Five Doctors Said No and She Lost Her Legs

Jackie (00:00):
So was she failed by individual doctors or was she failed by the system overall?

Dr. Chang (00:09):
You are listening to Secret Services where we discuss the procedures nobody admits to but everyone's curious about. I'm your host, Dr. Christopher Chang. All right, we're back. I'm Dr. Chang.

Jackie (00:24):
I'm Jackie.

Dr. Chang (00:25):
All right. So what's on the schedule for today?

Jackie (00:30):
Before we get into that, you owe me an explanation because you told me you would tell me why you were late today.

Dr. Chang (00:37):
Oh.

Jackie (00:39):
Dr. Chang was late to surgery this morning.

Dr. Chang (00:41):
Not late, but I expected to be there earlier. I promised I would hustle.

Jackie (00:46):
And then he told me he would tell me on the podcast. So I've been waiting all day for this answer.

Dr. Chang (00:51):
Right. So last night my daughter had a birthday party. It was at the backyard. The kids were having a good time and we was cooking pizzas for them and the pizza oven. I got bit up. I got bit up by-

Jackie (01:07):
By mosquitoes?

Dr. Chang (01:08):
And so I was scratching my leg and I was putting on a little bit of steroid cream because the bug bites were driving me crazy. And this morning I slept okay, then I was coming to surgery driving and I just started scratching my knee and I just couldn't shake it. I was losing my mind. It was so itchy right on my kneecap. It's the worst place and it was driving me insane. And I know that you can relate to this because you are a bug bite sufferer. So I had to go back to pick up a little bit of anti-itch cream because it was killing me. And that's why I was like -

Jackie (01:52):
It's horrible.

Dr. Chang (01:53):
I wasn't very far. I was only a few blocks from the house, but I was like, I'm not going to suffer all day like this scratching my leg.

Jackie (02:00):
Yeah, it's horrible. They love me so I understand.

Dr. Chang (02:04):
So this leads into what I was telling you clinically. I was thinking maybe we could talk a little bit about allergies. We have patients that say, "Oh, well, I have an allergy to this. I have allergy to this. I have an allergy to tape. I have an allergy to penicillin. I know when I was a kid in the ICU they gave me Cliosin and my mom told me I have a Cliosin allergy or whatever." And it becomes an identifying thing for them. They're very much like, this is who I am.

Jackie (02:28):
Yes. And it never leaves your chart.

Dr. Chang (02:30):
Right. It's hard because once you have an allergy in your medical chart, it is red line, like do not give the patient this or that. And it doesn't really have any subtlety or nuance to it. It is just like a no-go zone. And so if you have an infection and a penicillin type medication may be the right treatment, you've eliminated a whole class of medicines and then you have to go to the next level or something that could be a little bit more stronger, more expensive, more risky, have other side effects, maybe more strain on your kidneys or your liver or whatever. So I think that people don't think about how it narrows the ability to treat that patient really. And it's hard to fight off an allergy. I think putting those things into your chart as a patient should be very serious in terms of how we classify a reaction.

Jackie (03:31):
Right. And then some people will say they're allergic and then their reaction is just like a side effect, nausea, allergic to epi, makes my heart race.

Dr. Chang (03:43):
Right. And so there's different kinds of adverse reactions that are not necessarily an allergy.

Jackie (03:48):
Right. And so that leads into this anonymous question sort of. This patient said, "I've told four different doctors that something is wrong with me and every one of them has implied it's anxiety. I'm starting to believe them and doubt myself. How do I keep advocating for my own body when the people in the white coats keep telling me I'm fine?" So is it one of those situations where people are just brushing it off, this might not be true?

Dr. Chang (04:13):
Exactly. So sometimes the doctors don't believe or questioning the simplicity of the relationship between whatever adverse reaction or whatever reaction you're having. I have had patients that have had a lot of anxiety, but also you have to think about it as you can have anxiety as well as have an actual problem too. You can have both things.

Jackie (04:38):
Right. Why do you think patients, especially young women, so often get told their symptoms are in their heads?

Dr. Chang (04:45):
Ah, this is such a-

Jackie (04:47):
I know.

Dr. Chang (04:47):
This is such a hot topic and a dangerous territory you're trying to get me into, especially young women. Why would you do this to me? My wife says this all the time. Women's health is complicated and maybe education and medical advancements have not clearly elucidated some of the things that go on in women's health as well as it should be. And so whether you can call that a bias or underserved or understudied disciplines, women's health is not as simple as A, leads to be, leads to C and that's why you have the symptoms. There's a whole milieu of clinical picture of labs, cellular molecules, cellular interactions, hormones, and things that are all changing in men's and women's bodies differently. So it can really make things difficult to diagnose. So I think in women's health, there are a lot of things that we don't understand, both male and female doctors, just because in medicine, in modern medicine, we don't have all the answers. So I think it's tricky. I think women's health is trickier.

Jackie (06:05):
I would say especially in the GYN world, one thing, getting biopsies and cervical biopsies and stuff, a lot of people, they don't even give local to women, stuff like that. It just seems so old school and they're like, "Oh yeah, we don't inject because they don't really have a lot of feeling down there." And it's like, "Well, yes we do."

Dr. Chang (06:25):
That's crazy. I think -

Jackie (06:27):
A lot of GYNs do not use local still to this day.

Dr. Chang (06:30):
And a lot of GYNs are female surgeons, female doctors.

Jackie (06:34):
Yes.

Dr. Chang (06:34):
And I think I might've told you about this. I heard a New York Times podcast or report about how the anesthesia in GYN surgery or during, I think it was during C-sections and stuff like that was not necessarily good anesthesia or there were women who were, so they could still feel things and they're being operated on or delivering their baby in a very traumatic way. And so in those instances, I think there's definitely bias particularly for female patients sometimes because they would say, "Oh, well, of course you're going to feel some pressure or feel some discomfort. You're having a baby or whatever." They almost wouldn't dismiss their concerns. So that is a very scary and unfortunate sort of environment and culture, but certainly I think it needs to change.

Jackie (07:23):
Well, I think that for providers, it's important to just let the patient kind of say their piece, tell me the whole story, listen through it all. And maybe we have a little bias inside like, "Okay, she just has high anxiety." But I think it's important to hear them out and kind of sift through what we recognize as normal anxiety and try to see, okay, is there really a root issue going on in here in the midst of all of this?

Dr. Chang (07:52):
Yeah. As we said before, two things can be true. You can have anxiety, but you could also have real problems and that kind of thing. It's very individual. I mean, we often say, for instance, redheaded patients may have a harder time with anesthesia and need more anesthetic, and why is that? Have we really figured that out? Or we have younger patients that wake up for anesthesia and they tend to be a little bit more feisty. Why is that? Why should a 20-year-old be a little bit harder to wake up calmly than a 50-year-old? There's just some things we don't know, but we've recognized patterns throughout generations of experience in medicine.

Jackie (08:33):
I know the redhead thing time after time again.

Dr. Chang (08:35):
Yeah. But I don't know of any mechanistic or molecular reason to why that happens.

Jackie (08:42):
Yeah. So then have you seen this girl, Megan Dixon from the UK and her legs?

Dr. Chang (08:49):
No, I just knew we were going to talk about it, but I didn't look into it at all. So tell us what about Megan.

Jackie (08:54):
All right. She's a 21-year-old, like I said, from the UK and she is about to undergo a double leg amputation after a rare functional neurological disorder, left her legs locked and bent backward at a 45 degree angle for eight years. So her legs are sloped up. She says she was -

Dr. Chang (09:14):
Hyperextended almost. Look at that picture of her in the wheelchair.

Jackie (09:18):
Right. It doesn't even look real. So it says she was turned away by five surgeons before one agreed to help, by which points to the damage of her knees and said that it was irreversible. Her message to others, if something feels wrong in your body, trust yourself and keep pushing. How does a treatable problem become an untreatable one simply because of how long it took to be taken seriously?

Dr. Chang (09:42):
Well, I know very little about this. So I don't know if she had a treatable problem. I assume what she's having has happened is some contracture of the muscles or maybe she's getting some fusion of the joint.

Jackie (10:03):
It looks so horrible. It's unclear to me how, because the way it's described is the progressive condition, right?

(10:08):
Yeah. I think she's been wheelchair bound since she was younger, like 10 or 11 or something. But still jarring to find out you have to have a double I assume -

Dr. Chang (10:21):
This is an AKA.

Jackie (10:23):
Above knee amputation is what an AKA is.

Dr. Chang (10:26):
The knee joint is compromised here because obviously if you left sort of a stump for the tibialis, the tibia, it wouldn't work.

Jackie (10:38):
I do, man, I feel for patients like this because it just sucks. At the end of the day, you really have to be your own number one advocate and so you just have to keep pushing on and unfortunately that just seems to be the way of the world.

Dr. Chang (10:57):
I will say though from the doctor's standpoint, I mean if you don't know what this is, you don't see this happening or you don't know how to treat it.

Jackie (11:07):
I was going to say that.

Dr. Chang (11:08):
You're a little at a point where you're powerless a little bit, it's not that I don't think that they had a solution and just didn't offer it to her. I think they were sort of not sure what was happening. I don't know really.

Jackie (11:22):
That's what I was going to say. Perhaps the surgeons that she saw, of course we don't have their notes or their findings, their thoughts. Maybe they were just like, "I don't know what this is and I don't think me operating on you is going to make a meaningful difference when I don't know what's going on."

Dr. Chang (11:42):
Yeah, I don't know. There's a lot of layers here. She's probably went from being a kid to being an adult, so I don't know if that went from pediatric to adult orthopedics. She's in the UK, so I don't know if the nationalized healthcare NHS limits her from seeing super specialized people.

Jackie (11:59):
I was going to say that. I mean, we don't deal with that here in America. So you have to be referred, I think. And I think of course I've never lived in the UK, but you do hear stories where it can take months, years to get in to see a specialist. Whereas -

Dr. Chang (12:16):
Especially if you have a slow progressive condition, you may not be like, "Oh, you just had a break. You have to see them."

Jackie (12:22):
So was she failed by individual doctors or was she failed by the system overall?

Dr. Chang (12:27):
Right, right.

Jackie (12:29):
Have you ever seen a case where a delay in care turned a fixable situation into a non-fixable situation?

Dr. Chang (12:39):
I mean, an amputation is the key example. So for instance, in plastics, plastic surgery example would be somebody who had an injury and they had, let's say they were working with a circular saw and they cut off a finger. Well, we would like to see that patient in the emergency room and get that finger reattached or something like that.

Jackie (13:07):
Another Euphoria.

Dr. Chang (13:09):
Really? They love that. They love plastic surgery.

Jackie (13:12):
There was a finger and a toe amputation.

Dr. Chang (13:15):
Sometimes you might transfer the toe to the finger.

Jackie (13:17):
Yeah.

Dr. Chang (13:18):
So the idea is that once it's separated from your body, that part needs blood supply, otherwise it will -

Jackie (13:27):
Put it on ice.

Dr. Chang (13:27):
Start decaying. Right. But if there's a delay in care, you go to, let's say, a local community hospital, then they have to ship you out and send you by ambulance or even helicopter you to a tertiary center where there is an on - call plastic surgeon, and then they got to get them to the operating room and reattach these things that are a microscope or whatever. If there's a significant delay in care or the damage is too severe, essentially you might have to essentially just undergo what we call completion amputation because we don't want to put something dead onto your body and have it die and cause you to get sick or cause other problems. And if you amputate at a certain level, depending on the digit, the hand, the finger, you can actually have a very functional hand and functional life and not be too disabled.

(14:17):
Whereas sometimes if you put a dead finger that can't move and basically necrosis and becomes gangrenous, that can be more debilitating. Everybody wants to be whole and put everything back together, but if there's a significant delay of care, it's not going to be successful. It's probably the wrong thing to do.

Jackie (14:34):
So two things, when I first started working in the operating room and I was super interested in plastic surgery, I was at Georgetown Hospital and we had a huge limb salvage program, which I was shocked to find out, oh, this falls under the category of plastic surgery because it's so out of the realm of what people think for plastic surgery.

Dr. Chang (14:56):
Making sexy legs at Georgetown.

Jackie (14:57):
Right. Yeah. And so I can say that I saw lots of cases, unfortunately a lot of patients that had total knee replacements that had come from states away to us at Georgetown where they had an infection and maybe their orthopedic surgeon thought that they did everything they could. They were like, "Oh no, it's not that bad." And then it got to a point where, no, we had to amputate above the knee because of a delay in care.

Dr. Chang (15:30):
Yeah. I think that's an important thing too. If you're trying to get a functional knee with prosthetic device, if you wait to get, let's say the wound closed or properly repaired or reconstructed and the wound breaks down and eventually the prosthetic gets infected, then the real problem is the prosthetic has to be removed and then you don't have anything holding space -

Jackie (15:59):
Then you have no joint.

Dr. Chang (15:59):
And you have to essentially amputate then because otherwise you have just a floppy piece of skin there and bone that has no purpose but to get in your way and really is just a part of tissue that's going to get infected and die. So that's certainly a very awful complication, but it's definitely possible.

Jackie (16:22):
Yeah. And I think this is a situation where the internet could be used for good if you -

Dr. Chang (16:28):
Never.

Jackie (16:30):
Well, okay, listen, hear me out. If you're having an issue and you feel like people are dismissing you or they don't exactly know what's going on, the good thing about the internet is at least there are resources and especially in America, we don't exactly know how the UK healthcare system is, but if you're like, "I'm having this weird thing going on, no one in my area, especially if you're in a rural area, you could at least go online and look for doctors that specialize in this, reach out to them, go in a forum, see other people that are experiencing this, what they were diagnosed with and you can talk to them, find other doctors to be seen by. So I think at least the patients have that on their side to help them advocate for themselves. You can't believe everything you read on the internet, but at least it does have its resources.

Dr. Chang (17:19):
Right. Exactly. It does make the world a little smaller.

Jackie (17:21):
Yeah, exactly.

Dr. Chang (17:23):
Well, anyway, I think it's important to try to find doctors that you trust and offices and practices that are good listeners, but also are competent in the ability to direct you, even if it's not their expertise, that can make the next step easier to get there to get the help you need.

Jackie (17:44):
And doctors are great resources. If you feel like you're not getting anywhere, you can always also just reach out to the doctor that you're talking to and be like, Hey, if this isn't your specialty, do you know someone who might be better at this? And I think a good doctor would recognize that and -

Dr. Chang (18:00):
Have a network.

Jackie (18:00):
Exactly.

Dr. Chang (18:01):
Right.

Jackie (18:02):
Yeah.

Dr. Chang (18:03):
Well, hopefully that's good information and that if you had anything that was curious or bothering you, you can always leave us a comment and tell us a little bit about things that you want us to address. Or if you're always looking for resources, you can leave us a comment or follow us in the show notes and you can like and subscribe.

Jackie (18:26):
All right. See you next time.

Dr. Chang (18:27):
See you then. Thanks for listening to Secret Services, the podcast where we see everything and say nothing except right here. I'm Dr. Christopher Chang, double board certified plastic surgeon located in Tysons, Virginia. Follow us on TikTok @CongressionalPsurgery or on Instagram @congressionalplasticsurgery. To send us a classified message or to hear more episodes, go to secretservicespodcast.com. Links to everything we talked about on today's show are available in the show notes. Oops, patient's here. We got to go.