How EDS Affects the Ears, Nose, and Throat with Dr. Das (Ep 123)

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Dr. Linda Bluestein: [00:00:00] Welcome back, Every Bendy Body, to the Bendy Bodies podcast with your host and founder, Dr. Linda Bluestein, the hypermobility MD. I am so excited for you to hear this interview today with Dr. Das. Problems in the ear, nose, and throat are so common in people with EDS, and I am no exception. I'm really excited for you to hear what he has to say about problems in the throat, the Problems in the nose and problems in the ears and what we can do about those various different things.

Dr. Das is a U. S. board certified otolaryngologist with a very impressive bio. So please visit his website to read it in its entirety. He is recognized as one of the nation's best sinus surgeons. He is a former research associate of the Center [00:01:00] of Microbial Pathogenesis at the Research Institute Nationwide Children's Hospital.

His NIH funded research. was awarded the 2013 Fowler Award for top basic science research in otolaryngology. Dr. Das suffers from chronic sinusitis following a high school baseball injury and suboptimal surgery. He is committed to providing the best surgical care that can be found anywhere in the United States and across the globe for his patients.

Dr. Das is the Chief Executive Officer for the U. S. Institute for Advanced Sinus Care and Research and the Chief Medical Officer for SoundTrace LLC and the co founder of the Zotarix LLC. I'm so excited to chat with Dr. Das about ear, nose, and throat problems in people with EDS, HSD, MCAS, and POTS. As always, this information is for educational purposes only, and it's not a substitute for personalized medical advice.

Stick around until the very end so you don't miss any of our special hypermobility hacks. So [00:02:00] let's get started.

Dr. Das, it's so great to speak with you. How's your day going? 

Dr. Das: It was going well. I ran into some technical problems with this recording that was a bit stressful, but I am so excited to finally get to talk to you about EDS. 

Dr. Linda Bluestein: We're here now, that's the important thing. And this is, you know, such an important topic and I think so many people are going to find this information so valuable.

So I want to thank you in advance for, for coming to, to chat with me. 

Dr. Das: Oh, yes. No, it's my great honor to talk to your podcast and I'm, you know, just so excited to be part of it. 

Dr. Linda Bluestein: Great. Great. So. We know that there are a lot of various different problems that people with Ehlers Danlos Syndrome experience with, you know, ENT parts of the body, ENT standing for ear, nose, and throat.

Um, you know, and you're, you're an otolaryngologist. Obviously I'll be going into, into that in the introduction. [00:03:00] People will have already heard that part. Um, but we're going to kind of maybe break that down then into those different, um, sections if you, if you will. So I thought maybe we could start with the throat and I thought maybe also I should start by asking, for the purposes of our conversation today, do you think that we should lump together EDS and HSD, or do you think that we should be treating those separately and this really should be a conversation about EDS and ear, nose, and throat type issues?

Dr. Das: I think lumping them makes a lot of sense, um, from a barrier protection problem that, uh, is common to all three, uh, the hyperspectrum mobility disorders and EDS and all connective tissue disorders and some specific things that may run within If there is a true EDS MCAS, you know, POTS triad, uh, then MCAS may be more specific to EDS [00:04:00] over, uh, uh, an HSD, but it's still not clear to me if that's also not, uh, you know, relevant to all three.

So. Yeah. Yes, lumping it with all three is probably better than not. 

Dr. Linda Bluestein: Sure, sure. So, so as we're discussing things, if there's something where you're like, no, this really is, you know, cause of course, I'm glad you mentioned mast cell activation syndrome right away. Cause of course we're going to be discussing that as well.

So, um, yeah, so, so we'll jump in. And we're gonna be talking, um, really about a lot about the triad, right? Those, that combination of, of things. So can you start by telling us what kind of problems you see in, in the throat in this population of patients? 

Dr. Das: Sure. Um, the biggest one I see is, um, frequent sore throats, um, also large tonsils and, and in particular tonsil stones.

Those are, uh, Uh, I don't have any data, or I've never seen this in a study, just anecdotally, [00:05:00] I can tell you that tonsil stones are, seem to be much more frequent in people with, uh, EDS than, uh, the average population, and large tonsils, and as a result, obstructive sleep apnea, um, tonsil stones, chronic tonsillitis, chronic sore throats, definitely seem to be the biggest problem I see.

Dr. Linda Bluestein: Interesting. I went through a period of my life where I kept getting recurrent sore throat without infection and every single time this would start, you know, you're, you know, you're waiting, right? You're waiting for the rest of the symptoms. Yeah. That tend to, yeah, that tend to come along with that. And I remember somewhere along the way, finally going in for an evaluation and I was literally told, by the ENT physician, because I have a diagnosis of hypermobile EDS.

I was told by that ENT physician, well, EDS does not affect the airway. Well, I'm an anesthesiologist and I'm thinking to myself, pretty sure I disagree with you, but 

Dr. Das: yeah. Yes. Uh, I think [00:06:00] a common kind of victim trauma syndrome as part of EDS is realizing that. 98 percent of doctors don't have any familiarity with this disease and you, uh, soon become an expert yourself as a patient, uh, more so than most doctors.

And then you really seek out the advice of the few doctors who do have some background with it. And so that has been my experience as well. 

Dr. Linda Bluestein: Yeah. Yeah, exactly. Um, okay. So what about, uh, I feel like another thing that's really common is dysphagia or difficulty swallowing. Um, and I don't know if that would be appropriate to consider now as part of throat or if we should dive deeper first into those things that you mentioned, sore throat, tonsil stones.

Sure. Yeah. 

Dr. Das: No, I definitely agree. Dysphagia. Yeah. Yeah. Yeah. And kind of dyskinetic esophageal disorders where you have, uh, esophageal dysmotility syndromes, um, [00:07:00] are, are also very common. I completely agree. It's kind of random that, uh, you know, your throat, uh, your nose and throat takes care of all of your throat, kind of.

Anterior to your airway. Uh, we don't do the esophagus very much. We, you know, let GI do that. And then the spine is, you know, ortho or neuro. So we're really only kind of the half of the throat. Um, and as a result, you know, that, uh, esophagus doesn't necessarily come to the forefront of my mind because we tend to refer those patients to GI, but definitely I, that is also a huge issue.

Dr. Linda Bluestein: And, what about, well, I think this would be, what about globus sensation? Is that something that 

Dr. Das: Yes, globus, and globus can come from a variety of problems. Sinus drainage causing globus, chronic tonsillitis and, you know, chronic sore throats causing those symptoms from your lingual tonsils being big or, you know, having things.[00:08:00] 

And reflux, silent reflux is a very common problem that can cause globus. So. Globus is kind of the harbinger of, of a bigger problem somewhere else, but a lot of causes can cause that foreign body sensation. 

Dr. Linda Bluestein: Another thing that I think would be interesting to talk about would be oral allergy syndrome. Can you tell us what that is and is that more common in this population?

Dr. Das: Yeah, I, um, Don't know the specifics of oral allergy syndrome are kind of changing and so I um, I haven't been, uh, kind of versed on the latest of oral allergy syndrome, but, but we, you know, our immune system develops in two ways. One where we take antigens, uh, through the nose and through the skin. And that tends to create a more of an inflammatory and atopic kind of anti response.

And, and things that are taken, um, orally, um, tend to [00:09:00] be, um, a, Quieting responses at child. So then we then get this problem and it's common in the EDS where certain foods and certain, um, you know, tree nuts, vegetables, those, uh, things that otherwise should have been, uh, Uh, quieted when between the ages of zero and two where our body sees that as a, as a, uh, healthy antigen, our body slowly develops, um, an immune response to those, those, uh, and the latest data, Is we think, and this is why this may be more common in EDS, we know we've learned in atopic dermatitis that if people's skin barriers break down and those antigens get absorbed initially in our body through our skin, then our body will see those proteins typically as foreign and a problem and so, um, you know, for example, certain fruits or vegetables or things, if [00:10:00] we're really getting those proteins Exposed to our skin more than our, our mouth or eating them, uh, at a particular, at a young age, we could develop an allergic response.

So then when we have that tree nod or we have, uh, you know, that fruit, we can get oral allergy. So oral allergy syndrome is, uh, particularly a result of a loss of skin barrier function, we think, and definitely more common in, in EDS patients and people with, uh, connective tissue disorders. 

Dr. Linda Bluestein: Interesting. So if you are If you have a young child at home, which definitely there's going to be people listening who do, what can be done in order to minimize, if anything, minimize the chances of that child developing allergies as they grow up?

Dr. Das: Oh, that is such a great question. Um, number one, between the ages of zero and one, we need to probably be letting our children eat as many different things as possible. Eat as many, um, [00:11:00] uh, you know, if you're, you have a family, uh, allergy to shrimp. It's important that your children between zero and one start to eat shrimp.

Uh, if you have allergies to peanuts, you know, you guys are terrified to have peanuts in your house. You need to have your children between zero and, you know, one to have peanuts for the first time. And so, uh, exposure to Letting kids eat dirt, letting kids eat, you know, mushrooms, letting kids, uh, um, eat absolutely everything possible between zero and one is probably extremely protective from, uh, developing, uh, allergies.

And now on the other hand, uh, we now know that phthalates and isocyanates, um, uh, uh, chemicals that primarily come from catalytic converters of cars, um, are harmful to our barrier production, so exposure to soaps and chemicals break down our skin barriers and allow these antigens to pass through our skin, and then our body sees them [00:12:00] as problematic or foreign, so another thing is, you know, between the ages of zero and two, To minimize baths, minimize soap exposure, really, um, you know, the oral hygiene hypothesis and how farmers children are, seem to be so much healthier than the rest of the population probably is from these chemicals breaking down our skin barrier.

So we want to eat dirt and we want to have, you know, uh, not soaps wash the dirt off of our body. That is kind of this goal. Counterproductive kind of counterintuitive thing that we've really learned in the last decade or so. 

Dr. Linda Bluestein: That's fascinating. My, my husband is a, is a surgeon, he's a urologist and you know, he and I are both pretty big germaphobes and we were when our kids were little and so if either of my kids are listening to this, they're going to be like, yeah, 

Dr. Das: you 

Dr. Linda Bluestein: really screwed us up.

Dr. Das: Right. Right. Right. That's so, you and. And everyone, you know, nurses or doctors, we, you know, [00:13:00] there is a lot of truth that, you know, bad bacteria are harmful, but the world flips once our thymus starts, stops working, which is around the age of two and three. And so, um, before the ages of two, we need our kids to be as dirty as possible.

And then after two or three, it makes some sense to keep them cleaner. 

Dr. Linda Bluestein: Okay, and you mentioned the thymus. Could you just explain what that is? Oh, sure. Yeah, sorry. 

Dr. Das: So that's, um, yes, no, very common thing we take these medical terms for granted. So, um, when we are, um, Babies. Uh, we have two different types of immune systems that are very unique before we get older.

One, before that, before we're born, we, um, have the benefit of getting a lot of our antibodies and, uh, protections from our mom. And so those just, uh, transfer straight into our bloodstream, um, and, uh, provide a lot of protection for when we're little also through breast milk. And so, um, Breastfeeding [00:14:00] seems to be protective from an immune situation, um, uh, as a child.

But, uh, so as long as we don't get anything terrible, like a god awful, you know, bacteria that could kill us, or really bad viruses, uh, the, what is happening between the ages of zero and, you know, about two is we have this gland in our neck called our thymus and it is basically um, um, sending these blocking antibodies so everything that our immune system is learning it's saying hey not yet these are fine you know the foods you're eating this is normal the rice that you're getting is fine the the Even, you know, random things like all the exposures we're getting that, you know, the lavender plants and the tree pollen in this, in Ohio and, you know, all the unique things playing in the grass and eating the, the dirt and the, you know, the, in your grass, those are all bacteria that are normal and don't create an immune response.

That is created by this gland in our neck called our thymus, which, uh, [00:15:00] is teaching our immune system to, uh, not do anything. That gland then, uh, on its own basically stops functioning by the age of about two to three. And so then everything we see that's new and foreign after the age of two to three, our body is like, whoa, this is something I've never seen before.

It could be a parasite. That's really, um, before the year 1500, the biggest killer of mammals and humans were parasites. So tapeworms and hookworms and, uh, Fly's flying into our nose and laying eggs in our sinuses or, um, uh, different, different types of, uh, of parasites and malaria is still a parasite, but, um, for the most part in the Western, um, hemisphere in the last 200 years, we have wiped out parasites, but the massive arm of our immune system is to fight parasites, and so, um, That arm of our immune system, uh, especially when we have no exposures to anything and then [00:16:00] we get a little bit of exposure then thinks all these things are parasitic and it's creating an allergic response like the thick mucus was to really block those flies from flying up our nose so we get thick thick mucus or polyps in our nose or polyps in our colon are to prevent those worms from being able to penetrate our body or the itchiness and we're rupturing our skin with hives.

That's to really allow the worm to get out of our body. So a lot of the, uh, What we call type 2 immune problems that are very common in EDS patients are a response to parasites and it comes from the lack of barrier function which allows these chemicals and things to penetrate our body and mimic that parasite site.

Dr. Linda Bluestein: Wow, that's so fascinating. So fascinating how our immune system evolves in those first couple of years and I hope, uh, pediatricians are knowledgeable enough about this because, uh, I've Feel like I feel like when my kids were growing up that that we didn't know these kind of [00:17:00] things. So I don't know if they are now, but that's really important.

Yeah. 

Dr. Das: Yeah. No, you're, you're absolutely right. We have kind of, kind of the history of humanity has swung from one end to the other where. Um, you know, before we had antibodies, we detected bacteria in the 1880s and, uh, developed antibiotics in the 1940s. Before that, we had a lot of infant deaths from a bacterial infection, you know, when a baby was born and they would get a bacteria, but we have come so far from that where we have antibiotics in our food systems.

We have antibiotic drops given to our children. Our babies right when they're born, you know, at a drop of a hat, we will, you know, the slightest fever, our Children will get a lumpar puncture and uh, an IV and if it's right away because we just now do not air on the side of any bacterial infection, killing our Infants, but, but the downside of that is we've become so clean of a society and we're not exposed to any bacteria and these [00:18:00] chemicals break down our skin that it tricks our body into thinking we have parasitic problems, but not antibacterial problems.

Dr. Linda Bluestein: I want to circle back to the, the throat things that we were talking about at the, in the beginning. If somebody says, Oh, well, I definitely have that, you know, recurrent sore throat without infection type of a situation, um, and, or, you know, the enlarged tonsils or the tonsil stones, those were the three things that you kind of said are most common.

What can people do about those things? 

Dr. Das: Yeah, that's a great question. Um, and tough, um, as a general rule, I like to tell my fellow EDS sufferers, um, to avoid surgery as much as possible. Our, our tissue, uh, we, you know, we have breakdown and are kind of our barrier functions, but even more so is we have problems in wound healing.

And so when we have surgery, uh, our tissue does not heal as well. Our nerves can cross wire. So surgery is, um, A big [00:19:00] problem for people with connective tissue disorders. On the other hand, um, people who, I, I think the reason people get chronic tonsillitis is our tonsils, one, are actually, I think, get bigger.

Our crypts are bigger, the tissue is looser, and so they fill and take a bigger volume, and that can cause obstructive sleep apnea problems, breathing problems, and so they, um, potentially are, you know, Uh, um, good to get, you have your tonsils removed. Another issue is we have more space, um, behind in our, what's called our peritonsal area or retropharyngeal area where bacteria can hide behind our tonsils and become kind of a chronic infection and chronic, and, and another problem is a bacteria and EDS patients can get deep into our tissues.

They can bypass the, kind of the surface lining and get deeper in between the cells and inside the cells and so the throat behind your tonsils is a kind of a safe space for these bacteria to be able to to live and keep cause chronic problems. So [00:20:00] I, um, for people who suffer for sore throats and chronic tonsils, um, I, I recommend typically maybe twice the length of antibiotics that other Uh, uh, primary care provider might give us, based on a guideline, uh, people with EDS often need longer antibiotics and heal slower from antibiotics than the average people.

And then if you did, did, uh, need to have surgery, like you had very huge tonsils or it was causing you to not sleep well or to gain weight or which, you know, then could cause more problems, um, there is a type of surgical technique called an intracapsular tonsillectomy that, um You know, a small percentage of our surgeons are using, and that makes a lot of sense to me to have.

That minimizes the trauma to your deeper tissues, and it may not be as complete of a tonsillectomy as the, as the older techniques, but, um, is much less traumatic, and I think, uh, would serve our So, 

Dr. Linda Bluestein: that's a fantastic, [00:21:00] very, very specific tip. So that's, that's really, really great. I had two follow up thoughts.

One was, I love that you said about recovering from antibiotics. I just finished a course of antibiotics for sinusitis and I'm Yeah, it's right, no small thing to be on antibiotics and then, and then definitely getting that gut microbiome back, uh, definitely so important. And I wanted to ask about the tonsil stones because honestly, I totally forgot that I went through a period of my life where I had those tonsil stones.

It was really problematic for a while and then now knock on wood, I don't, I don't get them anymore. Have you seen that before where people have them, but then They resolve. Yeah, 

Dr. Das: yes, yeah, oh, very common. Our tonsil tissue, it's part of a group of tissue called mucosal associated lymphoid tissue or MALT, um, that as we get older, naturally shrinks, so people by the, by their 20s or so, um, not EDS patients as much, [00:22:00] but, uh, the average population, your, what we call your adenoids, which are a group of your, what we call pharyngeal tonsils, our tonsils are kind of like this ring of tissue in the back of our throat, so the, Upper top we call our adenoids, the sides we call our tonsils or palatine tonsils, and our bottoms we call lingual tonsils, but it's like this ring of tissue to monitor for bacteria, and that's what our tonsil tissue do.

They, um, they allow food particles to get stuck in there and Allow bacteria to grow and then it tells our body, Hey, this bacteria just lives on our food. They're not a problem and to ignore them. And so the problem with EDS patients, I'm not sure this is, I don't have any science to state this, but I've seen this just throughout my career is we get larger crypts and larger tonsils.

So tonsils have these little tiny crypts to allow bits of food to fall in. So you Some, a small amount of bacteria can grow and our body [00:23:00] can detect that bacteria. We have bigger crypts, so a huger chunks of, of food fall. And if you can imagine like the world's biggest plaque ball, you know, that's what, um, uh, tonsil stone is.

And it's just pure bacteria under a microscope. I mean, a massive amount of bacteria and. You know, if they become anaerobic, they smell as bad as poop. They, you know, they can be just God awful, but they're just these massive collections of bacteria because our tonsils are so big. And so, but naturally once we hit our thirties or so, our tonsils start to shrink and then we get back to like a normal size tonsil.

And then we actually, you know, a little later than the average population, but in our forties and fifties, our tonsils become small and then eventually it'll go away on their own. 

Dr. Linda Bluestein: Interesting. Um, and, and for those that are, uh, listening and not watching on YouTube, uh, Dr. Das was holding up his hands in like two half circles and definitely you may want to check out the YouTube, [00:24:00] uh, portion of this video.

Cause you know, he was also pointing to the front of his throat when he was talking about the thymus. And so it might be helpful to check out the YouTube video as well. Cause I, I always do it. encourage people to point to things like that because it is it is beneficial. 

Dr. Das: Yeah, so second nature. Yeah, exactly.

I'm sure, 

Dr. Linda Bluestein: yeah, I'm sure whenever you're talking to a patient. 

Dr. Das: Right, 

Dr. Linda Bluestein: yeah, for sure, for sure. Um, so I would imagine that, uh, dryness in the throat would also be common as well, is that, is that? 

Dr. Das: Yeah, um, yes, dryness makes me a little more concerned, um, Uh, dryness is hard for us because, uh, it really depends on the environment you live in.

Like someone growing up in Colorado, very different from somebody growing up in Miami. And so the environment that we're in really affects the kind of level of dryness in our throat. But, uh, EDS [00:25:00] patients, so the most problematic dryness can sometimes occur. When our immune system starts to attack our salivary glands.

And so EDS patients where bacteria can actually, like I said, get deep into our tissues. If the bacteria then can, you know, get into our saliva, salivary gland tissue, or deeper areas, and then our immune system sees it and attacks it, and then the, our salivary glands kind of are Byproduct and get damaged from that attack, that makes me start to worry that, you know, your bacterial problem is much deeper or it could be an immune problem that's now starting to attack your own body.

And so I, I start to, uh, engage my rheumatology colleagues and do like minor salivary gland biopsies and things like that to, to look for deeper problems. But, um, In general, yes, I think, um, you know, dryness is a more common problem in EDS and it kind of relates to where they, where people live in terms of how I try to go about taking [00:26:00] care of it.

Dr. Linda Bluestein: Sure. And what about the larynx? So, in terms of the vocal cords themselves, uh, do you see much in the way of vocal cord dysfunction? 

Dr. Das: Uh, the biggest thing I see The other thing that I have not noticed until somebody brought this to my attention and EDS conference was, um, we, people often with EDS speak in a, uh, you know, without, So, uh, what we call, you know, excellent, uh, vocal, um, uh, health, like where we're having what are our true vocal cords vibrate against each other.

Often with EDS people have their false, um, vocal cords and they use that for speech, myself included. Um, and then, you know, there's these things called a glottic fry that sometimes people talk with, but basically, um, we, we don't talk with. The best vocal health in terms of our, our, um, our true vocal cords vibrating against each other, which is a result of a lot of [00:27:00] laxity and a lot of postural issues, um, and can be trained to be improved.

And so, uh, I, we do see a lot of, uh, voice problems now. And now there's a, when we think of, um, vocal cord dysfunction, uh, that often, uh, purports to a problem where our vocal cords are in a perfectly closing when they shouldn't be, or opening when they shouldn't be. And that can come from a lot of silent reflux and people with.

EDS and HSD um, get a lot of hiatal hernias where a part of your stomach is pooching over your diaphragm so you get a lot of heartburn and reflux and that reflux then uh, washing on your vocal cords all the time can make you have vocal cord problems as well to the point where you might feel like you're choking even where your vocal cords slam shut when they should be open and uh, we call that primary vocal cord dysfunction and um, That is a problem that we see a lot as well.

Dr. Linda Bluestein: I, I was smiling when you said about the vocal fry, cause I [00:28:00] was, or no, glottic fry, because I worked with a speech there. I had speech therapy for a while and that's what they called what I was doing, I guess. Um, and I feel like I could probably benefit from that, from doing that again. 

Dr. Das: Same. And then like when I use good, I don't think that I can either.

My voice is so different. I feel like I'm an impostor trying to talk. And they're like, that's how your voice should be, Shu. And 

Dr. Linda Bluestein: so, 

Dr. Das: so, yeah. It's very, very common. And so, 

Dr. Linda Bluestein: Interesting. What about biphed uvula? Is that something that 

Dr. Das: I, um, no, I don't think that I. To my knowledge, a bifid uvula is on the spectrum of problems where you can get at the most severe and a cleft palate and a cleft lip and a bifid uvula is kind of the start of the poor union of our skull at birth and I have not [00:29:00] known that to be a problem with, uh, Uh, EDS, um, but honestly, if somebody showed me data that that was, I, it would be interesting, but I, that to me, I've always thought of as a problem of malunion of different plates and I, there, I, I, I'm sure there's a genetic component to that somehow, but in that, in that fusion disorder, um, to me, my guess is it might be more, um, toxins, uh, to the mom, uh, you know, in utero from the mom in utero or a genetic issue that might be separate from EDS, but I, but it's, I've always known that to be a genetic problem from birth.

Um, and, uh, 

Dr. Linda Bluestein: yeah, I think that is more of a, um, Something that I've seen on, you know, on the tables of like red flags for the genetically, the ones that we can genetically determine. So the non hypermobile forms of EDS and, and, you know, osteogenesis imperfecta and Louie Dietz and those kinds of things. But [00:30:00] I don't remember on that table, like, Which ones that the bifid uvula, um, correlated with.

So yeah, I 

Dr. Das: mean, if, if failures of union, uh, throughout our body, uh, are related, they, you know, that is something I didn't realize. 

Dr. Linda Bluestein: Yeah. So I want to dive into, um, I want to dive into the nose. Um, so, so let, let's just, Uh, I want to, I want to first ask what problems you see, uh, most commonly in the nose. And then after you kind of tell me what that, what those are, we're going to take a quick break and then we're going to kind of come back and talk more about the nose.

But first, can you just tell me what things you see most commonly? 

Dr. Das: Sure. Um, by far, oh, in a way, the most common I see are, you know, what, Gets lumped into a group called non allergic rhinitis, where somebody says they have a lot of allergies, uh, they get congested, uh, runny nose, post nasal drainage, then they go to their doctor and they're like, everything looks [00:31:00] fine, or you tested negative for allergies and you're fine, or they get Flonase, which is, you know, very reflexive for us to give, and then people come back and say the Flonase is making me a little bit worse, and they're like, well, we'll send you to ENT and everything looks fine, and, you know, I'm not sure what's going on.

All right. It's like, you know, EDS related MCAS in a nutshell. And then we also see people have problems with chronic sinusitis where, you know, somebody else gets a cold, they get the cold, it becomes a sinus infection. For somebody else, they get over it in a week or two and for For us, it lasts for a month and then we get another cold and it's another month and you feel like you're sick all winter.

You're tired of complaining about being sick, but you basically are sick all winter long and finally get some relief maybe in the spring or summer and then it starts again and you feel like you just deal with chronic sinusitis a lot longer than the average person. I see that probably number two. And then, um, Number three, [00:32:00] I take care of a very rare group of patients who have a problem called empty nose syndrome.

And that problem often comes from surgery to your inferior turbinates for often, I think the MCAS problem, then poor healing from that turbinate surgery. And then now having problems, severe problems from, you know, turbinate surgery that you didn't heal well from. So I see a lot of people with that, uh, problem.

Group of problems as well. Um, those are probably the biggest things, uh, older men as, uh, in their fifties and sixties, we get our nose starts to collapse. And so a lot of nasal valve collapse and problems breathing that, uh, we have some new technologies that can help. And so, um, Those were probably the top three.

Dr. Linda Bluestein: I really want to dig into empty nose syndrome and also want to talk about Flonase because I know I heard you make a comment about that once before. We're going to take a quick break and then when we come back, I want to ask you [00:33:00] what your thoughts are on Flonase because I think I heard you once say that you were not a fan and a lot of people are prescribed Flonase.

So we're going to take a quick break and when we come back, we're going to talk about that specifically. So we'll be right back.

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So we're back with Dr. Das and I feel like this is kind of a selfish like chance for me to get this incredible consult because I'm taking advantage of asking about all my own, all my own problems. Um, so, so anyway, so let's, let's go back to Flonase and I would love to hear what your thoughts are on that particular medication.

Dr. Das: Sure. Um, so Flonase, uh, uh, is a, you know, it's the classic intranasal steroid, uh, was [00:35:00] developed by Glaxo many decades ago, um, and was really a complete wonder drug for, uh, allergic rhinitis. Um, so people inhale, uh, and pollen or, you know, cat hair or cat dander, um, protein. It causes, uh, the front of our inferior turbinate to swell.

We're very congested, we have, you know, sneezing, um, drainage, and then we take the spray, it's just like that pollen approach, um, molecule, it hits the exact same spot, very sticky, causes that area to shrink, and you breathe tremendously better, and you're kind of back to how you were, um, and so it was this, you know, It's a hugely valuable drug for, uh, 30 million Americans suffering from allergic rhinitis.

Uh, the problem is, um, for people with connective tissue disorders, we're already, you know, imagine everyone else's tissues are like this, and we're kind of like, uh, this, sorry, I'm talking with my hands again, like, um, we have very [00:36:00] poor connective tissue. Junctions between our cells and we have inner interstitial areas and we just are too elastic and we, you know, are very stretchy.

And so steroids work by, um, thinning the linings of our tissues. And so they, they block collagen production. They block, uh, I mean, uh, Flonase is the ultimate catabolic steroid. So it's the opposite of a, you know, anabolic steroid from weightlifting. So it breaks down your tissues. And so. Um, breaking down the lining of our nose at the most important area where we need a barrier, you know, will give you a short term relief, but a much, much longer term problem.

And again, the problem with EDS patients is a lot of them don't have a true allergy to a, um, uh, protein where you have a, Well, we have these proteins called antibodies and a special type called an IgE antibody which binds to like the, you know, tree pollen and then it causes the histamine in a mast cell to all [00:37:00] of a sudden get released.

Our problem is the, um, that tree pollen just goes right by it and goes, you know, can go deep or more. Likely that bacteria can go right into our cells and just live there and cause problems. So we have a steroid now that's making us even more stretchy. You're going to potentially cause longer problems.

The skin's going to break down even more, bleed more. You have access of bacteria now to our bloodstream. So steroids are going to make us even stronger. Net long term harmful for EDS patients. We need to do the opposite. We need anabolic steroids. We need to lift weights. We need to get stronger. We, um, we need things that don't break down our body.

We're already at the, you know, at the edge of what our body can tolerate. 

Dr. Linda Bluestein: Oh, that's so important. That's such great information. And if people don't get anything else out of that episode, out of this episode, I should say, that right there, that's solid gold information. So thank you for sharing that. Cause that's, that's [00:38:00] huge.

Yeah. 

Dr. Das: Yeah. And on, to, on top of that, to even reemphasize what you're saying is doctors, we reflexively give steroids for problems when we don't understand them. So if you have EDS, Really, I mean, I want you to have two or three opinions of two or three doctors and ideally an EDS specialist saying, I know steroids are bad, but in your case, you know, I really think you should try them before you ever take any steroids of any type.

Dr. Linda Bluestein: Excellent. Excellent advice. Yeah. That's so important. That's great. Um, okay. So I want to come back to empty nose syndrome because I had a ethmoidectomy before I realized that that was a bad idea for me probably. And uh, as I've read about this, it's like, Oh, I think, I think I have this, you know, um, what, if anything, can you do about empty nose syndrome?

Dr. Das: Oh gosh. Yeah. Yeah. Um, Uh, I'm probably one of maybe three or four doctors who [00:39:00] are actively trying to, um, try different things like cartilage implants. And I think I'm the only doctor in the country that's trying platelet rich plasma, um, and kind of stems, you know, we take, uh, fat from your body and, uh, centrifuge it to try to, uh, Harvest the stromal vascular fraction and the mesenchymal stem cells from that, uh, tissue and try to re inject that into our turbinates to try to cause more collagen production and more tissue, uh, health.

And so, um, it's a very, very difficult problem once you have it. Um, if you have it, you really need to seek, uh, very experienced, uh, patients. Otolaryngologist, of which there's only a handful, I think, that I would recommend my patients to go see in the country. Uh, it's a very, it's a syndrome where, again, most people don't understand EDS, most people don't understand MPNO syndrome, and, um, uh, there are a ton of physicians who just [00:40:00] completely discount it.

They're like, I've done the same operation a thousand times on people, and all, all, The other thousand have done really well and now you're doing really poorly. It must be in your head or you must have an anxiety disorder. If something's wrong with you and they can't, uh, come to terms with somebody could have a rare connective tissue disorder or a rare, you know, um, a nerve disorder or a rare vitamin transporter problem or something rare.

That makes them have a very bad outcome with surgery, which is, you know, rare, but happens. 

Dr. Linda Bluestein: Yeah, no, that, uh, that definitely makes sense. And we know that, uh, uh, transitioning a little bit, but staying in the nose, uh, CSF leak, spontaneous CSF leak is something that happens, um, and people can get, can get, Clear rhinorrhea or clear discharge, uh, from the nose with CSF leaks, is there a way that you, um, would be able to determine if that's a CSF leak or if it's just, you know, a discharge for another reason?

Dr. Das: Yes. [00:41:00] Now that problem is much more common. That one, um, you know, we'll get the attention of your ENT and they will, you know, legitimately work that problem up. And so that one is not. If you have, I would recommend going to a fellowship trained sinus doctor, ideally at an academic center, and you should get excellent care.

Um, but yes, we do have a specific test, it's called a beta 2 transferrin, and so we can, um, take your, uh, nasal secretion and send that off, and we can test for an intermediate filament protein in your, that's only found in your brain fluid, and know that it's brain fluid. Also, we have these, uh, tests, like the halo sign, like, uh, blood kind of, uh, stays Uh, red, and the hemoglobin kind of spreads, so it doesn't, it stays as a complete red drop, whereas if you have, uh, CSF, like, you get this little halo of, uh, clear fluid that, uh, you know, just dissipates from the central mucus, and [00:42:00] so it gives us a sign that this could be CSF, and so, also, CSF, tends to drip like a faucet.

It's extremely thin, and so it typically drips from one side of your nose, whereas, uh, uh, allergies or nasal secretions tends to be a problem on both sides. But yes, um, EDS patients and people with tethered cord, Arnold Chiari, Arnold Chiari malformations, they often tend to have more often brain fluid leaks, and that is a problem I take care of a lot of, uh, in EDS patients and just, uh, In Ohio.

It seems to happen a lot as well. 

Dr. Linda Bluestein: Mm-hmm . Okay. That's, that's really, uh, really good to know about because that's obviously a really frustrating challenge for, for people and actually trying to get the to the correct diagnosis is, is absolutely essential. 

Dr. Das: Yeah. 

Dr. Linda Bluestein: Okay. So I think we should, uh, actually I was gonna transition to the ear, but first was there anything else that we should talk about for recurrent sinus infections?

Was there [00:43:00] anything that people should be doing for that? 

Dr. Das: Yeah, if you, if you have recurrent sinus infections, again, the, probably the take home kind of bigger points is you need antibiotics, you need them longer and earlier in the infection, and you need to, uh, you will, Often I'll hear, yeah, I'm getting better, but it's slowly getting better.

And you need to stay on antibiotics until you're fully better. And so for somebody else, it might be three or five days. For you, it might be 14 days or even 21 days, but you need to stay on those antibiotics until you get fully better. Avoid surgery, you know, multiple opinions before you consider surgery.

Absolutely avoid terminate surgery, which could cause empty nose syndrome. And don't stick with. Uh, your symptoms and know and be like for be just don't let your doctor talk you out of your own perception of your symptoms. It's so common, like, are you sure you're not getting better? Like, oh, you, you know, [00:44:00] you, uh, people in our minds, they kind of want to check off that.

Oh, you're not really that sick or you're not. you know, not, uh, getting better. No, you say exactly what is happening. I am dripping clear fluid, you know, and it's not getting better. It's worse when I go to the bathroom. I did take these antibiotics. They are not helping. I'm only maybe a touch better, but be very clear and stick to your guns when you're with your physicians and that sometimes will help you get better care.

Dr. Linda Bluestein: Okay. Early on when you're. Say you have a cold or an upper respiratory tract infection, but you know, there's no sign yet of a sinus infection. Is doing things like, you know, more decongestants or, you know, using like a decongestant nasal spray, does that help? Um, 

Dr. Das: it's kind of mixed there, there has been some data that, uh, like with COVID, washing your nose with salt water seemed to, uh, uh, minimize COVID symptoms a little [00:45:00] bit.

There has been a one big study where if you wash your nose with salt water, when you're healthy, you're washing away the good proteins in our body that protect us against infections and make you more prone to infections. So, um, so definitely, uh, if, if in the periods where you're completely healthy, then washing your nose is probably harmful.

Um, but right at the beginning of when you're getting sick, um, I like to have my patients take very hot, steamy showers. For a long time and the heat and the steam and then blowing their nose after at the end of their steamy shower Is helpful heat we now know like for example our nose makes these little membrane particles called exosomes and those work to trap viral particles and minimize the amount of virions that can affect the Infect us, uh, but they don't work as well if our nose gets cold.

And so, um, that might be why we get more sick when we're colder. So, um, [00:46:00] uh, staying warm and, uh, heat is very helpful. And EDS in general, heat is really helpful. Uh, it expands those tissues and, you know, uh, reduces the contraction of those tissues. So, heat and steam or early in an infection are what I really like everyone to use.

Dr. Linda Bluestein: Which is great, because that's something that, you know, most people should have access to do. Right. And, um, so wonderful. Okay, let's move on to the ear. What kind of problems do you see in the ear? 

Dr. Das: Um, let's see, I see a lot of people get cerumen impactions, so earwax getting stuck in their ear. Um, that's a common problem.

I like to have people use Debrox, it's a, uh, hydrogen peroxide based, uh, eardrop that you can buy at the Croger at the grocery store, you know, the drug store. And I tell them to use it maybe once a week in their showers and that helps, uh, stop plugging up their ears. Then another, uh, problem. It's actually not involving the ear, but [00:47:00] causes me and a lot of EDS suffers tremendous ear pain is we have this nerve in our neck called our occipital nerve and it goes right, uh, you know, through our cervical spine.

Then kind of comes up this way right behind our ear and it's right by our level two jugular lymph node chain. So when, if we get any swelling in that chain, it can kink that nerve or if you have, you know, neck arthritis or you sleep funny, that nerve can get kinked and it can cause, you know, 10 out of 10 nerve pain, you know, right, right along this back.

And it feels like your ear is killing you. Your neck is killing you. It's like, it's tremendously painful. Is due to a nerve getting kinked right here and, uh, in your neck. And so again, that I found the best is just a super hot water shower, right. To, you know, sitting for 30 minutes with the hot water, as hot as you can tolerate hitting that joint, and that can get you some relief, um, uh, [00:48:00] that, um, is a, is a very common problem that gets constantly, uh, blown off where everyone's like, your ear looks fine.

I'm not sure why. Uh, You're having this ear problem. Um, outside of that, um, no, other than that, I don't see any kind of natural ear issues like eustachian tube problems or cholesteatomas. So, fortunately, ear issues have been, you know, I haven't seen that more than the average population. Okay. 

Dr. Linda Bluestein: What about tinnitus?

Dr. Das: Now tinnitus is a extremely common problem, unfortunately, um, uh, almost 50 percent of men by the age of 50 will have it, almost 50 percent of women by the age of 70 will have it, and about 100 percent of people by, if they live to 90 will have it. And so tinnitus is, um, this problem where when we're born, we're only born with about 20, 000, uh, inner hair cells [00:49:00] and.

Three, each inner hair cell gets three outer hair cells. So 60, 000 outer hair cells. And it's in a tonotopic map where right at the front are our low frequency. And then it goes around our cochlea all the way to our highest frequencies. And so, um, we. We have this area in our, as our cochlea bends, where the vibration, you know, tends to put a lot of trauma to our cochlea at around 8, 000 hertz.

And so if we're exploit, exposed to a lot of noise, um, uh, and it's only worse in our, you know, our children are on airpods all day long. Like, um, there's a lot of noise exposure, but our generation went to rock concerts for this. and the speaker was like, we're like, do people have fun at these things? They can't hear a thing.

And the speaker is literally blowing my head off. And, you know, everyone was like, this is amazing. And so we've, our generation had a lot of noise exposure as well. And then, you know, people who work and are exposed to a lot of loud noises, [00:50:00] uh, have, uh, problems with tinnitus as well, but as you accumulate noise damage over your life, those hair cells break and die.

And then when they die, um Tinnitus is really a phantom pain where we, uh, are hearing now the, the sound that we hear is from a negative signal, like the lack of signal coming from our cochlea. If we get a positive signal, like you hear a fan in the background, our brain has these, uh, wires that can stop that sound and say, let's ignore it.

But it can't handle no signal from our ears very well. So the best treatments for tinnitus are to try to, if you can find like on our. It's the same with our phone now, um, find our phone to generate the same frequency of noise that we're hearing in our head, um, that's the frequency where our ear, our hair cells were damaged.

If we hear that noise coming from the outside, then our brain can turn it all off and we can get some relief. But if you un Uh, unless that happens, [00:51:00] you hear that negative signal in your brain and it can be very bothersome telling people that it's not cancer. It's not anything bad. You know, if we can reduce their anxiety around that, that's often helpful.

But if the tinnitus is bothersome, then we try those, uh, uh, Uh, masking treatments or, um, hearing aids or things like that to help. 

Dr. Linda Bluestein: Yeah. I feel like I see that, uh, hear about that a lot in my, in my patients and thank God I don't have that yet, but I, I went to several weddings this summer and I, I have, I was actually going to grab them really quick.

So, so I brought with me in my purse, like, you know, these foam, uh, I'm holding up these foam earplugs that I'm sure everyone is, yeah. And I also had these like better ones that I, that I, that I think maybe are supposed to work like even better. I'm going to hold these up really quick, but I'm wondering, first of all, does that help?

And then secondly, I forgot them in my hotel room like every single time. So. 

Dr. Das: Yeah, yeah. [00:52:00] So it didn't do, it didn't do 

Dr. Linda Bluestein: any good for me in my hotel room. Yeah. 

Dr. Das: Yeah. I, um, oh, so yes, they do help on E. Okay. So I'm not affiliated with this company at all. And so, but there is this company that's created, uh, these amazing earplugs.

They're called, it's called loop, uh, loop plus. 

Dr. Linda Bluestein: I've heard of them. Yes. 

Dr. Das: Yeah. And they, they look like jewelry. And so I've, um, I love them. I wear them to soccer games, to rock, you know, I went to a Billy Joel concert recently. Um, uh, any, anytime I go to a loud event, I put them in. They, um, they look like, you know, all the kids these days are wearing these earrings punctured into their tracheal cartilage.

And so people think you have some earring on, like they don't look like earplugs at all. But, they are amazing. I go to a concert, I come out, um, they're made out of metal so you can hear voices through the earplugs at the same level, um, but you [00:53:00] come out and my ears are not ringing or throbbing. And so, that, um, That, we call that a temporary threshold shift when your ears start to ring and throb after, um, uh, and that is probably inflammatory traumatic damage to your hair cells that are damaging them and eventually that becomes enough where you don't recover from that.

And so, um, but yes, the, the, every time you, uh, wear earplugs to a loud event, you are protecting your ears for sure. And, um, unfortunately in this day and age, we don't have a. stem cell treatment to fix those. If we do, it's going to be the last thing that's invented because, uh, you know, our heart attack, regrowing heart tissue, you know, is a huge priority.

You have a liver failure and you need a liver transplant. Regrowing liver tissue would be a huge priority and the FDA would allow us to experiment on those two. But Uh, you know, somebody complaining my ears ringing and we want to inject something into someone's brain, the [00:54:00] FDA is going to say, let's first, you know, cure heart attacks and cure, cure liver disease before we start mucking with our people's brains.

So we really are going to have to wait a long time before we come up with therapies. I think that fixed tinnitus. So it really behooves all of us to protect our ears as much as we can. 

Dr. Linda Bluestein: And, and I really appreciate all that information. I have a, a very good friend who has quite severe tinnitus and, um, I know she's described it to me as, you know, it just really is a challenging thing to live with.

So I think anyone who, who has it definitely is like, you know, the rest of us who don't really should be doing what we can to, to prevent that. 

Dr. Das: Yeah. Yeah. And for your friend, tell her to, these iPhone apps say like white noise generator or pink noise generator or brown noise. If she can, and there's actually one where you can move the frequency of the noise, if she can play the exact sound, it might give her a little bit of relief.

Dr. Linda Bluestein: Okay. Um, I've, I've tried, uh, recommending to people and sometimes it's, uh, [00:55:00] a little hard to know if it's been effective or not, but have you ever had people put cromaline, um, eyedrops in their ears for tinnitus? Have you ever tried 

Dr. Das: Uh, I, I've, Oh, you know, I haven't, I have never prescribed that for tinnitus, but I love that.

I don't use cromelin as much. Um, I use, uh, astaxelastine, which is the, uh, the, uh, cromelin, uh, supposedly stabilizes our mast cells. I'm not sure how the mechanism works, but, um, uh, Azelostein is a similar molecule that actually blocks histamine. It's a histamine blocker. But, um, the eye drops, um, if it, if something can be manufactured that's safe for your eyes, it's gotta be pH balanced, isotonic, it's gotta be completely antibacterial, so you can put it in your eye, you can put it anywhere in your body.

So I have my patients take, uh, Uh, antihistamine eye drops, and anywhere they're itchy, um, uh, on their [00:56:00] skin, if they get hives or itchy, I tell them to put it all over their body, in their nose, their mouth, anywhere, um, it would make sense to put in their ears. Typically, I do for itchy ears with allergies, but, you know, you are correct.

There might be a small group of people, particularly younger people, who get itchy. some ringing in their ears because their ear is getting inflammation and uh, you know, that inflammation is causing it and so if you put an antihistamine and it reduces that inflammation you might um, uh, stop their ringing, you know.

On the other hand, aspirin can cause ringing so, you know, some of the pills can actually cause some of that ringing um, but um, that, that does make some sense to me to try cromaline eardrops for tinnitus. That's definitely safe and something that if it helps, you know, Could may be specific to help EDS patients as well.

Dr. Linda Bluestein: And if somebody tries that and well, actually I was gonna say we've had it effective, but even if you don't, you know, send me an email and let, and let me know. Cause we, we learn a lot from our patients and we learn [00:57:00] a lot. I learn a lot from listeners who send messages. 

Dr. Das: Absolutely. I learned from my colleagues, my patients.

Yeah. And I will say so much of my knowledge Um, it's kind of, normally when you're giving talk, you kind of go right to the data of, you know, a study has showed this, so I can, I'm comfortable saying that, you know, this study supports X, Y, and Z. There's just not very good data on, uh, a syndrome, and so much of what I've, um, uh, learned and believed is because I've seen it in my patients, and then I've read something that makes sense to me in the science, so I try to put it together, but, There's very little, you know, solid scientific data to support a lot of the things at EDS, unfortunately.

Dr. Linda Bluestein: Yeah, that is definitely part of the problem. And the antihistamine drops that you're talking about, so I think of it as azolastine, but I'm probably mispronouncing it. Are we talking about the same thing? You 

Dr. Das: might be right, azolastine. I 

Dr. Linda Bluestein: don't know, I don't know which is the right way 

Dr. Das: to pronounce [00:58:00] it. 

Dr. Linda Bluestein: But that's available as a nasal spray, but it's also available as eye drops.

Dr. Das: Yep, that's uh, you can get Azolastine Ophthalmic, which is the eyedrop, uh, Astiline or Astipro is the nasal spray. Okay. And um, I like put, and that's probably safe for your ears too, your ears are actually pretty hardy, but um, I like putting the eyedrops in people's ears. 

Dr. Linda Bluestein: Mm hmm. Okay. And that used to be prescription.

I feel like not that long ago, but now it's over the counter, right? 

Dr. Das: Yeah, the eye drops still might be prescription. The um, nasal spray, Asta Pro is definitely over the counter and likely safe. And so, um, Asta Pro, I would feel comfortable putting in your ears and seeing if that helps just the same way as the cromaline, you know, as something to try, especially if you're itching.

Uh, if you have a lot of mast cell histamine release, you know, that could cause the itchiness and then, you know, Uh, the elastin, uh, or elastin? Yeah, either one. Um, uh, would be helpful. 

Dr. Linda Bluestein: Okay. Uh, [00:59:00] so as a, uh, otolaryngologist, you're a surgeon, right? 

Dr. Das: Uh, yes. 

Dr. Linda Bluestein: Okay. So of the surgeries that you perform and or the surgeries, I guess, that, that somebody with EDS pots, MCAS may or may not be a candidate for, are there certain.

Risk factors that we should be aware of, certain things that we should be doing in order to prepare for surgery. 

Dr. Das: Ooh, that's a very good question. Yeah, the number one thing I think EDS patients should do for preparing for surgery is to get multiple opinions, um, and to really Like, especially for ENT, I don't mean to, uh, you know, do this, but if you could find it, um, you know, a GI surgeon or a urologist who had specific expertise in EDS, that would be very helpful because, you know, we do not follow the rules.

We have rules. complications at much higher rates, our tissues break down, things that should have worked for other people [01:00:00] sometimes don't work for us. So, um, I like to avoid surgery as much as possible. If there's minimally invasive options for that operation, like this tonsil, for example, instead of doing the classic cautery tonsillectomy, you can do a Uh, uh, intracapsular tonsillectomy.

That's a little more advanced technique. Instead of having classic sinus surgery where you're using a rotor rooter to cut all of your sinus tissue, we can now get by with just a balloon and dilate a few of your sinuses and avoid that surgery. Um, that would be better. Um, uh, and then, um, For ENT specific, like if you have a CSF leak, having a skilled rhinologist who takes care of a lot of CSF leaks, you will potentially make you have a better outcome than somebody who only does that operation occasionally.

So, if you need surgery, just know there's a wide variety of skill and talent level around your particular operation that you [01:01:00] need. And so, the. Putting some effort to find, uh, making sure, A, you need that operation, B, if you do need the operation, who's the best at doing it, um, is challenging, but very worthwhile.

And so, um, if you have the time, if it's an elective operation, just do not do it. Jump into surgery, like, you know, go to multiple doctors, get multiple opinions, ask who's the best, ask what their complication rates are, what, you know, if they get defensive at all, you know, go to somebody else, like, uh, really, really, uh, shop to find the best person you can for your operations.

Dr. Linda Bluestein: I think that's fantastic advice. Having spent many, many years in the operating room, yeah, there's widely, widely different skill levels and backgrounds. And like you said, you want, you want a surgeon who does something quite a bit, not rarely. So, um, I think those are great tips. Um, before we wrap up, was there anything [01:02:00] that we should talk about in terms of MCAS or mast cell activation syndrome and that you, that you think that we should, uh, you know, add in here?

Dr. Das: Yeah. Um, no, I think you asked great questions. The, um, one thing about MCAS that, uh, our listeners should know is that, um, full blown MCAS, um, where you have, uh, your mast cells are just constantly releasing histamine and you have tryptase in your bloodstream. And, uh, you know, you have this severe Yeah. Yeah.

daily, constant genetic problem with, you know, massive amounts of histamine is exceptionally rare. You know, it is a unbelievably rare disease. And if you see somebody who's not familiar with EDS, and they're, you know, maybe, you know, Uh, not, uh, maybe not experienced with the EDS or binary, and they're thinking, uh, a lot of times they might just order a test level and say, oh, you're negative.

And so, no, you don't have [01:03:00] MCAS at all. That is very frustrating to everybody because Um, EDS and, uh, um, MCAS are part of a spectrum. Like you could have a hundred percent amazingly, uh, functioning, um, mast cells that are extremely tight. None of the histamine gets released unless you come with a lock and key and you put the right antigen right there and then it opens a tiny door and a little bit of histamine comes out.

Or you could have, you know, a full blown disaster where you have this leaky bag and, you know, somebody just knocks it and the whole bag, you know, explodes and all this histamine releases or anywhere in between. And so, most people with EDS are somewhere in between where their mast cells are just friable, maybe a couple times a month or a couple times a year.

You have this massive histamine release or, you know, they get. They get activated by things that are not classic like cold air or stress or something like that that isn't [01:04:00] a classic lock and key antigen mechanism but you can have this full spectrum of idiot connective tissue problems and mast cell problems and so You shouldn't necessarily, uh, if you get a test that says you're negative, be like, Oh, I'm fine.

Or, you know, that, you know, I'm discouraged because I think I have it. Now this doctor doesn't think I have it. So there's this whole spectrum of how stable your mast cells are that anyone could have. And that can change over time, over our years. And if we're in such, so we, it should be instead of mast cell, um, Yeah, I mean, yeah, activation syndrome, it's a syndrome.

It's not a, you know, yes or no. And so that's important to remember that you can have different levels of severity of how your mast cells dysfunction. 

Dr. Linda Bluestein: Mm hmm. And, and, and I've said a number of times recently, I think we should stop calling it mast cell activation syndrome and instead call it mast cell activation spectrum.

Dr. Das: Yes. That's great. [01:05:00] It is exact. Yeah. In a word of what I was trying to explain. Explain, it is definitely a spectrum. 

Dr. Linda Bluestein: Yeah, we don't even have to change the acronym. Yeah, 

Dr. Das: it could just be MCAS, right. Yeah, Empty Nose Syndrome is really terrible too because most of my patients don't have an empty nose like classically in the 1960s, a bacteria, Klebsiella Ozenia, used to erode your entire nasal cavity and that's what people thought.

It really should be Turbinate Dysfunction Following Surgery, you know, TBS. And so if then ENTs would be, oh yeah, that makes total sense. You could have the organ dysfunction after surgery. We see that all the time after, you know, certain, you know, surgeries on different organs. Why would the terminants be any different?

But people say, oh, I do have empty nose syndrome, doc. And they look and they're like, no, everything's still there. You're fine. You know, and then, uh, that person is dismissed. So 

Dr. Linda Bluestein: it's so fascinating what things end up getting named and how that impacts how people are validated or, or not, you [01:06:00] know, 

Dr. Das: that's right.

Yes. Yeah. You're so right. 

Dr. Linda Bluestein: Okay. Um, this has been such a fantastic conversation. I know I learned a lot and I'm sure other people did as well. Um, we always like to wrap up before. Before we have one final question, but with a hypermobility hack or a couple of hypermobility hacks, um, do you have some hacks or like, you know, quick wins that you want to share with us?

Dr. Das: Oh gosh. Yeah. For me now, I'll give you maybe two groups, one for me as a patient and one for me as a doctor. Um, for me as a patient, uh, uh, hot, Super hot water, you know, that is, uh, seems to be the thing that helps my joints and my neck and all my symptoms, uh, the most. And number two would be, um, lifting weights.

Um, you, we learned to, we're told, um, for again, for other people, when you lift weights, uh, to go through the full range of motion and [01:07:00] to have, you know, very good technique across the range of motion for EDS, I think that's not valuable. I think you really want to, uh, build the central belly of your muscles that you, you know, my, my wrists, for example, are, are hyper extendable.

Like, so I want to work on really strengthening the center of my forearms to reduce my mobility of my wrist, which means just heavy weights, very low, you know, maybe six or eight reps, but not going through the full range of motion. I'm just kind of like, I'm showing off. Almost, you know, not doing good form, but, uh, those two things are probably, for me, have been the most helpful.

Now for my patients, um, Yeah, we kind of talked about avoid nasal steroids, avoid surgery, um, steamy showers are very good for sinus disease and longer courses of antibiotics. 

Dr. Linda Bluestein: Excellent. Um, I love, I love that about the, you know, working through the smaller range of motion or the middle of the range, [01:08:00] because it can be very challenging to find that sweet spot for exercise and getting that muscle hypertrophy.

And, uh, so people do need tips for how to make that more successful. 

Dr. Das: Yeah. Yes, definitely. 

Dr. Linda Bluestein: Okay. Um, before you go, uh, can you tell us what projects you're up to or anything special, um, in that regard, research or anything? And then also, uh, where can we learn more about you? 

Dr. Das: Oh, sure. Um, right now, I've, um, been, uh, actually working on two things that are not, uh, that EDS related, but one, it was, um, we, uh, co founded a company called Zotarix with two other pediatric, uh, surgeons, and we made this lip guard to protect against burns from a tonsillectomy.

We're trying to make everyone who gets a tonsillectomy have to Uh, wear a lip guard so that bovi, you know, we maybe once a year or so, uh, bovi causes a little burn right here. You've probably seen it in your career. And so we, we've been making this lip guard that [01:09:00] everyone, we want everyone to wear. Uh, and then also I work for a company called Soundtrace that's working on, um, preventing hearing loss in occupational workers and preventing tinnitus.

Like we were talking about, um, we're automating audiograms where they get. Upload it into the cloud and then the computer tries to predict where your hearing is going to go based on your priority grams and then warns you and then warns everyone in your co workers if you're in a noisy area to make a change and so I'm working with a company to try to protect hearing loss uh, and then um My website is www.

usasinus. org. Um, and so I'm in Columbus, Ohio. I'm a rhinologist here that, uh, specializes in bad sinus issues. But, um, EDS is kind of a labor of love for me since I suffer from it. I, you know, love to, uh, uh, see anyone with [01:10:00] EDS and do anything I can to help people with EDS. But, um, uh, yeah, we're in Columbus, Ohio.

And, um. www. usasinus. org 

Dr. Linda Bluestein: Okay, and I know lots of people are going to be asking. So you are taking new patients? 

Dr. Das: Yep, yep. We, um, take new patients. Um, we do, uh, phone consults for people, you know, outside of Ohio and, uh, um, yeah. Yeah, if it's a simple question, I, you know, I'm happy to, my email is listed there.

Oh, let me give my email. I'm happy to, uh, get emails from people with EDS, but my personal email is shu, s h u, at u s a sinus dot org. Um, and if it's a, you know, a simple question or, you know, a You know, one or something I can answer very quickly. Just you people are always welcome to email me and I'll try to respond to all those emails.

Dr. Linda Bluestein: That is incredibly generous. Um, it's, it's very rare to get a [01:11:00] surgeon on the podcast, so it's such a treat when, when we do and uh, to offer to respond to emails is like an incredible thing. So thank you. 

Dr. Das: Oh, Yeah. No, I, I mean, so as, as, as you say, Both of us know that so much of the challenge with EDS is just finding good information.

And so. You know, it literally takes a few seconds to respond to an email, so I'm happy to do it. And then if it's something bigger, like, you know, a CSF leak or something, we all try to get them in the right direction. 

Dr. Linda Bluestein: Sure. Sure. Well, thank you so much for doing this. Um, it was just so great to get to chat with you and I know we've been planning this for a while, so I'm so glad that we finally got it to, to happen.

Yes. 

Dr. Das: Me too. I am so sorry for all my technical, uh, worries. so much. Problems. Oh my gosh. I feel like I used to be good. I used to love to build stereo systems when I was like a teenager, so having technical and audio difficulties is even more [01:12:00] terrifying for me now that I, I'm like, I can't make anything work, so No, 

Dr. Linda Bluestein: no worries at all.

Um, it's, it, like I said, it's gonna be a treat for the audience to get to hear from you and so, um, I know that they're really going to appreciate this information. 

Dr. Das: Great. Well, thank you. And thank you again for having this podcast. You're such an amazing resource to the EDS community and for having all the variety of speakers that you do.

Um, it's really a true blessing for everyone who suffers from EDS. 

Dr. Linda Bluestein: Oh, well, thank, well, thank you so much. That really means a lot. And I'm hoping that the rest of your day goes well. And thank you again. 

Dr. Das: All right. Yes. You too.

Dr. Linda Bluestein: Well, that was an amazing conversation with Dr. Das and you got to listen in while I was getting a little bit of my own advice in there from him because he's such an incredible expert when it comes to sinuses and ear problems, throat problems that I know so many of us have experienced with EDS. And the [01:13:00] comorbidities of dysautonomia and MCAS.

So I want to thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD podcast. You can help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. This really helps raise awareness about these complex conditions.

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