Tarlov Cysts Truths with my Surgeon, Dr. Frank Feigenbaum (Ep 116)

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Dr. Linda Bluestein: [00:00:00] Welcome back, Every Bendy Body, to the Bendy Bodies podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility MD. I am so excited to chat with Dr. Frank Feigenbaum today. Dr. Feigenbaum was my surgeon when I had Tarlov cyst surgery on August 11th, 2011. That's easy to remember because it's 8 11 11.

Um, so the last time he saw me, I was probably wearing a gown, a hospital gown, and, uh, It's really great to get to chat with him again after so many years and I feel like there's still so much confusion about Tarlov cysts and the symptoms that they cause and the connection with connective tissue disorders, what types of other alternatives there are to surgery, [00:01:00] um, what the outcomes are and things like this.

So I'm really excited to dig into all of those topics. Dr. Feigenbaum is a board certified neurosurgeon practicing in Dallas, Texas and in Cyprus. He has extensive experience in treating symptomatic Tarlov cysts and other spinal meningeal cysts. Dr. Feigenbaum has developed and refined surgical techniques for the treatment of multiple types of symptomatic spinal meningeal cysts and collected outcomes data following surgery.

He also specializes in minimally invasive spine surgery with extensive experience in both developing minimally invasive technology and teaching minimally invasive spinal surgery techniques. Dr. Feigenbaum is the author of numerous journal articles and book chapters on spinal meningeal cysts as well as other surgical disorders.

Tarlov cysts are often labeled as asymptomatic and are not even reported on radiology imaging, so it's really important to have this conversation. As always, this information is for educational purposes only and is not a substitute for [00:02:00] personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks.

Here we go. I'm so excited to chat with you, Dr. Feigenbaum. I don't know if you know this, but you did my surgery back in 2011. Well, yeah, of course. Yeah. Okay. So it's been a while since I've seen you. 

Dr. Frank Feigenbaum: You're very memorable though, so. 

Dr. Linda Bluestein: Oh, well, I think it was probably my friend, Trisha, who was more memorable.

Do you remember her? 

Dr. Frank Feigenbaum: Oh, 

Dr. Linda Bluestein: okay. Yeah. Trisha, Trisha came in with me. Trisha Martin is also an anesthesiologist. And she came with me to the pre op appointment. And you said, yes, you thought I was a good surgical candidate. And we were discussing like when we would do the surgery. And Trisha is very persuasive.

And she's like, well, she's here in town. She flew from out of town. Do you think maybe you could do it tomorrow? Like in the very near future? Yeah. She's very, very persuasive. 

Dr. Frank Feigenbaum: Yeah, I think that rings a bell. Yeah. 

Dr. Linda Bluestein: Yeah. I think, I think we had some conversation about Spanx. 

Dr. Frank Feigenbaum: I don't remember that. Okay. Usually [00:03:00] how fast you get surgery depends on your insurer.

Usually you have to get pre certification. I can take a variable amount of time. That's really the issue. 

Dr. Linda Bluestein: Yeah, totally. So I didn't eat, eat or drink anything. And the next day I was, I was literally in pre op when I got the call from my insurance that it was approved. So yes, 

Dr. Frank Feigenbaum: 100 

Dr. Linda Bluestein: percent correct that that was, uh, that was the factor that we were waiting for.

So. Your medical 

Dr. Frank Feigenbaum: director was in a good mood that day or something. 

Dr. Linda Bluestein: I really lucked out on that one. So, so anyway, I'm just so excited to chat with you and I feel like this is such an important conversation that is not frequently talked about in the world of connective tissue disorders and the podcast is very much focused on people who have, you know, Ehlers Danlos syndromes and, and other connective tissue type problems.

So, Charlotte cysts, meningeal cysts are an important part of that conversation. 

Dr. Frank Feigenbaum: Yeah, for sure. No 

Dr. Linda Bluestein: question. Okay. So let's start out with some definitions then, just so we know that everyone's on the same page. And so people know, cause there's probably some people listening that have no idea even [00:04:00] what a tarlof cyst is.

So could you start out by telling us what a tarlof cyst is? 

Dr. Frank Feigenbaum: A tarlof cyst is when one of the nerve roots in your spine overfills with spinal fluid and it kind of balloons up. Like if you had a weakness in a hose in your backyard, when you turn the water on, it kind of balloons up in that section. Um, that, that is kind of a basic description of a tarlof system.

The problem with that happening is that there's other nerves that are next to it usually. And when the nerve balloons up, it ends up compressing other nerves that are next to it that can cause symptoms or It's not the normal state for a nerve to be ballooned up like that and all the nerve fibers inside stretched out, so you can get symptoms from that also.

Dr. Linda Bluestein: Okay. And what about a meningeal cyst? 

Dr. Frank Feigenbaum: Tarlosis is a type of a meningeal cyst. A meningeal cyst is any cyst that arises from the covering of the spinal sac in the brain. It's called a dura. In my practice, I [00:05:00] only treat spinal meningeal cysts, so far. Uh, the most common ones are tarlov cysts, and then something called a intrasacral meningocele, also historically called meningeal diverticulum.

And then, beyond that, there's other types of cysts called A catech spinal sac cyst, or false arachnoid cyst, there's several. 

Dr. Linda Bluestein: Mm hmm. Okay. Okay. And are these cysts always symptomatic? 

Dr. Frank Feigenbaum: No. Um, in fact, if you went and did an MRI on a whole bunch of people on the street, a lot of them would have small cysts here or there, usually Tarlov cysts.

Um, and you can have cysts like that and have zero symptoms. You, in order to make a diagnosis, you really have to correlate the person's symptoms to the location where the cyst is present and compressing nerves or causing problems. 

Dr. Linda Bluestein: Sure. Yeah, and it's so, I think, um, that misconception that they're always asymptomatic is still true.

Sure. [00:06:00] And I know for me personally, that was one of the challenges that I faced for the period of, you know, a number of years that I was having symptoms before finally having a selective nerve root block and having a, you know, more thorough evaluation and then, and then eventually coming to see you. So I think that's, 

Dr. Frank Feigenbaum: that's the dogma that we fight all the time.

Um, historically. We were taught to leave these cysts alone. There wasn't a strategy to treat them, and we were told to avoid them to avoid serious complications related to surgery. And, um, it's just sort of taking time for people to come around to the idea, and you have to kind of turn the battleship slowly, but, um, that just like you can say that, uh, Tarlav cysts.

It's not correct to say that TARLOV cysts are always symptomatic, but it's not correct to say TARLOV cysts are never symptomatic [00:07:00] either. And that I think has been pretty thoroughly shot down and to the point where the, um, uh, the Centers for Disease Control have specifically assigned a, uh, a number to, uh, TARLOV cysts as a, as a pathologic entity.

Something that can cause symptoms. So, I think we're getting there. 

Dr. Linda Bluestein: Yeah, yeah, no, that's good. What percentage of your tarlov cyst patients do you think either have a known or suspected connective tissue disorder? 

Dr. Frank Feigenbaum: Um, I don't know that number, and I think, um, it's probably high. It is correct to say that if you have a connective tissue disorder, you're more likely to have a spinal meningeal cyst.

However, the reverse I have found not to be true. Just because you have a Tarlov cyst doesn't, I think the probability that you have a connective tissue disorder, at least one that's been described, is probably low. 

Dr. Linda Bluestein: [00:08:00] When we talk about these cysts, they can occur anywhere in the spine, correct? 

Dr. Frank Feigenbaum: Uh, a tarlot cyst is a spinal nerve root, so anywhere you have a spinal nerve root, you can have a tarlot cyst.

So that can be the cervical, thoracic, lumbar, or sacral spine. 

Dr. Linda Bluestein: Okay, and then the symptoms would be, if they were symptomatic, they would correlate with that nerve root level, probably. 

Dr. Frank Feigenbaum: That's right. Um, in the cervical spine, if you get a tarlot It, that means you have a cyst of one of the nerve roots in the spine and you get something called a radiculopathy, which is symptoms related to that one particular nerve.

Uh, it's a little, you know, and so on down the spine. I think in the sacrum it's a little different. The situation in the sacrum is a little different than other parts of the spine. In the sacrum, um, there's this canal, the canal that goes all the way up and down your spine, but in that canal in the sacrum, There's a whole bunch of spinal nerves that are grouped together against each other, next to each other, and usually there's [00:09:00] just enough room for those spinal nerves and that's it, 

Dr. Linda Bluestein: but 

Dr. Frank Feigenbaum: if one of those nerves becomes a cyst and compresses the other nerves around it, you can get symptoms that aren't, that are more than just related to the one particular nerve that became a cyst.

You can get symptoms related to the other nerves that are being compressed also, so it's a little different in the sacrum. 

Dr. Linda Bluestein: Mm hmm. Okay. No, that's very helpful. And do you think that it's, you see more often where people have a lot of these cysts or isolated or, or how does that, how does that pan out? 

Dr. Frank Feigenbaum: When I do a sacral tarlov cyst surgery, the average number of cysts per patient is something like 3.

4 or something. Oh, really? That's the average number, yeah. 

Dr. Linda Bluestein: In terms of working at patients for, for these conditions, um, what are the most helpful imaging studies? 

Dr. Frank Feigenbaum: Uh, MRI is the best, particularly an MRI of the particular part of the spine that you're interested in. Sometimes, like on a lumbar MRI, you can see some of the cysts and the sacrum, but, uh, [00:10:00] All the cuts on the MRI don't go all the way down into the sacrum, so if you have a sacral cyst, it's better if you have an MRI of the sacrum or sometimes the pelvis, which shows the same 

Dr. Linda Bluestein: thing.

Okay. And do you need contrast for that or you can, that could be an MRI without contrast? 

Dr. Frank Feigenbaum: Uh, that depends. If the, if, uh, it looks like straightforward multiple tarlov cysts, you don't necessarily need contrast. If you're suspicious that that cyst might be something else, like a mass or a tumor or something of a nerve, you would get with contrast.

Dr. Linda Bluestein: And since it is so important to determine if the cyst is causing the person's symptoms or not, you know, you said you correlate that with their history, of course, um, what else do you do in order to determine if the cyst is related to the person's symptoms? 

Dr. Frank Feigenbaum: Well, you have to gather a detailed history. As you pointed, you just mentioned, for example, if you have a cyst in the sacrum, you get symptoms of sacral nerve root compression.[00:11:00] 

So you're going to listen for that. It would be sacral pain to the buttock down the back of the leg, numbness in those areas, weakness in the feet, pain or numbness in the private areas, the perineum, bladder or bowel symptoms. painful intercourse or sexual dysfunction and pain typically made worse by sitting.

Those are very, some of the most common symptoms that, it's kind of a constellation of symptoms that you would hear about. Not everybody has every single symptom, but it makes it easier when the patient has, does have that complete constellation of symptoms. And then you, um, uh, can examine the Unfortunately, with involvement of the lower sacral nervis, there's not a whole heck of a lot you can pick up on physical exam.

Those nerves do more like control perineum and the bladder and the bowel, and there is some innervation of the intrinsic muscles in the feet and different things you [00:12:00] can kind of pick up. You can do exam for numbness in different areas of the legs of the perineum. But, um, most, this is a diagnosis that's made mostly from the history of the symptoms that the patient describes and then imaging studies.

Um, there, there are certain situations where it's not clear. Maybe the patient only has a couple of symptoms. a couple of those of that constellation of symptoms and but on the MRI you see an obvious cyst or let's say the patient has a predominance of symptoms on one side but the biggest of the cysts that they have in other words the cyst is probably pushing the most on the nerves is on the opposite side so usually a cyst on one side doesn't pushing on the nerves on one side doesn't cause symptoms on the other so in those cases where It's not kind of a easier diagnosis.[00:13:00] 

I have patients get something you already mentioned, the diagnostic nerve block. And the diagnostic nerve block is where you go to a pain doctor usually. There's other types of doctors that do them, but it's usually an anesthesia pain doctor or an interventional neuroradiologist. And that doctor puts some numbing medicine under x ray exactly next to the cyst.

that you think are causing the symptoms. And if the cysts are what's causing the symptoms and you put some numbing medicine where they're pushing on the nerves, usually the person's pain will go way down within 30 minutes and it might last for a couple of hours because the numbing medicine wears, wears off pretty fast.

No steroids, just numbing medicine, and you keep a pain log of your pain score before the block, your sacral pain, and then hour by hour after the block, and you can look at that log and see if it makes sense that the cysts were what's causing your symptoms, and if you had the block and it seemed to eliminate your symptoms for a [00:14:00] couple hours, that would imply that the cysts are a problem, and you might be a candidate for a surgery to treat the cysts.

That kind of resolves some of these question marks, like if the biggest cyst is on the opposite side or the majority of the symptoms are, or maybe the patient only has a couple of the symptoms. If you get a block by the cysts and it takes your pain away for a couple of hours, well, it was probably what was responsible for at least the pain.

Dr. Linda Bluestein: Yeah, I remember when I had my procedure, so they drained the cyst first, and then they did the block with local anesthetic, and My pain went away 100%. It was so dramatic. And I had been in pain for two years. So when I got up off the table in interventional radiology, and it was one of the pain doctors who did it, and I got, and I got up off the table and I had zero pain.

I just like broke into tears because I literally thought the pain was never going to go away. So. I was, I was shocked. And they told me to do something that would provoke the pain. And I'm like, well, that's pretty much everything. [00:15:00] So I was like, that's not going to be hard to do. And they said, why don't you go walk up and down the hall?

And I, I started to walk and I started to like run and they're like, hang on, you know, cause I was just so excited that. Finally, I was just, you know, and you're, and you're right, it didn't last very long. I was in the car, uh, you know, in the back seat. My, my parents had actually driven me to Mayo to where I had trained to have this procedure done and they were driving me home and it was starting to come back, you know, and it came back pretty quickly once it started to come back.

But at least then I knew, okay, this is valuable information. 

Dr. Frank Feigenbaum: The usually sitting is what people do after that's usually their most. Yeah, but whatever sets the symptoms on off for you is the best. But, um, the, um, you mentioned someone drained the cyst, which I would, I, I try to avoid, uh, at all costs if possible, that cyst is a spinal nerve.

And when you put a needle in a [00:16:00] nerve, you can injure the nerve fibers inside. And that cyst being a nerve is connected to this bigger sack of fluid called your spinal sac. with several hundred milliliters of spinal fluid. So you can put a needle in the cyst and draw fluid out to your heart's content.

It's just going to keep on filling with more spinal fluid from the spinal side. And, um, so in the, in the past, people used to do these diagnostic cyst drainages, but I think more currently there's no need for that. If you do a selective nerve block next to the cyst, that gives you all the information that you need without the risk of putting a needle in the cyst and injuring the nerve fibers inside.

And I've seen that. I've seen patients who've had needle procedures and you look inside the nerve and there's changes, something called hemocitarin, which is deposition of blood and so [00:17:00] forth inside the wall and all in and around and amongst the nerve fibers, which, um, it's not aesthetically pleasing to look at.

So, and it can't be good. I, I try to avoid, plus any procedure where someone's putting a needle in the cyst and doing things to it, creates scarring around the 

Dr. Linda Bluestein: cyst. 

Dr. Frank Feigenbaum: Particularly if they inject glue into the cyst and that makes my life more difficult when you end up having a definitive surgery for it because now there's this kind of scarring and stuff all around the cyst and the nerves and the cysts are stuck together makes increases your risk of a surgery to some extent.

It really isn't necessary. Get just as much information just by getting a diagnostic block next to the cyst, you don't have to stick needles in them. 

Dr. Linda Bluestein: So I'm really glad that you brought up about the fiber and glue and the draining the cyst. It [00:18:00] sounds like, you know, of course you can do lots of studies looking at different groups and different procedures and things, but there's nothing like observation.

So you're saying when you actually are doing the surgeries and you're looking through the microscope at these tissues, you can actually see damage that has taken place from these procedures. Am I hearing you correctly? 

Dr. Frank Feigenbaum: Yeah. And I've, there's actually a picture of that, that I published in a chapter. I mean, I think it's just common sense.

Your spinal nerve is kind of like a hose with, uh, fibers inside that are conducting information and the, the covering of that nerve is intended to protect those. nerve fibers. Why would you inject a bunch of blood products or glue into that in and amongst those fibers and things? It doesn't, it just doesn't sound good.

Now, um, there are certain, uh, doctors that do fiber and glue procedures for treating [00:19:00] cysts, um, and they have published, uh, information supporting that. I think that And we looked at some of us that treat TARLOV cysts surgically. Obviously, we have a bias, but then this may not agree with the opinion of the doctors that treat with needles and injecting glue and things.

The number of cases where, for example, there's just only one cyst and you can just treat that one cyst or two cysts, Like I said, the average number of cysts per patient is 3. 4. So how would you possibly treat all those cysts? And if you take that group as a whole, particularly the ones that I see in my practice, who've had those glue procedures, the major downfall of those glue procedures, needle procedures for the cysts is that the cysts recur.

As I said, the cyst is a spinal nerve connected to the spinal sac. I'm not sure how you, you know, treat that. put together that if you squirt [00:20:00] some glue into the cyst, that's going to stop spinal, the way spinal fluid gets into that nerve. Doesn't make any sense. You know, they keep, they keep filling. Whereas I've never had a cyst recur the way I treat it with wrapping that contains it and prevents it from re expanding in the future.

Um, and in fact, as I said before, if people go and they have these glue procedures, makes my life more difficult when you actually need a surgery to treat the cyst. definitively and increases your risk of surgery. Now, um, there's perfectly good doctors out there that treat these, they'd use these needle procedures and I'm sure they'd have a different opinion than I would, but, um, and there are a couple of times a year that I'll send a patient for a needle procedure.

It's usually someone who is such a bad surgical candidate that they can't tolerate a surgery there. Have heart problems and lung problems, and we go to get clearance for that [00:21:00] medical clearance for that patient. And the doctor's just like this surgery can't stand. This can't handle the surgery for medical reason.

That would be a situation where you're looking for something to do something for the patient, and you would send them maybe. to try some 

of 

Dr. Frank Feigenbaum: these needle procedures. 

Dr. Linda Bluestein: So we're going to, we're going to talk about, you know, uh, surgical outcomes and things like that in a little bit, but I want to come back to what you just said.

So are you saying that with the technique that you use and the wrapping and everything that you have, that you have not ever had a cyst recur in that same location? I've never had a cyst recur that I've treated 

Dr. Frank Feigenbaum: with the wrapping business. 

Dr. Linda Bluestein: Right, right. It's permanent. Wow. That's, that's amazing. I just wanted to repeat that because that's, that's, uh, very important.

Okay. 

Dr. Frank Feigenbaum: You can have a cyst. occur on the part of the nerve farther along where there wasn't one or, uh, there's different circumstances. Maybe some other smaller cysts in the vicinity get bigger and over time and cause symptoms, but I've never [00:22:00] had a sister, at least one doesn't come to mind. 

Dr. Linda Bluestein: Okay. Okay. I want to come back to symptoms for a minute, just because I want to kind of finish up this, like a assessment type section of the conversation.

What about PGAD, persistent genital arousal disorder? Is that something that people sometimes, uh, you know, might have in as part of their symptoms with sacral cysts? Is that, are you aware of that? 

Dr. Frank Feigenbaum: I include that in sexual dysfunction, which I mentioned before as one of the symptoms. And, um, I published an article on this in the journal OBGYN, even though I have nothing to do with obstetrics and gynecology, but, and I actually gave a speech.

I was asked to give a speech at the Southwest conference, OBGYN conference here in Dallas last year for OBGYNs. And, um, this symptoms real, this is really related to compression of the sacral nerve roots. And those nerve roots go to your, uh, private parts. So they control [00:23:00] sexual function and sensation in the perineum and so forth.

And I think I may be proven later, you know, wrong later in time, but my impression is that PGAT is one of the earlier symptoms of compression of the nerve roots that go to the perineum and sexual functions and that when a nerve that controls sexual function is compressed, you get this persistent genital arousal syndrome which probably later on in time as the nerve becomes more, nerves become more injured, either become straight up pain or just numbness.

Uh, so to, to kind of put it in a spectrum of symptoms that relate to sexual function. I, I think that's where PGAD fits in. 

Dr. Linda Bluestein: Mm-Hmm. . 

Dr. Frank Feigenbaum: It's not the mo I don't usually cite that article when I go to neurosurgical meetings, but it's, you know, it's, it's out there and it's, and we found that, um, you could [00:24:00] actually, um, the, the, the, if you had surgery and treated the tarof cyst, that it would help the PGA.

in that small group of patients that we looked at. And also as a corollary, I'm finding that the diagnostic nerve root block also temporarily stops the PGAD in a significant number of patients as a diagnostic test. 

Dr. Linda Bluestein: Okay. What about, um, intracranial pressure and tarlovsis? So, because I, I had a patient who had, I mean, her, The entire, like, thoracic, um, spine was full of tarlo huge tarlopsis and, um, I know she also had, like, uh, spontaneous intracranial hypotension.

Is that something that you see very often? 

Dr. Frank Feigenbaum: Uh, there, there has been a lot of theories as to what causes tarlopsis. Um, one of them, I don't know. Did are you saying hypotension or hypertension? Hyper uh, 

Dr. Linda Bluestein: hypotension. I'm thinking if [00:25:00] the CSF basically is, is diverted into these cysts, can that cause Oh, I see.

Connect. Can that cause intracranial hypotension? I see 

Dr. Frank Feigenbaum: that's a little different than I thought what you were talking about. So, patients, um, sometimes describe low CSF pressure symptoms in association with the tars. like you're describing. And in fact, um, patients go to clinics where they undergo workups to look for spinal fluid leaks.

And these Tarlop cysts or other types of spinal, spinal meningitis are one of the prime targets that these people are looking for these, uh, centers that work on, uh, CSF, workup CSF leaks. And if somebody can prove with usually a study called a CT myelogram, if they can prove that, One of these cysts is leaking, you can then have a surgery to treat that cyst and stop it from leaking further.

So, I mean, obviously, the more cysts you have, the higher the probability that one of them might be leaking, [00:26:00] but, um, um, you have to prove it. You can't just, like you mentioned, a patient who had tarlov cysts all up and down their thoracic spine, that can be very difficult. You know, how do you prove, you can't just kind of like, uh, do a surgery where you pop the hood on someone's spine and just go, start going all up and down both sides and treating all the cysts.

that you, what happens is you go to one of these centers. If you don't see an obvious spinal fluid leak on the initial imaging studies, what they will do is they will do something called, they have different tests that they do, but, uh, some radionucleotide studies, sometimes this CT myelograms that they do with delayed imaging and different things, technical things.

Right. But in the end, if you find a particular cyst that you're suspicious of, They can, um, do like a blood patch just on that one cyst, just that specific one cyst that you think is leaking. And it's kind of a diagnostic [00:27:00] blood patch, because if you do a blood patch on that particular cyst, And the patch puts pressure on it to the point where it stops leaking, your symptoms might go away briefly.

And that would serve as either a treatment, if the symptoms don't come back, or if it temporarily stops the symptoms and then they come back, then that would imply that that one cyst is leaking and it's a target for further future treatments, like a surgery or more blood patches or whatever. 

Dr. Linda Bluestein: Okay, so, so not all tarlov cysts leak.

Some do, some don't, 

Dr. Frank Feigenbaum: is what I mean. I would say the vast majority don't. 

Dr. Linda Bluestein: The vast majority don't, okay. So, but if they do this, doing a blood patch, which is of course something I've done a lot, well, usually in the context of, you know, postural puncture, headache type scenario, that's where I did it most commonly when I was working as an anesthesiologist.

Would that cause similar problems though if you did a blood patch for a tarlov cyst that was leaking and then later it was [00:28:00] determined that that patient needed treatment? surgical treatment of that cyst?

Dr. Frank Feigenbaum: If you don't see it, obviously leaking on imaging studies, that's all you got, you know, and you got to go with what, that's the best you got. So you have to prove a particular cyst is leaking. You can't just say, Oh, you know what? I think it's this one. Let's operate on that one today. Tomorrow it might be, you can't, I mean, you have to specifically identify a particular cyst that is a source of the symptoms.

And then, and if that's where we are with technology, hopefully, hopefully somebody developed something better and maybe already it's out there, but I, I, That's what I've seen patients go and do, but it can be difficult. I mean, like for example, they have cysts throughout their whole spine. So the patient, they'll go into one of these centers and they'll get a blood patch that covers the whole cervical spine.

And then later on one that covers the, covers the whole thoracic spine. And then some other one, the whole [00:29:00] lower part of the spine. And they'll say, did any one of those three help you? And they'll say, Oh, well, yeah, the one in my, when you did it, um, this blood patch that covered my whole cervical spine, that, that took my symptoms away briefly.

So then that focuses you on the cysts in the cervical spine. So then you start doing these blood patches for specific cysts in the cervical spine, the ones that you think are the most, and that way you narrow it down to one. Progressively. Does that make sense? Yes. Mm-Hmm. . Yeah. But it can be a, it can be a lot.

It's, you have to be, it's, you know, you have to stick with it and it can be a difficult situation. 

Dr. Linda Bluestein: Yeah. I mean, I think that this hopefully really starts to help people to understand how challenging it is, how challenging it can be, I should say, to correlate a person's symptoms with. with the pathology that you might see on imaging because things are often not as straightforward as, as we would like them to be.

So, um, I think that's, uh, important to be aware of this more unique [00:30:00] situation of where the cyst is leaking. And in terms of, uh, indications and contraindications for surgery, of course, patient, patient selection is hugely important. Um, are there other things that we should know about the indications and contraindications?

Dr. Frank Feigenbaum: That's a really broad question. I don't know. Can you be more specific? 

Dr. Linda Bluestein: So, so you mentioned a couple, you mentioned a couple contraindications earlier. You know, so someone has, you know, someone has, um, you know, basically they're not a good surgical candidate period because they're, they're so high risk.

They have, they have You know, these are the people that I definitely, you know, uh, didn't like to have to anesthetize or you would say, yeah, this person is just not gonna, they're just not going to do well because they, like you said, they have such severe aortic stenosis or coronary disease or whatever.

So, so we know that there's, um, those kinds of contraindications. And of course, we've talked a little bit about, you know, you do the block and, uh, correlating the physical findings on exam and the history with what you're seeing on the, on the imaging. Um, is, are there other things in [00:31:00] terms of, okay, I, I, let me throw out an example.

So let's say someone has had symptoms for five years. Is that someone that's a less good surgical candidate than someone who's maybe had symptoms for a year? Are there things like that that you also, 

Dr. Frank Feigenbaum: you would think that, um, the longer the nerves have been pressed on and injured? The harder it is for your body to heal the nerves once you get the pressure off of the nerves by treating the cysts.

Um, but when I looked at my data, um, the length of time that the patients had symptoms didn't necessarily correlate with outcomes. I think that that really speaks to the body's ability to heal the nerves, more than actually we give it credit for. But that's an important point, and it's kind of a critical point that I always try and point out.

I can do a surgery to treat the cysts and get the pressure off the nerves. Nobody has the ability to heal somebody else, someone's nerves for them. I can't heal [00:32:00] somebody's nerves. We don't have that technology. And really, it's up to that person's body to heal the nerves and how you do after surgery really depends on which nerves were injured, how much each nerve was injured, your body's ability to heal the nerves, and what you're trying to do after the surgery that challenges the nerves.

Dr. Linda Bluestein: Okay. And you talked a little bit about the wrapping of the cyst, but could you explain, you know, in terms of a surgical technique? exactly what it is. Well, I shouldn't say exactly, because that would, that would take way too long, but like basic, what you basically are. There's nothing magical 

Dr. Frank Feigenbaum: about it.

There's nothing magical. The cyst is a nerve that's overfilled with fluid. So what you, you expose the cyst from the back and that cyst is a nerve. You can't just remove someone's sacral nerves. Um, you need those to perform important functions like sensation in the [00:33:00] perineum down the back of the legs and then, you know, your bladder function, your bowel function, your sexual function.

So you, if you just go in and remove someone's tarlof cyst, you're removing one of their spinal nerve roots that they need for these functions. So the way that treatment that I developed, um, and I've been using, or at least started with, is to get the fluid out of that nerve or cyst, you kind of deflate it so that it's a normal size nerve again.

And then you wrap it with this material like a sleeve and the sleeve, um, contains that nerve or cyst and prevents it from refilling and re expanding in the future. It doesn't constrict the nerve, it just makes it, prevents it from being anything but a normal caliber nerve that it was supposed to be. And, um, that has worked pretty well for me and that's what I've kind of stuck with and, um, the wrapping is permanent, as I [00:34:00] said before.

And it turns out pretty well. 

Dr. Linda Bluestein: Okay, how do you deflate the cyst? 

Dr. Frank Feigenbaum: Some cysts, some cysts being a nerve root connected to the spinal sac, you can kind of just squeeze and the fluid goes back up into the spinal sac where it came from, depending on the extent of communication between the spinal sac and the cyst.

If it's a big communication and the fluid flows easily between the spinal sac and the cyst, you can just kind of squeeze it or press on it and the fluid goes back up into the spinal sac. And while it's still deflated, you wrap it. Other cysts, you can't get the fluid to go back up into the spinal sac because the opening is so small.

So you make a little opening in the cyst wall, the sleeve, and you drain the fluid out, and then you put a little clip on the opening that you just made on the sleeve to close it, and then you wrap it. Um, but one way or another, you got to get the fluid out of it and wrap it with the 

Dr. Linda Bluestein: sleeve. [00:35:00] Okay, and the sacrum is a solid bone, right?

So you have to get in there in the first place. 

Dr. Frank Feigenbaum: When you make the opening from the back, you have to make a little window in the bone on the back of the sacrum. Usually that bone has been very thinned out by the cysts. pressing on it because as the cysts get bigger in this, the cysts are inside your spinal canal, which is surrounded by bone.

And in that canal, there's all the nerves and the cysts. So you have to make a window in the bone on the back of the sacrum to get into the canal to treat the cysts. But as the cysts get bigger, they put pressure on the bone around them, and over time, the bone thins out and the cysts make a pocket for themselves in the bone.

So usually the bone overlying the cysts on the back of the sacrum has been very thinned out or the cysts are through the bone on the back of the sacrum. But in any case, you have to make a window in the bone there to get at the cysts. 

Dr. Linda Bluestein: I know when I had my cyst drained and I had the, uh, uh, block done, the [00:36:00] selective nerve root block, they, they said they put the needle right through my sacrum because it was so thin.

Dr. Frank Feigenbaum: If you just had the diagnostic block, you wouldn't have had to had a bone, a needle through the bone, but yes, often the, as I said, the bone on the back of the sacrum is so thinned out that you can easily put a needle through 

Dr. Linda Bluestein: it. We're going to take a quick break. And when we come back, we are going to talk about.

Surgical complications, outcomes, and the kind of data that Dr. Feigenbaum has been collecting and doing research on. Alright, we're back with Dr. Feigenbaum talking about Tarlav cysts and really excited to dig more into, uh, the surgical approach. So you're saying that you have to make a window, um, through the sacrum, which is normally a solid bone.

But in this case, it's often very thinned out because the cysts are, Putting pressure, kind of like, maybe like a waterfall going over a rock for many, many [00:37:00] years, kind of smooths out that rock and starts to erode that rock. What about afterwards, after you've treated the cyst? 

Dr. Frank Feigenbaum: Well, you treat each of the cysts.

I typically treat all the cysts in the sacrum 

Dr. Linda Bluestein: that are, 

Dr. Frank Feigenbaum: that I can find that not only treats the cysts that are the ones that are most likely causing the symptoms, but also if often there's adjacent cysts, Um, that could potentially be symptomatic in the future, or maybe I'll visually look and confirm that they are putting pressure on the nerves.

I will treat all the cysts that are in the spinal canal in the sacrum, um, because usually your first, uh, shot at treating the cysts is the best one. If you only treated one of the cysts, let's say you wanted, the patient had three cysts and you wanted to Treat them one at a time and see which one is the symptomatic cyst.[00:38:00] 

You would do, you know, five different surgeries. But the problem is after the first surgery, you get extensive scar tissue that forms that would create, would increase your risk of subsequent surgeries of Particularly spinal fluid leak and nerve injury because everything's stuck together and it's hard to separate.

That scar tissue incidentally, is how your body normally heals. And many times after surgery, when the patient's still, maybe they still have some nerve healing to do or their nerves were injured, they go and see another practitioner and someone will say, Oh, the scar tissue is causing your symptoms. The scar tissue on the spine.

It's not like scar tissue in the abdomen, where it's, it's The scar tissue binds down the intestines and you get obstructions and things. When you do surgery on the spine and you treat a cyst, particularly larger ones, it leaves a big empty space. There's a big pocket in the bone where the cyst was. [00:39:00] That doesn't mean that, you know, the, when, when your body fills in that space, that it's going to cause a problem.

It's just, your body's not going to leave a vacuum there. Your body's going to fill it in with some fluid or some scar tissue or healing granulation tissue, whatever you want to call it. So, that granulation or scar tissue is not an expanding cyst pressing on the nerves like it used to be. 

Dr. Linda Bluestein: Mm hmm. 

Dr. Frank Feigenbaum: So, just a side note.

Dr. Linda Bluestein: Yeah, no, that's important. And intraoperatively, you're also doing monitoring of the function of the nerves as well, correct? 

Dr. Frank Feigenbaum: The monitoring in the surgery serves a couple purposes. It can tell you if you're doing something to irritate a particular nerve and it'll, it'll say, hey, you know. Stop manipulating me or, you know, stop aggravating me.

The, and you kind of back off it and try something else. Um, another purpose of the monitoring is that at the end, after I've treated each of the cysts, I stimulate that particular [00:40:00] nerve proximal or above or closer to the brain than where I treated the cyst to see if that nerve still conducts electricity.

And, uh, monitoring technicians have leads. more distally in the arms or the legs or the feet and so forth. So when I stimulate before, where we treated the cyst, you should still be picking up a signal farther down. That tells you that the nerve is still at least connected. The limitation of the monitoring is that it's not at the point where I can test a nerve and tell you what percent that nerve is injured and how long it's going to take to heal.

Sometimes people have misconceptions about that, that the monitoring in surgery It doesn't give you that type of information, at least yet, that I know of. 

Dr. Linda Bluestein: Mm hmm. Yeah, I know that's a good point because having been on the end of doing anesthesia, not for charlotte cyst surgery, but for lots of other surgeries where they do with the intraoperative monitoring, [00:41:00] I, I knew that those were not things that you could assess for, but it seems like that would make sense that people would think, oh, maybe you can do these other, you know, obtain other information that way.

Dr. Frank Feigenbaum: Sometimes patients ask you, well, What did the nerve look like at surgery? And in surgery I can, once I treat a cyst and I get the pressure off a nerve that it was compressing, you can see the nerve that was compressed that it's been flattened and dented by the pressure there for so long. Um, it doesn't just suddenly pop back to the normal round shape it's supposed to be.

Uh, but really that's about the extent of it. I, after surgery I can say, Oh, well. Yeah, you know, it made sense. You could really see where the cyst was denting and pressing on the nerves and we relieve that pressure. So hopefully that helps. I can't just look at a nerve, even with a microscope, because you're looking at the covering of the nerve.

Right. Not looking at the electrical [00:42:00] fibers inside that nerve, the so called fascicles. And I can't tell you again, I can't say, I can't just look at a nerve in surgery and say, Oh, this nerve's injured 15%. It's going to be better in three weeks. You know, we don't have that really. If you're going to try and do that, you'd have to cut the nerve out and send it to the pathologist and have them stain it and look at it to tell you how much injury has occurred to them.

But again, you're cutting the nerve out. So that's, 

Dr. Linda Bluestein: Right, right. So even though you're looking under a microscope, you're not seeing inside and you're not seeing to that level of magnification, 

Dr. Frank Feigenbaum: right? It's really at a cellular level that you're, you're looking at the nerves. Or you're interested if you were to try to figure out how much that nerve has been injured.

Dr. Linda Bluestein: And you're saying that you can see that the nerve is maybe flattened or something like that. What about? 

Dr. Frank Feigenbaum: Yeah, compressed. Yeah. 

Dr. Linda Bluestein: Yeah, interesting. What about, uh, tissue integrity? Is that something that, you know, when you, uh, operate on some people that you go, wow, their tissues are just kind of falling [00:43:00] apart or seem much more stretchy or things like that or Is that not something that you necessarily can tell?

Dr. Frank Feigenbaum: Uh, are you, are you speaking in terms of connective tissue disorder? Uh, I have not noticed a really significant difference that affected me in 

Dr. Linda Bluestein: intraoperatively, 

Dr. Frank Feigenbaum: uh, in terms of the tissue cohesiveness in patients that had, uh, connective tissue disorders. I will say that. In certain patients that have something called the ectatic spinal sac cyst or really, really large tarlovus cyst that the cyst is so big that the covering has been stretched out so much.

that it just kind of falls apart. It's so thinned out. You can't really save it. Or another situation would be, let's say you have a tarlov cyst next to the spinal sac. The cyst has been up against the [00:44:00] spinal sac and pressing on it for a long time, most of the person's life. And when you get the cyst away from the spinal sac, that part of the spinal sac where the cyst was pushing on it for so long is super thinned out and at risk for leaking spinal fluid later.

That would be another issue with, uh, integrity of the, the tissues. But I think that in terms of connective tissue disorders, I haven't had a huge issue with wound healing or the way the tissues come together. I would say it's more cyst specific in general. 

Dr. Linda Bluestein: My husband who's a urologist, well, he's retired from clinical practice now, but he would sometimes come home and say, Oh my gosh, that person's tissues just, you know, he did robotic prostatectomies and he would comment that some people, and it could be for a variety of reasons, right?

It could be for a whole other reason. So, um, I think it's important to know that not only are there a host of [00:45:00] causes besides connective tissue disorders, but that some people had much nicer tissue integrity than other people. Yeah, 

Dr. Frank Feigenbaum: obviously as you get older, your tissues tend to, and I think this is something all surgeons notice, you mentioned your husband describing that, um, as you get older, also smoking 

Dr. Linda Bluestein: does a 

Dr. Frank Feigenbaum: real job on your tissues and you can definitely notice a difference when you do surgery many times in smokers versus non smokers, so don't smoke.

Yeah. 

Dr. Linda Bluestein: Quick, quick plug for, for, for not smoking. Yeah. 

Dr. Frank Feigenbaum: Yeah. 

Dr. Linda Bluestein: Um, okay. So you mentioned something that I wanted to come back to cause I feel like it's really, really important. So when I was getting my MRIs over a period of years, cause I had had, you know, some, some problems and then things got better. And then, but one thing that people had pointed out was, well, but you had that cyst on some of your earlier imaging.

But what's interesting is, of course, like I'm thinking about in my case, I don't remember them ever doing an MRI because everything was fine, right? I mean, I was having symptoms or else they wouldn't be doing [00:46:00] the MRI in the first place. But, but I think that there was, was often a conversation of, well, oftentimes these are present for such a long time or congenital, so, so why would they suddenly be causing symptoms now?

Dr. Frank Feigenbaum: Well, one property of spinal nerves is that. If the compression of the nerve comes on slowly or progressively over time, the nerves are able to compensate for injury up to a point. But, um, so the cysts have been there in many years and compensating or maybe you have modified your behaviors or you've kind of gotten accustomed to certain symptoms you don't really, it's come on so slowly you don't really equate it with.

something wrong. Uh, but then it's not uncommon to hear that something puts the nerves over the edge, you know, The straw that breaks the camel's back. It's just too much injury and the nerve can't compensate anymore. Like for example, [00:47:00] the cysts of, you know, patients have obviously had cysts for years. You can see the bone remodeling, which takes many years to develop, but their symptoms suddenly began after a car accident 

Dr. Linda Bluestein: or 

Dr. Frank Feigenbaum: a fall or childbirth.

These are some of the common, uh, things that people describe that kind of kick off their symptoms. Um, about 80 percent of my patients that describe onset of symptoms say the symptoms at that point become progressive. So you start getting worsening or more symptoms. And the average age to become symptomatic is about 50 in my patients, the, um, the vast majority are women, about 85 percent are, are, are women.

Dr. Linda Bluestein: And, in terms of, uh, you, you mentioned already about wide neck and narrow neck cysts and somebody asked a question about plugging the ostium with fat before wrapping the nerve. 

Dr. Frank Feigenbaum: Sometimes, let's say for [00:48:00] example, a patient has a cyst, a tarlot cyst, and the, for whatever reason, the integrity of the sleeve of that nerve.

was not good and that the covering of that nerve just fell apart and you can't close that nerve sleeve in a way that's 

Dr. Linda Bluestein: watertight. 

Dr. Frank Feigenbaum: So as spinal fluid enters that nerve, it's not going to be contained within the sleeve. It has the possibility of leaking out. So now you're in a difficult situation that you can't really get a watertight closure of the sleeve.

So you have to do something different. That's one of the original things that I figured out. The problem with your, what you would want, you know, what you're inclined to do is seal that nerve so that no more fluid can enter the nerve. But the problem is that the hole where the spinal fluid enters the nerve is also the The hole where the nerve [00:49:00] fibers, those fascicles, those electrical wires enter the nerve.

So if you just tie that entrance where the opening, where the spinal fluid comes in, you're also tying off the and damaging the nerve fibers that are trying to get in. So in those situations, what I will typically do is. Um, uh, put some fat into that little opening between the nerve and the spinal sac and place a suture there that just partially closes the opening, not completely closes it.

So the nerve fibers can still enter and there's a little fat there that's being held by the suture. So that allows the nerve fibers to enter the nerve or sleeve and still function, but it prevents. spinal fluid from entering that nerve or sleeve. That makes any sense. So basically you're preventing the spinal fluid from entering the nerve sleeve, [00:50:00] but you're allowing the nerve fibers to enter and still function without damaging them.

The number of times that I, um, as, as I developed some of these other ways of treating the cysts, I didn't have to use that type of technique, the plugging of the What I call the ostium or spinal fluid enters the nerve. I rely more, the number of times that I actually have to plug a nerve is gone way down.

And what I found is the less you do to a nerve, the happier it tends to be after surgery. So if you can just get away with just pressing on it and getting the spinal fluid to go back in the spinal sac and wrapping it, that's the best. You really have done the least, you've perturbed that nerve the least.

If you have to open it and drain it and put a little clip and then wrap it, that's second best. If you have to do maybe the, just the covering of the nerve is just so bad that it just fell apart, which is not very [00:51:00] common, then you would treat it with the plugging and then wrap the 

Dr. Linda Bluestein: nerve. 

Dr. Frank Feigenbaum: The general principle that I, I would propose and what I adhere to is The absolute least you do to that nerve, the better.

And there are other people out there that have done some things to the cysts that I, the cysts, which are spinal nerves, that I don't do. For example, instead of wrapping it, they'll open the sleeve and they'll cut away part of the wall and then sew it back together so that overall it's smaller. But the problem is when That nerve overfills with fluid.

The nerve fibers, those electrical fibers often splay out on the walls of the nerve on the inside. So if you just come up and often you can't see them. So if you just come along and cut away part of the wall, you're probably cutting away the nerve fibers in that nerve and damaging the nerve. Or [00:52:00] some people talk about taking cautery and just burning the cover, the covering of the nerve.

So it shrinks it down by, by burning it. Well, if you're burning the wall of the nerve, cauterizing it, you are, you're potentially damaging the nerve fibers that are on the underside of that wall inside the nerve root sleeve. That to me, the best thing you can do is the least, get the fluid out of it and wrap it with a sleeve and it's permanent and just, um, let the nerve try and heal as best as your body can heal it.

Dr. Linda Bluestein: Yeah, nerves sound a lot like the pancreas, kind of what we learned in, in med school. You don't mess with the pancreas. 

Dr. Frank Feigenbaum: Well, you can't avoid messing with the tarlet, the nerves, because the tarlets are nerves. So you have to do something with them, but obviously, yes, the less you do, I have found the better.

Dr. Linda Bluestein: Yeah. Yeah. And sometimes, you know, you need a Whipple procedure too. So it's, you know, yeah, but it's, I know that makes sense that you're going to want to [00:53:00] approach it as elegantly as possible, as specifically as possible. And, um, yeah, even though it's invasive, cause it's surgery that, uh, you know, being very careful about those kinds of selections is important.

Dr. Frank Feigenbaum: And I think that's a common sense principle of mine, by the way, I don't have like, statistical data where I looked at each type of CIS treatment and with hundreds of patients and followed them for two years. You know, I can't, I don't know how to do that. Obviously, usually there's a mixture of different CIS treatments in each patient.

Most patients like have some CIS that you drain and wrap, other ones that you just wrap in the same, so I don't know how to do that study. 

Dr. Linda Bluestein: But 

Dr. Frank Feigenbaum: I think it's a common sense thing. 

Dr. Linda Bluestein: Right, right. No, that makes sense. And I do definitely want to talk about. research and publication in a minute, because that's, I think, also a very important thing.

And I think a lot of people might not realize some of the challenges in collecting data and, you know, especially for people in private practice. [00:54:00] But I want to first talk about complications, because I feel like that's kind of a, an important thing. You mentioned a couple of them already, like CSF leak, you know, re expansion of assist, or re operation for some other reason.

Um, arachniditis. I don't know if that's something that can occur, you know, post, postoperatively. Is that something that can be present preoperatively? And maybe somebody could confuse the cyst as causing the problems, but it was really arachniditis. Um, what kind of complications do you look for? 

Dr. Frank Feigenbaum: Which one of those do you want to address first?

There was like five things. 

Dr. Linda Bluestein: I know. Sorry. Um, CSF leak is probably a really important one to cover, I would think. 

Dr. Frank Feigenbaum: Spinal fluid leak is a risk of this. So all the risks typically in a. Your typical tarlot cyst case are usually less than 5%. Spinal fluid leak would be one of those. You're obviously dealing with the covering of the spinal sac and the nerves because these cysts are cysts of the covering of the spinal sac and the nerves.

And when the covering of the spinal sac and the nerves becomes distended [00:55:00] and ballooned out, that puts you at risk that that could leak after a surgery, even though you don't see anything obviously leaking when you're done with the surgery. For example, that case that I told you about where the patient had a cyst up against the spinal sac for years, you treat the cyst, the wall of the spinal sac is thinned.

It's not particularly leaking when you're doing surgery despite different maneuvers to see if it is, it's not. But when the patient goes home, they go to the commode and they do a valve salvo and bear down and that really stretches the spinal sac and it pops and you can get a leak. That would be a situation, but, uh, thankfully it's not very common, at least in my hands, when you do get one, the majority of the time.

You pick it up while you're still in the hospital or here in town, usually while you're still in the hospital. And then we keep people in town for a few days just to make sure everything's going well and the wound's healing well. Before they go home, they get on a plane and go home and so [00:56:00] forth or drive.

And during that time, you pick up the vast majority of most complications, including spinal fluid leak. And is it possible to go home and then have a problem and have to come back? Yes, it would just kind of be an unusual, but if you do find it, typically you go back and see what's leaking and you fix it.

Dr. Linda Bluestein: And you already mentioned that you have not had a cyst re expand, the exact same cyst. So we kind of already covered that one. What about arachniditis? 

Dr. Frank Feigenbaum: Arachniditis is Um, uh, uh, uh, a pathology where the nerves, the nerve roots that are in the spinal sac stick together, the fibers, and it usually is the result of an insult to the nerve fascicles or fibers that are inside the spinal sac.

You can get it, um, people who've had meningitis or, or an infection and flames, all the fibers and nerve fibers, and they stick together. [00:57:00] where they get pus inside their spinal fluid and it makes all the nerves stick together, or people who've had a hemorrhage in their brain and the blood goes into the spinal fluid and it settles down there into their spinal sac and that makes all the nerves stick together.

Um, also you can get it from having had a surgery like on the spinal sac or in the vicinity of spinal sac that was complicated by some problem like some people have a lumbar decompression or a discectomy and the inadvertently there's a spinal fluid leak and maybe they get an infection and they have to have multiple surgeries and the nerves all in the spinal sac all clumped together.

Now I'm talking about the nerve fibers in the spinal sac before they exit. Um, when, when, um, when that happens, you can get symptoms related to all those nerves kind of sticking together. There's not, there's very few people that have a technique for [00:58:00] treating that. That's other, that's a whole other, uh, subspecialty is few.

It's a very difficult problem. We don't have a good treatment for it. It really is kind of a category of chronic nerve injury, but there are certain people that, uh, do work on that. The, the, the problem that I see with the term arachnoiditis as it relates to treating tarlopsis is that it gets applied to patients who've had a sacral tarlopsis surgery and that surgery had nothing to do with the spinal sac.

Because when you're treating a Tarlov cyst, you're treating the nerves that have exited the spinal sac. You're not doing anything inside to insult the nerves that are in the spinal sac. And, um, I feel like there's some practitioners out there that when a patient has some symptoms after they had a sacral cyst surgery, they say, Oh, this must be because of arachnoiditis.

But the reality is that that patient has these nerves that were pressed [00:59:00] on and injured. by the Tarlav, by the Tarlav cysts. And just because you have a surgery doesn't mean the nerves are suddenly happy and healed. And, um, you know, so they are reaching for explanations that they can do something about to treat And it can be difficult.

For example, if your nerves are in bad shape to begin with, you know, you have a surgery to treat the cyst, but the nerves are injured and you may have chronic nerve injury symptoms. Some symptoms may get better all the way. Some symptoms may get, um, partially better. Some symptoms may not get better. Maybe your body isn't able to heal some of the nerves.

They were just so injured that your body couldn't heal them. So after a surgery, if you have sacral symptoms, After a tarlof's surgery, do you still have some sacral symptoms because of mysterious arachnoiditis that you really can't see on the MRI? Or is it [01:00:00] because your nerves were injured by being pressed on and you're either in the process of healing the nerves or your body just wasn't able to get all the way to heal the nerves completely?

I think that the day that someone figures out how to heal somebody else's nerves for them and we can, you know, squirt some stuff on there that When we finished treating the cysts and then you put some stuff on and the patient, all the patient's symptoms go away after surgery. I think this diagnosis of arachnoiditis after Tarlov cyst surgery is going to go way down, if that makes any sense.

Dr. Linda Bluestein: So 

Dr. Frank Feigenbaum: I think it gets over applied to patients who had Tarlov cyst surgery. Because people are just looking for an explanation as to why they may have some symptoms, but the real explanation, the majority of the time is that their nerves were injured by being pressed on by the cysts, you know, and can't heal.

We don't have the technology to heal some of those nerves for them, but you know, there are, you know, I, for example, I was talking to a patient who, [01:01:00] had sacral cyst surgery, but after they had had some lumbar surgeries that were complicated with a spinal fluid leak and multiple surgeries for that, and they got diagnosed with arachnoiditis, yes, in the spinal sac higher up where they had had all these lumbar procedures, not in the Usually, when I, the vast majority of these patients that get diagnosed with this tarlet, you know, sacral surgery, arachnoiditis, when you look at the MRIs, there's absolutely no clumping of the nerves together in the spinal sac.

I have no idea. Then I'll, uh, sometimes I'll double check myself. I'll show the films to other surgeons and they, nobody can see any evidence of arachnoiditis. We don't have any idea what they're. talking about. 

Dr. Linda Bluestein: Okay. 

Dr. Frank Feigenbaum: There may be some other, there are some other specialists, again, that specialize in arachnoiditis.

Maybe they have some like. Other thing, you know, subclinical arachnoiditis or something, I don't know, something that doesn't immediately occur to me that they're working on, but there's nothing you would do more surgery for or something like that. 

Dr. Linda Bluestein: Right, [01:02:00] right, right. Um, so you mentioned earlier, and I think I implied it, if not saying it specifically, like I flew from Wisconsin to Dallas to have my surgery with you.

No, I'm sorry, you weren't in Dallas at the time, you were in Kansas City. Um, yeah, my friend Tricia was in Kansas City. I flew to Kansas City. So, but regardless, um, most people I married 

Dr. Frank Feigenbaum: a girl in Dallas, so I had to come here. She didn't want to go there, so that was it. 

Dr. Linda Bluestein: Okay, okay. Um, so 

Dr. Frank Feigenbaum: She didn't want to stay there, she wanted to be here.

Dr. Linda Bluestein: Okay, okay. So, Most of your patients, I would imagine, are coming from, from some distance. You know, you might have some that are local, but most of them are coming from a distance, which of course is difficult because even though you said, you know, you have them stay in town. And I remember I came in, saw you like the day before I, uh, left town, I came in and saw you for my like final check.

Yes, it's okay to get on a plane and go back home. But You know, of course, as you've stated about how long it takes for things to heal, you know, you're not healed at that point. You're still, you know, you're not going to stick around for a year. [01:03:00] You know, most people can't, can't do that. So obviously that's challenging for you being a surgeon who has so many patients that come from a distance.

So how do you handle that in terms of aftercare? 

Dr. Frank Feigenbaum: Well, I mean, you have to get home. So, um, some people drive, some people choose to fly. I've seen. You know, I pulled up to the hospital, and there's a big RV camper in the parking lot, and the hospital administrators. saying why, you know, coming up to me, why does your patient taking up 10 parking spots at this huge, but you know, they, people choose to come in different ways and, um, just depends on your level, the level of your symptoms and what you're most comfortable with.

Some people drive, some people fly. When you go, if you're going to, if you choose to drive, usually people to make fake frequent stops, you can lay down in the backseat and make stops and walk around and you take your pain pills and so forth. If you fly again, you, you know, take frequent walks on the plane and [01:04:00] Do the best you can.

Maybe some people get business so they can lay back. If you can do that, if you have the means. But when you get home, you take it easy. You got to get home, right? Most, as you said, most of my patients aren't from here. So they come from other places and that, um, that's just a factor, you know? 

Dr. Linda Bluestein: Right. Right.

And, and in terms of if, I guess I should have also explained what I was thinking when I was asking this question, like, you know, if someone is developing, uh, some kind of a problem or there are things are not resolving as quickly as they had hoped that. Oh, I see. That's what I'm thinking because it's tricky, of course, because, you know, the local, your PCP or, you know, even a local neurosurgeon is, is not going to be as familiar with these things as you are.

Dr. Frank Feigenbaum: Well, we, we follow patients at different time points with outcomes. outcomes instruments. We call them instruments or questionnaires that you fill out at different time points after surgery. And then we get MRIs at three, three months after surgery. We used to get MRIs at three months, six months, one year and two years, but [01:05:00] then the insurers stopped paying.

They wouldn't approve them. And MRIs at three months after surgery. So, we do, we do look at that, but, um, and, you know, we have nurses. So, if there's any question you call and, but usually, um, it's just a matter of slowly and progressively increasing your activity limitations as the nurse permit and giving them, they're being patient and giving the nurse time.

Some people are, have, you know, they're more patient than others and sometimes they need reassurance or also we, um, uh, have a letter that we give patients and they give them to their local pain doctors. And I think because some of the things you alluded to before, a lot of the doctors or primary doctors don't take these patients seriously.

They think they're just looking for pain medication and so forth. We give them a letter to say, Hey, look, this is bona fide. This patient had nerve injury. They're trying to recover from nerve injury. It's gonna, it's gonna take [01:06:00] time. Please, you know, support them and help them, you know, like that. If it, and sometimes, you know, we have to call the primary doctor or the pain doctor and say, hey, you know, Help this patient out.

They're not faking, you know, that kind of stuff. 

Dr. Linda Bluestein: Okay. And, and you, you also, uh, so I, I remember filling out those surveys and I was, my surgery was in 2011. So at that time, I'm pretty sure I did the three months, six months, which was helpful because then it was, I don't remember how many years later that I was kind of having some, you know, some other symptoms going on or some, you know, felt like some, uh, you know, new symptoms and my, got a new, MRI at that time.

And I saw a local neurosurgeon and he was able to then say, nope, looks the same as it did two years ago, or more or less the same. So it was helpful to have that baseline, you know? 

Dr. Frank Feigenbaum: Well, I mean, we all, we're all living in the moment, right? And if you have symptoms after surgery, it's, you know, You don't want to have the symptoms.

And, um, sometimes I find myself convincing patients that they're actually [01:07:00] better. Like, you know, they'll call or the nurses will call and talk to the patient and they'll say, Oh, I still have the same symptoms. My symptoms are horrible. And the, you know, when you look back at the, the questionnaires and the things that they gave before surgery, you say, well, Oh, well, okay.

You know, uh, Do you still have the bladder symptoms that you had? Well, no, no, I don't have that anymore. Do you still have the bowel symptoms? No, I don't have that anymore. Do you still have the pain in the private area? No, I don't. Is your numb? Do you still have numb? No, I don't have that. So, um, that's just our nature.

You know, you're, you want whatever's bothering you to go just to go away. But, um, sometimes it's hard again, cause you're waiting. You're in this time period and you're trying to see if your nerves. Your body can heal the nurse if it can. That can be frustrating. 

Dr. Linda Bluestein: Yeah, I tell people all the time to focus on small gains because sometimes, you know, I'm not doing surgery, but I do comprehensive prescribed, comprehensive treatment plans for patients.

And so sometimes it's, you know, very [01:08:00] slow progress and, and you're right. Sometimes people don't realize. Because, because I think, you know, maybe we also don't want to remember how poorly we were doing in the past. So sometimes I think it's easy to miss those, those kinds of things. 

Dr. Frank Feigenbaum: You know, usually, as I said, some symptoms are, some, some relief of some symptoms.

Sometimes it's immediate. Mm-Hmm. , you know, you just got the pressure off the nerves and they're happy about that. Mm-Hmm. . But it's usually a mixed picture. Like as I said, some things are better right away. Some things might take weeks or months or sometimes even years. People are talking about improvements that they're still getting.

Dr. Linda Bluestein: Mm-Hmm. . 

Dr. Frank Feigenbaum: And I think that. That's something that you don't have to be trained. We all, anybody listening, you, me, everybody understands that nerve healing is slow until the day somebody figures out how to heal your nerves, but there has to be a starting point. You know, you, you got to get the pressure off the nerves to set up a sit.

I'm kind of a subcontractor to the body. I'm just, I'm getting the pressure off the nerves to give the body a chance to heal. [01:09:00] That's my job. 

Dr. Linda Bluestein: Okay. Yeah, and, and, um, real briefly before we wrap up, um, the Feigenbaum Neurosurgery Outcomes research that you've done and, uh, results that you've published. I know that, uh, you know, public, publicate, we could talk about just the challenges of the publications probably for a whole nother hour, but, um, can you tell us just a little bit about some of the, the research that you have done and, or the results that you have published?

Dr. Frank Feigenbaum: Well, we, the first step was to try and compare apples to apples, because in all these publications that you see that have come out in the past, They're either with very small number of patients and then what I mean by apples to apples is that the the instruments or the the evaluations that they use after surgery to determine if a person has improved is totally variable and a lot of the [01:10:00] traditional Instruments or questionnaires and things that are out there aren't, they weren't developed with compression of the sacral nerves in mind.

There are more for lumbar issues. 

Dr. Linda Bluestein: There's 

Dr. Frank Feigenbaum: this thing called the SF 36, and then there's the, uh, visual analog score and the Oswestry disability. And these, none of these tests looks at our measures before and after surgery. The differences in the typical symptoms of something with somebody with sacral tarlopsis, bladder function, bowel function, sexual symptoms, the PGAD you described, sacral pain as opposed to lower back pain, all those things.

So, the first step in kind of the, um, publication in the most recent years has been to develop an instrument or a questionnaire that's specifically for patients with sacral tarlopsis. So, that was the, kind of the first step, uh, in the recent years, [01:11:00] publication to develop tarlopsis. something that's been, um, uh, a, uh, validated.

It's called statistic. You have to statistically validate a particular questionnaire so that, um, you can then use that questionnaire reliably and expect reliable information. So we did that. And, um, um, then we, uh, more recently published a paper with one year outcomes after treating sacral tarlopsis. And now more currently, we're working on a two year outcomes paper, does that answer your question?

Dr. Linda Bluestein: Yes. That's, that's great. That's great. Um, and then I like to finish every episode with a hypermobility hack. Now, obviously I know you're a neurosurgeon who specializes in tardal cyst surgery, but if you have something that you're like a, like a quick win or a tip that you, um, think that patients in general would be.

Would be able to gain something [01:12:00] from, I would love to hear what you have in mind. 

Dr. Frank Feigenbaum: Well, if you're having this, this constellation of symptoms, and nobody finds an explanation for it, and you get an MRI and it shows these cysts, I mean, Don't just give up. I mean, I think that if the person telling you that those cysts never caused symptoms had symptoms in their private areas, they might be thinking differently.

So continue to pursue, and there's tests you can do to prove whether the cyst is symptomatic or not. At least you have some objective information. Don't just have, It's, don't just go to people who are guessing. 

Dr. Linda Bluestein: Yeah, it's, it's, it's also really, um, mind boggling that I, I see, I'll see reports and the radiologist might comment that there was a tarlov cyst, but they don't comment on the number, the size, the location.

What's up with that? Like, I don't know. 

Dr. Frank Feigenbaum: Because we were never taught the typical symptoms of something compressing the lower sacral nerves, or at least Emphasis was not put on it. [01:13:00] Most of the emphasis in spinal surgery training is on issues in the lumbar spine, the lower lumbar spine, you know, the spine, the neck, the middle, like the lumbar spine, not the lower sacral nerve.

And so, you know, the vast majority of spine doctor couldn't list off all the exact symptoms of. And they don't have a way to treat the cysts or have been told just to leave them alone. So you would just distance yourself from whatever that is. And unfortunately, that leaves a large group of people who are very symptomatic, um, being kind of pawned off to sent to pain clinic or to physical therapy or something that, you know, um, those practitioners and those.

arenas, like, find it incredibly frustrating as a pain doctor trying to take care of a patient who's got sacral nerve recompression from a tarlopsis. You just have nothing. You can try all your typical shots and pills, but you still got the cysts sitting there pressing on the sacral nerves. It's a mechanical issue, so it's incredibly frustrating for them.[01:14:00] 

Dr. Linda Bluestein: Yeah, I mean, I remember when I was in physical therapy before my, before my surgery and you know, I was walking at like one mile an hour and you know, that's mind boggling to me now because I, you know, I mean, I sit sitting, I've been sitting all day. So, you know, sitting is something that is still not like my favorite thing to do, but I go for hikes and I mean, I can hike.

you know, inclines and do all kinds of things that I could never do before. So, um, it's, yeah, it's fascinating to me to see those reports and see that they're not commenting on, uh, 

Dr. Frank Feigenbaum: Emphasis is not put on TARLOFSIS yet. It's starting, the battleship's starting to turn. There's more publications coming out on the topic.

It's recognized now by the Centers for CME and CDC. So, um, I think that before too long in the next couple decades, it'll be something that's more recognized, more taught in medical school and residency. And, um, more patients [01:15:00] will get help. Hopefully. 

Dr. Linda Bluestein: Um, I just want to thank you so much for, for chatting with me today.

I know that you're super, super busy. Um, before we, we sign off, um, can you let us know where we can find, find you? 

Dr. Frank Feigenbaum: Oh, well, um, you can just, uh, call our office here in Dallas, um, Neurosurgery and then, or you can just Google it, uh, and you'll see the information on the website and then the staff will help you and you can get your information.

And your imaging studies in this kind of a. Process that you go through and then we can have a consultation. Do you have, do you have a website? Yeah, that's what I was talking about. Uh, uh, I think it's, uh, Frank Feigenbaum. com. I could be wrong. 

Dr. Linda Bluestein: I think it is too. I'm looking at it on the screens. 

Dr. Frank Feigenbaum: I'm afraid I'll say something wrong that I'll get in trouble with my staff about.

Dr. Linda Bluestein: Yeah, that's, that's okay. That, that, that was shared with us, but I was trying to, uh, you know, yeah. And last name spelled F E I G E N B A U M. 

Dr. Frank Feigenbaum: Yeah, 

Dr. Linda Bluestein: it's German. Okay. Okay. Like [01:16:00] Bluestine. Right. Right. Oh my gosh. Well, well, thank you so much again. This was so great to see you after so many years. Yeah. Glad you're doing 

Dr. Frank Feigenbaum: well.

Dr. Linda Bluestein: Yeah. No, I'm doing great. Uh, doing really, really well. So, um, I just want to thank you for, for being my doctor and for doing It was no 

Dr. Frank Feigenbaum: pressure operating on another doctor, but you know, by the way, no pressure there. 

Dr. Linda Bluestein: Right, right. None whatsoever. When I came in with my, uh, anesthesia, my, you know, other anesthesiologist friend and the two of us were just like, yeah.

So, uh, she's, she's so sweet. She's amazing. When I found out that you were located in Kansas city, I immediately called her up and I was like, Hey, can you do a little background research, uh, before I even, and I stayed with her actually, I stayed at her house and yeah, so that was all like amazing. 

Dr. Frank Feigenbaum: So. Well, it's good to have help.

Yeah. No question. 

Dr. Linda Bluestein: Oh, huge, huge. Yeah. It was really, really fabulous. So, well, thank you so very much again and, uh, I just hope that you found this a helpful way to [01:17:00] share some information because I know neurosurgeons are usually so crazy busy and don't take the time to come on a podcast. So I just am really grateful to you for doing that.

Dr. Frank Feigenbaum: No, my pleasure. My staff were militant about this happening. So maybe you should thank them. Yeah. 

Dr. Linda Bluestein: I started bugging Debbie for about this quite a while ago. I've been doing a podcast now for four years and I think I started bugging her a couple of years ago, but, but we got it done. So that's all that matters.

Great. 

Dr. Frank Feigenbaum: All right. Nice talking to you. 

Dr. Linda Bluestein: Nice talking to you too.

Well, it was so great to see Dr. Feigenbaum again after so many years. Let's see, it's been 13 years since I had my surgery. So really great to chat with him and I hope you found this interview, informative and educational. And I just want to thank you so much for listening to this week's episode of the Bendy Bodies with the Hypermobility MD podcast.

You can help us spread the word about joint hypermobility and related conditions by leaving a review and sharing the podcast. This really [01:18:00] helps raise awareness about these complex and very misunderstood conditions. You can find me, Dr. Linda Bluestein on Instagram, Facebook, TikTok, Twitter or LinkedIn at hypermobility md.

If you would like to dig deeper, you can schedule a one-on-one session with me and learn more@hypermobilitymd.com. You can find human content, my producing team at Human Content Pods on TikTok and Instagram. You can also find full video episodes of every week on YouTube at Bendy Bodies Podcast to learn about the Bendy Bodies program disclaimer and ethics policy.

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