds good. I really appreciate it Theresa, thanks so much for your time.
TH :Hey you’re welcome.
DR: Okay, have a good day.
TH :Thanks, bye.