Eyes Problems in EDS with Dr. Eric Singman and cohost Dr. Dacre Knight (Ep 189)

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Dr. Eric Singman: [00:00:00] One option is something called an optic nerve sheath fenestration. That's a surgery where we go behind the eye and we take a little window of optic nerve sheath, which is just an extension of the meninges 'cause the eyes are extension of the central nervous system. And we take that little window off and out comes the fluid and the pressure is relieved off the nerve.

Dr. Linda Bluestein: Welcome back every bendy body to the Bendy Bodies podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility md. A Mayo Clinic trained physician dedicated to helping you navigate Ehlers-Danlos Syndrome and complex chronic illness. Today I'm joined by Dr. Dacre Knight, who is not only an expert in EDS HSD Pots and Mast cell disorders, but is also joining me as a recurring co-host.

Dr. Knight recently [00:01:00] became the medical director of the UVA Ehlers-Danlos Syndrome Center, which is officially partnering with bendy bodies. Today I am joined again by Dr. Eric Singman, a neuro-ophthalmologist who works at the intersection of the eyes, the brain, and the complex symptoms. So many people with EDS struggle to have taken seriously.

He's a professor at the University of Maryland School of Medicine and has spent decades caring for patients whose vision problems don't show up on standard eye exams. If you haven't already, be sure to check out episode 180 for part one of our conversation. Dr. Singman has held leadership roles at Johns Hopkins.

Wilmer Eye Institute advise the Department of Defense and Social Security Administration and help shape national guidelines on disability and brain injury. His work focuses on visual dysfunction after brain injury and the visual impacts of Hypermobile IDOs Danlos syndrome, making his perspective especially relevant for the bendy bodies community.

As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Stick around until the very end. So don't miss [00:02:00] any of our special hypermobility hacks here. We.

Well, I am so excited to be back with Dr. Singman when we released the previous episode. I have to tell you, so many people really enjoyed that conversation and requested that we have you back for a part two. 

Dr. Eric Singman: Thank you. 

Dr. Linda Bluestein: So I first wanted to talk about an EDS vision triage to help us figure out like when we need a specialist and who might need a specialist.

can you give us like maybe a five step or so decision tree for who needs to go where? so that we know if a, somebody has various different like red flags or if they need to see a subspecialist. 'cause I don't think a lot of people realize that there's, within ophthalmology, right? There's cornea, there's retina.

We talked about dry eye clinics last time and also neuro-ophthalmology, which is what you practice. can you give us an idea of how a person might determine what subspecialists they need to go to? [00:03:00] 

Dr. Eric Singman: Sure thing. First, if they know they have a particular vision problem, like they have a history of retinal detachment, retinal tear, et cetera, they should go to a retina specialist.

They should go to the specialist. They know about a history of keratoconus, which is weak corneas. They should go to a cornea specialist. So if they know they have a particular problem, by all means go to the specialist in that area. If they have a new vision problem. Believe it or not, any comprehensive ophthalmologist is a good start just to go through the eye exam and say, okay, it's not your cornea.

It's not your retina. It's not glaucoma. It's not inflammation in your eye. It's not this. It's not that. Once they do that, they can, by process of elimination, if you will be able to guide you where you need to go. Now, sometimes they do end up going to a ophthalmologist. The most common person is you have a vision complaint.

I don't know why your eye looks fine. Go see a ophthalmologist. That's the most common vision [00:04:00] pro. that's the patients I get. On the other hand, they may find other things. Now, sometimes the problems can be subtle and sometimes the problems, you know, even a good comprehensive ophthalmologist might say, I'm not really sure.

Perfect example. Someone says, you know, reading is hard. I get tired when I read. I, don't have the reading endurance I used to have. Well, you gotta ask a patient. The patient's gonna go to an eye doctor, is it my eyes? And the doctor's gonna check your eyes and see if it's okay. And then hopefully the doctor's gonna ask you, well, why is your reading endurance down?

Well, I mean, I just can't seem to remember what I'm reading. Well, that's not an eye problem. That's a cognitive problem. So you don't need an eye doctor. On the other hand, you say, boy, my eyes just go so tired at the, I just, feel like my eyelids are coming down. I'm just exhausted. Then that doctor might see if there are some reading problems.

The classic one we mentioned last time we were here was convergence and [00:05:00] sufficiency, where a person has trouble, either, initiating or maintaining that cross-eyed posture you need for reading comfortably. Once that happens, then you can go see a special needs. Now clearly you gotta be careful, you know, we'll talk about this later, but people have been turning Ellis Danlos into cash cows and they've been turning some of these soft reading findings into big time cash cows.

I just got off the phone with someone about five minutes ago who delightful, sweet person who watched the bendy body sport, PO podcast from last time, and she asked me some really excellent questions. This is a extremely intelligent person, like all my Ellis Dental patients tend to be well, knows what's going on, and unfortunately it sounds like she may have seen people who have.

On the dark side, so to speak. As far as [00:06:00] a triage, there are certain red flags you wanna look for. Certain things immediately come to mind. If there is a loss of vision, whether it's in one eye or both eyes, if there's eye pain, one eye, or both eyes, if there's double vision, if there is swelling, redness, et cetera.

These all are red flags. Potentially an ocular emergency. If the eye doctor says Your eyes are fine, but you're seeing double, that patient probably goes to the emergency room to make sure they don't have the stroke or a CSF leak or something terrible. So there's, so the red flags are, and most people, you know, in my experience, people are not dumb people.

People understand that there's some stuff that just isn't right. They know that a red flag is, you know, their red flags are nice and most of the eye care providers I know, optometrists or ophthalmologists, if they see some of these [00:07:00] red flags, you know, vision loss, pain with eye movement, double vision, they're gonna probably believe that patient also should get checked out immediately.

The problem is there are some people who say, well, you know, they call me, can I have him see your clinic in a couple weeks? They say, no, you can't, you send them to the emergency. I just gave a, actually to the, you know, I, teach the neurologist here at University of Maryland and our talk today was neuro ophthalmic emergencies, and so these are some of the things that, you know, the red flags, if something's a chronic problem going on for months or weeks, if it's getting worse, that could be an a, a, you know, portend of an emergency.

On the other hand, if it's just stable but it's just annoying, then that's something that probably is not emergent, but still should be checked out. So I still think that usually the best way to do it is have a competent, comprehensive ophthalmologist be our gatekeeper, if you will, to look for those things that can and should be referred either urgently or less urgently, [00:08:00] and take it from there.

Dr. Linda Bluestein: And I, appreciate that. So you're saying that sometimes reading difficulties would be, more cognitive and other times it would be more related to the eyes. And in terms of, you gave some examples. Are there other ways that we can determine whether it's more of a cognitive or brain problem or an eye problem?

Dr. Eric Singman: There are a couple of ways. So let's say convergence is deficiency, which is one of the most common issues that we deal with. We talked about how the fact is that it's, your eyes don't wanna work together. They don't wanna play nice together, right? And so if you cover one eye by wearing a patch or occluding one eye, and you find you're such more comfortable because your eyes aren't fighting each other.

But well, you've now developed a quick temporizing measure so you can get through your homework. And second, it gives us a clear idea of probably what's going on. Now, the problem with convergence is efficiency, is there's a gray area between convergence is efficiency and other [00:09:00] strabismus problems that can mimic convergence insufficiency, like, intermittent exotropia.

Other words, some people have a tendency for their eyes to go walleye to turn out, but they have, they often have some degree of control. If the deal, if the, if they have intermittent exotropia, the eye sometimes goes out and we then we rate them as, you know, good, moderate or poor control. If they happen to have control, that was good and now it's getting less good.

That could be a concern. That can come with fatigue, it can come with aging, but it also can come with other problems that usually need to be checked out. One of the biggest issues I see is that someone's given prism in his glasses or her glasses for an exotropia, and the person says, wow, this is so much better.

I see. Great. But now you've relaxed them even more so that they become more dependent on the prism and they get, less good control because [00:10:00] they're not putting effort in to keep those muscles tight. 

Dr. Dacre Knight: Dr. Singman, you hit actually some questions I was just going to go to, which is great. I, think you're already reading our mind where we're trying to go with this.

But I will tell you that my mind is, a little bit rusty from medical school when I first really got my last exposure to, eye exams and ophthalmology. Could you give us just a, kind of a, just a run by. run the proper convergence evaluation where we would start, I mean, I know there's lots of things that could be going on, but where do, where would we start?

Just kind of at a very basic level. 

Dr. Eric Singman: So the one thing you don't wanna do is have someone look at your finger and slowly bring it to their nose. That's the mistake, because one that's testing both convergence and accommodation, the focusing of the natural lenses accommodation, and two is, that's not how it works.[00:11:00] 

you that can test convergence Sure, I guess. But what, that's, not gonna test convergence in a way that's valuable to anybody. The way, the easiest way to test convergence is to take what's called a prism rack. Very simple. it's a bar with graded prisms on it, and you simply hold it with the wide part out, call the base out, and you slowly run it from a weak prism to a strong prism.

And you ask the patient one, does this mimic the discomfort you have with reading? Because this causes convergence. Because you're the distance, so you're not changing the working distance. So you eliminate that variable of, say, convergence, the feeling of reading. You get the discomfort. and you also measure because they're graded, prisms, you can actually measure how well they can converge.

Now, a young, healthy person should be able to converge 35, 40 prism [00:12:00] doctors, which is a substantial amount. I'm not saying they should be able to keep up 40 prism doctors. I don't think anyone can that'll give anyone a headache. When you and I converge, let's say we're, working in a computer right now, the screen is perhaps what, maybe two feet from us or so.

Right. At least my screen is on my laptop, and so I'm converging probably no more than 15 prism adopters to see that screen. Because if you think about the physics of it, when your eyes are looking at an affinity, they're. When your eyes are looking at something that's even, you know, 20, 15 feet away, they only turn in a little bit.

So convergence, you know, should be made is convergence. Unless they're really bad, they should be able to do some work with convergence. And so that's how I like to measure convergence. And the second trick I do with convergence, as I said, is I just test somebody. If, someone comes to me and says, my doctor said a convergence efficiency.

Yeah. I said, thank you. That's great. Did they ever do a monocular trial? If they tell me [00:13:00] no, then I question the doctor what they were thinking. Because you know, the doctor's job is to, well the doc, the excuse I got when the doctor didn't do that, I spoke, I call, I sometimes call the doctor and say, well, you know, please help me out here.

I'm always polite. But they say, well, I believe that two eyes are better than one. So I didn't want to even consider using one eye alone. I said, well, if it's a temporizing measure that it helps the patient and they can get through their homework, they get through their workday. Wouldn't that be a good thing?

And I, I usually get crickets on the other side of the phone. 

Dr. Dacre Knight: Okay. So, and this is a follow up on that last part there. So sometimes you're saying that clinicians don't do a, like a, they only do a single eye exam. Is that what you're saying then you would get from that is just kind of limited information then, right?

Presumably? Yeah, of course. 

Dr. Eric Singman: Right. The less you do, the less you have. It's that simple. 

Dr. Dacre Knight: So from that, you know, type of clinician in that setting and, what you're talking about, [00:14:00] the convergence evaluation you do, because of course a lot of us do the, finger to nose, you know, thinking that might be adequate, but it's obviously not and, to do the appropriate exam, then it sounds like what I had in my doctor's bag in medical school would not be adequate.

So this is, you know, something that is eventually going to land them in an ophthalmologist's office. Is, that, correct? 

Dr. Eric Singman: I would hope so, yeah. I mean, like I said, when I te I teach both optometrists and ophthalmologists about this, and I start off and I say, you know, I say if you really wanna measure convergence, you can't measure anything else but convergence.

And so if you're gonna measure accommodation and convergence, then you're measuring nothing. And you know, I get, I guess some people gimme pushback. Well, but the book says we're supposed to have a near point of convergence of six inches from the nose. And I say, that's nice to know, but how'd that number come about?

Did they do it on people of all ages? Did they do it on [00:15:00] people who have artificial lenses? Did they do where they can't accommodate anymore? I mean, what exactly are you doing for somebody so that, that's so.

Nobody made a mistake checking that. I mean, bottom line is if someone says, yeah, doc, I have no problem looking at my finger right up to my nose. great. If it's a negative test, that's wonderful, I'm delighted. But if it's a positive test, then you wanna know what's being positive. 

Dr. Dacre Knight: Okay. So there's, there is the next step then.

Okay. And, you'd mentioned this too, just briefly, that there being lots of other possible things, whether it's convergence, insufficiency, or accommodation or, you know, there's other, things. How do you, so in, in those next steps is how you differentiate from all of those, is that right? 

Dr. Eric Singman: Correct.

That's, my job. both pediatric ophthalmologists and neuro ophthalmologists have a bag of tricks that we use to try to explain if there are [00:16:00] abnormal eye movements or abnormal eye orientations, if you will, that are causing the problem. That's the basis of the patient's complaint. A lot of times it's not.

you know, there are very simple tricks they would use. And, you know, the things I use to test the eye are the same things I use therapeutically. So, you know, for example, I might have, I might take, my a watch on a fob and swing it like a pendulum very slowly and ask the patient to follow it.

And if a patient says, you know, I'm following that doc, but honestly I'm getting a little nauseous from it, that tells me something. Even if the pursuits that, that tests smooth pursuits, by the way, even if the pursuits are smooth, if someone says, you're making me nauseous pal, then I would say that, okay, well then maybe there's a problem with the smooth pursuit system.

the same way I test sakas, which are rapid eye movements, just as, as just for your listening audience, I'll just explain. [00:17:00] Smooth pursuits is when an eye track something and they're looking at the thing they're tracking and the eyes really don't care about the background. Secs are where the, I goes from object data, object B.

They don't care about the background, they don't care about track anything. They just wanna get from A to B. secs require you to take fixation off an object of interest. Object A and refre fixate quickly on object B. And so pursue secs and convergence are and divergence and other ocular mo ocular motility.

Those are the things that I like to look for when a person has visual complaints, because if their eyes look fine, but they tell me they have visual complaints, chances are it's gonna be in this realm. And if it is, then there are things we can do about it. If it's an eye teaming problem where the eyes don't wanna work as a team, the easiest way to confirm that's the only problem is to simply cover one eye.

Then the eyes don't have to [00:18:00] compete with each other, and a person often will be very happy with that. Now, nobody wants to write off an eye. I get that. But if a kid has to go to school, at least you got something. By the same token though, if somebody covers one eye and says, you know, doc, that improved my reading, endurance for like at least double.

I went from 20 minutes to like 40 minutes, but then I started getting tired again. Well, then you have to ask yourself two questions. One is, what's normal reading, endurance? And secondly, if it, if normal reading endurance for that person should be more than 40 minutes, then you go and wanna say, well, maybe there are other problems.

And those other problems could be reading hygiene, for example, not even vision. so I'm, I'm, a low vision. I'm certified low vision specialist. And I can tell you that reading hygiene includes the lighting, the head position, the arm position, the neck position, et cetera. And that is something I also look into.

Because you know, [00:19:00] if you, I were to show you a picture. If you envision a picture of someone reading in your mind, you'd be picturing someone holding a book in their lap and looking down and reading it. The problem is for Ella's Danlos, that's torture because Ella's Danlos patients have terrible necks. I mean, just uniformly their necks are bad.

So the last thing you wanna do is have their reading position down with their chin on their chest reading down. You want to have them reading in an initial position. So these are all the things I try to incorporate when someone tells me there's a reading problem. and by the way, as an aside, I think 40 minutes is a limit on anyone's reading.

Endurance. I like to consider, I tell patients I don't want you to read. I perfectly healthy patients, students, excellent students. I want you to take a break every 20 minutes, not a four hour break, although some of my patients would probably like that. but a, but easily a few minute break. Sit up, get some fresh air, get some sunshine.

Breathe, get some grass in your feet [00:20:00] just for a couple of minutes between 20 minute reading sessions. You'd be surprised how much better people do, just anyone does 

Dr. Dacre Knight: with that. Yeah. Yeah. that's great tip. And, thank you, you just pulled another question right outta my mind, which is now, you know, I can just summarize and make sure I got it correctly.

So as far as reading it, it goes and endurance and fatigue. It, seems like it is variable from one individual to the next, but generally there are some kind of broad rules too, that we just don't wanna overdo it. It sounds like a lot of the work that you do in the, counseling you provide to patients overlaps in a realm of occupational therapy too.

When we talk about ergonomics and things like that's, great because we know that there is such a, great need of occupational therapists in, in the role of care for EDS patients. And you know, what I'm also gathering from this is that generally from as far as complaints go, what, you hear then in these, settings is, you know, reading fatigue and, issues [00:21:00] related to the, stamina of reading performance mostly.

Is that right? those where those complaints are. 

Dr. Eric Singman: That's right. 

Dr. Dacre Knight: And then the last thing, before we kind of move into the next area that I wanted to touch on was you Prism. So you mentioned the, role of Prism and how it helps and, things like that. are there occasions where you may be concerned that it's just a bandaid?

Dr. Eric Singman: It's always a bandaid. Prisms are always a bandaid in my opinion. Now sometimes you need a long-term bandaid, but it's always a bandaid. Prisms are only a temporizing measure. Like I said, I had this wonderful conversation with this person I was just talking to, and someone gave her prism without finding out why she had double vision.

I mean, to me that's dangerous. Double vision can be caused by anything from something simple, something fatal. And so, you know, you don't just say you have double vision, here's a prism, have a nice day. It just doesn't [00:22:00] work like that, you know? And when I get, and, you know, again, prism is a classic cash cow too.

So for example, if I have a patient where they have a strabismus, let's say they come in, they had a small stroke, they had a six nerve palsy, which means that their eye drifts in, so they cross-eyed. If it's not too big a prism amount less than 10. I never give more than 10 prism doctors, which, not a heck of a lot.

the, these little plastic sheets called fennell prisms, FER SNL Prisms, I cut one out. They cost the doctor around $20. Doctors charge them, they double it up. Usually about 40. That's just because of, you know, the way things are markup has to be because it's just staffing your time. But this patient came to me with a fennell prism and the doctor told him it was $180, but at least they gave him the fennell prism.

But then they gave, then I saw, I looked at the Fennell prism. This had to be a 25 or 30 prism, doctor Fennell prism. And I'm saying if you ever saw a [00:23:00] fennell prism, they made of little lines and they cause rainbows and halos and distortion. So that's why if I give more than 10, you're gonna have, you know, you may see one image, but that one image is gonna be a, clear image and a blurry image.

Your brain can't fuse that anyway. So prisms are a temporizing measure to hopefully let you see single in one direction, primary gaze, front gaze, until we figure out why you have the double vision and what to do about it. I certainly wouldn't build prism into someone's glasses unless they didn't want any other therapy for a permanent and stable double vision.

And if I did build pr now and, now there is one caveat to that. I. Delightfully, you can buy glasses online now for very, for a lot less money. Like, so the glasses I'm wearing now, I'm a myop. I'm nearsighted. They cost me $9. I get 'em on some of these online sites. I won't mention names because I get yelled at for, but I, and I don't work for these companies, I get nothing from them.

But there are some online [00:24:00] glass sites that are very inexpensive and getting some glasses with just prism in them. They charge an extra $5 a lens of Prism. So you can get Prism glasses if you need them, like $20. The reason I generally don't give them is because by the two weeks are over to get the, to order the glasses and get 'em back into the patient's hands.

the prism might not be needed anymore or they might need a different amount. 'cause a six nerve palsy is gonna get better. You know, if it's an ischemic one from a mini stroke, it's gonna get, or a trauma, let's say head trauma, it's gonna get better over two to three months off usually.

And so the prison they need at week two and prison, they need a week six is gonna be different. You don't make someone spend money for that. So prisms to me are always a bandaid. They're always a temporizing measure, and their only job is to keep the patient more comfortable at possibly seeing single if possible, until you find out why they have double vision of what they're gonna do about it.

Dr. Linda Bluestein: We wanna shift gears a little bit to dysautonomia and pots, because [00:25:00] this is obviously something that's very common in this population of people. Can you describe to us what vision complaints make you think orthostatic physiology first? 

Dr. Eric Singman: So pots, which I'm, not sure, well, actually I have an idea why it plagues LS downs patients, frankly.

I mean, if I, personally believe, and the research I've seen is that if their blood vessel walls are as collagen def problematic as anything else, and it's blood vessel walls stretch that causes the autonomic changes of heart rate and such, I'm presuming that's part of the reason why they have these omas related to heart rate.

The receptors and the vessels are problematic. But that being, you know, that's just my theory. Whether or not that's been proven, I dunno. But what I do get know is that when they get orthostasis, they're not gonna get enough blood to different parts of their brain. And depending on the fluid brains, all the blood's connected, right?

They're all connected to each [00:26:00] other. But there are different pressure heads in different parts of the brain. If the vertebral basilar system, which feeds your cerebellum and the occipital cortex are the ones that get the lower pressure first before the heart rate catches up and it's the blood pressure going again, they're gonna get dizzy.

And if they get dizzy, they may even notice some double vision or room spinning. Okay? And if it gets high enough to the exhibital cortex, they're gonna notice a conning down or a dimming down of vision. The occipital cortex is your visual world. That's what you see with the peripheral vision has, is, more anter.

The post, the central vision is more posterior and the posterior vision has a secondary and maybe possibly a tertiary, emergency blood flow system so that they lose peripheral vision before they lose central vision. And then as the vision gets better, the, vision cones back up. And this could take place over [00:27:00] seconds or minutes.

That's what they see. If it's a posterior circulation. If it's the anterior circulation, then they might see things like dimming a vision or flashing lights or things like that, or, so that's harder to be sure of because then we don't know. But that's what they see. As a neuro-ophthalmologist, my job is to listen to the patient, believe the patient, but listen to the patient's complaint and not.

Necessarily let the patient tell me the diagnosis. And the reason I say that is I had a patient, brilliant patient, she was a nurse. She was just knew, I mean, she knows, she knew EDS better than most doctors out there. Sure. And she came in telling me that it was her orthostasis that was causing her to have dimming of the vision in the eyes.

And it happened when she stood up. And so that made perfect sense. But then I asked her a little more questions. She said, yeah, I sometimes get dimming the vision one or the other eye when, [00:28:00] just out of the blue, even if I'm not sitting up. And so I said, is that Orthostasis? I said, well, I assumed it was Orthostasis.

We did a workup. And you know, I looked at her and for sure off I saw a couple of Holland horse plaques in her retinas, which means that she was throwing microemboli. They were coming from a carotid. It turns out, little, you know, calcific plaques of cholesterol gun. When it, shows up in the retina, gets stuck in the retina there, these little bright golden specks of gold stuck in an artery.

Now you would never see it without an ophthalmoscope or without, you know, SL lamp exam. and she didn't know she had that. she also had mid peripheral hemorrhages, which the little dot hemorrhages in the retinal periphery, which is a hallmark of carotid disease. And so she definitely had orthostasis.

There's no question she had orthostasis. She knew that she was right. She just happened to have on top of orthostasis. She also was having TIAs from, carotid emboli and they rot [00:29:00] a root her out, which was another story because unfortunately, you know, any surgery EDS patient becomes a little more risky and a little more worrisome.

Right? But I'm, you know, but thank God we caught that. So that's the kind of thing. So I believe the patient, I listen to the patient, I tell everything the patient says to me is important, but it's my job to say, wait a second. Is there anything not fitting in this picture? So that I can make sure we don't miss something and that's so yes.

So, so yes, EDS does, and pots and orthostasis does cause vision changes, but you gotta make sure it's not a huge constellation of changes. It's fairly symmetric changes. It's usually both eyes at the same time. If it's only one eye or the other, that's a red flag. That's a problem circulation. If it's, and it's usually, as I said it, I, see more dizziness and dimming of vision than I do anything else.

Dr. Linda Bluestein: Well, thank you for that great example. That's something that I talk to people about a lot. if you label your symptoms too [00:30:00] early on, then oftentimes we stop looking for answers. We stop thinking about the differential diagnosis. So I'm really glad that you pointed that out because as Dr. Knight pointed out in one of our first conversations, we talked about Occam's Razor, but also Hi M's.

Dictum. Did I say that right? where people can have lots of different things going on, especially this population of people. So we don't wanna be premature in concluding that all a person's symptoms are coming from this one particular problem, because then we might miss something. So thank you for sharing that.

Absolutely fabulous example of that. We're gonna take a quick break. When we come back, we're going to talk about intracranial pressure, CSF leak, and we also have a couple listener questions that we want to be sure to get to. So we're gonna take a quick break and we'll be right back.

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We are back with Dr. Singman, and I believe Dr. Knight has some questions for you. 

Dr. Dacre Knight: So yes, this is, it is really fascinating to me when we start putting all these pieces of the puzzle together from, you know, ortho static intolerance to, you know, convergence accommodation and all the symptoms and conditions that can [00:32:00] go together with, with EDS related to, eyes and, neurologic function combined.

So one of the other areas too, and then we had a recent excellent episode on CSF leaks and, EDS. But I think when we tie into that, we would also tie into intracranial pressure, which is, you know, comes up very often when we talk about neuro-ophthalmology. so I wonder if we can just dig into that a little bit.

I mean, first off. we did kind of over overview, you know, related to low pressure headaches and things like that may happen with CSF leaks. But from, again, just a very kind of high level general standpoint, what would be the symptom pattern you may suggest it needs to be looked for when we're talking about high or low pressure, issues related to CSF?

Dr. Eric Singman: So, we get patients who have high pressure, we get patients who have low pressure and sadly, and probably more in the EDS population, we get patients who get both. [00:33:00] So the classic IIH patient, the classic internal hypertension patient who doesn't have a, god forbid brain tumor or anything like that, is going to be, you know, stereotypically it's gonna be a young woman of childbearing age with elevated body mass and she's gonna have, and we dunno why that causes abnormal CSF hydrodynamics, but it does.

And they come in with usually headaches. the headaches usually are worse lying down than up. So the headaches are first thing in the morning. A usually 24 7. They can get a little less as the day goes on 'cause CSF can drain down to the spinal cord. They often have what's called pulse synchronous tinnitus.

Also, some people call puls tinnitus, but it's correct term is pulse synchronous tinnitus, where they hear whooshing in their ear. Usually it's their, it goes along with their pulse. So it's usually the right ear more than the left. And they also can complain of, any, they might complain of [00:34:00] somewhat reduced vision.

They complain often that their vision goes dim when they bend over and they, I had one patient tell me she assumed that was her pots and that was a good thought. you know, but, when you bend over, you would think you'd have increased pressure, increased blood flow, the brain not decreased blood flow.

When I said that to her, she said, oh, okay. Then she liked that idea. She looks, and sure enough she had marked papilledema, marked swelling of the optic nerves. so that's, the classic high pressure person. These patients often can also have any cranial neuropathy they can get, they can come in.

So if someone has a acute Bell's Palsy, believe it or not, that could be elevated CSF pressure. And you need to look for pap edema in those patients. If someone has a bilateral six nerve palsy where their eyes go cross, or even a fourth that goes any crayon, nerve palsy. so we look for pap edema in those patients.

So that's the high pressure folks. The low pressure folks with the spontaneous CSF leaks or the CSF leak after trauma or the CSF leak after spinal tap, whatever reason, [00:35:00] those folks are gonna feel the best lying flat. Or even in t trendelenberg position, that's where, you know, the bed is, slightly slanted.

The head's down, the feet are up. That's how they're gonna feel the very best when they get up. They're gonna feel miserable, they're gonna feel nauseous, they're gonna feel headache, they're gonna feel out of it, they're gonna feel, it's just, it's a terrible feeling. The classic post LP headache that you, everyone knows about or has, may have heard about.

and those folks, will give you that very different history. very different headache, constellation, very different headache environment. And so that's one way you can tell the difference. Now then you get the people in between. The people in between are those folks, like I said, often with EDS where they have elevated brain pressure, but because they have some weakness somewhere in the meningeal system, they can blow and suddenly get a spontaneous [00:36:00] CSF leak with either EAA fluid coming out the ear or a fluid coming out the nose and that CSF fluid.

and they, might think it's just a runny nose, for example. obviously there are tests we can do, looking for that. but, but you know, there are tests we can do for that. But the bottom line is that, those are the ones who say, you know, and when you speak to them about that, when you speak to 'em about that, you want to ask them, you know, how did, you feel when you started having that runny nose?

And if they say, you know, it's funny, my headache got a little better. Say, well, that's an important finding because why would your headache get better unless you had high pressure in the first place. Now some people get spontaneous leaks without high pressure, so, you know, that's it. You obviously, you know, in either case, those, whether if you suspect a [00:37:00] CSF leak or you suspect or you see pap edema from a elevated pressure, you have to work that up.

So we do an MRI with contrast. 

Dr. Dacre Knight: So, and, related to that point, when you see it, I've. Would you see it on an eye exam every time? And what if you don't see it? And, does that mean you need to do a lumbar puncture? and is that going to then be more definitive? 

Dr. Eric Singman: I tend to be somewhat hesitant with lumbar punctures.

only because of the fact that in an EDS patient, especially, I could end up with a CSF leak. Now, I'm not saying they're wrong or bad, and they definitely have a place. In fact, I had a patient with elevated brain pressure. They did a lumbar puncture, and the lumbar puncture itself cured her because it left her with a CSF leak that let the pressure kept the pressure low or lowered.

So she had a CS and, it was a, godsend because she was pregnant. I couldn't use any medications. I couldn't [00:38:00] use radiation, you know, for x-rays or whatever. So the see the lumbar puncture was, really heaven set. But in general, what I do with these patients is I, if I see pap edema.

Then, and I see no brain tumor. I'm pretty sure where we're going with this to treat the elevated brain pressure, either medically, surgically or some other, or a combination. If I don't see pap edema, I often might still do some other tests. For example, I might get a sonogram of the optic nerves to see if there's fluid at behind the nerves, 'cause some of that can show up.

I look to see if there are what are called spontaneous venous pulsations at the nerve. That's where the, you know, that's when you look with a rescope and it's a device we use look in the eye and you see the vein of the back nerve pulsate. Most people, 80% of people have these pretty, obviously, if someone was known to have them.

Because I try to market on all my patients, whether they're normal or not. If I say, I knew this person had SVPs, I marked into my chart a year ago, and now they're coming with headache and they [00:39:00] don't have SVPs anymore, I'm gonna ask myself, something's going on here. So sometimes it can be a finding as subtle as that.

Furthermore. If they do an MRI and I see some of the hallmark findings of elevated brain pressure, like what's called an empty cellar. or I may see, on an M rv, narrowed or stenotic, venous sinus system, or I see fluid bathed optic nerves. I don't make the diagnosis from that, but I'll use those in my, thought process and ultimately even before getting a spinal tap for confirmation, I might do something else.

I might give a therapeutic trial of the medication at lowers brain pressure, such as diamox, if they can tolerate. It's a very unpleasant medication, most people, but I tell people upfront to kind of lower their expectations in terms of how pleasant it's to take. And if the medication says, doc, I tell you, I hate this medication and funny taste in my mouth, the tingling my fingers, I can't stand it.

But it did make my wishing [00:40:00] go away and it did make my headache go away. I'm not gonna do a spinal tap on that patient. I have the information I need to do to work with them. As far as a low pressure patient might go, those can be harder. There are generally no ophthalmic findings on in a low or subnormal intracranial pressure.

On the other hand, there are findings with MRI, with contrast. The meninges light up pretty well with that, and you might see the cerebella tonsils sink down on the frame. And magnum for the, again, for the audience. The cerebellum has these two extensions. They're called tonsils. These are not the tonsils that you swallow with.

They're just parts of the brain and they can fall, they can go below the hole of the base of the brain called the frame and magnum. That's cerebella, tonsil or descent. The problem with that particular finding is you can see it with high pressure and with low pressure, and you can see with Chiari Malformation also, in fact, that's the definition of QRA one malformation, which a lot of EDS patients get.

So when I see that, also that adds a, throws another monkey wrench in. But if I [00:41:00] see someone has classic low pressure. Then what we do is I usually send them, those patients will go to neurosurgery for sure, because they try to find where the leak is and try to stop it up. 

Dr. Dacre Knight: So just a very quick follow up before I, I wanna talk about neck and, cervical spine issues too that may relate to some of this.

You had mentioned the trial of diamox and, patient has, you know, problematic side effects, but they have otherwise improvements, which is kind of a telltale sign. what do you do then? do you continue them on the diamox or do you switch to something else better tolerated, or do you just kind of have that, you know, discussion with them?

Dr. Eric Singman: So first I try to see how much diamox I need, and if it works well, I ask them, what part of it do you hate? If they say, I hate the tingling, I hate the electricity feeling, the, they're called paresthesias. I hate the paresthesias. I say, those eventually go away. Let's see if you can handle it. If they say, I hate the fact that I got a pee every five minutes.

I [00:42:00] say, well, you gotta drink a lot of water and you're gonna pee every five minutes and you we're gonna hire a porta potty for you if we have to. But okay, if they have kidney stones, I might limit the diose because that can worse in kidney stones. If they hate the funny taste in their mouth, which comes with soda, I say, well, you guess what?

You're not gonna drink soda anymore. And sometimes you gotta be, it's a little bit of tough love and I get that. If on the other hand it's the nausea and the just feeling like terrible, weak, then I have to think of something else. And again, it depends on the dosage. I might go to Topamax. Topiramate, that works pretty well too, and that doesn't have that same side effect profile, although it can, you know, still the kidney don't issue is still a real issue, but it does otherwise has less side effect profile.

The way that we talked about before. Prism with double vision is a bandaid. Diamox and these other medications for elevated brain pressure are a total bandaid. They're not the cure and I, don't like using 'em for long-term therapy. I disagree with their uses. Long-term therapy. They are a [00:43:00] temporizing measure to protect the optic nerves.

If they're swollen and they're a temporizing measure to give the patient some relief from headache and their pulse tin post tinnius. Other than that, I take these patients and say, look, we have a couple of options here. The medication is to protect your nerves and make you feel better. It's not the cure.

If this patient is, has a markedly elevated BMI, then we're gonna lower that BMI. I've had patients who've gone some of these new GLP one drugs that literally turned their life around and it was been amazing. I've had patients who tried them and they didn't do so well in them. That's every, drug's like that, right?

I've had patients who went to a gym and said, I'm gonna do this on my own without drugs, and some of them have been fabulous with it. So if the weight loss can happen, I'll use the diamox if I see the weight loss as a real interest. And it's possible. If these people say on the other hand, look, doc, I tried everything, the weight loss just isn't working for me, then [00:44:00] I'm gonna go and talk to my neurosurgery colleagues and say, I got someone who's a candidate for a stent.

If the MRV, if the magnetic reason venogram shows that there's narrowing, or if they have an IR interventional radiology procedure called a manometry, where they go up into the venous system and they show that there's a substantial pressure differential across the venous sinus from one portion to another, that person's a candidate for stenting those venous sinuses over and those persons in our clinic at University of Maryland, we have a wonderful Dr.

Jacob Cherry and who's just gifted, and he works with a nurse, Betsy Shearer, some other people. And these people are absolutely gifted. We have, you know, we have a stent program here that I've just patient just come to me and say, I don't need to see you anymore. And they say it so happily, it just makes me wonder a little, makes me worry.

But, they, they honestly do really well. Withstanding as you know, maybe your audience doesn't. In the past we used to do shunts where they drill a hole in the, [00:45:00] I have not requested or suggested a shun in, I dunno, maybe seven years. I don't, I can't think. I just, avoid them.

The shunts are problematic. Now there are, that, those are ventricular peroneal shunts. They're also lumbo peroneal shunts. They have much less, they, have, a less failure rate, I think, and they're less invasive, but still have shunned still hardware. So, so I've been, basically, if it's neurosurgical, it's been stent.

Now there are some patients who can't have a stent for some reason or won't have a stent, and whose optic nerves are being threatened by pressure and we can't get the pressure down. But those patients, and one option is something called an optic nerve. That's a surgery where we go behind the eye and we take a little window of optic nerve sheath, which is just an extension of the, meninges because the eyes are extension of the central nervous system.

And we take that little window off and out comes the fluid and the pressures [00:46:00] relieved off the nerve. Now, not a lot of people like to do this, some people say that. So that's, basically, the last, you know, last ditch procedure or patient has to be losing vision badly. then there are other people who say, well, why not?

And, I know, you know, there's a brilliant doctor who does these really well in Florida. Dr. Thomas Spore, he also was in Michigan, and he's just a wizard. These, and he is, he's helped a lot of my patients. We introduced the procedure when I was in private practice to Lancaster County and we had very good results with it.

So I was very happy with it. There are risks with every procedure, including losing vision. I mean, you're right by the optic nerve. So obviously with, this is not candy we're talking about. But there, there has to be an armamentarium of what you can do for patients with high pressure. 

Dr. Dacre Knight: Yeah. Well, thank you.

very comprehensive. And, I'm glad you did touch on the GLP one agonist. 'cause you know, we hear, and we're still learning so much about those intake and others and related to weight loss and, and, I, that is amusing [00:47:00] how your patients come back to you with, such relief and, gladness.

But I, I think we, related in previous episodes that we talk about how, Dr. Mayo once said that the, the aim of medicine is to prevent disease and prolonged life, while the ideal is to eliminate the need of a physician altogether. So, right. There you go. So, Going is, I mentioned I wanted two, you brought it up earlier, talking about the beautiful necks of EDS patients.

So, so here we are talking about now things like cervical spine instability or CCI, you, touched on Kiara and things like that. but I, just want to kind of add that variable into the mix here and what may change some of the symptomatology that you would find if it's, you know, we kind of, we worked our way downward, I guess, starting from the eyes and the retina, going back to now the tonsils and then further down into the cervical spine.

Where does all, where do all those symptoms change in [00:48:00] that mix? 

Dr. Eric Singman: So, as I said, you know, like I said, the, and I'll say it again. The Achilles heel of s Dan patients are their necks when they have, when a person has a bad neck. And I get this with my t traumatic brain injury patients too, because you can't hurt your brain ally without getting neck trauma.

They're connected. I just have never seen it personally there. You always have some degree of neck. When the necks are bad, I don't see things getting better. a patient comes to me with visual problems and I ask them, how's your neck? And they say, my neck is horrible. I tell 'em, I'm gonna be very straight with you.

I don't think I'm gonna be able to get much done. If, in terms of, you know, let's say we wanted to use orthotic therapy at home, some home exercises on a computer or something for some of the vision problems we see, because that's all they really need. They don't need to go in office therapy. In my experience, I don't need to see that.

I say, I'm not even gonna try it with you. I mean, if you wanna go ahead, I'm not gonna stop you. But it's not [00:49:00] really expensive. You wanna fool around with it. But in my experience, when the neck is bad, I just don't get things done. And you know, my theory as to why that's the case, and I was just telling the sweet lady who called me today on the phone, after, was that, after see your podcast was that, you know.

Your i's job is to immediately, I is to look at things no more than 15 degrees at most off axis. So if I wanna look from, let's say I'm looking at an image of Linda, and then I wanna look to degrade, and I, want that, change is enough that I actually see my chin go up and I'm, look, literally I'm moving my eyes inches.

Okay? That's how your brain works. Your brain depends on your eyes to lock onto a target after your neck and head, move the eyes into the correct location and your eyes are the very fine locking on. Very fine tuning. When someone's neck is [00:50:00] bad, consciously or subconsciously, or both, they don't wanna move their neck or they, can't move their neck and so they're gonna try to move their eyes more than they should.

As I said before, it's like having a race horse pull a plow. It's not their job to do that. And the eyes are gonna be uncomfortable. The vision's gonna be uncomfortable. They're gonna have eye strain, they're gonna have headaches. And literally, I feel like there's nothing I can do about it because it, because you're asking your eyes to do things that are not their job.

Dr. Linda Bluestein: Okay. Well that's really, helpful. there's so many things that can go wrong. It's just a, it's just amazing that people can manage as well as they can a fair bit of the time. we don't have a ton of time left, so I wanna get to some of the top red flags that we should be aware of when a person might be getting taken advantage of.

You talked about this person at the beginning and you made some reference to, the dark side. how does a person know that [00:51:00] they're being sold snake oil? What are some things that they should be looking for 

Dr. Eric Singman: if the doctor says, I don't know. If the doctor doesn't ask why the problem is there, if the doctor doesn't explore where the problem is.

If the doctor simply takes the patient's word for it, and I'm not saying they doctors should listen and believe the patient, of course, but if they simply take the patient's word for it without thinking along a differential diagnosis, without making sure there's nothing else underly, that's a red flag.

If a doctor says if the, if a doctor only has a hammer and treats every problem like a nail, that's a problem. So if you have a doctor who says, you know, like this, woman who called me who listened to she, she went to an a doctor and the doctor gave a prism. I said, well, why'd you have did? Why did he ask why you had the double vision?

Well, I told him, it was after this thing that happened to me and he took it for granted. And, I said, but the thing that happened to you, it doesn't make any sense that it would cause double vision, so there must be [00:52:00] something else. So he didn't explore that, and that really scared me because double vision could be, as I said, something dangerous.

So. One thing I look for is if the doctor doesn't really find out why, or really ensures the reason why. The second thing is I look at the doctor's credentials and, physicians take a Hippocratic oath to do no harm. And in my opinion, that includes no harm to the pocket. Okay? Because that's harm too. And so if I see someone who says, you can come to me for this therapy, it costs thousands of dollars and you have to buy your stuff from me and et cetera, et cetera, et cetera, then I'm gonna say, wait a second.

Wait, slow down, back the truck up. I gotta, I have a problem with this. I have a problem with this. If something does, if something has to pass the sniff test, patients who are desperate and in pain [00:53:00] oftentimes won't take time to do the sniff test 'cause they wanna get better. And you cannot blame these people.

I would never blame them. You have to empathize with them. But by the same token, you also want them to not go down, you know, a garden path and something that's dangerous, as you said before, Dr. Knight. And so what happens is, I, so red flag is it's gonna cost a lot of money and insurance doesn't cover it.

Insurance covers a lot of stuff. It just has to have a medical sound reason for it. I do peer-to-peer review work for in utilization review, and I also do peer-to-peer work on behalf of my patients. And I can tell you right now that most insurance companies have guidelines that make it very clear what they cover and why.

And for the most part, those guidelines are fairly reasonable. Some of the guidelines, I think, are a little strict. They're a little, they're always a little late to get into things. Like I have a patient who really needs GLP one to lose weight because it will help her with her elevated brain pressure.

And I have to do a [00:54:00] peer-to-peer explaining why it's not just cosmetic, it's therapeutic, but I get that. Two years from now, I will never have to make that call. It's gonna be accepted because elevated body mass causes lots of disease, right? So, but right now it's same thing. You know, Medicare has a inpatient only list of things that you could do surgery on.

It has to be done in patient, that list is gonna go away because everything's becoming outpatient. But right now there are still procedures that they say should be impatient. I get that as we get better. So, so insurance is slow to catch on, but they do catch on. So the fact that insurance has never caught on for some of these therapies, whether they're vision therapies or some of these chiropractic therapies that I see, the fact that they've never caught on despite the fact that these therapies have been offered for years.

Says to me, we're missing the clinical data showing these therapies are valuable and patients therefore should ask themselves, well, why isn't this covered? They, at the [00:55:00] very least, the patient should ask the doctor, how long has this therapy been around? And if the doctor says, oh, it's been around for decades and the insurance doesn't cover it, say, well, why haven't they covered?

Because they're mean bad people in insurance companies. Okay, that's one possibility, but that's usually not the right. 

Dr. Linda Bluestein: Well, that's super helpful and I wanna ask about mast cell activation and inflammation in the eyes, and then we'll move on to the listener questions before we wrap up. What should we know about mast cell activation?

When it comes to the eyes? 

Dr. Eric Singman: Mass cell activation, patients are really sensitive to all medicines, number one, so I'm very careful to try to use, if I have to use eye drops in these patients, I try to use preservative free ones because I just try to lower the amount of different chemicals that mast cell patients get.

You just, I just, it's just my habiting custom to do that. Second mast cell patients, because mast cells are involved in allergy and inflammation, mast cell eye, [00:56:00] patients routinely seem to have dry eye, and dry eye can cause a whole host of other problems. Whether it's red eye discomfort, chronic low level inflammation, blepharitis, which is inflammation lids, it becomes a vicious cycle, a world of its own.

So I try to make sure I look for dry eye. I ask about dry, and I try to treat dry eye. I try to treat it with nonchemical methods if I can. But the way dry eye works is that because dry eye becomes a inflammation that causes the tear film to become a bit of a witch's brew that Reese causes its own inflammation.

My first order of business is to put out the fire. Anti-inflammatories, whether it's something like cyclosporine or, other medications like Xiidra, put out the inflammation first to improve the quality of the tear film. Once I approve the quality of tear film, then I might go to what are called punctal plugs.

There's [00:57:00] these little plastic plugs that go into nasal al system. They're easy to put in, they're painless, they're safe, and that prevents the tears from draining down the natural nasal lacrimal duct into the nose. That's the natural drain of the tears. By plugging the drain, I increased the volume of the tear film and that, but I wouldn't do that until I first increase the quality of tear film or else I'm just making the problem worse.

The other thing with mast cell patients is I routinely try, chromium, sodium eyedrops, because I, they, are mast cell degranulation inhibitors. And so those drops in my experience, usually seem to be tolerated very well by patients and usually do a pretty good job. If the patient has generalized MCATs, then I might try to treat their eye problems through general means rather than topical means only.

And that would be say like the gastro, the oral, the [00:58:00] oral gastro chrom and sodium. And I've had really good success with that. sadly the generic version has been almost impossible to find, and so only the name band gastric has been available. The problem is I have patients where only the insurance company would cover the generic, and it's understandable.

The generic is much less expensive than the name brand, but I've had to write letters to insurance companies explaining that the name brand, just the generic, is just simply unavailable and so they have to cover it. so that's an example of, you know, where you try to be a advocate for your patients.

But I've had some, I've been very pleased with the oral gastric success that we've had in helping the eyes too. I still sometimes have to use the topical therapy and I still sometimes have to increase the tear film, but, you know, it depends on the patient, their symptoms, if they don't have a lot of dry eye symptoms, but they have a lot of mast cell symptoms and that's when I recommend the gas.

It's funny, I've only had to order it five or six times because usually they have either a rheumatologist or an allergist [00:59:00] who does that for them. But some of these patients were, you know, sometimes it can be a long time to get an appointment. So yeah, the sympathy of a patient, if you know it's mast cell and you can tell it's mast cell, you give them the medication.

Dr. Linda Bluestein: Yeah, it's, crazy how, it can be so hard to get medications nowadays that are generic. I remember when I was working in the operating room, you'd come in and say, well, what don't we have today? Is it fentanyl? Is it Midazolam? Like, what do you know? And you have to get creative 'cause it. but I do sometimes write for compounded CHONe, which I know can benefit people sometimes too, because then they're not dealing with the plastic vials and stuff like that.

But of course that can be costly as well. I do wanna move on to the, listener questions 'cause I know that they are really hoping to get a couple of answers. So the first one is from Marta. And Marta says, I am very grateful for your podcast. It gave me insight to understand struggles that no doctor earlier connected to.

Before, I have heard you saying that it's [01:00:00] possible to send questions to Dr. Eric Singman regarding eye issues. I'm struggling with a change that happened five years after LASIK eye surgery, showers of floaters and tiny floating lights that look like glitter. I'm a woman in my early thirties and I wanna keep my eye health.

The doctor that checked me in Lisbon and said, my retina detached from the vitreous, but it's stable without any breaks. Now I don't know what I can do if there's a chance for improvement. I struggle looking at the sky and my eyes are very sensitive to light. Dr. Singman recommended to watch out for hitting one's head.

Maybe I don't, but I don't know if I can continue my hobbies because she does AcroYoga gymnastics and aerial hoop. and this also includes being upside down at times and some impact. I would be very thankful if you could pass my information to the doctor or if you could let me know what I could do.

I'm from Poland and I don't find any doctors with such expertise as yours. Thank you in advance. 

Dr. Eric Singman: She's gonna, I have to say, 

Dr. Linda Bluestein: oh. 

Dr. Eric Singman: I'm gonna tell you right now. [01:01:00] first of all, the flashes that come with a vitreous detachment, and she seemed to describe that pretty well, flashes, and the flashes may or may not continue.

They usually do settle down some, but the fact that she has LASIK means that she probably was a high myo, which means she was very nearsighted. That's why she would've, the LASIK probably, I presume. And patients who are nearsighted have thinner retinas and have, a greater chance of retinal tears and retinal detachments.

And so one, I would strongly recommend that being upside down and impact sports or anything. you know, concussion sports impact sports, are avoided. like I said, I hate to say it because, you know, gymnastics is, it's, a beautiful sport. it's, flying art. I mean, to turn a human body into artwork is a beautiful thing, but I just think it's, it would be a dangerous [01:02:00] thing.

in terms of looking at a sky, you have to be careful to separate what is normal and what's not. If I were to have any human being look at a uniformly gray or uniformly blue sky, they will have, they will see things floating and moving because they can see their own red white blood cells going in and out of vessels.

They can see their own red blood cells moving in their capillaries, and they can see the natural veils, which are like lines of hyaluronic acid that keep the vitreous gel in its place gently floating around. So anyone will have that. So the floaters, the floater part has to become sort of an acceptance.

it's hard to get, it's hard to avoid that. As far as the flashes go, that's something that needs to be, questioned. If the flashes come, let's say just occasionally sporadically, they probably can be ignored. If the flashes come every [01:03:00] time someone moves their eyes, then you have to worry that there may be what's called vitreoretinal traction.

And even though there's not a retinal tear at the parse plane or the front of the eye, it could be you have to look for the, especially someone who used to be myopic, used to be nearsighted, because the nearsighted eye is generally a longer eye and has a greater risk of retinal detachment tears. That person should have, you know, very careful regular retina evaluations to make sure there are no impending tears.

Now clearly. Because we can see one cone or one rod activate as a flash, the cellular level, if there's vitreoretinal traction, of the vitreous, because the vitreous is a jelly, but it has a skin like a grape and it's attached at the eye. If there's pulling of the vitreous on the retinal periphery, even if it's not breaking it, it still can cause the light flashes.

And humans can sense that even if a doctor doesn't see a retinal hole or retinal tear. But that means if it's always in the same place, then the doctor definitely [01:04:00] wants to keep an eye on that patient to make sure they don't have some ending tear. Otherwise, there's not always a lot to do for it. But in, in that, that, that patient is having a difficult time and you don't wanna force a patient to choose between the things they love and, their health, that's a terrible choice.

Right. But, in this case, you know, I, would, be so careful about. Sports like that. I tell my patients, if you can stand chlorine in a pool and many of them can't, I always advocate swimming. I know it's just the least impact. Yoga is wonderful. I don't like yoga upside down, but yoga itself is wonderful.

But that I think is magnificent. A patients do great. It's a great exercise too. 

Dr. Linda Bluestein: Yeah. So long as they don't push into hyperextension and which can be really tri tricky. 'cause of course they can be really good at it and people ooh and ah, they close is 

Dr. Eric Singman: so flexible. 

Dr. Linda Bluestein: Yeah. Yeah. okay. So the other question is, [01:05:00] could you please ask Dr.

Singman about his opinion about some rehabilitation approaches used by neuro optometrists? I'm referring to using the Z be test to remediate spatial deficiencies in non image forming, retinal processing, and then wearing special glasses to integrate visual and sensory stimuli. I am a hypermobile individual with A DHD and sensory processing difficulties, so helping.

With symptoms without relying on medication for mild to moderate learning difficulties might sound very attractive. But given the price of the evaluation and treatment, I don't wanna spend a fortune if this is not valid or a snake oil. Thank you so much for your time. Your podcast is absolutely amazing.

Super helpful and informative. 

Dr. Eric Singman: Snake oil next. 

Dr. Linda Bluestein: Okay. 

Dr. Eric Singman: Pure, unadulterated, purified. A hundred percent die in the wool snake oil. 

Dr. Linda Bluestein: Okay. That makes it easier. So e vita? Yeah. Eli e Vita. You have an answer to your question. That was snake oil. Okay, wonderful. as you know, Dr. Singman, [01:06:00] we end every episode with a hypermobility hack.

Do you happen to have one for us? You've already given us lots of tips, but do you happen to have like a quick win for us? 

Dr. Eric Singman: I think the, I think for this hypermobility hack, I would probably say it's okay not to have a doctor who's s damn most literate. Just make sure they're SDA most willing to learn. And most doctors are like that.

Dr. Dacre Knight: Yeah. I share that with my patients as well. I mean, it's, better to have something with someone who is willing to learn and listen. Right. Rather than just be lost on your own. And, patients often find themselves in that situation where they're having to do so much on their own, and that's unfortunate.

Dr. Linda Bluestein: Yeah, it is super unfortunate that they have to do so much on their own. But I do see people say things sometimes on social media. I can't believe it. My doctor didn't know how to pronounce AORs Dan Los. I can't believe it. I had to educate them about it, and I would say, wow, if they were listening and they were wanting to learn, I mean, we have to know about a lot of things.

I think, you know, a [01:07:00] lot of people don't realize, they're like, oh, we should spend more time in medical school on Aler Danlos. Well, I, of course, I agree with that statement as somebody who's treating this population of people. But I'm sure, as both of you having been in medical education, everyone's competing for that time with the medical students, and there are just so many things to cover and not enough time to cover it.

So, I think if you have somebody who's, I know, Dr. Knight, you've said this multiple times in your lectures, and I've said similar things. If you have a doctor who's curious and willing to learn and empathetic, that goes a really, long way. 

Dr. Dacre Knight: Well, I've learned a lot from Dr. Singman today, so I'm very grateful.

Dr. Eric Singman: Thank you. 

Dr. Linda Bluestein: Before we close, Dr. Singman, can you just remind us where we can learn more about you and or where people can, get in touch with you? 

Dr. Eric Singman: Yeah, like I said, if you wanna, you know, they can, my website is University of Maryland. They can look on that site there. and as I said, I, you know, if patients call me just, or they can [01:08:00] email me and just with questions because I got, my, I, completely failed.

What I was trying to do at our last podcast is that I was hoping to help patients be able to divert so they wouldn't have to, you know, waste their time with me and actually go to the doctor they need to see. But I got lots and lots of calls since the lead podcast and from the nicest people in the world, just wonderful people.

And I, you know, as I said, I'm happy to help. A little bit of guidance, but most people, I think most of my patients have shown that they have the resilience, the intelligence, and the, savvy to trust their gut and recognize that something is, you know, is right. But if they, need a little bit of extra guidance of, you know, where to go with this, they're always welcome to, they, they have my, you have my, you can put my email and my cell phone up.

That's fine. 

Dr. Linda Bluestein: Okay. That's so generous of you. I, whenever people do that, I always wonder what's gonna happen if their, phone's gonna blow up or what. So. Well thank you so much for taking the time to chat with me again today, and I'm so glad that Dr. Knight was able to join [01:09:00] us as well. I'm sure that this conversation is, will be so appreciated by all of the Bendy bodies listeners and, really just appreciate you both.

Dr. Eric Singman: Always a pleasure. Thank you so much.

Dr. Linda Bluestein: Thank you so much for listening to this week's episode of the Bendy Bodies Podcast. If you'd like to go deeper, I share additional education, clinical insights, and resources in my newsletter, the Bendy Bulletin, which you can find on substack@hypermobilitymd.substack.com. You can also help us spread the word about connective tissue disorders by leaving a review, sharing this episode, or sending it to someone who needs it.

These small actions truly make a difference in raising awareness about conditions that are still widely misunderstood. And don't forget. Full video episodes are available every week on YouTube at Bendy Bodies Podcast. As many of you know, I offer one-on-one coaching and mentorship for both individuals living with connective tissue disorders and people caring for them.

You can learn more about these options on the servicesPage@hypermobilitymd.com. You can find [01:10:00] me Dera Linda Bluestein on Instagram, Facebook, TikTok X and LinkedIn, all at hypermobility md. As part of our collaboration with the UVA Ehlers-Danlos Syndrome Center, we also wanna share some of their helpful resources for questions or appointment inquiries.

You can contact the UVA EDS Center at our uva. EDS center@uvahealth.org. Again, that's the letter R as in Robert uva, EDS center@uvahealth.org. You can find answers to common questions at uva health.com/support/ EDS slash faq. Our incredible production team is human content. You can find them on TikTok and Instagram at Human Content Pods.

As you know, we love bringing on guests with unique perspectives to share. However, these unscripted discussions do not reflect the views or opinions held by me or the Bendy Bodies team. Although we may share healthcare perspectives on the podcast, no statements made on bendy bodies to be considered medical advice, please always consult a qualified healthcare provider regarding your own [01:11:00] care.

For more information about the Bendy Bodies program, disclaimer and ethics policy submission verification, licensing terms, HIPAA release terms, or to get in touch with us, please visit bendy bodies podcast.com. Bendy Bodies podcast is a human content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.

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