Dr. Lewis, the John Murray Professor of Orthopaedic Oncology, attended Yale University and matriculated at Harvard Medical School, graduating with honors. She completed her Orthopaedic training at the Harvard Combined Orthopaedic Residency Program in Boston, MA and her fellowship in Musculoskeletal Oncology at the University of Chicago. The first African American woman to be awarded the MD Anderson Faculty Achievement Award in Patient Care she is now the Chair of the Department of Orthopaedic Oncology at MD Anderson.
Elise is a cancer survivor of 7 years, with a rotationplasty. She is currently in 10th grade completing her second year of highschool. Elise aspires to become a PA (physician's assistant). Having gone through cancer treatment and recovery, without the help of other cancer survivors or amputees, she would like to be there for others who are going through the same thing. Elise also enjoys participating in, and competing with her highschool choir. Currently Elise serves as an Ambassador Agent for MIB agents and a Junior Board member.
Anna Eggleton: Hello and welcome to OsteoBites. My name is Anna Eggleton. I am your guest host today. I am a daughter of an osteo survivor and the marketing director for MIB Agents. Today, we are going to be discussing rotationplasty with junior board member and osteo warrior, Elise, and her orthopedic oncologist, Dr. Valerae Lewis from MD Anderson.
Before we get started, MIB Agents is dedicated to making it better for the osteosarcoma community through programs, education, and research. We make it better when we are together. If you are able, please consider a donation to MIB Agents. Your gift means hope and support for those facing this disease.
Dr. Lewis, while you are getting your screen share ready, Elise, can you please start introductions, please?
Elise Robinson: Sure. Hi, I'm Elise Robinson. I am 15 years old. I am in 10th grade, a sophomore at my high school. I was diagnosed with osteosarcoma back in 2014, so about 7 years ago. Along with my surgery back in 2014 and I have been declared NED ever since May of 2015. And, I'm on the junior board.
Annika: Hi, I'm Annika. I'm also on the junior board this year. I am 22 and I'm a senior in college, and my brother had osteosarcoma a couple of years ago and I'm excited to hear about rotationplasty today.
Valerie: Hi, I'm also Valerie. I'm 21, a junior board member, and a university student. And, my sister's an osteo angel and I'm also excited to hear about rotationplasty surgery today.
Dr. Valerae Lewis: And hi, I'm Val Lewis. I'm the Chair of Orthopedics at MD Anderson Cancer Center and Elise Robinson's doctor and it's an honor to be here today to talk briefly about osteosarcoma. Questions are definitely welcome. Great, so it's just kind of a quick review and maybe too high of a level but just ask any questions.
So, rotationplasty kind of seems like a new surgery but it was actually first described in 1927 and there is a problem called "knee ankylosis" and shortening due to TB and TB was really rampant back then so people had problems with their knee. So board, we've actually developed this to kind of combat leg length discrepancy and shortening. And then, I've been — Nes has really the person who popularized it in orthopedics and there's a syndrome where patients don't have a femur. It's a proximal femur deficiency and so he really kind of establish an orthopedic oncology and we called it the "Van Nes rotationplasty." And then, Salzer, in 1974, actually started using it for distal femur osteosarcomas.
So, the indication is it's a great alternative to an amputation. So the issue with an amputation is you lose your knee so you lose a lot of your power. Initially, it was really young children between eight and ten years old, but we're doing it older and older. You'll see in my slides later, I have a 21-year-old, 25-year-old. So, kind of the age range these days is being pushed. It can either be done primarily for a tumor or it can be done as a salvage for someone who has an infected prosthesis recurrence or failed endoprosthesis. So, it kind of works both the gambit as a primary surgery or a salvage surgery.
It became less popular kind of during the, I don't know, '80s, '90s because it does look kind of odd. The foot's attached on backwards but it's really gaining in popularity especially with kids because once you have a rotationplasty, you don't need any other surgery. If you have a prosthesis you will need another surgery every 15, 20 years, and I noticed my kids are really hard on their prostheses so the plastic parts tend to wear out. But really with rotationplasty, you can pound on it as much as you want and that's actually Elise in the lower corner and she was running cross country on her residual limb. So, it works really well and the functional outcome is generally excellent.
Essentially, all you need to do rotationplasty is an intact sciatic nerve. The sciatic nerve is the big nerve going down the back of your leg that really controls your foot. So that gives the hamstrings, which will be really your power muscle group after the rotationplasty, and it will give you sensation to the sole of your foot. You also have to have pretty good ankle range of motion and stability because your ankle has become your knee.
So, rotationplasties while originally used for the distal femur, now we use it for the distal femur, proximal tibia, and actually interesting enough, I've done more proximal tibia rotationplasties. It can be done with the proximal femur and you kind of make its own hip joint and in some cases and actually one of the little girls you'll see in here, it's for a total femur and we kind of flipped up the tibia. Okay, here we go. So this is kind of a little animation of exactly what a rotationplasty is. And I would say a picture is worth a thousand words.
Video voiceover: A rotationplasty is a surgical procedure that provides an excellent option for patients with tumors in or near the knee joint. It is best applied in children who are still growing. During this procedure, the surgeon removes the affected portion of bone along with the knee joint. The major artery, vein, and nerve leading to the foot are saved. The lower portion of the leg is rotated 180 degrees counterclockwise and then attached to the upper portion of the leg. The ankle is now on the same plane as the former knee with a foot and toes pointing backward in the heel facing forward.
Because of the rotation, the ankle bends in the same direction as the knee. The surgeon will take into account the age of the child and their growth potential. Initially, the surgically modified knee center will be lower than the unaffected knee. As the child grows and bones lengthen, the knee centers will match.
Dr. Valerae: So, that's one of the things. Elise, who will talk later, her residual limb was initially quite a significant amount longer than the knee on the contralateral size. And as she grew, and she really sprouted up, her knee centers equalized. There is a fair amount of preoperative planning that goes on and it really has to be something that the child wants. I think Elise was very determined to get a rotationplasty and really convinced her parents that it was a great idea. But it has to be complete buy-in from the children because the rehab is significant and also the limb does look odd so the children have to be comfortable with it.
It is interesting though if you talk to patients who've had amputation versus patients who had rotationplasties. The rotationpalsties really don't identify as amputees like amputation patients and I really think because they really have a mobile part of their leg and their foot is still attached, and I think it gives them a different mindset. One of the things in children we really have to watch is the prediction of growth remaining because that's how much longer you want to make the limb as we discussed so that they can catch up and so that the knee centers can be equal.
Elise's parents are quite tall and when I met Elise, she was quite small. So, that's one of the reasons why her limb was significantly longer so she could catch up as she grew. And this is just a jump out, I'm going to go quickly through this because it can be queasy but this is someone with a distal femur osteosarcoma. This is the biopsy incision. This is the incision we make in the OR. We cut out the tumor so we really never see the tumor, it's just like an amputation. And then, this is the nerve, these are the bones, and then we attach it. So then, the foot's pointing backward. Here's the hip pointing towards us but here's the foot pointing backwards. And then, we generally attach it with plates and screws.
And here is a young lady that underwent a rotationplasty and her foot fits right into the prosthesis and her heel looks just like her knee. And she really has great mobility.
This is another young lady. This is Gillian Williams, a patient of mine. She's actually quite mobile as well. You see she has a lot of power. Her foot is also pointing right down into her prosthesis and her heel as her knee and it kind of looks like the other side. And Gillian's amazing because she actually was in the Tokyo Olympics this year and the US volleyball team won the first prize.
It's great to see these kids and she actually was maybe 19 or 20 when I did a rotationplasty. So, she had finished growing. And so, you notice that older children adapt really well as do younger children. And this is just — I throw this in because this is a great example of why a rotationplasty is so wonderful — because you keep your knee so you can ride a bike, you can play soccer, you can ice skate or roller skate because you have your knee that propels you forward. And this is her in her rotationplasty and then she has a great range of motion as her ankle that we really saw while she was playing soccer and sports. And she's actually in Wisconsin and loves playing ice hockey.
Like all procedures, it's not without complication and really vascular is the most serious complication where the vessels can clot off but we watch these patients very closely postoperatively. And then, wound healing can be an issue. We actually in Anderson do this with the plastic surgeon and I think because we do it in larger individuals, we've kind of developed a different type of incision that gives us an additional soft tissue coverage that has worked very nicely.
This is Elise clearly hiking up on the mountaintop. There's definite advantages and I think it's a great surgery because it's a definitive surgery. Patients come in, whether children or adults, and they just need one surgery. Like I always plan, my patients living to 90 and sometimes it can be daunting if they know that they're going to have surgery every 10 or 20 years versus with the rotationplasty, you're done. You really have an excellent function. You have a good range of your motion. You can do anything you want as far as sports. And generally, you have a non-antalgic gait where you don't really notice that the patient has a prosthesis.
The disadvantage is, it is odd-looking so I think the patients really have to be comfortable with themselves. And that's something that was particularly impressive about Elise and she'll talk to you later. But even as a young girl, she was always incredibly composed and really impressive. I think it's worked well for her. And the ankle is less stable than the knee but I actually haven't had any of my patients complain of those issues.
So, it's really a great alternative to a prosthesis. It's a definitive surgery. It's an effective method for local control and it gives you really great function and a lovely gait. And that is Elise in one of her many fashion shows that we've had at the Galleria that she has graced us as being one of our models.
And I want to thank everybody and let me know if you any questions.
Anna: Thank you, Dr. Lewis. That's a perfect overview. A couple of questions came in while you were presenting. If I can ask Valerie and Annika to ask those questions. Valerie, if you can start for us, please.
Valerie: John G asked, "Why is the age for the surgery so young? Is it possible for young adult patients and older?
Dr. Valerae: Yeah, just like I said and showed several examples, we're extending the age so the girl who just won the gold medal in the Olympics was a college student when she had a rotationplasty. So she was 19 or 20 and she actually came to Anderson because we did this surgery. So, we are extending the age originally for young children because they can adapt kind of the ankle motion. They had better ankle motion, right? We have a better range of motion when we're younger. But, if you don't mind a stiff ankle or working at it more, really, the age is getting older and older.
Annika: There's a question from Janet. Her daughter had osteosarcoma and rotationplasty was never discussed as an option. She's wondering, is there anything being done in orthopedic education to raise awareness of patient-reported outcomes long-term to surgeons?
Dr. Valerae: As far as rotationplasty or as far as limb salvage, I think it's yes either way. I think that's really what orthopedic oncologists are concentrating on now. I think as the specialty gets older, we realize that our job doesn't end after the OR but our job ends when the patient's back at school, running around, getting older, getting married, really living a full life. So, I think more and more people are assessing PROs, patient-reported outcomes.
We developed a program called "The Learning Cancer Outcomes Research Program" where we actually get both functional and patient-reported outcomes on all our procedures.
Valerie: Kate Farmer, it's a comment, says, "Hi, Dr. Lewis, congrats on all of your accomplishments everyone." And then, Kate Farmer, she said that. Just want to read that comment out to acknowledge that. And then, Janet also asked — I guess it's applicable to both of you, Dr. Lewis, and Elise. And she says, "I hear in the community that phantom limb pain is virtually non-existent and what percentage of time would you say this is accurate?
Dr. Valerae: For the majority of my patients, they don't have phantom limb pain. And the reason why is their nerves are still hooked up and they see their foot and they conceptualize their foot. So, just like you don't have phantom limb pain when you have a distal femur prosthesis. You really shouldn't have phantom limb pain when you have a rotationplasty, right? Because really your nerves are still hooked up.
Elise, you never complained of phantom pain.
Elise: No, I've never had phantom pain. I did have a little bit of phantom itching here and there but it was so insignificant. It's barely there. The only kind of phantom thing that I had was after the surgery. I'd touch one side of my leg, my brain thought was on the other side, but that's really all.
Dr. Valerae: Right. And that's the retraining and the person asked young people are more malleable so they retrained easier. And you notice after surgery when I ask them to move their foot up and down, at first they didn't understand. Elise would move her foot really the wrong way just because up was no longer up, right? It had a reverse. So kids adapt to that easier because their brains are more malleable.
Anna: I think that's all of the questions so far. Elise, would you like to take it over?
Elise: Sure. So, I'll be talking with you all today about from decision-making up until present day and everything between, everything I've been able to do, the things that I can't do, which is very small amount.
So, starting with the decision-making. Since I was eight years old, I can't really remember what was going on with the decision-making. I can't differentiate between if it's what my parents told me, if it was a picture, if it's my real memories. So I'll be bringing in my mom here because she was there, she remembers the whole thing, she had it all written down piece by piece. So here she is.
Jennifer Robinson: Hi, everybody. My name is Jennifer, I'm Elise's mom. And, so we were getting Elise ready for this and we realize Elise doesn't remember anything about the decision-making process but I can attest, I'm sure Dr. Lewis can too. Elise was very much a part of the decision-making process. So, she asked me to jump in to really give a good description of what happened back then.
So, about a month after chemo started, we went in to see Dr. Lewis to decide on a surgery. And, before we went in there, my husband and I, we only knew about amputation, above-the-knee amputation, and limb salvage. And we discussed with Elise that we really didn't think limb salvage was a good idea for her because we didn't want more surgeries afterwards and she was still growing a whole lot. And, my husband and I were quite aggressive about this and we wanted the cancer out, gone, cut it out, be done with it.
So, we discussed it with Elise and she agreed to above-the-knee amputation. So we went in, we saw Dr. Lewis and then she presents to us rotationplasty, which we had never heard of before. And she's describing it and my husband and I are thinking, "What are you talking about? That sounds very, very strange." But Dr. Lewis showed us the video from the Mayo Clinic, which she actually showed just previously, the girl that was riding a bike and roller skating. And Elise saw that and she said, "Yeah, yeah. I'll just do that. That's the one I want." Just casual as can be but all she saw was that girl could do anything she wanted to do.
And so, Chris and I got on board very quickly because that's what Elise wanted to do. It took us a little bit longer to see the benefits of it than Elise did, but it was quick. We got on board and we're all in for rotationplasty. So, the day of the surgery was December 8th, and I think my biggest worry was pain management. How was I going to manage Elise's pain from the surgery? Which would be like any of the other surgeries too; limb salvage, amputation. And then, our long-term worry was how were her peers going to treat her after this when she comes out with a leg that doesn't quite look like a natural leg anymore.
So, pain management went just fine. I think with chemo too, it takes a little bit to figure out what works best and we were able to manage the pain quite quickly. Elise really doesn't remember much about the surgery either. She says that — what you remember, waking up from it, right? Really scared.
Elise: Yeah. I only remember waking up from it and being really confused but that's really all. I remember some sitting in the ICU but other than that, basically nothing.
Jennifer: I think memories kind of start when physical therapy started and physical therapy started right away. And, it's very important. The physical therapy is incredibly important to have the best outcome from the surgery and it started right away. And the neat thing about MD Anderson and Dr. Lewis is she has her own physical therapist on her team and he knows how to work with you right after these surgeries. He's very specialized. He knows what's going on and Elise worked with the same physical therapist throughout her recovery, which was really neat. It wasn't, "Hey, we're doing the surgery now. Go find a physical therapist." The physical therapist was right there. He knew what he was doing.
And in addition to that, it wasn't, "Okay. Now, go find somebody to make a prosthetic for you." Dr. Lewis also has a prosthetic maker that she uses, recommends and he's great. We worked with him. He talks to physical therapist, who talks Dr. Lewis, they all talk to each other and it's not us having to play basically the phone game of, "Well, I think they said this and maybe you do this."
So, Elise has had a really, really good outcome from this surgery and I tell other parents and families, "This is not a quick solution, it is the longest-term solution because you don't bounce back from it as quickly." — and I put that in quotes — as the other surgeries. Because you can't start learning how to walk again because you still have 20 weeks of chemo after the surgery. You still have to heal, chemo doesn't let you heal. So, you're not going to jump into your prosthetic as quickly as maybe some of the other surgeries. But, the long-term solution is incredible. If you look at Elise, she's got pants on, you're not going to know that she's wearing a prosthetic.
So now, I'm going to give it back to you Elise. You're going to talk about today. Bye.
Elise: Just sliding my chair back up. All right. So, starting around today. So, whenever I wake up in the morning, it's become a muscle memory. I just pop the leg on. I keep my prosthetic sock near my bed. I just put the leg on a few seconds so if I ever need to get up in the middle of the night, I can just put my leg on in a few seconds, go downstairs, get water, use the bathroom, do whatever I want to do. But also, if I don't want to wear my leg, I can walk around pretty easy on it because there's a foot there and there's a bit of maneuvering with the walking with a leg on but I can do it because there's a foot there.
With high school and stuff, I go to a really, really big high school with about 4,000 kids, about 1,000 kids per grade, it's giant school. I end up walking about a mile and a half whenever I come home from school. With all the walk around the school, I go up and down like five flights of stairs throughout it and I can handle that all completely fine. The other day, I had to walk a little note all the way down to the counselor's office, which was on the other side of the school, three floors down. Did that, went back up in three floors, walked all the way back across the school. I wasn't out of breath. I wasn't in pain. I was walking, it was just a normal thing to do.
So, what is difficult? The things that I find a bit difficult are sitting crisscross obviously because my leg can't bend that way. An, it took me a little bit to learn how to go up and downstairs but once I got that down, it's no big deal. So, there's virtually very, very few things that I can't do. Anything that you know of that I can't do? Because I can't think of much.
Jennifer: You haven't learned to ride a bike yet. That's all.
Elise: Oh yes, riding a bike. But, I haven't tried to learn how to do that yet, but the girl on the video could do it.
So, in terms of pain, there's very, very little at all. Whenever I'm sitting down for a little bit or a while and I have to get back up and walk, it's sometimes there but it's just a bit of discomfort but it goes away after a few seconds of walking on it. So, very little pain. Never am I in pain when I'm just sitting down doing nothing. And if there is pain, it's the normal pain of overuse just like my other leg. Like I'm in softball, so if I go out and play and I haven't warmed up right or I haven't done it for a while, it's the exact same kind of pain for the other leg. So, not much.
I was on cross country back in middle school for seventh and eighth grade. That's basically when I learned to run. That was how many years after the surgery?
Jennifer: Three.
Elise: Three years after the surgery when I started to learn how to run. I was part of the team. Everyone treated me as an equal. There was no... I don't know. How do you say it? I was just treated as a kid on the team. No big deal. This year — no, last year, I was on my high school softball team. Again, I was treated the exact same. I've been playing softball for a few years now and I've been getting better. And now, I'm on my league softball team and again, treated as the exact same kid. I'm part of the team, batting either third or second on the lineup. I play second and usually somewhere in outfield, I've hit triples. Basically, everything. I'm just a part of the team. So, I can do that.
I work at Chick-fil-A now. So now, I'm working about eight-hour shifts on my feet with one 15-minute break. I have no trouble with it at all. Whenever I'm walking through that to the customers, I end up walking like three miles in that one day along with all the other stuff I'm doing. I have no pain there, whatsoever. I've been doing that just fine.
What else?
Jennifer: You're learning to drive.
Elise: Oh, yes. Learning to drive. Since I'm 15, I just got my learner's permit and we're trying to learn how to drive but because it's on my right leg, we're having to do some maneuvering there. We're thinking we're going to try and either get a car that doesn't have a console in it so I can move my right leg over and so I'm going drive with my left leg because it's dangerous for me to drive with my right leg because I can't really feel that for the pedals. So, I'm just going to end up driving to my left leg. I can also just take it off but we aren't looking for modifications to the car because I just think that be easier, right? To not have car modifications on it.
Oh, yeah. So, in conclusion, I have no regrets for the surgery. I'm really, really proud of eight-year-old me for choosing the surgery as fast as she did and all the work that she put in so that now fifteen-year-old me can enjoy living a normal life. I have just a normal life. That's really all.
Anna: Elise, you're so cool. I'm such a fan of yours. Okay, we've got a couple more questions. One question I'm going to ask for myself, how often do you feel the need to tell other people — like your mom was saying when you're wearing pants, you can't tell. How often do you tell others that this is something that you've had a rotationplasty or that you use a prosthesis?
Elise: Oh, it's a really good question. Whenever I'm usually with big groups of people for a long amount of time, I'll usually just stand up and be like, "Hey, this is what happened. If you have any questions, I'm extremely open about it." Because that's what I've learned with this is if you're open about it and you are confident in it and the fact that you had it and that just it's what happened and you act like this is normal, everyone else will start to treat you like, "Okay, this is what's happening. She's open about it. She's open to questions. I can ask her any question I want about it and she's going to answer it." So that I usually — whenever I'm in big groups — I usually just tell people about that.
But if I'm not, like in my everyday class, I have seven different classes so I'm not going to stand up until every single class. I usually wait for people to come up and ask me because again I tell people very open about it. Everyone in the school knows that if they have a question about anything just come up and ask me. So, I usually just make people to come up and ask me.
That's happened a few times now but as I start to get older, more people either don't care or they're more scared to come up asking because I — not sure why. But I just wait people to come up and ask me if I'm not in big groups for long periods of time.
Anna: That's great. Valerie, you want to start us off with some more of our participant questions?
Valerie: Yeah. So, to just follow up. Right now you're just talking Elise but what types of device you use when you aren't using your prosthesis? And do you have any different types of assistive devices, any other adaptation, or showering? And Janet also says, "Thank you for sharing so much of your story here." And I think that kind of ties into Gianna's question about any limitations. I think those kind of go hand in hand so if you want to answer that.
Elise: Sure, yeah. So, as far as extra things that I use besides my leg, I only use my prosthetic leg. I used crutches back when I first got my leg back and fourth grade so I would be half on crutches. But whenever I'm walking for long periods of time, I used to put my leg on but now that I'm completely okay in my leg, I know how to use it, I'm really mobile in it, I use that. I do have a running leg though for when I'm on running softball. Anything that requires me to run or be really active, I'll put my running like on for that. But, I basically just use my normal everyday walking leg and my running leg.
Annika: Okay. I have another question here. So, someone asked you how long your physical therapy was.
Jennifer: A solid year and then here I'll jump in. So sorry. Sorry, another question that Elise doesn't remember. Physical therapy, a solid year. We would go down there once a week because we live about an hour away from MD Anderson. So, I guess a year. We would go down there about once a week. And then, the next year would be a little less, maybe average about two to three times a month, and then it dropped off significantly because basically, you do physical therapy until you have reached your goal.
And so, her first goal was to walk well with a gait that you wouldn't be able to tell that she's wearing a prosthetic. And then, she wanted to run so we would go back a few more times just to get some tips on running. So, I'd say, yeah, good solid year is what you could count on.
Valerie: Since your mom was there, I guess. Someone just asked, "Elise and mom, do you have any financial concerns about being able to afford future devices with potential insurance limitations as you become more independent?
Elise: Yes.
Jennifer: Yes. That is a very good question. So, Elise is on our insurance. And of course, she can stay on our insurance until she's 26. So, yes. There is a concern because a prosthetic costs about $20,000 out of pocket if you have no help from insurance. Thankfully, our insurance has approved the legs for her, but if you don't have insurance or you have an insurance that says, "Sorry, you only get one leg every five years." it is a definite concern. So, my advice to any family that is facing this is do your best to put some money to the side if that ever happens. If it ever happens that you need a new leg and insurance says no.
But our experience, and talk with other families, is that the insurance companies do approve legs more often for children because they do understand that the children are growing. But, there is some concern when you become an adult because the insurance companies tend to think that as an adult, you don't need a leg as often. So, yes, there is a financial concern there.
Anna: How often do you need a new leg?
Elise: Well, the last one I had, I had it for about three years, which is the longest I've had a leg, but before then, it was about every year, right?
Jennifer: It's about once a year.
Elise: It's about once a year. So, I just got this new one, nice and shiny black leg. And I bet I'll have it for about two years, two and a half years maybe because I'm still — like she said — I'm still a kid so I can get a new leg. I think it's every year I can get a new leg as a kid but then once I'm over 18, it'll be more like — I've heard from others, it's been every three years, every five years.
Jennifer: Three to five years. Yeah. And kids are much harder on their legs, of course. The wear and tear. So, she got a new leg and it was basically because of wear and tear, not because it wasn't fitting correctly. It wasn't fitting as great but she could have kept using it but it was the wear and tear, which is great because it means she's active.
Elise: Yeah.
Annika: Dr. Valerae, I actually have a couple of questions for you here. So the first one is, "Have you ever found that patients in rural areas have problems finding a prosthesis because there might not be specialized people in their area?"
Dr. Valerae I have not. The majority of my patients actually sent to the prosthetist I work with. Elise and her mom talked about it. Dave comes in and actually talks to the patient, and with the amputations too, talks to the patient before the surgery. You go to their office, you can meet patients with the same procedure, he showed you different prostheses and different options. So, even for my patients who either are rural or live in California, Arkansas, Anderson's such a tertiary referral center. They generally work with Dave. And you don't need a new prosthesis more than every three months and you're coming back to see me anyway, so I have not had the issue of someone with a rotationplasty having a problem with getting a prosthesis.
Annika: And just to follow up on one our question, "Other than appearance, why would someone not choose to have a rotationplasty?"
Dr. Valerae: Because they want their leg to look like their other side and that's what we talked about. So, if I do a limb salvage, no one knows that you had surgery except you have a long incision on front. I think it's hard on kids because they say, "Can I run?" and my answer's like, "If a bear is chasing you, yes, you can run. But short of that, no, that's not your sport." Meanwhile, with amputations in rotationplasties, you can do whatever you want.
I mean, Gillian is a rotationplasty, she's an Olympian. Then I have another girl who's an amputation, who's an Olympian for a downhill snowboarder. Elise is playing softball. She did cross country. These kids have no limitations and that's what they really like. But, some kids want their leg to look exactly like their other leg and they'll accept the limitations. It's completely a personal decision that's made between the patient, the parents, and the physician. And I think it's kind of a joint discussion because there are some patients who are not candidates for certain procedures, but it's really personal preference once you weigh the pros and cons of each procedure.
And, I think we don't do enough rotationplasties because I think the kids do great. And one thing that I told Mrs. Robinson when we first met was my goal was to get her grandkids. Right? So, Elise was nine or seven — How old were you Elise when we met?
Elise: I was eight.
Jennifer: Eight.
Dr. Valerae: So, I've heard you had [crosstalk]. Oh yeah, you're eight. You have to graduate middle school, go to college, go to graduate school, then start dating then, get your graduate degree, then get married, and then had kids. So even at eight, I'm thinking of 30 years down the road. And the rotationplasty, it just lasts and it does well for those entire 30 years. And really, it will do well for her entire 90 or 100 years.
Annika: Okay. And then, this is kind of a question for either you or Elise. So, "Any advice for someone considering the surgery and any negative reactions to your like and how to handle those negative reactions?"
Elise: Do you want to go through advice?
Jennifer: Sure. If somebody is considering the surgery, my advice would be to, if you can, somebody with a rotationplasty, be sure that you, your family, the patient are willing to put in the time and effort for physical therapy and to get yourself back to where you want to be. So, you have to be willing to put in the hard work at physical therapy and it is hard work. And I can't say that it was painful, I mean, Elise sometimes you think, "Oh, physical therapy is painful." And I really didn't see Elise experiencing much pain, but it was a lot of work and you had to commit to it, you had to commit to the goal. And Elise was very focused and committed to the goal of walking again, and she was quite concerned with, "I want to walk well. I don't just want to walk, I want to walk well."
So, that would be my advice. Talk to other families that have had a rotationplasty. Make sure you're comfortable with it. Make sure your child is comfortable with it. And make sure that you are willing to put in the time and effort that it takes to get back to it. And, I'm a big fan of rotationplasty, I think it's a great option. Elise has no limitations but it is not for everybody because if you really want a leg, two legs that look the same, this is not the surgery for you. So you have to really do some soul-searching of what is my goal, what do I really want here?
Dr. Valerae: And just to add to it, I think you should go to a surgeon who's facile in all types of reconstruction for the resections. Right? So, we had a question about that a rotationplasty wasn't discussed and that could just be that the surgeon wasn't comfortable with rotationplasties. So, I would try to find a surgeon who has done quite a few of them because then you can talk to the patients, and then they're actually more comfortable with the outcome themselves.
Elise: And for — What was it you said, negative reactions, right? For negative reactions, I have almost never had like a... What can I say?
Jennifer: Has anybody ever made fun of you for it?
Elise: I know, I know. I've never had a bad reaction where I was actually made fun of for it ever. I have had some questions about it but that's mostly all. What I'd say like how I got there to that was just confidence in the fact that I am an amputee. I talked about it. I was very open about how the fact I was an amputee. I made some jokes about it just to make it seem like it was a normal thing to these people who aren't around amputations normally.
So, first off, that helps me and they're more comfortable around the fact that I am a bit different than them. And, when they go out and see other amputees, they're more comfortable around them because they've already been around one that's very open about it.
I'm just never really had a bad reaction. It's mostly been from adults though. So, the ones that I have almost had a reaction where I'm like, "Oh, that was really weird." They probably should have done something like that. So, I've only had one weird thing with a teacher and where they made a weird comment on it. But usually, it was the kids that were really, really cool about it. They're open about it and they'd ask me questions about it. And, as soon as I told the kids or kids that are younger than me, kids that are my age when I was in 4th grade, 5th grade, 6th grade, they were like, "Okay. This is what happened." and then they just go off of that.
But adults, they were more... I don't know what's the word.
Jennifer: We got more stares from adults. Yeah.
Elise: I got more stairs in adults instead of kids, which is ironic because you think it'd be more the kids, but it's usually more of the adults that are a bit iffy with it.
Dr. Valerae: Right. I mean, you have to realize Elise is amazingly self-composed. I could trot her to talk to every one of my patients to see how to react to your cancer, how to react to your treatment, how to react to your surgery. And that goes about, as to what her mom says, it's not a surgery for everyone and you really had to know your child when you're discussing this type.
So, for a wilting violet, this rotation probably isn't the procedure for them. And there's no wrong or right procedure, right? Everything is personal. Hopefully, your surgeon will never suggest anything that's oncologically wrong, and that's something I also said to the Robinsons when I met them is I'll never suggest anything that is wrong from the scent of cancer and otherwise, we can discuss all types of options.
And looking at the questions, it says "Is there anything that you mentioned that rotationplasty is considered a highly functional procedure? Yet anecdotally, she hears or he hears patient say that the ortho onc is resistant to it." I think it's a little bit historical because patients are initially resistant to it so they can have that and then you can have biases and you kind of think they're unattractive so that you don't want to offer it. But, I think most orthopedic oncologists know it's a great option and some might not want to do it because they don't do it often.
So, just like anyone else, I think surgeons have their own biases. But, you want to find a surgeon who doesn't let their biases limit their decision making
Valerie: Dr. V, how — someone asked, "How would you handle a situation where the adolescent patient wants a rotationplasty but the parents want a limb salvage surgery?
Dr. Valerae: So it's "Dr. Lewis" or "Valerae", not "Valerie". So Valerie really drives me crazy, but Dr. Lewis is fine, Val. But, I tell the family that it's the patient having surgery. So, if they want to make the decision for their limb, then we will completely listen their choices but if the decision is for the child and the parents really need to listen to the children. Which is the same conversation that I have with adults when the husband wants one surgery and the wife wants another surgery.
I mean, a lot of it is a relationship-building and I never like to meet a patient right before you go to the OR. When I mean, right before, I mean weeks, because it's a relationship-building between myself and the patients and the patient's family because we all know cancer doesn't just the patient but it affects the whole family. But you sit and have a discussion. And most parents will acquiesce to their child's wishes because really as parents we're only happy as our least happy child, right? So, you can tell the story of your child being — if your child is unhappy, you'll never be happy. And I think parents are attuned to that as well.
And then, they meet patients and they can talk to patients. And I think, they don't want their kids to have rotationplasties because they're scared of what it looks like or the questions. They're scared of what people say, but I think that's where kind of the patient relations is very important. And I know Elise and her mom have talked to different patients about the procedures and I think that's particularly helpful. And especially with parents, if they talk to other parents and then they see the children, they come over to the wishes of the child.
Annika: Dr. Val, how much time do families and patients usually have to make this decision?
Dr. Valerae: Four months. So they can make that decision during the preoperative chemotherapy. The caveat is if they want an expandable prosthesis, it's only three months because it takes us a month, four to six weeks, to make a custom expandable prosthesis. So, if they're deciding between — I kind of need to know if they're deciding between limb salvage and that they have to have a special prosthesis because that takes a while. But generally, it's three to four months.
But it's not, and you can correct me if I'm wrong, but it's not a decision that time helps, right? Because I feel like more time, you're just perseverating over the same decision and you're not reaching an answer. So, that's something we discussed too. I mean, I do say, "Go home, talk about it, and then come back." But, perseverating over the decision doesn't make it easier, I think it makes it worse actually.
Anna: Just going through some of these other questions that we have here and Janet, yes, you do win the award for most questions for sure. Let's see. Do you, Elise, feel like — as far as how you identify when you talk about like there's a big amputee community — Do you identify as an amputee or do you identify as someone with rotationplasty? Do you feel like there's a group like that you jump to?
Elise: I identify less with the amputees or any kind of amputees that I do cancer patients because even though you can see the amputation and it's a lasting effect for the rest of my life and it's what you can see on the outside, on the inside, it's cancer patients that I relate most to because the amputation to me wasn't that big of a deal. It was a big deal, it was a giant deal, but the chemotherapy is what affected me the most. So, if I had the chance to go with a group of cancer people or amputee people, I'd much rather go with the cancer people because I feel much more at home with them or they understand a lot better than other amputees would. But on the inside, it's the chemo that affected me the most.
Dr. Valerae: I think the data shows that most rotationplasty patients don't identify with amputees or self-identify as amputees. It's like they don't.
Elise: I also feel that it's because having an amputation is already something that's different than other two-legged only people, but even inside of the amputee community, having an amputation that's below the knee but you don't have a knee and it's this really weird amputation. It's not even considered a normal amputation with other amputees. Because an amputee, it's already different enough and then rotationplasty, it's more different they already different enough. I don't know. It's a weird spot to be in.
Dr. Valerae: And as orthopedic oncologists, we generally think of rotationplasties as a form of limb salvage, right? Because we're salvaging the limb and they still have it versus just removing the limb.
Anna: Yes. Dr. Lewis, as far as with with limb salvage, do you see any patients who have had a traditional limb salvage where they've replaced the tibia with cadaver bone or with another material go to rotationplasty if that sciatic nerve is still intact?
Dr. Valerae: So it is a great salvage for a failed prosthesis or infection. Yeah. I can end the sentence there. It's a great salvage for a failed prosthesis or infection because clearly, generally, their sciatic nerve is intact because we've saved their leg. And then, sometimes we just can't get rid of the infection so we take out the prosthesis but then we can do a rotationplasty surgically.
Anna: Elise, is there anything else you wanted to share with us?
Elise: Not that I can think of. Do you have anything?
Jennifer: I would like to underscore that Elise is living a very regular life and nobody treats her differently. The biggest fear that my husband and I had would be that Elise will be treated differently, that people would treat her like she had something weird or she was different or something like that. And, nobody does, like nobody does. Once she started wearing her prosthetic, it has been very rare that certainly nobody's ever said anything. There might be some extra looks but that's to be expected, right? I mean, somebody's wearing a prosthetic, "Hey, that's kind of cool. I'm going to look over there." But, she's not treated differently.
And, I think, like I said, that was her biggest fear, and it did not come to pass. So, I just want people to know other families that might be considering this, she's great. It's fine. It really is.
Dr. Valerae: And I just want to underscore as an orthopedic oncologist, a child is really only great if their parents are great and Elise's parents are great. Right? So, I feel like Elise is doing great because she always was a superstar but her parents were incredibly supportive and grounded during the whole process. And I always laugh that I think I've learned how not to be a terrible parent by watching some of the parents of my patients, and the Robinsons are like — they're amazing.
And you would think this is their only child because Mrs. Robinson looks amazing. She's like one of 20. I mean, she did a great job with Elise with other wonderful kids. They're all well-adjusted. It's just a great family. I'm in a really inspiration as a physician to see Elise grow up.
Anna: Dr. Lewis, we couldn't agree more. We think they're awesome. We're such fans. And I mean, we're a huge fan of you too, Dr. Lewis, so far.
Oh, that's actually a great question. Gianna just ask, "Elise, what about your siblings, was there an adjustment time for them?"
Elise: I can't say for during treatment or soon after that but not really. I mean, you guys came home and told them what happened, right? Like what was going to happen, they prepare them, and they told them about the surgery I was going to have. At the beginning of chemo you guys told them what's going on. Even my little brother, he was two at the time?
Jennifer: He was two.
Elise: He was two. This little two-year-old completely adapted to how his older sister had an amputation, foot's on backwards. I haven't been treated differently with anyone in my family they are all just used to it because we were so young at the time, from Adam was two — How old was Michael?
Jennifer: Michael was 12.
Elise: So, my older brother, he was 12. We were all so young so I've just grown up around them and they know that their middle sister has an amputation and even with that, they go out into the world and they tell people, "Sister has an amputation." and I don't know. They've helped some people, the way we also have amputations. They told them about me and I've gone in contact with them.
Anna: Awesome. We are coming to the end of our time. I know that we could truly talk about this all night long, especially with how wonderful and open Elise and Jennifer you have been and how informative you have been Dr. Lewis. I am so grateful. This is really going to matter to others and it already does looking at our chat. So, I want to say thank you, thank you, thank you to the three of you in particular, Elise, Dr. Lewis, and Jennifer.
More information on this OsteoBites and all of our OsteoBites is on our website at mibagents.org but also on YouTube and wherever you podcast, this particular session will live there. In the coming days, it will be posted and you will receive the links as an attendee. We'll email those right to you.
You want to make sure that you are subscribed to our newsletter and follow us on social media so you get all the MIB intel. We are going to be on a small break for the holiday season, but we will be back with more research, treatment, innovation, and hope on OsteoBites in the new year.
Until then, again, my heartfelt, thanks to Dr. Lewis, Elise for sharing such important information with us today. And I thank also Annika and Valerie for being awesome panelists as always. And thank you all and have a happy and healthy new year.
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