71. Examining Head, Spine, and Chest Pain with Pradeep Chopra, MD

Episodes have been transcribed to improve the accessibility of this information. Our best attempts have been made to ensure accuracy,  however, if you discover a possible error please notify us at info@bendybodies.org

00:00
Dr. Pradeep Chopra
I think all Eds patients have pain, but at times this pain will go up to a point where they become non functional, and that's when they start seeking treatments. But they have pain all the time. It's just that they've grown to accepting it as, hey, this is normal. 

00:30
Jennifer Milner
Welcome back to the Bendy Bodies podcast, bringing you state of the art information to optimize your health. This is co host Jennifer Milner, a former professional ballet and Broadway dancer who struggled for years with hypermobility related problems. Now I train dancers to ensure the next generation of hypermobile artists are better equipped to work to their fullest potential. 

00:47
Dr. Linda Bluestein
I am Dr. Linda Bluestein, the hypermobility MD. I started Bendy Bodies to provide accessible information for everyone on the hypermobility spectrum. Combining my medical education and personal experiences enables me to treat and coach patients and clients to optimize their quality of life. This information is for educational purposes only and is not a substitute for medical advice. 

01:04
Jennifer Milner
Today we wanted to talk about the problems that can occur in the head and spine and neck and chest, which sounds like we're just kind of throwing a dart at different parts of the body, but they all are kind of connected. And this series that we're doing, Dr. Chopra, is we're really trying to break it down into parts of the body rather than specialists, because there's so much overlap between issues within one certain area of the body that they're very difficult to parse apart on their own. So we thought this would be a helpful way to look at it. So when we're looking at the head, the spine, the neck, the chest dr. Chopra, why are these topics so important when we're talking about Eds? 

01:36
Dr. Pradeep Chopra
I call this connecting the dots, Jennifer, in the sense that you have to look at the human body as a whole. And I can't have a patient come into my office with one complaint and then not relate it to other things. 

01:50
Dr. Pradeep Chopra
That are causing it. 

01:51
Dr. Pradeep Chopra
And so it's important to understand that and just to make sure that we don't miss anything. The way I like to do it, and I think the way most doctors do, is they start from the head and then they walk all the way down to the toes. That's how we teach our medical students. We'll say, look, there are two ways to go about it. One is you can go physically from head toe, thinking of all the causes of the condition, possible causes, and then you rule them out. 

02:17
Dr. Pradeep Chopra
Or you can go by systems. 

02:19
Dr. Pradeep Chopra
And over the years, I've found that going anatomically from the head down to the toes is the best approach. Patients understand that easily. Hopefully, I didn't miss any organ by the time I finish. I kind of jumped out of my usual norm of going from head toe was when we had our first podcast on abdominal pain, because I was just, well, for one. I was hoping it would be just one abdominal pain podcast. But here's Dr. Bluestein and Jennifer Milner, who've grabbed onto me onto the rest of which is fine because I want people to understand on their own and not be solely dependent on doctors to diagnose them or at least know what they have and understand that is it a serious thing or is it not a serious thing? For example, brain fog, it can be a little scary and once they understand why they have brain fog, it's a little reassuring. 

03:13
Dr. Pradeep Chopra
That's why we are going into this, going from head toe. And on this podcast we'll go from the head to the neck, including the neck and possibly even the thoracic spine. 

03:27
Jennifer Milner
Yeah, that sounds great. So how about we dig in? 

03:31
Dr. Pradeep Chopra
So I'm going to start with headaches. Headaches are really very common. Again, it's common in the non Eds population as well as the Eds population. So I've sort of teased out what's more common in the Eds population and it turned out to be about 25 different reasons for having headaches. And then I teased out the very rare ones down to the more common reasons. And some of them I'm going to list them and then later on I'm going to discuss all of them. But the common causes of headaches is of course the first one is migraines. Again, I don't know if there's any relationship between migraines and Eds, but we do see a lot of migraines. The second one is KRE malformation. Then we look at cervical genic headaches from what are called Craniofacial pain or TMJ or temporal mandible joint dysfunction, headaches from Pots postural orthostatic Tachycardia syndrome, headaches caused by Tethered Cord syndrome. 

04:22
Dr. Pradeep Chopra
And then you have the two culprits high pressure because high pressure headaches, also known as intracranial hypertension. And then you have the low pressure headaches usually because of spontaneous CSF leak. And then you also get headaches from cranio cervical instability. And as we go along, I'll discuss the symptoms of each one and I cannot go into the treatment in depth on these because a lot of that is based on patient's presentation. So going to the first symptom is where patients complain of pain in the whole head and they have double vision and they also feel a throbbing in their ears and their headache increases when they laugh or cough. So just to remind you again, this is really important. So they may be having a headache and if they laugh or cough or sneeze, their headache increases significantly and then it drops down to a very baseline severe headache. 

05:14
Dr. Pradeep Chopra
They also have this pulsing ringing in their ears and not always, but sometimes they may have a double vision. These are symptoms of increased pressure inside the head. Now, the thing with the head is that it's a closed structure, it's a box, it's a round box and it's closed, it doesn't expand. And so if the pressure changes either way, whether it increases or drops down, it becomes very symptomatic. So raised pressure inside the head can be from many different reasons. And I told you the symptoms, the big one being the headache increases with coughing or sneezing. And also the headache feels different. It feels like the head is going to explode from inside. It feels like there's an intense pressure inside the head. Now, among the common reasons for having headaches, this kind of a headache from increased intracranial pressure is narrowing of a blood vessel inside the brain. 

06:11
Dr. Pradeep Chopra
It's called venous sinus stenosis, and usually it's the transverse venous stenosis. So what it means is that one of the veins is narrowed. The theory behind that is why should you have a headache from a narrowing of a blood vessel inside the head is that the amount of blood that goes inside the head should be exactly the same that comes out. So what goes in has to come out. But if there is a difference, if there's plenty of blood going inside the head but not the same amount coming out, that adds to an increased pressure. And that can be from a narrowing. 

06:42
Dr. Pradeep Chopra
Of a blood vessel. 

06:44
Dr. Pradeep Chopra
The second reason is from carry malformation, and we will discuss that when we get to carry malformation. How do you diagnose this? Let me tell you how you don't diagnose this, and that is a spinal tap. Absolutely do not get a spinal tap. And I'll explain to you why. The fluid inside the head is produced inside the head. It's called CSF. This CSF pressure inside the CSF, as it's produced inside the brain, then flows out of the skull and down into the spine. And it goes all the way down to the spine and then goes back up into the skull. And so it keeps circulating within a closed system. Now, a spinal tap is a lumbar puncture. They stick a needle into your back and then they look at what's called the opening pressure. And then with that, they decide whether the pressure inside the head is high or not. 

07:33
Dr. Pradeep Chopra
There are two problems with that. One of them is that what if there is an obstruction of fluid at the level of the neck, for example, in carry malformation, the pressure inside the head is very high, but that high pressure is not transmitted down to the spine. So if you do a spinal tap in these patients or a lumber puncture, the pressure is going to show up as being normal. So the second problem issue with that is that patients with Eds, the covering, the bag that holds this fluid, is very elastic. So it's like measuring pressure inside a thin ward balloon. And you're not going to get the right pressure because the covering in which the fluid floats stays in, is very thin and expensile, which is called a dura matter. The dura matter is very thin and you're not going to get a good pressure reading on that. 

08:22
Dr. Pradeep Chopra
The third, of course, reason is that you do a spinal tap. The hole does not close up, and you wind up with what's called a postdural puncher headache, which is even worse than the regular headache. But that's besides the point. The point is that the pressure inside the head may not match the pressure in the spine. So how do you solve this problem? The best way to solve this problem is to measure the pressure inside the head. And that's done by a very small it's a kind of a procedure called putting in a subarachnoid bolt. It sounds gruesome. It's not really a bolt, but it's a little transducer that measures pressure. So the surgeon will go in there and make a teeny, tiny hole and puts it in there. And then that goes to a computer, which records it continuously. The patient stays in the ICU overnight, and they look at the pressure readings over a period of time inside the skull, and that is a far more accurate way for testing pressures inside the head. 

09:14
Dr. Pradeep Chopra
So, doing a spinal tap, going back to the diagnosis of why somebody would have high pressure in their head, a spinal tap is a bad idea or I should say, not a good idea. You can do what's called an Mr. Venography. So they shoot some dye into your vein, and then they look at the map of this dye in the brain and see if there's any narrowing there, which I think this is a really safe technique and a very valuable technique. If you suspect that this is because of carry malformation, then you can get an upright MRI. Now, I've had neurologists say, well, this cannot be high pressure inside the head because there are no eye changes. If the pressure inside the head stays very high for a long time, then you start to see eye changes, okay? Obviously, because everything is under high pressure, you don't want to wait for that. 

10:01
Dr. Pradeep Chopra
You do not want to wait for eye changes. That's a complication. You don't want to wait for that. You want to fix this before any eye changes happen. So it's not a good idea to wait for a change in your eyes before you go in for looking for a high pressure inside the head. How do you treat this? So, in medicine, there is only one rule. You treat the cause of the problem. That's the only rule. Everything else is Band Aid. So you look for if there's a high pressure in the head and if it's because of a narrowing of a blood vessel, then they sneak a little stent into that, and that opens up the blood vessel. They don't open up the skull. They do it through the arm or through the leg and get into the brain. And then they place a little stent. 

10:47
Dr. Pradeep Chopra
And if it's carry malformation, then, of course, they do a decompression surgery in some cases, you never find the cause of high pressure, which is called idiopathic. So you don't ever know why the pressure is high in these patients, but they have high pressure. In that case, they do what is called a shunt. So they put a little thing on the head through the skull, and that then drains the fluid, the CSF, and it goes through a little tube hidden under your skin and into your belly, and it keeps draining from there. And so it lowers the pressure inside the head. Believe it or not, that's computer driven. And they can actually use a little remote to control the amount of pressure being lowered. They don't want it to be lowered. 

11:28
Dr. Pradeep Chopra
Too much, so they can do that. 

11:31
Dr. Pradeep Chopra
So these are the reasons why patients with intracranial hype, where patients with Eds can have headaches from raised intracranial pressure. Just to recap, the most common cause is there's a narrowing of a blood vessel or carry malformation? Doing a spiral top is a tap is a bad idea. Mr. Vinography is good. And if you have symptoms of carry malformation, which we'll discuss a little later, treating carry malformation makes a big difference. I forgot to mention that there is a pill that you can take, but from practical experience, I really haven't found the pill to be very useful. It does help in the initial stages and then it doesn't really help. But again, just be careful because you don't want the pressure inside the head to be too high. 

12:10
Jennifer Milner
What's really interesting to me about this conversation is that you started out saying there's about 25 different causes of headaches and you sort of narrowed those down. And I think the average person would say they think there's like three types of headaches. There's a sinus headache, there's tension headache, and there's migraines, right? And that's just kind of what we've heard from over the counter drugs. And here are these three types of headaches. So just hearing that there are so many different types and they can be caused by so many different things has to be comforting, because a lot of times we go to the doctor and they're like, we have a headache. And they're like, is it like this or like this? Does it go over the head or the side of the head? And they go, okay, well, then it's this. And I know some people with Eds with chronic headaches that's pretty much daily and being told you're not crazy, there are a bunch of different things it could be, let's dive a little deeper and see what the cause could be. 

12:52
Jennifer Milner
As you said, everything else is a Band Aid. So trying to get to the cause of it rather than just have you tried some over the counter ibuprofen is hugely comforting. So that's really interesting to hear. Thank you for that. 

13:03
Dr. Pradeep Chopra
Actually, you said that most people are told there are three types of headaches. I can shorten, it down to two types of headaches. Either your headache is from inside your head or it's from outside your head. And that's important because if it's inside your head, it's most likely a migraine. And if it's a migraine, the treatment is completely different. And if it's from outside the head, of course then there are other reasons. But in any case, moving on to headaches, this is so that our listeners don't get a headache from listening to me. 

13:32
Dr. Linda Bluestein
Before you move on to the next category, I was curious about Eagle syndrome. And would that be included in that first section? 

13:38
Dr. Pradeep Chopra
Yes, ma'am. Eagle syndrome is right inside this. 

13:40
Dr. Linda Bluestein
Okay, great. 

13:42
Dr. Pradeep Chopra
There are a couple of other reasons for headaches which I forgot to include in my list. TMJ temporal mandible joint can cause headaches and sinus headaches. Frontal sinus that's a headache in your forehead is also very common. And the reason for that is mass Cell Activation syndrome. So when we get to the mass cell activation syndrome in the 300th episode of our podcast, we'll talk about that. 

14:09
Dr. Pradeep Chopra
So one of the headaches is that. 

14:11
Dr. Pradeep Chopra
I always ask patients is, does your headache get worse when you stand? And a lot of them will say yes, but then the critical question is, when you lie down, does it get better? And they'll think about it and then they'll say yes. And that's when I ask them, does it only get a little better or does it go away? And there's a big difference between that. So we are going to talk about the one that goes away. So the minute they lie down, it goes away, and then the minute they stand up, it comes back. These are symptoms of low pressure headache. So the pressure inside the head is now low. And when it's low I'm trying to give you a picture what happens is the brain kind of settles down. And the term for that is boggy brain. That's what they'd look for actually in MRIs of the head in these cases. 

14:57
Dr. Pradeep Chopra
And they look for what's called a boggy brain, which sounds a little bit gruesome, but it's actually the brain literally sort of falls down because pressure is not enough to hold it up. It's a very intense headache when they stand up. And the best part is it resolves fully when they lie flat. This is often because of cerebral the fluid inside the head leaking out. For whatever reason it leaks out. And there are several reasons why it would leak out. One of the reasons why it would leak out is if somebody went in there and did a spinal tap or what they did a spinal tap to look for a high pressure headache. And now you have a leak, which adds on to your headache that you already had. So what's happening in these cases is that there's a hole in that remember the dura matter, the covering around in which the bag in which the fluid is held, there's a leak in there and it's slowly starting to leak out. 

15:47
Dr. Pradeep Chopra
And so when you stand, it leaks out more. When you lie down, it doesn't leak as much. The treatment for this is fairly simple. They do what is called an epidural blood patch, or they might do an epidural fibrin, which kind of it's basically just glue that closes up the hole. If it is because of surgery, like somebody's had spinal surgery for whatever reason, and they wind up with a postdural puncture headache or a low pressure headache and none of these methods are working, then they go in there and do a surgical repair. But things that you can do at home are you can. Didn't we talk about hacks in our last episode? 

16:22
Jennifer Milner
Yes, and people love them. 

16:24
Dr. Pradeep Chopra
We're going to have the hack. This is a hack. Give us a hack for this is that you drink a boatload of caffeine. 

16:31
Dr. Pradeep Chopra
That helps. 

16:32
Dr. Pradeep Chopra
If you can drink a boatload of caffeine, then you can get caffeine tablets, the most common one being exception migraine. And that has a lot of caffeine. 

16:41
Dr. Pradeep Chopra
In it and that might help. The other one is to wear a. 

16:47
Dr. Pradeep Chopra
Corset around your belly. So that sort of puts a pressure on the fluid. It's not like it stops the leak, but what it does is it increases the pressure inside the CSF so you can do that. And they do say drink a lot of fluids, but I don't think that really works because the headache is so intense that it causes nausea and that naturally doesn't work. But we have our hacks. 

17:10
Jennifer Milner
And this is something that you've mentioned in the abdominal pain, or it sort of links to something with that, because in the abdominal pain, you talked about how with the connective tissue, things can start to just fall into gravity. And if they shift down just a little bit, it can cause significant issues, and it's replaying itself in another part of the body here as well. You're talking about boggy brain, right? That if things just settle a little bit, they can cause significant issues. And so I think it's yet another example of how loose connective tissue or different connective tissue is not just about the joints and that it has such ramifications. As you were saying, the duramata is so thin and if there's low pressure, for whatever reason, there's going to be issues, as we've seen with some pretty stellar headaches. So it's really not just about the joints. 

17:50
Jennifer Milner
It affects absolutely every single part of the body. 

17:52
Dr. Pradeep Chopra
Exactly. 

17:55
Dr. Pradeep Chopra
But I'm so excited that we got our two hacks in. 

17:58
Dr. Linda Bluestein
And I have a question before you move on and maybe you're already going to get to this about if these ever spontaneously close. If you have a CSF leak, is there a chance that it would spontaneously close then? 

18:08
Dr. Pradeep Chopra
Dr. Bluestein, I know you've seen lots of CSF leak headaches and it does spontaneously close in some patients, but not in Eds. They don't let go easily. There's one small point I wanted to bring about, which is an OD phenomenon where a person can have a high pressure headache and a low pressure headache. The thing is that when the pressure inside in these patients, when the pressure inside the brain starts to increase so much, then a leak develops in any part of the dura matter. It can happen in the spine, it can happen in the brain. There's a leak that develops. And what happens is CSF starts to leak out from there, and that lowers the pressure. So it's kind of a self sustaining mechanism where the pressure goes up, a leak develops, and the pressure now drops down to normal. Sometimes patients will complain of a very clear fluid draining from their nose. 

19:03
Dr. Pradeep Chopra
Up in the nose, there's a bone, which kind of there's a leak can develop there. This fluid is a very different fluid. It's very thin, literally like water, even thinner than water. It has a slightly salty taste. It's different from boogers. Everybody recognizes boogers. But this is different. And patients will tell you that is. 

19:27
Dr. Pradeep Chopra
That, oh, it's like water dripping down a faucet. And then it goes away, it stops. 

19:34
Dr. Pradeep Chopra
And then it comes back again. And that fluid can be tested for CSF. There's a test called the beta transferant test. You bend down, you let some of it drip into a little bottle, and you send it off to the lab, and they can do a beta transfer and test. So just because someone has a high pressure headache or symptoms of low pressure headache, you really have to look for who's the culprit here? Does this patient really have a high pressure headache, which is ending up in a low pressure headache? So the next one I want to talk to you about was carry malformation. So in this case, again, the headache gets worse when they cough or sneeze. Remember how I mentioned in the raised intracranial pressure headaches that the headache increases when they cough or sneeze? And one of the reasons was carry malformation. 

20:21
Dr. Pradeep Chopra
So here we are. The headache increases when they cough or sneeze. They have tingling in their hands and feet, difficulty swallowing, and this is just the basic head related stuff. And I'll get into a lot more about the symptoms of other symptoms of carry malformation. So for those who have not Googled it yet, this is a little education on what carry malformation is. Your brain lives inside a skull, and under at the bottom of the skull is a hole. And through that hole, the brain comes out. And at this point, it is now called spinal cord. And the part that's at the hole. 

20:53
Dr. Pradeep Chopra
Is called the brain stem. 

20:55
Dr. Pradeep Chopra
So the brain stem then is at the hole, and then it comes out through the hole, and that becomes a spinal cord. This hole is really important because in carry malformation for whatever reason, mostly because the skull is a little deformed. You can't see it. We don't exactly know why people have carry malformation, but the brain starts to push down and it pushes down through the hole. And what happens is when it pushes down the brain stem, which I just told you was at the beginning of. 

21:22
Dr. Pradeep Chopra
The hole, plugs that hole. 

21:25
Dr. Pradeep Chopra
And along with that, there is an organ at the back of her head called the cerebellum that also gets pushed down and that also gets squeezed. So in carrying malformation, not only do you have the brain stem being plugging the hole, the cerebellum also plugs the hole. And once the hole gets plugged, then the pressure. Now the CSF cannot leave the brain, cannot leave the skull and go into the spine. So it starts to collect inside the head, and the pressure inside the head starts to increase. And this is the point I was trying to make before, was that if you do a spinal tap in this patient, it will be normal. 

21:59
Dr. Pradeep Chopra
But when you do a bolt in. 

22:01
Dr. Pradeep Chopra
These patients, it's going to show us a high pressure. But we need to know what happens when the brain stem is compressed and when the cerebellum is compressed. So these patients obviously present with neck pain, but one of the most important things is they present with balance problems. The cerebellum is responsible for balance. So these patients have really poor balance. They often do complain of a pressure headache in the back of the head. It's associated with Pots like symptoms. So when we get to Pots, there are three reasons for patients having Pots. One of them is, of course, blood pooling down their legs. The second reason is your brain stem being compressed, which causes symptoms of Pots. And the third is an autoimmune dysfunction. So this is one of the reasons why they have Pots. And in my office, I have to differentiate, because if they have Pots because of their brain stem being compressed, then no amount of salt or fluid is going to fix it. 

22:55
Dr. Pradeep Chopra
You got to fix the carry malformation. They do have difficulty swallowing. The way to ask patients is if you have difficulty swallowing is, does it feel like your food is getting stuck in your throat? They have poor hand coordination. So these are some of the main symptoms of carry malformation. There are many other symptoms, but these are the symptoms. So pressure in the back of the head, balance problems, high pressure headaches, pots like symptoms, especially dizziness, difficulty swallowing these are all symptoms of carry malformation for. 

23:24
Jennifer Milner
People who are looking at this and trying to diagnose it. I know that carry malformation is best diagnosed with an MRI, but it's a certain position of the MRI, right? Isn't it seated, or am I thinking of something else? 

23:36
Dr. Pradeep Chopra
Oh, yes, that's an excellent point. I forgot to mention that. 

23:39
Dr. Pradeep Chopra
So the diagnosis is so I have. 

23:44
Dr. Pradeep Chopra
To back up a little bit. One of the phenomenon phenomena that happens in patients with Eds is the head sits on the spine. It's balanced on the spine. The analogy is, and this is a true analogy, is that balancing a bowling ball, that's exactly how much the head weighs, about eleven pounds. Same as a bowling ball balanced on. 

24:08
Dr. Pradeep Chopra
The end of a pin. 

24:10
Dr. Pradeep Chopra
So that's how delicately this part of the anatomy is, how delicate this part of the anatomy is, where the bowling ball is balanced on the tip of a pin. And this is all held down by ligaments. This is all tethered down by ligaments. And ligaments in me are strong. So when I sit, I'm not really using my muscles, I'm using my ligaments. But in Eds, what happens is, because their ligaments are lax, the bowling ball, or the head, settles down, it descends a little bit, and that's called cranial settling. So as the skull settles down, it sort of presses on the cervical spine. It presses on the neck bones of the neck, the spine portion of the neck, it presses down. And when it presses down, that's when you get a lot of the symptoms. You don't see this cranial settling when you're lying down. 

25:05
Dr. Pradeep Chopra
This cranial settling shows up only when you're upright. Hence, getting an upright MRI in these patients is important because you want to see the cranial settling. You want to see what happens when these patients sit up. So the diagnosis depends a lot on upright MRIs. It may not show up on a supine MRI, and so the centers, upright centers are not that common, but there are, around the country there are centers. It's kind of a sitting MRI. So you sit and then they take a picture. 

25:34
Jennifer Milner
Yeah, that makes sense, because that was also something we discussed, I think, Dr. Bluestein, when we talked about cervical instability and the importance of having the upright MRI for that. So, again, makes sense if your ligaments don't do as good of a job supporting you against gravity, that having to fight gravity would be crucial for an MRI, for people to have a true picture of what's going on. 

25:52
Dr. Pradeep Chopra
Right. 

25:52
Dr. Pradeep Chopra
And thank you for bringing that up, because I completely forgotten about that. So getting an upright MRI for the diagnosis of carry malformation is sort of critical. The treatment is, of course, surgical decompression. What they do is they widen the hole a little bit. 

26:08
Dr. Pradeep Chopra
That's basically what they do. 

26:11
Dr. Pradeep Chopra
The other type of headaches that you get are from clenching your teeth a lot. So they do say temporal mandible joint dysfunction. But this is more of a habit, and I don't think this is very particular in patients with Eds. We do see it in our non Eds patients. Also, you clench a lot, and clenching can be it's actually, in some ways helpful. Like when you lift a heavy item, you sort of clench your teeth. And then you get that extra strength. And that is a phenomenon which I forget the name, but anyway, so you clench your teeth, it gives you that extra strength. And also when it hurts, when something hurts, then you clench your teeth. And so there's a lot of clenching going on. And clenching is done predominantly by the chewing muscles. They're called the masseter and the temporal muscles. These muscles live the masseter muscle lives at the back of your jaw, just below the ear. 

27:02
Dr. Pradeep Chopra
You can feel it if you clench your teeth, you'll feel it expand or contract and then the temporalist muscle is on the side of the head. So these muscles get tired of constantly clenching and they start to hurt and then that adds to another headache. The treatment for that, there are many ways to treat it, from the simplest to the most complicated ones. And there are very few practitioners who. 

27:23
Dr. Pradeep Chopra
Actually know how to treat it. 

27:25
Dr. Pradeep Chopra
A mouth guard is not a good. 

27:27
Dr. Pradeep Chopra
Option because you're still going to be. 

27:29
Dr. Pradeep Chopra
Clenching on the piece of plastic in your mouth. If anything, if the mouth guard is ill fitting, then you're likely to clench even more. So we don't really recommend a mouth guard. It does protect your teeth, but that's about it. What I like to do is I like to shoot some Botox into the masseter muscles and into the temporalis muscle. And a little bit of Botox goes a long way in these patients. And if you really want to get fancy, then there are what are called oral appliances that sort of when you clench, you're clenching on air rather than on teeth. 

27:56
Jennifer Milner
And I think Dr. Bluestein, when we talked to Dr. Russick about jaw issues, she said that sometimes in her experience, people with hypermobility clench their jaws out of proprioceptive issues, like just so their jaw knows where they are in space. And sort of the physical therapy work that could be done to kind of get out of that and relieve some chronic headaches. It was really fascinating to think about. 

28:18
Dr. Linda Bluestein
Yeah, actually I started to chuckle when Dr. Chopra mentioned the jaw clenching because that has been a huge issue for me. My biggest problem over the past few years has been jaw pain, as Jennifer knows. So talking and smiling and all that can be a problem. But yes. And my oral surgeon that I go to, who was a dentist, and now she is a maxillofacial pain specialist, has really tried to educate me about the clenching. And I can't tell when I'm doing it's really hard. But apparently when you clench, then you transmit forces into the jaw. And so we shouldn't be touching our teeth more than I forget the number that they've said. And maybe Dr. Chopra knows, but yeah, this whole clenching thing, I think probably a lot of us do. And yeah, I think we're looking for stability and that proprioceptive input. 

29:01
Dr. Pradeep Chopra
So here we come to our hack section of the podcast. You guys should have a drum roll. Okay, we do so hacks for this one is that when you feel so firstly have this in your take it out from your subconscious mind and put it into your conscious mind. Which means you got to always keep. 

29:21
Dr. Pradeep Chopra
Thinking about it that I'm not going to clench. 

29:24
Dr. Pradeep Chopra
And if you do find yourself clenching, then open your mouth a little bit. 

29:29
Dr. Pradeep Chopra
Sort of just like a bird. 

29:31
Dr. Pradeep Chopra
Open your mouth a little bit or you can stick your tongue between your. 

29:35
Dr. Pradeep Chopra
Teeth and then in two minutes it'll be gone, then it'll be over. 

29:39
Dr. Pradeep Chopra
Sometimes I've noticed this when walking up the stairs and it hurts, your knee hurts or something. People will tend to clench and then that's when I tell them, start with. 

29:46
Dr. Pradeep Chopra
Opening your mouth a little bit. 

29:49
Dr. Pradeep Chopra
And I think there should be a double drum roll for this hack is. 

29:56
Dr. Pradeep Chopra
You know how when you have to. 

29:58
Dr. Pradeep Chopra
Take a flight early in the morning, like at 05:00 a.m. And you set your alarm clock for 03:00 a.m. And then you wake up exactly like ten minutes to three before the alarm goes off. And that happens, at least with me, happens a lot. I wake up ten minutes before the alarm goes off. 

30:17
Dr. Pradeep Chopra
And the reason for that is you've. 

30:19
Dr. Pradeep Chopra
Been thinking about it all day long. I got a flight in the morning at 05:00, I really need to get up at 03:00. And you've been thinking about it all day long. So when you go to bed thinking like, okay, I go to wake up at 03:00, I've had my alarm set up, okay? 

30:34
Dr. Pradeep Chopra
The brain beats the alarm clock by ten minutes. 

30:39
Dr. Pradeep Chopra
And that's a very common phenomenon. It doesn't happen on a daily routine basis. Like if you have to wake up for work, it doesn't happen because you're not thinking about it. But when there's an episode so it happens with singular episodes where there's something that you need to do important at 04:00, you wake up ten minutes before that. And so with this hack is that start thinking about okay, I should not. 

31:00
Dr. Pradeep Chopra
Clench when I sleep, I should not. 

31:03
Dr. Pradeep Chopra
Grind my teeth, when I sleep, I should not clench. Sort of keep thinking about it and eventually you'll stop clenching your teeth. 

31:10
Dr. Pradeep Chopra
And this has worked very well in. 

31:13
Dr. Pradeep Chopra
Patients where you can so they have to sort of have it in the again, you drag it out of your subconscious mind and you bring it into your conscious mind and then you bring it to the front of your conscious mind. This is the most important thing in your life is that you're not going to clench anymore. And so when you go to bed, especially think about it a few hours before you go to bed and you do stop clenching. And if you're thinking about it during the day, then again, if you clench, then you open your mouth a little bit, or you stick a tongue between your teeth. Hence the double hack. 

31:44
Dr. Linda Bluestein
Those are excellent double hacks. What about medications like SSRIs? Can't that influence clenching also? 

31:51
Dr. Pradeep Chopra
I haven't heard of that. SSRIs in general don't help pain. They do help with anxiety and depression. And when you're anxious, we do tend to clench, and in some form it might help, but that is a whole different issue. Like, if you have tremendous amounts of anxiety, which you need to be on an SSRI. So then in that case, of course. 

32:12
Dr. Pradeep Chopra
Then you can go on to that. 

32:14
Dr. Linda Bluestein
I think from this doctor that I've seen, I think she was saying that there's some data showing that SSRIs actually can increase clenching. 

32:21
Dr. Pradeep Chopra
Oh, okay. 

32:23
Dr. Linda Bluestein
But of course, we don't want anyone to stop their medication, based on what I just said. But a lot of these things are kind of multifactorial. But those are great hacks, because anything. 

32:33
Dr. Pradeep Chopra
That we can do with a less. 

32:36
Dr. Linda Bluestein
Risky intervention like that, right. There's no downside to bringing it into our consciousness. So those are fabulous hacks and double hacks. 

32:45
Dr. Pradeep Chopra
I am a cheap guy. I like to do so. Dragging something out of your subconscious mind and bringing it into your conscious mind is extremely cheap. And keeping your beak open is pretty easy. It may look silly, you're walking around with your mouth open, but it's only for a few minutes. So let's talk about cranio cervical instability, otherwise briefly known as CCI. Cranio is, of course, the head and then the cervical. And then the cervical is the cervical part of the spine, the neck, and there's an instability there. This is fairly common in Eds, and it's because each vertebra the whole complex. Remember I told you how it's the equivalent of a bowling ball balancing on the end of a pin? All of this is a marvel of anatomy, where everything is so well balanced and held together that we can still walk around with a bowling ball on our spine and still turn around and look around, and nothing falls off. 

33:44
Dr. Pradeep Chopra
But if something goes wrong in this intricate mechanism, that's when things then everything falls apart. And the problem here is that the ligaments that hold the head and the spine together may become loose and lax. And when they become loose and lax, then you're depending solely on your muscles. And muscles are not very good at working too hard, and they let go after some time, and then that's when you get the instability. In terms of cranial CCI, there's a spectrum. So you can have severe instability, which means you don't even want the patient to drive home and call the surgeon right away to like, all right, you can do some other stuff we'd get into later on, and that'll be fine. So I just want to know that there's a whole spectrum in that. So just wanted to help you understand the concept of cranial settling again. 

34:34
Dr. Pradeep Chopra
Remember we said the skull weighs about eleven pounds. And as it's balanced in the spine, by the way, for people listening to this podcast in Europe, it's 6 kg. 

34:45
Dr. Linda Bluestein
Yeah, no, that's great. 

34:47
Jennifer Milner
Helpful. We have people listening all over the world. 

34:48
Dr. Pradeep Chopra
So that's great. Right. 

34:49
Dr. Pradeep Chopra
So it's 6 kg. So you have this eleven pounds or 6 kg, that when you stand and because the ligaments are loose and lax, that bowling ball or the head settles down. It drops down and it drops down at the same time. 

35:06
Dr. Pradeep Chopra
When it drops down, it sort of. 

35:09
Dr. Pradeep Chopra
Puts the cervical spine out of place. The vertebra in there go out of place. I shouldn't say they get twisted, but it's something like that. It's like when you put something heavy on something and it deforms. So it sort of deforms the cervical spine. And that's why we need an upright MRI. And then the neurosurgeons and the neuroradiologists draw all kinds of lines of the computer and they measure these angles and say like, this angle seems to be off. And hence there is also cranio cervical instability. And some of those pictures you can actually literally see that the vertebra have shifted significantly when they're upright. Now that would not show up if they are lying down. You can actually see the shifting even on an X ray, an upright X ray. So I just want touch a little bit on imaging in Eds. Imaging in Eds is different from imaging in other people. 

36:08
Dr. Pradeep Chopra
Radiological imaging in Eds is different because it's a dynamic. You need to get dynamic pictures. Because if you take a picture, I'll give you analogy. Let's say you have a loose wheel on your car. One of the wheels is loose and it's now parked in your driveway. 

36:24
Dr. Pradeep Chopra
You will never have an idea which wheel is loose. 

36:27
Dr. Pradeep Chopra
There's no way you can guess which one is loose. It's only when you drive that's when you know that which wheel is loose. And it's the same thing over here. You have to take these pictures in different positions to see how things shift at different angles. So for example, when you do an upright MRI, you look to your left, take a picture. You look to your right, you take a picture, you look up, take a picture, you look down, take a picture. And then the neuroradiologists are going to put this on a computer screen, draw lines, angles, and then they can say whether there's been shifting or no shifting besides an MRI or an X ray. There's something called a DMX digital motion X ray and digital motion X rays are, there are far and few. But there are done here. And these people who do them can actually measure these changes in angles. 

37:13
Dr. Pradeep Chopra
A lot of them are done by chiropractors who look at this and they obviously understand mobility of the spine. So they can measure these angles. I don't think we've at least in the United States. It's not mainstream. You won't find it in a hospital or something. It would be more in a private practice place. So that's all about cranial settling. Now, I've talked a lot about cranial settling, and I want to segue into the reason why I'm so focused on that is when patients go in for surgery. So they go in for cervical spine surgery or cervical stabilization. Surgery, and if they're lying on the operating room table and their spine is all crooked, and the surgeon may go in and infuse it in that crooked. 

38:04
Dr. Pradeep Chopra
Position and the results are never good. 

38:08
Dr. Pradeep Chopra
The other way to do that is what is called an invasive cervical traction. And in this case, what they do is they put a pair of tongs on the side of your head, and there's a pulley. It goes over a rope, goes over the pulley, and then they put some weights and literally pull up the head. 

38:25
Dr. Pradeep Chopra
A little bit, and they start at. 

38:28
Dr. Pradeep Chopra
Usually ten pounds, and then they go to 20 pounds and then 30 pounds and not more than 40 pounds. And one of these points, the patient all of a sudden, things change. Everything improves significantly. Their tolerance to light improves, their tolerance to sound improves, their breathing improves. Their brain fog improves. Their lightheadedness improves. And the surgeon, the local surgeon who does this, they call it the Jesus moment. And I kind of told him, like, that kind of sounds a little religious, and somebody might not like that. He said, We've tried changing the name, but everybody has come back to the Jesus moment. And he said that. And I've seen videos of this. And these patients are thrilled by the experience of an invasive cervical traction. Now, let's say somebody has this so called Jesus moment or has numerically they look for an 80% response. If there's an 80% response to a few factors, like dizziness, brain fog, breathing, exposure to light, exposure to loud sounds, and if there's an 80% improve, then the patient is a candidate for surgery. 

39:42
Dr. Pradeep Chopra
And let's say I have Eds, and I get this. I do the invasive cervical traction, and my response is at 25 pounds. 

39:51
Dr. Pradeep Chopra
That is the weight I will have. 

39:54
Dr. Pradeep Chopra
On my that is the traction I'll have on my head when I go in for surgery. 

39:58
Dr. Pradeep Chopra
So when you get on the operating. 

39:59
Dr. Pradeep Chopra
Room table, they put that same traction of 25 pounds because that's your best position. That's the best position for the spine. The spine is the most straightened out at that position, and that's the position they fuse it. 

40:13
Jennifer Milner
That's so interesting. 

40:14
Dr. Linda Bluestein
I'm sorry. 

40:15
Jennifer Milner
I'm still, like, amazed that somebody thought of that. And that's so cool. Sorry, go ahead. I have nothing. 

40:21
Dr. Pradeep Chopra
I tried to think of analogy, and I could not, but the analogy would be if you're trying to repair a little stick, like it's a broken stick, and you put superglue, you really want that superglue the stick to be very straight and aligned before you put the superglue. And this is the situation where you want the neck to be in the most optimum position with the weights for. 

40:45
Dr. Pradeep Chopra
You to fuse this general. 

40:46
Dr. Linda Bluestein
And I think doing that when the patient is awake and can give that feedback so then they have that additional data is very helpful. I'm wondering for some people might be listening to this and think that maybe they've seen a neurosurgeon and they have not proposed that technique because I know some neurosurgeons do that right and some don't. Well, do you have any thoughts? 

41:07
Dr. Pradeep Chopra
Here comes another hack. 

41:09
Dr. Pradeep Chopra
Okay. 

41:12
Dr. Pradeep Chopra
If you have a surgeon that says, oh, no, cervical, I'm just going to fuse you, I can see it where the problem is. I'm just going to fuse you. So you're going to tell me that you're going to fuse my neck in the worst position that you're seeing on the MRI? If you come across that surgeon, just politely say thank you and run. 

41:31
Dr. Pradeep Chopra
Now, it is kind of sad because. 

41:33
Dr. Pradeep Chopra
We literally have millions of neurosurgeons in the country and they don't follow that. The only neurosurgeon that I know who follows that is Dr. Bolognese in New York. And as a third person living in Rhode Island and seeing these patients the results of surgeries from different surgeons, I have never seen a complication I shouldn't say complication, but I've never seen a patient come back and say after five years of the first surgery that they have to now extend the fusion. I have not seen that. 

42:04
Dr. Linda Bluestein
That's actually amazing because that's a very common problem, having to extend the fusion. So if you have not seen that, and I haven't either, I've had a lot of patients that have had surgery with him. And so I think that's a lot of who might not realize that's a very important piece of data. Because whenever you fuse a part of the spine that transmits forces to the other parts of the spine. Right. So that kind of series of events is not that rare. So that's very good information. 

42:30
Jennifer Milner
Well, and what a great hack that, I mean, it's something we talk about, but it's so wonderful to hear a. 

42:35
Dr. Pradeep Chopra
Doctor hack about running away. 

42:36
Dr. Pradeep Chopra
Yes. 

42:37
Jennifer Milner
It's really empowering to hear another doctor say, hey, if this doesn't seem right, if this is not lining up with what you think it should be happening, just leave it's okay not to do that. Because a lot of times, those of us who are not medical professionals feel like, well, they said that this would work, and I went to them, so I guess I should, even though it doesn't sound like it will. And the date I've read doesn't it's empowering to know you don't have to continue that if it's not right or if you get more research and it says no, it's empowering to hear you can walk away. 

43:02
Dr. Pradeep Chopra
You know, the term, your neck is on the line. This is exactly where it came from. 

43:07
Jennifer Milner
That's true. 

43:08
Dr. Pradeep Chopra
Your neck is on the line. I always tell people that when you buy a car, you talk to 20 different people and say, hey, what's a good car. You do research, you do all sorts of things, but when it comes to having surgery on your neck, you go to the first guy and he makes all these bizarre promises, oh, you're going to be in the circus in the next week and everything's going to be fine and great. But the fact is, I have no motivation over here. Dr Bolmani refuses to pay me. But I just look at this and say, firstly, you look at the science, does it make sense or not? Right, it makes total sense. Then you look at the results of the surgeon, you compare the results of other surgeons to this surgeon and then you say, well, yes, there is a big difference. 

43:57
Dr. Pradeep Chopra
And anybody can understand that. If you feel something that's already in a very displaced position, if the spine is in a very displaced position and you haven't corrected that, you haven't aligned that little broken stick, then fusing it or putting superglue on that broken stick is always going to be a broken stick. I should say a crooked stick. And once you have a crooked if you fuse that neck in a crooked position, then in a few years you're going to have start having more problems. Now, I do get some pushback from patients and they'll say, oh, I hate the idea of having traction put in my head. But number one, this is done under anesthesia. Like when they put the pins for the traction, they give you a light sedation, mac anesthesia, so you're not aware. 

44:45
Dr. Pradeep Chopra
Of that, you don't feel it. 

44:47
Dr. Pradeep Chopra
And considering that it's a small, tiny little hole which will eventually close up, it's worth that experience. I mean, even if it's an unpleasant experience, it's a mildly unpleasant experience. And I have asked patients this, like, you had a cervical traction, how was it? And they said it was fine. They didn't worry about that pin being put in their head and all that. It wasn't done. It's really important to get the data from this cervical traction. If your response to a cervical traction is only 20%, getting a surgery is. 

45:17
Dr. Pradeep Chopra
Not going to help, because you don't. 

45:19
Dr. Pradeep Chopra
Have as bad a cervical traction that a surgery would help. 

45:23
Dr. Pradeep Chopra
Yeah, that's a good hack. 

45:24
Dr. Pradeep Chopra
Yes, that's a good when not to do surgery, in my view. It's always been dr Bluestein, you worked in operating rooms. I worked in operating rooms. And sometimes you just look at the. 

45:36
Dr. Pradeep Chopra
Surgeon and say, where did he get his training from? 

45:40
Dr. Linda Bluestein
Unfortunately, yes. 

45:41
Dr. Pradeep Chopra
Yes. And then you see these brilliant surgeons doing brilliant. 

45:45
Dr. Pradeep Chopra
Right, definitely. 

45:47
Dr. Pradeep Chopra
So in my theory is that a good surgeon should know when not to do surgery. 

45:55
Dr. Pradeep Chopra
Yes. 

45:56
Dr. Pradeep Chopra
That's the key thing. And they know that this is not going to help. So if you flunk the invasive cranial traction, then surgery is not going to help. 

46:07
Dr. Pradeep Chopra
I'm actually so glad that you just. 

46:08
Dr. Linda Bluestein
Brought that up because I don't know if you've had this, but I've had patients that have I agree with you about getting several opinions. You're right about the buying a car. Your analogies, by the way, are fabulous. Those are also hacks, by the way. Your analogies are also the mini hacks. They're mini hacks. Yes. Okay. But what I find is that I have had some patients where they'll keep looking for an opinion until they get someone who will operate on them. So if you've seen a surgeon and they're saying surgery is not indicated, surgeons like to do surgery, right? They train to do surgery. So if you've seen a surgeon and they're saying surgery is not indicated, it's not like there's necessarily a problem getting a second opinion. That might be a very good idea. But if you've seen two people or three people who are saying surgery is not indicated, I would strongly suggest people not keep going until they find someone because you will eventually find that person. 

46:54
Jennifer Milner
Right, right. 

46:54
Dr. Linda Bluestein
So patient selection, if you're a surgeon, patient selection is everything. And who they're turning away for surgery is everything. Good surgeons are very careful about that patient selection and they know who will benefit from surgery and who won't. 

47:08
Dr. Pradeep Chopra
Right. And that's what I tell patients. I mean, even my non eds patients, I tell them that just because a surgeon I'll send you to a surgeon that I think I would go to. And if he says surgery is not an option, then stop. Not an option. If he says it's an option, then you can go and get another opinion from another surgeon as to what kind of surgery that needs to be done, that's a different story. 

47:33
Dr. Pradeep Chopra
Right. 

47:33
Dr. Pradeep Chopra
But don't go doctor shopping. 

47:35
Dr. Pradeep Chopra
Yeah. 

47:36
Dr. Pradeep Chopra
All right, so we will put that down under the section of hacks. All right, Dr. Bluestein. Here comes your Eagle syndrome. 

47:44
Dr. Linda Bluestein
All right. 

47:45
Dr. Pradeep Chopra
This is one of those conditions, after 30 years in looking at Ads patients. 

47:51
Dr. Pradeep Chopra
You think you know everything, and then. 

47:53
Dr. Pradeep Chopra
All of a sudden a condition, they start showing up with another condition. 

47:56
Dr. Pradeep Chopra
And I'm like, Where was this? 

47:59
Dr. Pradeep Chopra
I remember mast cell activation syndrome. You know how old mast cell activation syndrome is? 

48:04
Dr. Pradeep Chopra
About twelve years. Wow. 

48:06
Dr. Pradeep Chopra
Twelve years ago was when the first paper was published and I read the paper and I said, yeah, I'm not going to see one of these patients. And now it's like now you have massive everywhere. And not only do you have it in Eds patients, now you have it in long COVID patients. 

48:24
Dr. Pradeep Chopra
Right. 

48:25
Dr. Pradeep Chopra
And it's just so bizarre. So Eagle syndrome is one of those. For the longest time, this is more of facial pain. So the pain is in the face. And I guess the face is part. 

48:38
Dr. Pradeep Chopra
Of the head, right? 

48:40
Dr. Pradeep Chopra
These patients will present with a sharp shooting pain in the jaw one side of the jaw, or it could be both. And they also have it in the back of their throat, and it feels like there's something stuck in the back of their throat. They have pain in the base of their tongue. They'll have it in the ears or ear and into the neck and then going into the face. They have difficulty swallowing, and it feels like there's a foreign object stuck in the throat. The pain gets worse with chewing, swallowing, and it also gets really worse with turning their neck. It also gets worse with touching the. 

49:13
Dr. Pradeep Chopra
Back of the throat, which I do. 

49:16
Dr. Pradeep Chopra
I always put my left hand that's the other hack. This is a doctor hack. Never stick a finger into a patient's mouth with your dominant hand. Don't put your right hand in their. 

49:27
Dr. Linda Bluestein
Mouth or into an elevator door or. 

49:29
Dr. Pradeep Chopra
Into an elevator door. Always check it with your left hand. So you put your finger into the back of their throat and you sort of press to the side and they're. 

49:39
Dr. Pradeep Chopra
Going to swear at you, which is. 

49:40
Dr. Pradeep Chopra
Fine, which is good, because that confirms your diagnosis. It's really bad. Okay, so what is Eagle syndrome? It's got nothing to do with the bird. This is Dr. Eagle who discovered it. There's a little bone in the corner of the jaw and it has a purpose. And the purpose is that some ligaments and muscles attach to it. But for some reason, it starts to elongate that bone. And when it elongates, it presses on a nerve called the glossopharyngeal nerve. Glossal means tongue. Pharyngeal means throat. So pain is in the tongue and throat. So very briefly, when you have pain one side or both sides of the face, and it kind of goes into the throat and something feels like it's stuck in the throat, think of Eagle syndrome. The way it's diagnosed is what I just told you was the doctor puts his finger into the throat and presses on the styloid process, and they immediately feel the pain. 

50:40
Dr. Pradeep Chopra
The scan that you need is a 3D CT scan. So it's actually a CT scan, and then there's a reformatted into a three dimensional view. And that's the gold standard. And the good news is surgery has a cure rate of 80%. And I've struggled with this. Why would people with Eds have Eagle syndrome? And I have no solution to that. 

51:00
Dr. Pradeep Chopra
I don't know why. 

51:02
Dr. Pradeep Chopra
Now I've not seen it, because I do see non Eds patients and I've not seen it in them. It is often misdiagnosed as trigeminal neuralgia. Oh, you have pain in the face. It must be trigeminal neuralgia. And so this is something, if it relates to the throat, you should start thinking of Eagle syndrome right away. Facial pain with throat problems is easy. Eagle syndrome and the curate, like I said, surgery is really not a really major surgery, but the response is fantastic. They shorten the bone that sticks out. It's called the steroid process. 

51:32
Dr. Pradeep Chopra
They shorten that. 

51:33
Dr. Linda Bluestein
You said you've never seen it in a non Eds patient and you don't know why necessarily this would occur more often in Eds patients. How often have you seen it in Eds patients? I know number to pull out of. 

51:45
Dr. Pradeep Chopra
Your hat, necessarily, but I obviously don't have the figures. But I would say one in ten Eds patients have it. It's fairly common. 

51:52
Dr. Linda Bluestein
Really? 

51:53
Dr. Pradeep Chopra
Wow. That's the puzzling part. Wow, that's a lot. 

51:56
Dr. Pradeep Chopra
That's a lot. And that's the puzzling part. Up till a few years ago, I didn't even know Eagle syndrome existed, right. And I was reading about facial pains and I was trying to figure them out, and then I came across this Eagle syndrome. I said, oh, it's so easy. You stick a finger in somebody's throat. 

52:13
Dr. Pradeep Chopra
And if it hurts and if you. 

52:14
Dr. Pradeep Chopra
Still have a finger, they haven't written it off, then you're good. 

52:19
Dr. Pradeep Chopra
With your. 

52:21
Dr. Pradeep Chopra
Left hand into their mouth. Not the right, preferably the pinky finger, because that's sacrificable. You don't need your index finger. Right, right. The most useless finger is the pinky finger. 

52:32
Dr. Pradeep Chopra
And try and stick that in. 

52:35
Jennifer Milner
Is there a physical like, do you see a shifting of the jaw or sort of a misalignment of it that goes with it? Or is it purely just the lengthening of that bone in the back? Like it's just visual assessment. 

52:47
Dr. Pradeep Chopra
It's visual. You cannot see it from the outside. There's no change of the jaw. It's a really tiny bone. It's barely a few centimeters long, like maybe about a half I think it's about half inch. And it's behind the jawbone. Sometimes I'll try and even push from the outside and they'll feel the pain, but the best test is to push it from inside. The point I'm trying to make here is that if you have facial pain, which you may have been told that it is trigeminal neuralgia, but if it has throat symptoms, something stuck in your throat or your tongue hurts, the base of the tongue hurts. 

53:26
Dr. Pradeep Chopra
Think of Eagle syndrome. 

53:28
Dr. Pradeep Chopra
So with this, we can move on. 

53:31
Dr. Pradeep Chopra
To the thoracic spine. 

53:34
Dr. Pradeep Chopra
So moving down so we've talked a lot about the neck moving down to the thorax. The thoracic portion of the spine is relatively a stable spine because it's part of the rib cage. And so it doesn't really show up being a problem in the non Eds population. But of course, the EDSS don't make life easy for us and they have to have something which does not which you've never even paid attention to. But anyway, jokes apart, they do have thoracic pain. They don't often complain about it, but if you push over there on the thoracic spine, they'll say, oh yeah, that really hurts. I mean, they may complain of. Pain in the upper back, what is called as a coat hanger distribution. And they might even also complain of pain between the shoulder blades. 

54:24
Dr. Pradeep Chopra
They may complain of pain that there. 

54:26
Dr. Pradeep Chopra
And again, the spine is made up of little bones, like a three dimensional jigsaw puzzle put together, stacked together, and each one connects to the one above and the one below with ligaments. And the problem here is that the ligaments are elastic, so it shifts. And when it shifts, it hurts. For a physician, the way to diagnose that is you go to the thoracic spine and you go to the midline, and then you go to a little to the left or the right, and you push with your thumb and it will be tender, they'll say, yeah, that hurts. Now the issue here is rib subluxations. So each rib connects to the thoracic spine and it connects actually with three joints, three teeny tiny little joints. And the reason there is a joint, there are joints there is because each rib has to constantly move up and down. 

55:16
Dr. Pradeep Chopra
As you breathe in, it moves up, and then as you breathe out, it moves down. And so what happens is your ribs are constantly moving and they are connected. They are tethered down to the thoracic spine with three little joints. Two things happen here. 

55:31
Dr. Pradeep Chopra
One is that people with, so people with Eds tend to slouch, and I'll. 

55:38
Dr. Pradeep Chopra
Get into that a little later, but they tend to slouch. And it's not a habit thing, it's just a condition. And when they slouch, then that rib, the joint, the junction between the rib and the spine, the rib pops out of its joint. And that's called a rib subluxation. And it's an excruciatingly painful condition. It feels like you're having a heart attack. So the rib sublux is out. 

56:05
Dr. Pradeep Chopra
And how do you treat that? So I'm going to talk about how. 

56:10
Dr. Pradeep Chopra
To treat it when it subluxes out. And then I'm going to talk about how to prevent it from subluxing when it subluxes out. You can lie on a roller, one of those exercise rollers? 

56:23
Jennifer Milner
Yeah, like the foam rollers? 

56:24
Dr. Pradeep Chopra
Yeah, not the foam one, but. 

56:26
Dr. Pradeep Chopra
Some of the hard ones. 

56:29
Dr. Pradeep Chopra
Yeah, they're rubberized, but they're hard. And you lie on it and you roll back and forth and that pops the rib back in place, rolling your. 

56:37
Dr. Linda Bluestein
Thoracic spine back and forth on it. 

56:38
Dr. Pradeep Chopra
Yeah. 

56:39
Dr. Pradeep Chopra
Okay, so you put the roller on the floor and you lie facing the ceiling and then you move back and forth. And when it moves over that sublux rib, it pops the rib back in place. 

56:51
Dr. Pradeep Chopra
That's a double hack. Oh, wow, look at that. 

56:55
Dr. Pradeep Chopra
We're on a roll with our hacks, literally roll to put the hit rib in. All right, so we're on the floor and we're rolling back and forth and pushing this rib back in place. You've got that done now. But the thing is that you can't be walking around like if you're walking in a mall and suddenly your rib pops, you don't want to pull out the roller in the middle of the mall and start pushing it back. So to prevent it, there are a few things. One is that you want to stabilize a thoracic spine. You don't want to slouch. And like I told you, it's not a habit. The problem is that the thoracic portion, the chest portion of our spine is held together by ligaments, and these ligaments are lax. And because most of the stuff, like the lungs and the heart, and in women, the breasts are in front, you tend to lean forward. 

57:46
Dr. Pradeep Chopra
That's the problem. 

57:48
Dr. Pradeep Chopra
And then you just automatically start to slouch forward and to sit back straight. 

57:53
Dr. Pradeep Chopra
Up is an effort. 

57:55
Dr. Pradeep Chopra
And when it's an effort, you get tired eventually and you'll just let go. So some of the techniques to keeping it stabilized is, to one, you can try a compression garment. There are a few that you can get. There's a company called DM orthotics it's a British UK based company, but they do sell in the United States and they make these pretty cool shirt like garments that can help keep the rib more like your posture. 

58:27
Dr. Pradeep Chopra
Correct. 

58:28
Dr. Pradeep Chopra
There's another company called Spinal Q. Spinal Q? 

58:34
Dr. Pradeep Chopra
Sorry. 

58:34
Dr. Pradeep Chopra
The company is alignmed A-L-I-G-N med and they produce this more like a vest. It's called spinal q. But these are big and bulky and you are never going to convince an 18 year old to wear that. And that's been my thing. But there's another one I wanted to talk about was the Body braid. So the Body Braid looks like a series of tapes connected together. They're not sticky tapes, they're tapes. And they're designed to cover the joints, mostly the joints and the spine. 

59:11
Dr. Pradeep Chopra
And what that does is it keeps. 

59:14
Dr. Pradeep Chopra
Your spine in alignment. It actually keeps everything in alignment, starting from the shoulders, the spine, the pelvis, the knees, everything keeps it in alignment. It's a phenomenal piece of a piece of was just to give you a little background. It was invented by a physician in Toronto, Canada, and I think he spent many years researching it and many different designs and finally came up with this design. And on a personal basis, I tried it and I don't have Eds. 

59:45
Dr. Pradeep Chopra
And I loved it. I felt so much better. 

59:48
Dr. Pradeep Chopra
I wasn't holding myself up and my posture was better. Patients love it. If you go on their website, you can see it. It's not even that expensive. And there are videos on how to use it. But you can also set up an appointment with the physician and he can demonstrate it to you. For you. There's a tiny learning curve because there are so many tapes on it. There's a teeny tiny learning I mean, for me, with my one brain cell, the learning curve was three ways, three times. And you guys with eds have like a million brain cells. EDSS are extremely smart. 

01:00:29
Dr. Pradeep Chopra
This is one of the strangest things I've seen. 

01:00:33
Dr. Pradeep Chopra
They're extremely smart. With all their fatigue and brain fog. 

01:00:35
Dr. Pradeep Chopra
They ace their exams. Cool. 

01:00:38
Dr. Pradeep Chopra
So even though it looks like a lot of tapes around and it looks like a bit of a mess of tapes, but it's really just a learning curve. It takes just wearing it once or twice and you know the trick behind it's discreet, you can wear it under your clothes and it's very effective. 

01:00:57
Dr. Linda Bluestein
It seems like another we're recording this during the summer and people will listen all different times of the year. But another advantage to me of the body braid is that it's a lot cooler than some of these other things that cover a lot more of your skin. And so we know people with Eds are often temperature intolerant or the heat increases their mast cell activation. So do you find that it's more comfortable for people because they're not adding another? 

01:01:18
Dr. Pradeep Chopra
Absolutely. So that's been my problem before I came across body braid was that recommending patients, especially young patients, to wear a compressive garment on their torso. I mean, frankly, even for me, it's uncomfortable to wear. No one likes to have a tight shirt unless you have six packs. 

01:01:39
Jennifer Milner
But the benefits of it, you realize you feel better when you wear it, right? 

01:01:45
Dr. Pradeep Chopra
That's the thing. You feel great when you wear one of these compressive shirts garments. And then on the flip side, so a lot of it depends on the patient's wishes. So that's why I mentioned all of. 

01:01:57
Dr. Pradeep Chopra
Them because they all work. 

01:01:59
Dr. Pradeep Chopra
And of all these, the lightest one is the body braid and it is also very discreet. You put it under, you wear it under your shirt, takes 2 seconds to wear it and it's not kind of choking your lungs. So this is on the thoracic part of the spine with the rib subluxations. 

01:02:20
Dr. Linda Bluestein
So I was really curious to ask you, Dr. Chopra, if you think that some of these differences that we see in people with Eds versus people who don't have Eds, could it because we have greater levels of interoception at the same time that we have less good proprioception? Which is kind of an interesting phenomena in and of itself, but people refer to us as like canaries in the coal mine and that kind of thing. So do you think some of these phenomena that are harder to explain on the basis of differences in connective tissue, do you think that it could be on the basis of differences in sensation and that kind of thing? 

01:02:49
Dr. Pradeep Chopra
So I know you had previously referred this to in terms of Eagle syndrome being more common in Eds, and were puzzled about why it would be common in Eds and we didn't know that in that context, I don't think it is because in Eagle syndrome there is a definitive increase in the length of this bone. I mean, there's no gray area in this. You can literally see this little bone. It looks like a dagger, and it's protruding out through the jaw. And so the question that you were trying to ask was, are people with Eds more aware of their body or sensations in their body? I would think it's the opposite. One of the toughest part of my seeing an Eds patient is to make them talk. I will ask a teenage girl, does your right wrist hurt? And she'll say, no, it doesn't hurt. 

01:03:38
Dr. Pradeep Chopra
And then when you start diving a little deeper into it, and she'll say, oh, yeah, it hurts when I write. And I can't write for more than two minutes. They've grown up to accepting pain. Is that every human being feels that lightheadedness? 

01:03:52
Dr. Pradeep Chopra
Is every human being feeling that? 

01:03:54
Dr. Pradeep Chopra
So in some parts, yes, they do have more awareness of their issues because it's affecting their functioning. But in some parts, they grow up thinking like, okay, everybody gets lightheaded when they stand. So when they get lightheaded, they don't care. 

01:04:11
Jennifer Milner
I think that's an interesting point that we have seen played out through so many people that we are in contact with Eds is that everything hurts. Or they're so aware of everything that it's hard for them to tell what is quote unquote, normal and what is something that they should bring up and talk about. Should I tell them that my wrist clicks? Oh, everybody's wrist probably clicks. Should I tell them that my fingers hurt when I pull the comforter up over my chest because it's subluxate? It probably happens to everybody study. So I think what you're saying, Dr. Bluestein, is perhaps something like Eagle syndrome, not necessarily Eagle syndrome, but perhaps something like that is not necessarily more common in people with Eds, but people with Eds just are more aware of such pain and issues and so they point it out more. And that's an interesting question to ask. 

01:04:52
Jennifer Milner
And I think it's that fine line of my experience is people with Eds do have much more awareness in their body. And at the same time, there's so much of that at least low level amount of everyday pain. It's hard for them to turn down the static and figure out which ones they're supposed to be paying attention to. 

01:05:09
Dr. Pradeep Chopra
Does that make sense? Yes. 

01:05:11
Dr. Pradeep Chopra
So I like the word static. It is a lot of static. There's a lot of noise that they live with. And it's only when it starts to get worse and we'll talk about this when we talk about mass cell activation syndrome, how this noise increases to a point where it becomes unbearable. And I think all Eds patients have pain, but at times this pain will go up to a point where they become non functional, and that's when they start seeking treatments. But they have pain all the time. It's just that they've grown to accepting it as, hey, this is normal. 

01:05:48
Dr. Pradeep Chopra
Yeah, no, I think that's true. 

01:05:49
Dr. Linda Bluestein
And I think your point about sometimes I feel that way too, sometimes, having to try to extract the information. And I think what happens is if we report our symptoms to a number of people and they're not seemingly interested in the information, then we stop reporting our symptoms. Or let's say we do report them and they do a couple of tests and everything comes back unremarkable, then we don't want to be in that position of being, oh, you're fine, just kind of go away. So I think that's a good point that you raised. 

01:06:16
Jennifer Milner
Can we make sure that we cover the lower back as we're sort of looking at the spine from head all the way to tail? So what have you got for us in the lower back? 

01:06:24
Dr. Pradeep Chopra
Yes, ma'am. 

01:06:27
Dr. Pradeep Chopra
So the lower back, like the rest of the spine, does have its issues with instability. But oddly enough, I don't see a lot of instability like damaging instability in the lumbar spine. I haven't had patients where I said, okay, your lumbar spine is so unstable that you need to get surgery or something. I haven't seen that, and that's a little surprising. But the relevance of that of lower back pain here is in terms of tethered cord syndrome. So tethered cord means your spinal cord is tethered down. The normal spinal cord ends at the L one level, which in a lady would be at about the bra strap level. 

01:07:15
Dr. Pradeep Chopra
So what I'm trying to say is that it's pretty high up. 

01:07:17
Dr. Pradeep Chopra
It's not lower down. And that's where it ends. And it ends in a conical form, so it's called a CONUS. And then there's a little string that hangs from it which has no purpose in life. That string is called phylum. It has got no nerves in it, nothing in it. It just hangs there. It's a remnant of it's from embryology. 

01:07:39
Dr. Pradeep Chopra
It's a remnant of something that we don't have anymore. 

01:07:43
Dr. Pradeep Chopra
But the thing is that it hangs loose. And the reason it hangs loose is. 

01:07:47
Dr. Pradeep Chopra
Because the spinal cord and the brain. 

01:07:50
Dr. Pradeep Chopra
Shift as we move around. They all shift as we grow, as children grow taller, the bony part grows faster than the spinal cord itself, and so it all shifts together. So the spinal cord and the brain are under no tension, and that's why the phylum hangs loose in tethered cord. What happens is these patients, the phylum, that little useless piece of thread hanging at the bottom at the end of the spinal cord is tethered there. It's stuck over there. And when that gets stuck, then it puts attention on the spinal cord. And remember I told you about the corners, the conical end of the spinal cord, which ends at l 1, may get pulled down to L two or even L three. So essentially, there's a tension on the spinal cord from a tethered cord syndrome. And at different ages it presents differently. So I'm not going to go into the babies, because it's pretty obvious in babies, the diagnosis. 

01:08:50
Dr. Pradeep Chopra
But we'll talk about more in the teenage to the adult group, how they. 

01:08:54
Dr. Pradeep Chopra
Present one of the things they present. 

01:08:58
Dr. Pradeep Chopra
With is lower back pain. Now, I don't want you to think that, oh, I have lower back pain, therefore I have tethered cord. You can have lower back pain for 16 million other reasons. 

01:09:09
Jennifer Milner
Absolutely. 

01:09:10
Dr. Pradeep Chopra
Then they also have what is called a neurogenic bladder. This is essentially where the bladder does not talk to the brain. And I'll explain that a little more in detail. The key one that I look at is their legs get heavier or weaker as they walk. 

01:09:25
Dr. Pradeep Chopra
That is a key point for me. 

01:09:27
Dr. Pradeep Chopra
And they'll always tell us, tell you that when I walk a short distance, it feels like my leg is getting weaker and painful. They have diffused pain in their legs. And the reason why I'm saying it's diffused is because it's not along a specific nerve distribution. The whole leg may hurt. And here's the thing. It may either be the left leg or the right leg. Today it could be the right leg. 

01:09:48
Dr. Pradeep Chopra
Tomorrow it could be the left leg. 

01:09:50
Dr. Pradeep Chopra
These are some of the key things that we look at. It's not in a very specific area of the leg. It's unrelated to the joints. And the legs get heavier as they walk. They have bladder issues known as neurogenic bladder. And they also have this back pain that cannot be explained by anything else. So what is a neurogenic bladder? 

01:10:14
Dr. Pradeep Chopra
They go often, so they go a lot to the bathroom and that can be anywhere. And that's a difficult question for a lot of people to answer because EDSS. 

01:10:24
Dr. Pradeep Chopra
Don'T know what is normal. They think going to the bathroom 20 times a day is normal, so there's no number. But going a lot is considered to be increased frequency. Sometimes they can have urinary hesitancy and they'll say, oh, my daughter is like a camel and she doesn't even pee. 

01:10:40
Dr. Pradeep Chopra
For the whole day. 

01:10:42
Dr. Pradeep Chopra
They have urgency and it's like, okay, I can't wait. We can't wait for the next McDonald's. I got to do it right now. Then they have a sense of incomplete. 

01:10:51
Dr. Pradeep Chopra
Emptying of the bladder. 

01:10:52
Dr. Pradeep Chopra
So they just peed. But it still looks like there's some left. It feels like, yeah, not satisfied there's something left. 

01:11:01
Dr. Pradeep Chopra
And they may either go out and. 

01:11:02
Dr. Pradeep Chopra
Come back again or something like that. In some cases they can have incontinence. So I just want to clarify incontinence in women, there is a one incontinence which comes with stress that's like when you cough, sneeze, laugh, there's a little bit of a urine that comes out. That's not what I'm talking about. I'm talking about a lot of urine. 

01:11:20
Dr. Pradeep Chopra
Coming out with no control. 

01:11:22
Dr. Pradeep Chopra
The first ones are the most important. The incontinence is not as common here that I see. This is tethered cord. These are the symptoms of tethered cord. The one point I wanted to make was that the incidence of patients who have carry malformation, 70% of those will. 

01:11:38
Dr. Pradeep Chopra
Have tethered cord syndrome. Wow. 

01:11:40
Dr. Pradeep Chopra
So the actual number is 66%. So 66% of people with carry malformation will have tethered cord. And the significance of that is that when you see a patient with tethered cord or when you get diagnosed with tethered sorry. When you get diagnosed with carry malformation, start looking for tethered cord symptoms. So there's a high incidence of tethered cord in patients with carry malformation. The problem with tethered cord syndrome is that MRI is not a useful tool. 

01:12:06
Dr. Pradeep Chopra
That's the problem. 

01:12:08
Dr. Pradeep Chopra
Hence the term occult tethered cord. I think all tethered cords are occult because it's not often that you see the phylum or the tethering. It's not often that you see that the cornus has come down a little bit. You cannot depend on an MRI. And this is a big deal because the world of neurosurgeons are very strongly divided on this. There is a major group that has said that if it's not an MRI, it doesn't exist. And then you have this smaller group that understand this situation, and they'll say, you really don't have to have it on MRI. You can base it on clinical diagnosis. So these surgeons will look at the clinical history, do an exam, and that's. 

01:12:51
Dr. Pradeep Chopra
What they base it on. 

01:12:52
Dr. Pradeep Chopra
They will do what is called a Eurodynamic study, a UDS Eurodynamic study. The urologist will do it. 

01:12:59
Dr. Pradeep Chopra
They look at how much urine do. 

01:13:01
Dr. Pradeep Chopra
You retain after you finished peeing? And they look at how strong is a sphincter? And all these studies that they do on that, and that kind of is another piece of information. So before a surgeon goes into the operating room with a patient for tethered cord, they have all this data with. 

01:13:15
Dr. Pradeep Chopra
Them and they don't just solely depend on an MRI. That's the thing. 

01:13:20
Dr. Pradeep Chopra
And the problem that I run into is like, for example, some centers absolutely will not accept it. 

01:13:26
Dr. Pradeep Chopra
Like in Boston, they will not accept it. 

01:13:29
Dr. Pradeep Chopra
They do not believe in the fact that if it's tethered cord, you can have tethered cord without an MRI. 

01:13:35
Dr. Pradeep Chopra
They will not. That's the problem that I run into. 

01:13:40
Dr. Pradeep Chopra
So just to recap on tethered cord syndrome, one is that the spylum is kind of stuck down at the bottom. Oftentimes when I see it in teenagers, and you go back and you talk to the mom and there will be a growth spurt. 

01:13:57
Dr. Pradeep Chopra
Like six months before that, they had. 

01:13:59
Dr. Pradeep Chopra
A sudden growth spurt and now they have all these pain in their leg. And all that often attributed to growing pains. But it's not growing pain is pain below the knee, in the front. 

01:14:12
Dr. Pradeep Chopra
That's it. 

01:14:12
Dr. Pradeep Chopra
It's not a diffused pain in the leg. 

01:14:14
Dr. Pradeep Chopra
It's not weakness in the leg usually. 

01:14:17
Dr. Pradeep Chopra
Shows up at night. So patients with tethered cord present with back pain bladder symptoms. Legs get weaker as they walk and they have a diffused pain in their legs. Doesn't match up with any nerve distribution. Bladder issues are increased frequency, sense of incomplete, emptying of their bladder. These are the common symptoms often associated with carry malformation. MRI is not a very dependable tool for this. The diagnosis mostly depends on a clinical history and examination. And I have to say know Dr. Klinger, who does a lot of these surgeries, is like a mile from my office. 

01:14:56
Dr. Pradeep Chopra
And I've often sent patients to her. 

01:14:58
Dr. Pradeep Chopra
And I've always asked her for feedback like, hey, I diagnosed this patient with tethered cord. What did you think? Or how was your surgical finding? 

01:15:07
Dr. Pradeep Chopra
And I don't think I've been wrong. 

01:15:12
Dr. Pradeep Chopra
But that doesn't mean that I didn't miss somebody. 

01:15:15
Dr. Pradeep Chopra
Right? 

01:15:20
Dr. Pradeep Chopra
When it comes to diagnosing tethered cord. 

01:15:22
Dr. Pradeep Chopra
I really grill the patient a lot. 

01:15:24
Dr. Pradeep Chopra
Like, are you sure your legs feel heavier? Are you sure that you have pain away? Or are you sure about your bladder symptoms? Although Dr. Kling has told me that the bladder symptoms are not that crucial nowadays, they haven't seen that to be that important. So when you do the surgery, the. 

01:15:39
Dr. Pradeep Chopra
Surgery is actually not how do I. 

01:15:42
Dr. Pradeep Chopra
Put it, a scary surgery. They don't remove any bone or something like that. They go in there, they find out that phylum, and then they snip it. 

01:15:49
Dr. Pradeep Chopra
And remove a section of that. The question is, what benefit will you see? 

01:15:55
Dr. Pradeep Chopra
And so this is just picking into my experience. The first benefit these patients see is that their bladder symptoms improve. 

01:16:01
Dr. Pradeep Chopra
And this literally happens as soon as. 

01:16:04
Dr. Pradeep Chopra
They wake up from surgery. It's that fast. Their bladder symptoms improve within the first 24 hours. 

01:16:09
Jennifer Milner
Wow. 

01:16:09
Dr. Pradeep Chopra
The leg symptoms take a little longer. So I found that it takes about a year to come to a point. 

01:16:16
Dr. Pradeep Chopra
Where everything has stabilized out. 

01:16:19
Dr. Pradeep Chopra
So expectations, this is what I'm talking about is expectations from this thing. We've had some surprises, also good surprises. In some cases, we've seen GI symptoms improve. In some cases we have seen neck pain improve. And I truly don't have a great explanation for that. I mean, I don't even know how the GI symptoms improve. But we know that the spinal cord carries all the nerves. We know all of these things. But the nerves to the GI system. 

01:16:46
Dr. Pradeep Chopra
Don'T even go through the spinal cord. They have their own pathway, the sympathetic. 

01:16:51
Dr. Pradeep Chopra
Nerves and the parasympathetic nerves. So we've seen some surprisingly good results, happy results. But the usual expectation should be to see bladder improvement in bladder symptoms and leg symptoms. 

01:17:03
Dr. Pradeep Chopra
And that, I think, is our lower back. 

01:17:06
Jennifer Milner
Would you be questions? 

01:17:09
Dr. Pradeep Chopra
Just wanted touch on si joint pain. 

01:17:12
Dr. Linda Bluestein
That was on my list. 

01:17:13
Dr. Pradeep Chopra
Yes. 

01:17:13
Dr. Pradeep Chopra
We'll talk about sacralic joint pain when we talk about leg issues. 

01:17:17
Dr. Pradeep Chopra
Okay. 

01:17:17
Dr. Pradeep Chopra
Because it's closely related to that. 

01:17:19
Dr. Pradeep Chopra
Okay. 

01:17:20
Dr. Linda Bluestein
That's fine. What about tarlov cyst? 

01:17:22
Dr. Pradeep Chopra
Tarlov cysts are tiny cysts that I mean, they can be tiny, they can be big, but these are cysts. So let's go through the anatomy very quick on that. We have the bone, the bony spine, okay? And it has got holes everywhere. It has holes through which all kinds of nerves come out. And then you have these holes on the sides through which nerves come out. 

01:17:41
Dr. Pradeep Chopra
And sometimes a little cyst, a cyst. 

01:17:47
Dr. Pradeep Chopra
Is a teeny tiny balloon. You can look at that. It's a really tiny balloon that will develop at this junction where the bone, where the hole through which the nerve is coming out. At that junction, assist may develop these cyst. Cysts are like balloons, and some of them, they're like balloons filled with water. 

01:18:08
Dr. Pradeep Chopra
And so balloons filled with water are squishy. 

01:18:10
Dr. Pradeep Chopra
And sometimes they're squishy enough that they don't cause any symptoms. You do an MRI for some other reason and you'll see a talosis, you talk to the patient, hey, do you have pain in this area? And they'll say, no, you leave it alone. Sometimes they become bigger or they become tighter, or they are at a really bad place and they are actually compressing a nerve. That Tarloff cyst needs to be treated, and there are two ways to treat it. There are some physicians who will go in there and stick a needle into the Tarloff cyst and literally burst it open. And in some cases, surgeons will go in there and will actually remove the cyst. But the point over here is that if you get an MRI report that says, hey, you've got a talloff cyst over here, or you've got three towel of cysts, don't panic. 

01:18:51
Dr. Pradeep Chopra
It may be completely benign and has nothing to do with your pain, let the surgeon decide whether this is significant enough to be the reason for your pain. And talov cysts is common in eds. And again, it goes back to having loose connective tissue, and so it probably happens from there. You do see talosis in non eds patients, but not as often but you do see it quite often in eds patients. 

01:19:15
Dr. Linda Bluestein
Yeah, that's what led to my eds diagnosis. I was having severe sciatica and had multiple MRIs. And they kept saying, no, that's not the problem. And finally somebody said, maybe it is the tarlov cyst. And so then I ended up getting other opinions and was reading and realized, oh, they're saying this is more common in connective tissue disorders. So then I started reading more about connective tissue disorders, and that's when the light bulbs started to go on. 

01:19:39
Dr. Pradeep Chopra
That's the problem. Dr. Blue scene you should not have read that book. You would not have had eds. So this is another hack. Don't read books if you don't know it. 

01:19:54
Jennifer Milner
Then you can't have it, right? 

01:19:55
Dr. Pradeep Chopra
Exactly. You could be living your life happily. Oh yeah, my knee gives out. No problem. 

01:20:00
Jennifer Milner
No big deal. 

01:20:01
Dr. Pradeep Chopra
But obviously we are kidding here. 

01:20:04
Dr. Pradeep Chopra
But it is crucial, I mean very crucial that if you get that diagnosis of Eds is to educate yourself and please don't think the worst of it. Stick to if you're diagnosed with hypermobile areas, stick to hypermobile areas. Just because you have some scoliosis. Do not walk into the Typhotic Eds section. There are only eleven known cases of Typhotic Eds. 

01:20:30
Dr. Pradeep Chopra
One of them is my patient. 

01:20:31
Dr. Pradeep Chopra
I asked her what her number was and she said, my number is nine. 

01:20:34
Dr. Pradeep Chopra
Wow. 

01:20:35
Dr. Pradeep Chopra
But she knows that this is what I'm trying to say. All eds patients have scoliosis. It's a dynamic scoliosis. Your ligaments are loose, your spine is going to be shifting around all the. 

01:20:44
Dr. Pradeep Chopra
Time, nothing to worry about. 

01:20:46
Dr. Pradeep Chopra
But if you're diagnosed with hypermobile Eds, just read about hypermobile Eds and there. 

01:20:52
Jennifer Milner
Again, it's that fine line of wanting enough information to be armed and to be knowledgeable without getting so much information that it can be overwhelming or stressful or send you down these rabbit holes that you don't really need to go down. And I think part of the time that's why people are afraid to go to a doctor or to look it up, because they don't want to know. I mean, we joke about it and we're saying, well, if Dr. Bluestein just hadn't looked it up, she'd still be happily working in the or as anesthesiologist. Which is not true. Right. That health issues just sent you in a different direction. And having that knowledge helped her make wise decisions and make those tons of issues before that. Yeah, right. So something I tell my dancers, like my dancers are notorious for not wanting to go to the doctor. 

01:21:29
Jennifer Milner
They don't want to know. And I say, going to the doctor isn't going to change what already exists in your body. It's just going to give you more information on what to do with it. You can always choose to ignore the doctor if he's like, oh, if you dance, you might tear a ligament. You can be like, okay, but at. 

01:21:40
Dr. Pradeep Chopra
Least then you know, and you know. 

01:21:41
Jennifer Milner
What the ODS are. So don't be afraid of getting quality information that you can trust. It's going to help you. Even if it sounds like, oh now I know I have this. Well, you always had this, but now you know about it and maybe there's things that you can do about it. 

01:21:55
Dr. Pradeep Chopra
So Jennifer, that's an extremely important point that you brought up and we'll discuss a little bit more about in our 365th. I'm so glad you have the on pediatric Eds. And one of the key things that when I see a pediatric patients, I tell their patients, their parents that absolutely make sure that they are not hyperextending their joints. They're not in any activity or sports or something like that's going to get them into hyperextending their joints. 

01:22:25
Dr. Pradeep Chopra
I have had national level athletes, ice. 

01:22:30
Dr. Pradeep Chopra
Skaters, rollerbladers and all sorts of things go from being at a national competing at a national level down to being in a wheelchair. So prevention is the key in Eds? 

01:22:43
Dr. Pradeep Chopra
Yeah, absolutely. 

01:22:45
Dr. Pradeep Chopra
Prevention, that's another hack. Stop doing foolish things. 

01:22:49
Dr. Linda Bluestein
Yeah, that is one of the absolute reasons why we do this, to educate that population. And that's why I go into dance studios a lot and I talk about don't do party tricks and don't be doing these things that may make your joints more unstable and cause you more pain down the road and that kind of thing. So, yeah, it's great that we really appreciate you coming back to Chat again. And obviously we're going to be having more conversations because this is a great way for people to learn. Because like you said, I feel like that's one of the challenges as there has been more awareness about Eds. There's all these charlatans and people, I think some clinics that are maybe not necessarily the best intended, they know that these trigger words to put on their website or whatever. So I think it can be really hard for people to sort out where to get the information from and where to go for treatment and what treatments are a good choice for them versus might not be helpful. 

01:23:42
Dr. Linda Bluestein
So I feel like it's the Wild West. It can be really especially for this population of people. 

01:23:47
Dr. Pradeep Chopra
Right. And that's why I said that talking. 

01:23:49
Dr. Pradeep Chopra
To peers is the important part because. 

01:23:52
Dr. Pradeep Chopra
Your peers, someone may have gone through, let's say let's talk about invasive cervical traction. 

01:24:00
Dr. Pradeep Chopra
Okay. 

01:24:00
Dr. Pradeep Chopra
There's a lot of fear in getting that done. Talk to someone who's already had it. 

01:24:04
Dr. Pradeep Chopra
Done and ask that person how was. 

01:24:06
Dr. Pradeep Chopra
Your experience with it? There's nothing like getting information from a person who has walked through those steps, going through that journey. 

01:24:17
Dr. Pradeep Chopra
Absolutely. 

01:24:17
Dr. Linda Bluestein
I think that wording was key, asking them what was their experience, because what I see sometimes is I don't go into the support groups anymore, but for a while, especially when I was kind of early on in my own journey while I was still working in the operating room, and then kind of transitioning out of that. And sometimes I would see people say, well, you should. And you have to keep in mind in the support groups, they don't know your circumstances. So ask what their experience was and then you can use that information, but just be careful about that person giving. Again, it's information versus advice. Right? This podcast is information, not specific advice, because there's a lot of people listening and they're all dealing with different symptoms, different situations. So we're giving information to help them make more informed choices. But we can't give any one person advice because we don't know what their circumstances are. 

01:25:03
Dr. Pradeep Chopra
Right. Don't forget how important the hacks are. Our hack section is the best. 

01:25:10
Dr. Pradeep Chopra
Yes. 

01:25:11
Dr. Linda Bluestein
Right. 

01:25:11
Jennifer Milner
Because they're low intervention, they are low risk, and we're certainly not advocating that anyone cut and paste someone else's experience and someone else's medical charts into their own medical charts. Right. It's not a cut and paste. It's just a read and learn type of thing and find their own experiences. Well, this is a lot to absorb and we have literally gone from head to tail, which I so appreciate. I love the way that we're looking at it, not from one specific system in the body, but from sort of a component, like a grouping of things. What's the best place for people to find you? I know people have already found you, but for those who are listening for the first time, what's the best place for people to find you? 

01:25:48
Dr. Pradeep Chopra
Oh, yeah, my website, which is in a pretty bad shape, painri.com. Pain, as in pain and R I rhode island or my office email address is S-N-A-P-A snapper. 102 at@gmail.com. 

01:26:06
Dr. Linda Bluestein
Did you say snapa? S-N-A. 

01:26:09
Dr. Pradeep Chopra
Yeah. Don't ask. It's an acronym. 

01:26:11
Dr. Pradeep Chopra
Snappa? 

01:26:13
Dr. Pradeep Chopra
Yeah. 

01:26:14
Dr. Pradeep Chopra
102 at@gmail.com. Okay. 

01:26:17
Jennifer Milner
Going to be inundated, I'm sure now. Are you a tweeter? 

01:26:21
Dr. Pradeep Chopra
Actually, I got an email from a. 

01:26:23
Dr. Pradeep Chopra
Lady in Peru who had heard your podcast. See? 

01:26:29
Jennifer Milner
So you're going to get all the love now. Well. As always, it is so great to have you on the podcast and to have you contribute your wisdom to everything that we are trying to continue the conversation around Eds, getting accurate information out there for people to be able to feel like they are able to learn from trusted and reputable sources and get information that actually may be helpful on their own health journey and their own sort of road to discovery. So thank you so much once again for being here and putting up with all of our questions and synthesizing everything so wonderfully. 

01:27:04
Dr. Pradeep Chopra
Thank you, Dr. Bluestein. 

01:27:05
Dr. Pradeep Chopra
Thank you, Jennifer. It's a pleasure. I love this podcast. We keep it solid, but we do add some humor to it. I do like that. I love my hack section. 

01:27:19
Dr. Linda Bluestein
We love your hacks. We love your hacks. 

01:27:22
Jennifer Milner
We're going to have to write up a whole sheet of Dr. Chopra's hacks. 

01:27:25
Dr. Linda Bluestein
We will. And I want to add one other thing in there that I thought of. Jen, as you were saying that when I was in my residency at the Mayo Clinic, one of the things that I really liked was it wasn't the senior faculty, teaching the junior faculty, teaching the senior resident, teaching the junior resident, teaching the medical student. We learned directly from the faculty. So that's part of what it's like the telephone game, right? So by bringing someone like Dr. Chopra on, we want to bring experts that can share the information directly with our audience so it's not filtered through all these different ways of getting contorted. And so we really appreciate, Dr. Chopra, you taking that time because we know you're extremely busy and people being able to hear directly from you is so incredibly beneficial. I feel like it's such a great way for people to learn and get much more accurate information than if they get it from a whole bunch of other sources. 

01:28:15
Dr. Linda Bluestein
And that's what we do. We bring in experts from all different areas to get the best quality information that we possibly can for our listeners. 

01:28:22
Dr. Pradeep Chopra
Absolutely. 

01:28:22
Dr. Pradeep Chopra
Thank you very much, Jennifer. Thank you, Dr. Bluestein. It's such an honor and thank you for inviting me. I agree with you, the more information we share, the more we try to enlighten our patients. It does help. And we work on the Hashtag Utrechtomy movement. 

01:28:44
Jennifer Milner
Everybody heard it here first. We are starting that. We are starting that. 

01:28:47
Dr. Pradeep Chopra
You heard it here first, right? 

01:28:49
Jennifer Milner
Well, you have been listening to the Bendy Bodies podcast with the Hypermobility MD. Our guest today has been Dr. Pradeep Chopra, a specialist in chronic complex pain conditions and their associated coin existing conditions. Dr. Chopra, thank you so much for once again coming back and being our guest. 

01:29:04
Dr. Pradeep Chopra
Thank you so much and we will. 

01:29:06
Jennifer Milner
See everybody another time. 

01:29:09
Dr. Linda Bluestein
Thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD podcast. Help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. This helps raise awareness about these complex conditions. Visit Bendybodiespodcast.com and follow us on Instagram at bendy underscore bodies. We love seeing your posts and stories, so please tag using hashtag bendybuddy. You can also find me Dr. Linda Bluestein on Instagram, Facebook, Twitter and LinkedIn, all with the ID hypermobility MD. This podcast is for general informational purposes only and does not constitute the practice of medicine or other professional healthcare services, including the giving of medical advice. No doctor patient relationship is formed. This is not intended to be a substitute for medical diagnosis or advice. Do not disregard or delay obtaining medical advice for any medical condition you have. The opinions shared are that of the guest and do not necessarily represent the views of the hosts or any particular organization. 

01:30:13
Dr. Linda Bluestein
Thank you for being a part of our community and we will catch you next time on the Bendy Bodies podcast.