Switching Roles: A Neuro-oncologist Reflects on his Own Experience with a Brain Tumor

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Nath:
And I'm Dr. Audrey Nath.

Dr. Correa:
This is the Brain & Life podcast.

Dr. Nath:
Welcome back to the Brain & Life podcast by the American Academy of Neurology. Daniel, good to see you. I would like to start off with a mailbag comment. Let's do it. Let's do it. I want to hear more from our listeners. So the comment is, "I'd like to hear about acoustic neuroma as well as hydrocephalus, both of which I have. From, Karen." Thank you, Karen.

Dr. Correa:
Ooh. Well, we're here for you, Karen. We got you.

Dr. Nath:
Yes. Yeah, we do. As it turns out, this week, we are going to be speaking with neuro-oncologist, Evan Noch, who himself got an acoustic neuroma and went through surgery, and tells us all about the experience of going through it as a physician and a patient.

Dr. Correa:
Oof. Wow. And was this after the fact? Did he become an neuro-oncologist after his experience in wanting to serve care, or that was even before?

Dr. Nath:
Good point. No, he was already a neuro-oncologist, and then got the brain tumor and got diagnosed, and noticed he had decreased hearing on one side and all of that. So he knew what was happening as he saw his scans, and he was going through the whole process. And he was telling me that the spinal fluid was leaking down his throat, and he was telling me what it tastes like. Just to have the insight that he had into his own experience, is just, it's incredible.

Dr. Correa:
It makes me think back of our episode with Greg O'Brien, where he's a journalist, and his own experience is embedded in the experience of seeing his own Alzheimer's as it's developing. This Evan Noch, as a physician and a neuro--oncologist, really had an acute awareness of what was going on, and yet also experiencing it as his patients and as the community experiences it. Wow.

Dr. Nath:
Exactly. I'm so excited to hear this. And oh, he lives in New York. So I'm assuming you know him.

Dr. Correa:
Oh, yeah. We did pass in the streets. It's a small town. But thank you so much, Karen, for your comments. I hope we get to hear more questions and feedback and requests from our listeners, and we'd love to hear where each of you are listening from.

Dr. Nath:
Yes. Karen, please tell us where you're from. You can tell us on Twitter. And later this month, on January 26th, we are going to hear from Lizzie Acker for the Great British Baking Show about how she's overcome ADHD and dyslexia to go on and wow the judges.

Dr. Correa:
And in our first episode of February, we'll have Dr. Joseph Jebelli. He's the author of How the Mind Changed: A Human History of Our Evolving Brain and In the Pursuit of Memory: The Fight Against Alzheimer's. Really excellent books and have great discussion.

Dr. Nath:
Today's guest is someone who has a very unique perspective on brain tumors. So Evan Noch is a physician-scientist, MD, PhD, and neuro-oncologist who sees patients, and he researches treatments for the brain tumor glioblastoma. He's currently an assistant professor at the Cornell Medical College in New York, but outside of clinic and the hospital and the lab, something else happened. Evan himself became diagnosed with his own brain tumor, which changed the way that he looks at his own work. I'm going to let Evan tell the rest of the story in his own words. Thank you for joining us on the Brain & Life podcast, Evan Noch.

Dr. Evan Noch:
Pleasure to be here.

Dr. Nath:
What happened? When did you first notice? You're a practicing physician, you're busy. When did you start to notice that, huh, something's different? How old were you?

Dr. Evan Noch:
It was back in September of 2020. And at the time, I was 36 years old. And what I would notice was that when I was talking on my cell phone, I started to use the phone more in my left ear than my right ear. What I did was that one of my best friends is a speech language pathologist in Philadelphia.

Dr. Nath:
That's handy, by the way.

Dr. Evan Noch:
Yes, very, very, very, very handy. So I said to my friend, Dan, "I've been having this hearing loss a little bit on my right side." And being the speech pathologist that he is, he said, "Well, there is a mobile app that you can use to perform your own hearing test, essentially, a mobile audiogram."

Dr. Nath:
Wait, seriously?

Dr. Evan Noch:
Yes.

Dr. Nath:
What?

Dr. Evan Noch:
Called Mimi, M-I-M-I. I used it with the same AirPods that I'm using right now, and it does a very good audiogram, much like you get in a doctor's office.

Dr. Nath:
I had no idea. Wow.

Dr. Evan Noch:
And lo and behold, it showed that I had mild hearing loss on my right side. And I already knew that, essentially. It just objectified my own subjective sense that I couldn't hear as well on that side. And I'll preface this by saying it was very subtle. It was really only on the cell phone that I noticed it. I didn't really notice any asymmetry or any major dysfunction. I didn't have any other symptoms. But he said, "Why don't you go to an ENT doctor, an otologist to get this checked out. So I went back to Cornell. And fortunately, we have a great otology department here, and I saw one of my colleagues here at the same institution, Dr. Alexiades. And I had a virtual visit with him and he said, "Well, we'll get an audiogram." And he said, "Well, what we typically do in young people who have an asymmetric hearing loss is we get an MRI just to make sure there is no brain tumor present."

Dr. Nath:
Were you already worried about that?

Dr. Evan Noch:
I was honestly worried about a more aggressive brain tumor that had no connection at all to my hearing changes.

Dr. Nath:
Oh, yeah.

Dr. Evan Noch:
I thought that they would find something incidental in my brain and it's going to have no relationship. So a few days later, I went into a scanner at my own facility. I came right from my lab over to the MRI suite after work. And I'm laying there just thinking about what the scan's going to show, made it through the scan. And the next morning, I got a call from Dr. Alexiades and he said, "You have an acoustic neuroma."

Dr. Nath:
Oh.

Dr. Evan Noch:
And I think I was so shocked.

Dr. Nath:
So that wasn't even on your list of things.

Dr. Evan Noch:
Really it wasn't. I really thought the hearing loss was going to be nothing special and that it probably was an infection or inflammation in my ear at some point because I had very little symptoms. So he didn't think it was likely that there'd be anything structural that was causing these symptoms. And honestly, even though I was so worried about something dangerous, at some point, I really thought, "Well, even though I'm worried, it's really not going to be there. I'm not going to have anything dangerous." And then when he told me about that, I said, "Okay."

Dr. Nath:
Wow.

Dr. Evan Noch:
I was shocked, but I think I wasn't sad or very upset.

Dr. Nath:
For our listeners, because I guess not everyone listening to this is also a neurologist, so an acoustic neuroma refers to an abnormal growth on the acoustic nerve, and that's why it's called that. And this can affect hearing. And they're generally thought to be more on the benign side of tumors-ish, though I'm sure there's always exceptions, and you could tell us about that. So that's essentially why you were to some degree relieved is because this tends to be, quote, "benign" and not a tumor that spreads, but you still have to deal with it.

Dr. Evan Noch:
Yeah. So what he told me was it's a slow-growing tumor, probably a millimeter per year, and it may grow slowly for some time going forward, but it's likely to continue to affect your hearing function, maybe your balance function and maybe other functions in your brainstem. And me being someone who doesn't like things growing in my brain, I said, "I'd prefer to get this taken care of sooner rather than later." I decided that surgery was a better way to go because radiation at a young age has probably a less long-term control rate than it does in someone older.

Dr. Nath:
And you know these things though.

Dr. Evan Noch:
Yeah.

Dr. Nath:
This is your whole job.

Dr. Evan Noch:
Right, right.

Dr. Nath:
I mean, so that's such a different scenario than I think what a lot of people are going through when this is all just hitting them at once, right?

Dr. Evan Noch:
Yeah.

Dr. Nath:
Okay. So then you had to find a surgeon and all that.

Dr. Evan Noch:
It felt a little weird to consider a surgeon at my own institution because these are surgeons that I work with very closely and I consider my friends, and having a friend of yours operate on your brain. So I didn't think that was a good idea. And Dr. Alexiades agreed that that would be a bit awkward, not to mention being in the hospital around the nurses and staff and residents that I also work with. So I had decided to go to another center in New York, which is NYU, which is a major center for these tumor surgeries.

Dr. Nath:
Okay. Okay, so you didn't have to travel very far.

Dr. Evan Noch:
Right. And I'm very fortunate that there are many institutions in the city that do these surgeries, and there's a lot of expertise in this area. So I didn't have to go around looking for multiple opinions. It was pretty straightforward about the options and about what was the best path to take.

Dr. Nath:
And so my best understanding of acoustic neuromas in this type of surgery is that the surgeon wants to remove the abnormal tissue around the acoustic nerve that helps you hear without destroying the acoustic nerve, which seems like, okay, seems simple, but can actually be pretty tricky and complicated when it comes down to the actual anatomy and actually looking at it. Were you scared about that? Were you confident? How did you feel about that going into the surgery, knowing the risks to your hearing?

Dr. Evan Noch:
Well, there are several surgical approaches to these tumors. And some of those approaches, by their nature of how they approach the brain, sacrifice hearing and that nerve along the way. So there are surgical techniques called hearing preservation versus non-hearing preservation techniques. And because my tumor was 2.1 centimeters, which is on the larger side.

Dr. Nath:
Oh, that is large.

Dr. Evan Noch:
So it wasn't a tiny tumor. And once they get more than one to 1.5 centimeters, there's a relatively low likelihood of full hearing preservation, and I was quoted anywhere between 10 to 20% possibility.

Dr. Nath:
Of keeping your hearing?

Dr. Evan Noch:
Of keeping my hearing, yeah.

Dr. Nath:
So you knew there was a good chance you were going to have hearing loss?

Dr. Evan Noch:
Yes, and that particular approach had a lower likelihood that they would be able to fully resect the entire lesion because it's sort of, they come around a bend, and the tumor is beyond the bend. And it's difficult to see that full tumor at that side, and they may not be able to get the full tumor that way.

Dr. Nath:
And the consequence to that, if they don't get the whole thing, is then you're worried that it can grow back and you have to deal with it again.

Dr. Evan Noch:
Yeah, or that I would need radiation after the resection. So I chose a different approach where it's not meant to preserve hearing, and I opted for that approach going in knowing that I would lose the hearing as a result of the surgery.

Dr. Nath:
Oh, wow. Now, that is some interesting calculus that you have to go through as a patient. I'm just thinking about that. If I had to make that decision, what would I have done? And I'm not sure. I think everybody relies on hearing to a different extent depending on their lifestyle and things like that, and how much you listen to music and what sorts of things that you do with your life. Were you worried about losing hearing in one ear having a big impact in your life? Or did you figure you would be able to adapt and get around it, and that's why you were willing to sacrifice that to get rid of this tumor?

Dr. Evan Noch:
Yeah, it's funny. I obviously appreciate music, and I go to a lot of theater and enjoy culture and media. But before this whole incident, I actually had a conversation with my husband and we were commenting, "What would you rather lose or prefer to lose if you had to? Your sight or your hearing?" And we both said hearing. And probably that is more common in most people. And so going into this, I thought, "Okay, I'll lose hearing on one side. Hopefully, it won't be so bad and that I can adapt to this deficit." But really, it was talking to colleagues and friends of family who had lost hearing on one side and told me that their life is fine. They've adjusted. They live a normal life. They enjoy music and culture just the same way they used to, but they just adapted. And it made me feel much more comfortable with this prospect than if I hadn't talked to people who had gone through similar experiences.

Dr. Nath:
That is critical though because otherwise, that's just such a huge decision to make without any other reference or context. I'm just imagining myself. I don't even know what I would do. Wait, why do you have multiple family members who have lost hearing in one side? Just different causes?

Dr. Evan Noch:
Mostly friends of family and friends of friends. Yeah.

Dr. Nath:
Okay, I thought this is going to be a really interesting genetic story.

Dr. Evan Noch:
No, no. Fortunately, no.

Dr. Nath:
Along those lines though, acoustic neuromas can be associated with some genetic abnormalities. Did they test you for that? Do you have any of those?

Dr. Evan Noch:
Not as far as I know. I don't have a bilateral acoustic neuroma, which is often associated with syndromes like NF2. So that is helpful

Dr. Nath:
Neurofibromatosis, for our listeners.

Dr. Evan Noch:
Right.

Dr. Nath:
Okay. So it was just one side, no other genetic findings or abnormalities or anything else to clue you in that there could be other problems happening in your body, basically.

Dr. Evan Noch:
Right.

Dr. Nath:
Okay, so you made the decision. I'm curious, was your surgeon surprised that you chose this aggressive approach that would impair your hearing?

Dr. Evan Noch:
He recommended it.

Dr. Nath:
Oh, really?

Dr. Evan Noch:
He said, "If I were you, I would do the surgery because we have a better chance of getting the tumor fully out." And he was not confident that even in the other hearing preservation approach that he could actually preserve the hearing. So he thought the benefit risk ratio was more in favor of sacrificing hearing in order to take the full tumor out.

Dr. Nath:
So then you made the decision. How did you prepare leading up to this day? I'm just curious. Did you listen to some stuff for one last time or do anything special or you just try not to think about it?

Dr. Evan Noch:
Well, before the surgery, I was with my husband. And I said, "Well, maybe you can say something nice into my right ear just as a goodbye." And so he said, "I love you."

Dr. Nath:
Oh, man. So you did do something to prepare for losing that right-sided hearing. You did.

Dr. Evan Noch:
And I did give myself a full buzz cut on the sides, well, with my barber, so that I had a nice haircut before the surgery.

Dr. Nath:
Okay. You didn't trust the surgeon with that.

Dr. Evan Noch:
I maybe wanted an asymmetric. Yeah, no, I did not. You're exactly right. And I think they appreciated it because then they didn't have to shave my head at all.

Dr. Nath:
That's right.

Dr. Evan Noch:
For the surgery.

Dr. Nath:
These are little things that come up, especially with female patients with long hair, that this can sometimes be a surprise or a shock. Like, "Wait a minute. What haircut am I coming out of this operating room with?" I am glad you brought that up because that is something that patients don't necessarily know about or really think about in advance. And then how long was the procedure?

Dr. Evan Noch:
Yeah, so the procedure was fairly long. It was actually about seven and a half hours.

Dr. Nath:
Oh, whoa. That is long.

Dr. Evan Noch:
And the reason it was so long was because at NYU, they perform complex mapping, cording from the auditory nerve and also from the facial nerve to determine if they're affecting that function because the auditory and facial nerves run right together. And so oftentimes, you can injure the facial nerve if you don't appropriately understand the anatomy and record from the facial nerve during surgery. And unfortunately, and this is more of a reason why this surgery was the right approach, the tumor was very much wrapped around the facial nerve.

Dr. Nath:
Oh, man.

Dr. Evan Noch:
It swung in, I think, a C-like direction. And so it was quite complex for them to preserve facial nerve function and peel the tumor away from the facial nerve.

Dr. Nath:
To summarize this, essentially, every tumor is different and can wrap around different things and be irritating and annoying in different ways. And the facial nerve is the nerve that supplies the muscles in one half of your face. And essentially, if the facial nerve were to be severed, then you might not be able to move half of your face for the rest of your life. So that is a huge thing to be thinking about with this surgery. I mean, we started off by saying like, "Oh yeah, this is a benign tumor." And now, we're talking about facial paralysis and hearing loss and these big things that can really affect your life. So you knew all that going into it as well, that you were going to cross your fingers and hope you can move your face after you came out of the surgery. When you woke up, what was the first thing that you thought or wanted to know?

Dr. Evan Noch:
One was, of course, was my face function preserved? And in the acute period, there's a lot of swelling. So I looked quite unusual because my face was quite asymmetric. And so that worried me, but they said that is likely from the swelling and that the recordings from the facial nerve were good. So they were confident that the function would improve over time.

Dr. Nath:
So you recovered in the hospital, you were swollen. I'm guessing you were in some amount of pain.

Dr. Evan Noch:
You know what's interesting? Brain tumor surgery is not typically associated with severe pain. So I would say my pain was pretty mild, but the bad thing was that I get very nauseous from anesthesia, especially the gas anesthesia.

Dr. Nath:
Oh, gosh. Yeah.

Dr. Evan Noch:
So I was incredibly nauseous, which was worsened by the steroid that they gave me that evening.

Dr. Nath:
Oh.

Dr. Evan Noch:
They gave me a dose of intravenous steroid, which is typical. And I was disappointed about this because I then vomited four times, immediately.

Dr. Nath:
Oh, man.

Dr. Evan Noch:
They gave it to me and I said, I'm going to vomit." They put a bucket, I vomited four times. And I like to pride myself because I had a record of not vomiting for 17 years.

Dr. Nath:
Okay, one, that is a strange flex. Two, that must have been super uncomfortable. I mean, I can only imagine. And now, what that makes me think about is you're a neuro-oncologist. And so many patients who have brain tumors, you need to give steroids in order to decrease the swelling around the tumor so that they can live longer. Has it changed what you're thinking now when you're giving steroids to your patients and high dose steroids?

Dr. Evan Noch:
Yeah, especially, I'm already, I think, aware of steroid side effects and really vigilant about trying to preserve patients' functions who are on steroids and as an outpatient, but what we don't think about in the inpatient setting is this idiosyncratic side effect of giving steroids intravenously. And so even though as doctors, we don't really control the rate at which these steroids are given because these are typically given bedside by the nurses, I'm really aware now of telling patients that they may get very nauseous after we give them intravenous steroids and trying to promote awareness of giving it very slowly. With subsequent doses, I didn't have that effect, and the nurses gave it much, much more slowly.

Dr. Nath:
I didn't know that.

Dr. Evan Noch:
And that seemed to be better for me, yeah.

Dr. Nath:
I mean, that's helpful for all of us to know. It's incredible how various even smaller aspects of this can change your practice or change the way that you look at how you treat these things. How long was it before you could go back to work?

Dr. Evan Noch:
Well, I was in the hospital for 11 days because I had a spinal fluid leak after the surgery.

Dr. Nath:
Oh, man.

Dr. Evan Noch:
The surgeon said that they weren't surprised because they thought that these mastoid air cells, which is in the sinus near your ear, were very airy. So I was kind of an airhead, they like to joke.

Dr. Nath:
Everyone's anatomy is unique.

Dr. Evan Noch:
Exactly. And so I ended up having a lumbar drain placed, which is a catheter into the spinal canal in the lower part of your back...

Dr. Nath:
Oh, man.

Dr. Evan Noch:
... to drain fluid and try to reduce the pressure and prevent the spinal fluid from leaking out through my nose and my ear, and that didn't work. And so I had actually had to go back to the operating room for another surgery.

Dr. Nath:
Oh, jeez.

Dr. Evan Noch:
Where they ended up plugging up my Eustachian tube to try to prevent spinal fluid from going down the Eustachian tube into your throat. And also, they closed off my ear completely. So they essentially did what's called a blind sac closure where they sew up the ear canal, and that prevents the spinal fluid from coming out of your ear.

Dr. Nath:
Oh, so and that's permanent. Ah.

Dr. Evan Noch:
Permanent, right.

Dr. Nath:
So right now, that I can see, you do not have an earbud in your right ear and it is closed off.

Dr. Evan Noch:
Correct.

Dr. Nath:
That's interesting.

Dr. Evan Noch:
Yeah, so I already could not hear out of that ear. So it wasn't functional, but now, you actually can't even stick a finger in there. It's actually here.

Dr. Nath:
Oh, whoa. Now, there's a party trick that I did not see coming.

Dr. Evan Noch:
Right, right, right.

Dr. Nath:
Oh, wow.

Dr. Evan Noch:
And that's pretty rare. The surgeon said they only do this procedure after the surgery I had about once a year.

Dr. Nath:
I've never heard of that happening. I'm curious, does that mean before they closed off your ear, was there cerebral spinal fluid leaking from your ear?

Dr. Evan Noch:
Yeah, it was mostly actually coming out my nose down the Eustachian tube.

Dr. Nath:
Oh, man.

Dr. Evan Noch:
Yeah, and then down my throat. I will say after the second surgery, when I finally did go home, it then actually started coming out my ear again.

Dr. Nath:
Oh, gosh.

Dr. Evan Noch:
And they had to put additional sutures into my ear nubbin to stop that from leaking, and then I went on a medication to help lower my pressure in my head.

Dr. Nath:
Oh, gosh. Yeah.

Dr. Evan Noch:
And that finally did the trick about a month later.

Dr. Nath:
Are you still on that medicine?

Dr. Evan Noch:
No, fortunately. And another thing I learned is that medication made me extremely dehydrated and nauseous. And I ended up going to the ER one day.

Dr. Nath:
Oh my God.

Dr. Evan Noch:
Because I almost fainted because I think I was dehydrated on the medication. So I learned a lot about this one medication that I give to my patients as well called acetazolamide or diamox.

Dr. Nath:
Right. I mean, it is a diuretic. So it makes sense, but it's just fascinating. Once again, it's this benign tumor that you had. And there are so many downstream consequences, some temporary, some permanent, and all of which has changed the way that you look at everything, from this one benign tumor, which I think is just really eye-opening to what it's taught you. So I guess they sutured it a little more. So your ear stopped leaking, eventually. That has to be so disconcerting. I can't even imagine what that must feel like.

Dr. Evan Noch:
Yeah, it felt like... It's like going to the dentist and you feel a lot of pressure when they're maybe doing something to your gums or taking a tooth out maybe, but was much, much more uncomfortable.

Dr. Nath:
Oh my goodness, and strange.

Dr. Evan Noch:
Yeah, it's a strange sensation. Yeah.

Dr. Nath:
It seems like it'd be such an odd feeling, and in your nose as well. And you knew what this was. And I'll say this for our listeners, what he's referring to is cerebral spinal fluid. So the clear fluid that surrounds your brain and spinal cord. And after a surgery like this, then in his case, it was leaking this clear fluid from his ears and apparently nose. And this can happen to people with various sorts of skull injuries. And I'm saying this because sometimes it's not obvious to people what is happening when cerebral spinal fluid is leaking from the nose. Not everyone knows what that is. So do you want to tell us about what that was like compared to having allergies? Just so our listeners have heard about this.

Dr. Evan Noch:
Yeah, that's a good point to make. The spinal fluid, first of all, is very salty.

Dr. Nath:
Oh, that's so weird.

Dr. Evan Noch:
So that's one thing. Yeah. So I know maybe if you have allergies and some sinus drainage runs out your nose, it could taste a little strange. But the taste of spinal fluid is quite salty, and that's what people often will pick up. It tends to be constant and also may change depending on the position of your head, whereas that may not happen to the same degree with allergies, for example.

Dr. Nath:
And so you experienced this. If you laid down or moved your head, you could tell it would change the flow of the stuff.

Dr. Evan Noch:
Yeah. And the particular positioning which typically triggers this is leaning over for at least five minutes. And if you bend over with your nose pointing really far down, the fluid will leak more quickly out your nose. The same thing if you bend over and it's coming out your ear and you put your ear against gravity, the fluid will drain out your ear.

Dr. Nath:
Oh, goodness. Did that happen on accident a few times before this got fixed?

Dr. Evan Noch:
Well, the nose definitely what I would do in the hospital is they would ask me to lean forward for five minutes and see if the fluid picked up, and then it would. And then when I came home, it tended to happen when I laid down at night out my ear because I would be laying down on the pillow, for example, and the fluid would come out my ear.

Dr. Nath:
Oh, wow. So this saga really was not over when you went home.

Dr. Evan Noch:
No, I thought it was. Of course, that's why they discharged me, but it started to leak again. And so that was a big problem.

Dr. Nath:
I've got to say, of all of my neurologist friends, I don't think any of us could say what CSF tastes like. So you truly have a new insight into this that most neurologists don't have now. What else do you think has changed now that you've recovered, thankfully? You seem like you're back to yourself and you're seeing patients again. Is there anything else that has changed when you are talking with patients, especially with new diagnoses or anything like that?

Dr. Evan Noch:
Yeah. Well, I think the main takeaway that I've had from this whole experience is that sharing of myself can potentially help others as it helped me. I was quite scared of, like I said, the single-sided hearing that I would have after surgery, maybe even about the balance function, how long it would take me to get back to work. And I think other patients have the same apprehensions when you tell them, "You have a new brain tumor," or when they know they have a tumor and then they're prepping for surgery. They don't know what to expect; everything from what they're going to feel like when they wake up, to what's the incision going to feel like, to are they going to have numbness, to will their hair grow back where they were shaved.

Dr. Nath:
Oh, that too.

Dr. Evan Noch:
And what kind of neurological function they'll have. What I've tended to do in my clinic is try to talk to patients about this. If they seem open and willing to engage in hearing about my story, what I tend to try to do is to see to what extent I think they will benefit from that if they have apprehension, if they're uncertain. And then I try to chime in and say, "Actually, I went through a similar surgery. In some cases, I gone through the exact same surgery," and I talk about my recovery.

Dr. Nath:
Are they surprised?

Dr. Evan Noch:
Sometimes they are. A couple observant patients or their loved ones notice that I have a surgical scar behind my right ear.

Dr. Nath:
Oh, okay.

Dr. Evan Noch:
And they said, "I could see a scar. So I thought something might have happened to you."

Dr. Nath:
They were just trying to be nice and not bring it up, and then you brought it up.

Dr. Evan Noch:
Yeah.

Dr. Nath:
I think people appreciate the vulnerability. I do. So I'm really glad that you do share your story.

Dr. Evan Noch:
And then all of these cases where I've shared the stories, I found that patients were really receptive and that, they didn't tell me this perhaps directly, but I could sense a reduction of their anxiety about the surgery, or feeling less worried or more confident that the recovery would be better than they expected. And I think that is ultimately the benefit of having gone through experiences your patients go through.

Dr. Nath:
Absolutely.

Dr. Evan Noch:
That you can relate to them, you get it a little bit more, and that what you say to them doesn't feel so empty. Because they like to see that, that you've been there, that you relate to them, and that you're holding their hand throughout the process just like others held your hand when you went through similar struggles in life.

Dr. Nath:
We talk about that amongst physicians, that representation matters. And I think this is a really great example of that. It matters in so many different domains, but including physicians as patients who have been through something similar and aren't just listing off the side effects that are in the textbook, that you know what it was like. Do you find that you refer your patients specifically to some support groups? Or have you found good groups for people given that you learned so much about your condition from other patients before you had your surgery?

Dr. Evan Noch:
For this particular type, there are multiple support groups. Some of those I engaged in, but because I had such a good support network of people who had gone through this, I had multiple conversations on the phone with others from my own support network. But there are numerous patient support groups for acoustic neuromas. Based on the forums on their website, I think are very helpful in delineating what expected recoveries are like.

Dr. Nath:
And so now, you are a physician who has also been a part of support groups as well. And that's good.

Dr. Evan Noch:
Right, right. Exactly. Yeah.

Dr. Nath:
We need more of that. We need to not be so divorced from what the patient experience is.

Dr. Evan Noch:
If the pandemic has taught us anything, is that we have become really disconnected from one another, especially in the medical community, where still to this day, I enter my room with a mask and sometimes goggles. So patients can't see your face, they can't be receptive to your emotions. And that has, I think, significantly impacted our ability to provide adequate care for our patients and to try to really listen to them. Even on video calls, you have the lack of gestures and behaviors that they would see in the office that can make them feel less alone, less vulnerable, for example.

Dr. Nath:
Absolutely. There's so much more to communication than just the words. Even very subtle facial expressions can clue you in that a patient actually has some more questions when they're saying, "No, I'm fine." All those little things can actually give us so much more information. I totally agree. For anyone out there who's listening who may have just been diagnosed either specifically with an acoustic neuroma or another brain tumor, from your perspective, is there anything that you want to tell them? Is there anything that you wish you knew?

Dr. Evan Noch:
I think what I wish I knew going in, and especially with the complications of surgery, were that time heals almost anything. And there were a lot of really restless nights in the hospital, a lot of worry particularly after the surgery about the spinal fluid leak and about the complications that that could entail, that I thought I would never get better, or that something really tragic would happen to me as a result of all of this and that my recovery would not be what I expected. And fortunately, I was in very good hands. And everything with time got much better. And now, I'm living essentially a normal life like I was living before. So I think I do a lot of catastrophizing. I think patients do the same thing often.
And what I would say to patients is that many things health-related, especially a tumor like this one, you can recover from fully. And deficits that you might have or issues you might have after surgery are likely to improve with time. And hopefully, with good physicians, with good support network, you can go back to living just like you were. Actually, after I went through the surgery, numerous patients told me similar things from their experiences, that they recovered from their surgery, they had some deficits, they adjusted. But actually, then they lived a life that was full and meaningful just like it was before the surgery, and they were able to put this past them.

Dr. Nath:
That's incredible. Thank you so much for joining us and telling us the details of this crazy ride that you never asked to go on.

Dr. Evan Noch:
Right. Yeah, my pleasure. It was quite the journey, but I think it's helped me in certain ways in my life. And perhaps most importantly, just living life to the fullest, even if I wasn't doing that before or if I was trying to do that before, doing that even more now.

Dr. Nath:
Oh, that's wonderful. I think that's something everybody can think about and take something away from listening to this. Thank you so much.

Dr. Evan Noch:
Sure. My pleasure.

Dr. Correa:
Thank you again for joining us on The Brain & Life podcast. Follow and subscribe to this podcast so that you don't miss our weekly episodes. You can also sign up to receive the Brain & Life Magazine for free at brainandlife.org.

Dr. Nath:
Also, for each episode, you can find out how to connect with us and our guests, along with great resources in our show notes. You can also reach out by email at blpodcast@brainandlife.org, and you can call in any time and record a question at 612-928-6206.

Dr. Correa:
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Dr. Nath:
A special thanks to the Brain & Life team, including...

Dr. Correa:
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Dr. Nath:
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Dr. Correa:
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Dr. Nath:
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Dr. Correa:
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Dr. Nath:
And Audrey Nath, beaming in from Texas, and on Twitter @AudreyNathMDPhD.

Dr. Correa:
Thank you to our community members that trust us with their health and everyone with neurologic conditions. We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Nath:
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Thank you.

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Dr. Nath:
Thank you.

Dr. Correa:
Thanks again. See you next week.

Switching Roles: A Neuro-oncologist Reflects on his Own Experience with a Brain Tumor

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