Signs of Tethered Cord You Shouldn’t Ignore with Dr. Petra Klinge (Ep 137)

Dr. Petra Klinge: [00:00:00] And my philosophy, I would think you should give one surgery, you know, the chance to declare its own outcome. So I'm just worried if both are done, it's too much stress on both ends of the spine. And then you don't really know what had done what. Welcome

Dr. Linda Bluestein: back, every bendy body to the bendy bodies podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility MD. Today we'll be talking with Dr. Petra Klinge about tethered cord syndrome. Tethered cord syndrome affects so many people with EDS, especially people with hypermobile EDS, so this is going to be a really important conversation.

Dr. Klinge is a neurosurgeon with expertise in tethered cord syndrome, Chiari malformation, and related CSF [00:01:00] disorders. Her research has focused on the failure of myodural bridges and defunct collagen that supports the aspects of CSF circulatory failure at the base of the skull. She has published on a novel concept of a spinal cord motion disorder that might explain and support occult neurosurgical pathologies associated with impaired CSF in cur malformation and occult tethering of the spinal cord and brainstem.

Dr. Klinge has pioneered the pathophysiology and diagnosis of occult tethered cord, including clinical biomarkers for surgical intervention and tethered cord syndromes. I'm so excited about this conversation today because a cult tethered cord, meaning that you cannot see it on imaging, is something that is really, really challenging.

A lot of patients who are experiencing tethered cord type symptoms, they go in to get an evaluation, they get an MRI, and when the MRI is quote, unremarkable. People think, oh, they clearly don't have tethered cord syndrome. But as Dr. Klinge is going to tell us, there's a lot of people who have occult [00:02:00] tethered cord syndrome.

So they have the symptoms of tethered cord and they'll benefit from having surgery on their tethered cord, but you can't see evidence on the imaging. As always, this information is for educational purposes only, and it's not a substitute for personalized medical advice. Stick around until the very end, so you don't miss any of our special hypermobility hacks.

Here we go.

Well, I'm so excited to speak with Dr. Klinge today and probably you don't remember, but we met in 2018 after you gave a presentation at the EDS Society Conference in Baltimore, but I haven't seen you since then. So 

Dr. Petra Klinge: yeah, time goes by, right? Yeah. 

Dr. Linda Bluestein: Yeah. 

Dr. Petra Klinge: Well, um, uh, it would be great to see each other again sometime soon.

Um, uh, that would be lovely. 

Dr. Linda Bluestein: Yes, absolutely. I'm so, so happy that you're here. We have so many questions that people have about tethered cord and your work specifically, and you've done such great research in this space. So I'm really, really happy [00:03:00] that we were able to make this happen. So thank you so much.

So can you start out by telling us how you became interested in occult tethered cord and Ehlers Danlos syndromes? 

Dr. Petra Klinge: Yes. So, um, I have to say it's, um, it's, uh, my first experience with a cold tethered cord, um, uh, uh, came from a pediatric experience. So, um, I came to the United States and to work here at Rhode Island Hospital in 2009.

And, um, around 2010, um, I was more and more involved in the pediatric hospital in Hasbro here. And then, um, uh, one of our GI, um, doctors contacted me about a child with unexplained constipation and problems with bowel regulation. And then he said, He had heard about like tethered cord, or even occult tethered cord, which [00:04:00] can be the cause of some unexplained bowel and bladder issues in kids.

And believe it or not, that's the time when I was like hearing about like it might be, you know, like, um, a separate entity that is not really diagnosed with imaging, but more diagnosed clinically. So I saw that child and, uh, found out about some neurological signs in the legs. And there was also some back pain and leg pain.

Uh, the MRI did not show anything. Um, and, uh, so, uh, the GI doctor and I, we offered the family the tethered cord surgery, you know, the resection of the phylum. And, um, that kid did so great and had such a great improvement, was even catching up with growing, the back pain and leg pain went away and also the constipation.

And then how things go in life, a second event like this happens. So I saw another child and then I became really interested in, in, in occult tethered cord. [00:05:00] And I understood that this is really like an entity that needs to be taken seriously. And I read. up some of the literature that was published in the early, um, century, uh, for example, Dr.

Webby's work came to my attention, Monica Webby, who published, uh, 62 patients with tethered cord or cold tethered cord kids that had improvement in bowel and bladder function. Fast forward, I presented, um, the children that I treated on a, um, on a conference where I met Dr. Henderson. And Dr. Henderson at that time, that was 2011 or 2012, had also started to look into tethered cord and Ehlers Danlos syndromes and connective tissue disorders.

So I learned from people that were already looking into people with connective tissue disorders that the problem with the tethering of the spinal cord might also be a very relevant problem for those folks. [00:06:00] Uh, and then I said, okay, well, um, I developed some neurological criteria at the time that made me comfortable to just diagnose, you know, the triad and the neurological symptoms.

And then I started to see people with connective tissue disorders and, uh, I found some unique elements in how they present with sethachord. And of course, then when you become more comfortable in diagnosing a problem, you keep looking at it. And of course, then, um, you see the results. And the results were very favorable and very promising.

And, um, that has gotten me interested in, uh, in Occult Health at Court and EDS, and I saw more and more people, um, and diagnosed it. And, of course, my focus in medicine was always trying to explain things. Um, I was never happy just treating them. So, uh, I wanted to understand, you know, like how, what's happening here.

And that's [00:07:00] how I started to also look into, um, you know, like understanding what the problem and the mechanisms are behind that. 

Dr. Linda Bluestein: Mm hmm. Wonderful. And I should probably back up. And if you could explain for those who are maybe thinking, Oh, this sounds really interesting, but I'm not sure what tethered cord is much less occult tethered cord, um, if we could back up and for those that don't, maybe are not familiar with this topic, if you could explain what that is.

Sure. 

Dr. Petra Klinge: So tethered cord, uh, itself is a, um, in the broader spectrum, a problem where. The spinal cord is unphysiologically under tension or stress and strain, uh, to anything that abnormally, you know, fixates the spinal cord in the spinal canal. That could be many things, but the most. common problem of tethered cord, and that's the one that we are, um, you know, discussing [00:08:00] today, is the problem with our embryonic tail, um, or congenital tail.

Um, let me explain it that way. When we are embryos, we all have a little tail, a real tail, and that tail, uh, is, uh, basically the extension of our spine, and It has like spinal cord and bone and cartilage and then. It helps us grow our legs as embryos. And when we are done with growing legs, um, the tail undergoes some, what we call regression.

So it ends up, you know, like going back into the spinal canal. And then what we have is a leftover tail from that embryonic time. And it was one spinal cord, but it's now like some leftover spinal cord. And that tail actually connects our, you know, mature spinal cord with a tailbone. So it's a leftover embryonic spinal cord.[00:09:00] 

And, um, a lot of things can go wrong during that process, you know, where that tail goes into a regression. And if then the tail stays too tight or too thick, or it's just abnormally structured, it can cause, you know, pulling tension, stress and strain to the mature, you know, the adult spinal cord or the, you know, like a physiological spinal cord.

And that can cause a lot of symptoms. The stress and the strain causes blood flow problem to the spinal cord. And that can cause a weakness in the legs, fatigue, pain, not only in the legs, but also in the back. And of course, ultimately also problems regulating the bowels and the bladder. So that is tethered cord.

And, um, and that's not a new problem, tethered cord has been, [00:10:00] you know, like the first reports on tethered cord and, you know, like a abnormal or tight phylum go back into the sixties. Now there are reports, you know, like from, you know, Canadian neurosurgeons, you know, like 70 years ago where they already like, uh, without even having an imaging, you know, they had.

Patients with leg symptoms, leg weakness, bladder and bowel symptoms, where they actually did explorative surgery. They opened up the spine to see what's happening here. Um, and then they found like this embryonic tail being too short or too tight or too thick. So that was pioneering surgery. So tenet cord is not new.

But what is more like, um, a pioneering or more like a, uh, a recent and in the realm of medicine, more recent thing is the understanding that it can actually, [00:11:00] you know, like really be occult, even with our met modern, you know, ways to image the spinal cord, uh, and the spine, of course. in the, when MRI became available, you know, of course, then all of a sudden you could see, you know, like the, the stretched spinal cord, you could see that the tail was thickened and, and then, you know, you would say, Oh, this is tethered cord.

So imaging was eventually available. Um, And allowed us to diagnose it, but then, you know, all of a sudden a new box opened and the new box was like patient presenting with all these symptoms, which are classical tethered cord symptoms, but yet you don't see the tethered cord. in, in, in the MRI. And it was actually Jerry Oaks and his team, uh, in, uh, at the end of the last century that had then coined the term, uh, you know, like it might just be occult.

Uh, Jerry Oaks was, is a very renowned neurosurgeon, [00:12:00] uh, back then a pediatric neurosurgeon. And then we understand that it can be occult and occult means like you don't see anything in the MRI. Um, is suggestive of tethered cord, so radiographically hidden, but yet you still have it because your symptoms tell you that 

Dr. Linda Bluestein: you have it.

Okay, that's such a wonderful explanation. Thank you for that. And it sounds like you've already described a lot of the potential symptoms that people can present with. Do you find too that the presentations are quite variable as well? 

Dr. Petra Klinge: That is true. Um, when I started to, um, You know, straighten my own mind and, um, be mindful that I really understanding that the MRI is not my partner anymore, you know, MRI is not helping me, but I still didn't want to, you know, like, uh, you know, like it shouldn't be a shot in the dark.

Right? Um, if I can say it that way. So, um, what I'm trying to say is, Okay. [00:13:00] At the beginning, I had taken, you know, the classical criteria, um, that were available to find out about tethered cord, which were, um, you know, or which are still, um, you know, bladder incontinence, either frequency or urgency, um, as I said, leg, uh, pain often aches, uh, and pain that fluctuates, you know, uh, in different parts of the leg.

So it's not like a sciatica pain that goes, you know, down to the toe or to the heel. It's a pain where people say, Hmm, it's in my upper leg, but then sometimes it goes. down into my other leg. Uh, or it's fluctuates from left to right. So it's more like a nondescript pain. Uh, and definitely not a dermatome, like not a certain area every day.

It's different areas. So variation. And then [00:14:00] of course, lower back pain of achy nature. So, but then when I, So people with this type of presentation, they were explaining to me all other sets of symptoms like shoulder pain, um, numbness, tingling, like lose of penmanship, um, often like problems with the grip or like problems opening a jar.

And, uh, patients also had like pulling sensation in the neck and then sometimes also chest tightness. They felt like they are in a tight onesie, uh, or they are, you know, like tightened up. And I said, Hmm. And then I said, well, I'm not sure how I can explain those symptoms because nothing in your. You know, uh, MRI shows that you have neck problems or thoracic spine problems.

[00:15:00] And then I learned that after surgery, after tethered cord surgery, that I was doing for the symptoms of back pain and leg pain, those symptoms went away as well. And, uh, not always though, I don't want to over deliver, but that was much to my surprise. So, uh, I learned, okay, well maybe, and I saw it again and again, you know, I had people that said, Oh, I have this low back pain.

Yeah, there was ten of cord. Um, and then neck pain had gotten better. And, um, so then I had. I understood, okay, it must be that against the classical thinking that the tail problem is only causing problems to the waist down, it might also cause problems to the waist up. 

Dr. Linda Bluestein: And 

Dr. Petra Klinge: then, of course, uh, I collected those symptoms and, um, had To understand that tethered cord can also cause, you know, like, uh, problems to the upper extremities, uh, and, uh, [00:16:00] upper spine areas.

And then it wasn't until our research that we had published in 2022, where we were understanding, you know, the stress and the strain that the phylum, You know, that little tail causes to our spinal cord is not only affecting the lower spinal cord, our biodynamic studies that we did in the Brown lab, where we were, you know, mimicking the stress and the strain that the phylum does into the body, that might actually also propagate the stress to more, you know, like, uh, Uh, further away, um, areas of the spinal cord, which explains, you know, the upper, uh, body problems.

So I understood that there is a spectrum of symptoms that can affect the entire spine. 

Dr. Linda Bluestein: Yeah, that's fascinating. So it sounds like given this complex picture of symptoms and the fact that imaging is not always helpful, making the diagnosis [00:17:00] seems like it could be quite challenging. Sometimes it's acquired, right?

And sometimes it's Congenital, right? Is that correct? So, and yes, so it seems like actually making the diagnosis is can be pretty tricky. 

Dr. Petra Klinge: Uh, yes, um, that is true. And there was a time where, um, uh, it was hard at the beginning because, uh, as you said, I was hearing like, um, a, uh, set of symptoms that were classically not attributed to tethered cord, but yet I had to take them into my account, uh, because I had to find out, you know, uh, is it, or is it not tethered cord and how would all these other symptoms speak for or against it?

Um, but what I wanted to say is, uh, uh, Then, you know, like with anything in medicine, uh, um, is we wanted to have some objective criteria, you know, certainly, um, what I, what was very [00:18:00] like, um, um, how can I say it? Comforting. For me as a doctor is that I heard some problems again and again, so I knew there is something unique to tethered cord that I can trust, you know, for example, pulling sensation, shoulder pain, tightness in the chest.

So. I believed, you know, that certain reporting that I got from people, you know, can be tethered cord and most likely is tethered cord. So I got comfort in listening to people and understanding what they're dealing with. And there was like some, you know, like common element to it. But of course, to your point, um, is then of course, I was Trying to see is there anything like objective that the doctor, that that the doctor finds in the exam, you know, of course, as you know, classically people were [00:19:00] relying on the bladder study, you know, the Eurodynamic study, and we can talk about it a little bit where you wanted to see you'd like.

a neuro neurological dysfunction of the bladder. But, um, I learned that this is not always helpful. I had kids and adults where they had all the symptoms, but the bladder study was not showing me a neurological problem. And I said, well, I'm not going to walk away from that person, you know? So all of a sudden, you know, I had this patient with the classical you know, like symptoms, but the Blader study was not helpful.

The Blader study did not show me the neurological problem that, that I needed to see as like a supporting criteria or supporting diagnostic tests. So then I said, okay, it might be that something in the neurological exam is you know, like telling me if there's a problem with tethering of the spinal cord.[00:20:00] 

And then I was focusing on the neurological exam. And, um, I was thinking it, what would it be in the neurological exam that is indicative of spinal cord stress and strain? And of course, it would be, you know, like a motor neuron dysfunction because the motor neurons. you know, they, they are the ones that, you know, like travel through our spinal cord.

So I was looking at like specificity, uh, like increased tone and tightness in the legs, clonus maybe, which, you know, is a sign of, you know, like, um, stress and strain, you know, like of the cord, like an upper, you know, like motor neuron dysfunction or a long tract sign. Basically, you know, like. signs of spinal cord stretch and clonus or increased tone in the legs, hyperreflexia in the lower extremities, and this was right on it.

I was able [00:21:00] to find these criteria in the patient that most classically presented with the signs and the symptoms. And, um, uh, and then I saw that these findings are actually also very important diagnostic criteria to support tethered cord and also to predict the success of shunt surgery. And that was the paper that we published, uh, actually last year after many years in the making.

It took us like probably 10 years to like acquire robust evidence for that neurological criteria. Finding and those neurological criteria and, um, uh, we also found that this exam adds like three points, uh, to like a scale. We developed that, um. Implements the patient reported symptoms and the diagnostic finding on the neurological exam and that is, um, uh, also able to predict the success of the surgery.

So, basically. In the meantime, I would [00:22:00] say we have our objective diagnostic criteria that help us to more, um, to establish the, not only the surgical candidacy, but also the diagnosis with more confidence. 

Dr. Linda Bluestein: Which is so important. If you're doing surgery, you want to know with the best degree that you can if the surgery is likely to be successful.

So that's really an important study. Yeah. Yeah. 

Dr. Petra Klinge: And the scale still needs to be refined. As you might know, Dr. Bluestein, this is an open access publication, so, um, everyone can read it and it shows, you know, the criteria and the 15 items that we developed as like, um, a diagnostic marker or biomarker for this test of court syndrome and also for establishing the diagnosis.

diagnosis and the surgical indication. It is, it's still in the, you know, um, you know, like in the, uh, it's baby steps and it's still like the first [00:23:00] attempt, you know, to validate, uh, this syndrome. It's a long way to go. That scale has to be refined. And I would not say that this is, you know, you know, um, all like straightened out or something that we should, um, uh, uh, You know, like, uh, take as a completed work, it's work in progress, but this is the first attempt to really, like, um, put, um, some diagnostic criteria that are reliable, uh, in this regard.

And we will definitely link that in the show notes so people 

Dr. Linda Bluestein: can find that paper easily. Cause that's very, like, send you the link afterwards in the email. Yeah. Cause that's really important. So thank you for that. And people who have. The one of the Ehlers Danlos syndromes, or if they have mass cell activation syndrome or dysautonomia, uh, why are they, which, which populations are at increased risk of having tethered cord syndrome and why would that be?

So, yeah, any connective tissue disorder, [00:24:00] but, you know, maybe more specifically EDS, why people with those conditions? And I don't know if it would apply for HSD also or not, but are you seeing those comorbidities more commonly in your tethered cord patients? And if so, why do you think that is? 

Dr. Petra Klinge: Yeah, so, of course, you know, like, uh, based on our findings, and it is likely that people with hypermobile ADS are at higher risk of developing tethered cord syndrome.

And, um, It might also be like, uh, it might be also acquired here. Uh, I have to assume that based on our findings and I will, um, um, comment on those in a little bit, there's also an acquired component in people with hypermobile EDS and not necessarily a congenital component of a tethered cord because, uh, it is probably the connective tissue, um, or the collagen [00:25:00] problem itself.

Um, uh, so, um, what we found when we looked at the histology of the phylum, so when you, so let me go, let me track back a little bit. When you do the surgery, you usually like resect a piece of that phylum, you know, AKA embryonic tail. Um, and we always, um, examine this. piece of the specimen histologically. So it dawned on me, um, that I should also look at the collagen, uh, in the phylum.

And, uh, so we started to look at the collagen integrity because the phylum is a tissue that consists of collagen and that's been described, you know, in old pathological and anatomical studies. And I said, why should I not look at the collagen? So here I have a patient population that have a collagen dysfunction, they all have, or [00:26:00] most of them, or many of them present with several court symptoms.

So let's look at the collagen. So then, um, in 2014, 2015, I, uh, started to do, uh, electron microscopy studies. And we looked at the collagen and did find the same collagen. abnormality that you actually found in skin biopsies in people with classical or, you know, hypermobile EDS or other forms of EDS. And the collagen had the same abnormality, the disintegration of the collagen structure, abnormal shaped fibrils, um, you know, disintegrated chopped up collagen, uh, spiraled collagen.

I don't have to repeat those findings. And, um, these collagen abnormalities were mainly found in people with hypermobile EDS and not in the patients that did not have EDS. So that was [00:27:00] specifically or more or less specifically a finding in people with hypermobile EDS. So, uh, basically the collagen dysfunction that You deal with when you have hypermobility as is also happening in your phylum, and that might makes the phylum relatively stiff and less elastic, and that's why there is a higher prevalence or a risk you having tethered cord, um, symptoms Because you have high hyper, uh, hypermobile, EDS and your collagen dysfunction also, you know, uh, um, is happening in your, uh, file.

That is, that is one reason why people with hypermobile EDS or with connective tissue disorder are at risk of having, you know, court because the file is. dysfunctional based on the collagen deficiency. And I believe or would explain it that if you are hyper mobile, you have more range of [00:28:00] motion in your spine.

And that's also been described in some studies that, uh, and then if you have a relatively stiff phylum, it doesn't matter, you know, like even if the phylum is not. You know, like that stuff, but the phylo might just too much for your hypermobile spine to even be there. What I'm basically saying that sounds like very, uh, uh, pioneering, but you might.

Just having a phylum with a hypermobile spine might be too much because the phylum just being there as an anchor might anchor your spinal cord too much because your spine is relatively too hypermobile. So it might mainly The hypermobility might be the problem that makes you having a phylum, uh, you know, like, uh, being a problem, if that makes sense.

Dr. Linda Bluestein: So, so it's like a mismatch between the amount of motion in the actual spine and the amount of motion in the [00:29:00] spinal cord, which is bathing in CSF. Cerebrospinal fluid. Is that what, am I hearing you correctly about that? Exactly. You just put it in better words. Thank you. Okay. Well, I wanted to make sure I understood that.

So, okay. Okay. That's fascinating. Fascinating. And you've also done studies on mast cells in the phylum as well, correct? 

Dr. Petra Klinge: Yes. Uh, and, um, I'm just want to give the person, um, uh, that encouraged me to do. So the right credits, it was basically, uh, um, uh, Dr. Maitland, um, and, uh, also Dr. Chopra, uh, uh, who, uh, The End.

thought that because neuroinflammation is also a problem in people with connective tissue disorders. And Dr. Maitland had always, you know, been concerned that, you know, like mast cells and other, uh, inflammatory, uh, cells, um, affect the nervous system and, uh, the, um, uh, [00:30:00] spinal cord system. So they asked me to, So this is a specimen that we have, right?

And the phylum is, as I told earlier, embryonic spinal cord. So Dr. Maitland asked me, can you see whether you find inflammatory cells in the phylum? And, uh, particularly mast cells, because that would be, uh, Indicator that really like inflammatory processes in the nervous system are truly happening. So, uh, that's what we started to, and we looked at the mast cells, we stained them.

There's a certain immunostaining for activated mast cells. These are the mast cells that actually also cause trouble in mast cell activation disorder. So I learned a lot. And um, yes. And we did find. Those mast cells, not always, not with everyone, and I did not see if your next question is that if you found a correlation with mast cell disorder, um, uh, not [00:31:00] really, I had people that had like a significant mast cell disorder, uh, And I did not see a mast cell in the phylum.

Um, and then people, uh, had no, at least no known or established diagnosis of mast cell disorder. And then I found a lot of mast cells in the phylum. So I haven't been able to establish a correlation here, but yes, in people with hypermobile EDS and with EDS, there was a higher prevalence of mast cells and inflammatory cells in the phylum indicating that, um, Either it is, you know, a sign of neuroinflammation that is also reflecting in the phylum, or it is truly a separate thing, you know, from the over mechanical stress and strain that You know, happens in that challenged phylum, you know, it might also be a secondary problem in the phylum that that inflammation is just a [00:32:00] sign of the mechanical overuse of the phylum.

Uh, and, uh, like a tendon, you know, like a elbow tendon, eventually from mechanical overuse becomes inflamed, right? And if you go into the tendon literature, like mechanically overused tendons do have inflammatory cells. So we have. We came up with the concept of, you know, the phylum could just be the tendon of the spinal cord because it's an anchoring ligament, you know, it anchors the spinal cord to the tailbone.

It's like a tendon because a tendon anchors the muscle to the joint, right? So, we try to You know really look into other areas. We were trying to get knowledge from other fields, you know, because there's nothing we had we had nothing Yeah, uh to understand this so I went into tendon literature I almost you know, like I turned around all the orthopedic literature on tendon Disruption, tendon failure and learned a lot.

[00:33:00] And, and the phylum did show, you know, like not only the abnormal collagen, but also, um, the inflammation and calcification. Even 

Dr. Linda Bluestein: we find, 

Dr. Petra Klinge: we found calcification of the phylum more in adults, not so in kids and here you can make the point. Okay. The adult has suffered longer from tethered cord. And, uh, eventually, you know, like if there's inflammation, inflammation, Along with inflammation goes calcium buildup and so the calcium in the phylum is also a sign of mechanical overuse.

So that is also validating, you know, pathology showing that, um, there might really be in not only a congenital problem with the tether cord, the calcium buildup is definitely not anything that you were born with, you know, calcium buildup is acquired. So when I saw all this calcium, Deposits in the phylum.

I had More or less the proof, there's got to be like an acquired component here that, that [00:34:00] proves that the overuse of the phylum, you know, due to using it, uh, in, in, in term, while you are bending and twisting and doing, living your life is, um, is a sign of acquired or secondary tethering that happens with, with probably hypermobility or other overuses of the spine.

Dr. Linda Bluestein: That is really fascinating and I've never thought of the phylum as being like a, like a tendon before, but that's super, super interesting. Um, we are going to take a quick break and when we come back, we're going to talk more specifically about surgery for tethered cord syndrome and what treatment options are.

So we'll be right back.

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So, we're back with Dr. Klinge and having a great conversation about tethered cord syndrome and I'm so curious to ask, based on what you were just saying about calcium buildup, what about adhesive arachnoiditis or arachnoiditis? Is that, when you're talking about the calcium buildup, is that, is that separate?

Is that somehow related? It is a 

Dr. Petra Klinge: very Good question. [00:36:00] Um, sometimes in tethered cord surgery, when we are exposing the phylum, sometimes we do see arachnoid 

Dr. Linda Bluestein: adhesions, 

Dr. Petra Klinge: um, around the nerves. Uh, I'm talking about arachnoid adhesions. Let me table the arachnoiditis or adhesive arachnoiditis for now, um, associate with the phylum, uh, and more that I would expect.

Uh, so, uh, I came to the conclusion that it is probably also, um, a consequence of the tethering due to the inflammatory processes that can happen in the phylum, along with the calcium buildup, that also the arachnoid becomes inflamed, secondary to the inflammatory processes that are going on in the phylum.

And we see that not only in adults, but sometimes also in children. Uh, and, um, [00:37:00] I still wouldn't call it adhesive arachnoiditis, but it might be, you know, that eventually untreated tethered cord can cause, you know, also inflammatory processes in the arachnoid and. That might lead eventually to adhesive arachnoiditis that I, that we don't know for sure.

I would say in all honesty, all I can say for now that surgical findings of arachnoid adhesions and arachnoid thickening more often than not in tethered cord surgery are very highly suspicious of inflammatory process that are associated with the tethering due to inflammatory processes 

Dr. Linda Bluestein: there. And are there options for treatment for tethered cord syndrome besides surgery?

Dr. Petra Klinge: Yes, some of them, uh, are more established and some of them are less established and some of them are still up, uh, you know, the jury is still out there. Um, of course we always felt that [00:38:00] physical therapy can help, um, a great deal. Um, uh, there are certain needs. specific, you know, elements in physical therapy where you can release, you know, like, um, tension in the paraspinous ligaments, uh, manual therapy or, you know, or craniosacral therapy where you can, you know, uh, help spinal fluid, you know, like, uh, movements and you can relax the dura.

Uh, so those certainly can also relax, you know, any tension or stress and strain on the neural elements within the spine. And here I think physical therapists with specific knowledge can do help a lot. Of course, sometimes it's slowing down the process, but sometimes also it can help with a lot of, um, uh, improvement.

The, um, other. Things that are out there now, and, uh, I'd [00:39:00] like to mention them to pay credit to the providers that offer that treatment, but I don't know yet, uh, whether this would eventually, you know, like really modify the tethered cord symptoms are like microcurrent therapy or shockwave therapy, as you know, these are treatments that try to release, you know, like, scars or release tension in ligaments.

Uh, we still have, you know, to get more evidence on those treatments, but those might also be treatments, um, that are, you know, like either helping after the surgery or might be also be something that you can probably do before surgery in order to see if this releasing or if this alleviating some of the tension, but this is, that we are looking into right now.

And, um, uh, uh, but I don't [00:40:00] know yet, you know, if this is, uh, like a true, viable alternative to the surgical intervention. 

Dr. Linda Bluestein: Yeah, no, that makes, that makes a lot of sense. And when it comes to some of those things, probably the risks are pretty low. So it's worth trying to see if there is any benefit because, you know, of course, surgery is a big.

is a big deal, right? So it's, you know, if you can try something that's pretty low risk, it might be worthwhile, whereas something that's more risky might not be a good idea. So until we have a lot more evidence for that particular thing. 

Dr. Petra Klinge: Yeah, that is true. The one thing, of course, I have to say as a surgeon, if you don't mind is, of course, if symptoms are progressing quickly, Uh, of course, then, um, you cause, of course, worry about like, uh, because sometimes, even though tethered cord usually is a very, uh, you know, slow progressing, you know, uh, uh, problem, but every once in a while you see people within six months or three months showing [00:41:00] rapid decline.

Of course, then probably you should seriously be looking into surgic intervention, but of course, people that had. said that are more lingering or slowly progressing, and we have the luxury to, to, to monitor, you know, um, then it's certainly worthwhile to try these techniques to see whether, you know, there is like something that can, uh, you know, improve you.

Absolutely. And, uh, particularly those people where, uh, even from a surgical perspective where we would say, Hey, um, you are not that symptomatic right now, uh, or you're not that, that, that quickly progressing. You are somehow still managing your symptoms. Why don't we wait another six months to see how you're doing and get more evidence whether you are truly progressing?

And then, of course, then surgery is a reasonable option, if that makes sense. 

Dr. Linda Bluestein: Yeah, no, that totally makes sense. And that's an extremely important point. So thank you for Uh, stressing that because, yeah, [00:42:00] definitely I can. I know of patients in my own practice where things seem to be kind of smoldering along for quite a while.

And like you said, other people where things are accelerating pretty quickly. So that's a really, really important distinction. And speaking of things that can accelerate fairly quickly, a lot of people who are hyper mobile throughout their spine and have tethered cord seem like they might also have cranial cervical instability.

And in terms of the sequence of what surgery to do first or how they might impact each other, what are your thoughts about somebody who has cranial cervical instability or upper cervical instability and tethered cord? I know there's probably different philosophies in terms of which surgery should be done first or how.

one surgery might impact the outcome of the other. Um, but what are your thoughts on that? 

Dr. Petra Klinge: Yeah, that is certainly like a very important questions. Uh, no doubt, but also the most difficult, um, uh, or one of the most difficult questions, [00:43:00] um, because, um, it's, it's, it has yet to be determined, uh, what, uh, the sequence is here.

Uh, so let me give you my thoughts. Um, Uh, if it's again, the symptoms, um, if, um, if the symptoms, uh, in the lower extremities or the tethered cord symptoms, let's say this are highly relevant, um, for the person and affecting the quality of life, um, as you know, in a very relevant way, I would favor. Even though they are also craniosurficial instability symptoms, I understand.

So we're talking about the person that has both. But if the tethered cord symptoms are relevant enough for, um, for the person to say it's affecting the quality of life, I would suggest that the tethered cord release, uh, uh, should be prioritized over the fusion [00:44:00] because there is a certain, you know, chance, uh, that, um, maybe due to improved, you know, like, uh, biodynamic stability in the spine with improved paraspinal muscle strength that eventually the phylum release should give your muscles.

so much. That you would also have some benefit for your upper spine dynamics and you might actually stop also the progression of the craniosurficient instability. Um, but that is only if you know, like you tell the court symptoms are relevant enough or relevant enough in, in terms of how they affect your quality of life and your quality of wellbeing and function.

Um, I would say, um. It certainly for now is a 50 50, you know, people say, Oh, yay, you know, uh, you're treating my craniosurgic instability as well. I would say, let's not get too excited about it. I'm just saying, you know, I would favor to tell court and then we can always see if you, you know, if, if you really need, uh, instability, but of course, a person, [00:45:00] uh, that has, Threatening symptoms from, you know, the cranial cervical instability that side, let's say swallowing problems, you know, a lot of cranial nerve deficits are significant, you know, like instability with a neck collar, not being able to sustain any activity without it.

Uh, I think probably, you know, like the cranial cervical problem is more relevant and the tethered cord might even make it worse because we are disturbing, like, uh, certain balance in the spine. So it's a very tricky answer because it's so unique. So I do it. I do it. Basically, I, I make the decision on the individual basis.

Um, but I always say, um, that tether cord release, you know, at least, you know, improves the, um, anchoring of the spine and improves the, the function of the paraspinous muscles. And that Should be [00:46:00] beneficial for the dynamics of the spine. So I'm always hoping that it will also help you like stabilizing other parts of the spine.

Um, but on the bottom line, unfortunately, we have not worked out a certain pathway. Uh, where we have a yes or no. Uh, decision tree, uh, to, to, to favor one or the other. So it's unfortunately still a big problem. And the problem is also, um, then if the symptoms of craniosurgic instability progress, it affects, of course, also the outcome of your tethered cord surgery, because then it also mimics, you know, uh, a lot of, you know, lower extremity symptoms because it's then still causing stress and strain to the spinal cord.

Dr. Linda Bluestein: Yeah, it's complicated, right? Yes, that is complicated. Each person's presentation is so unique and so trying to figure that out. And isn't it true that there are some surgeons who actually have done both surgeries at the same time? I think I've, I've heard that I've never had a patient do that. [00:47:00] 

Dr. Petra Klinge: Yeah. There are occasionally, you know, like, um, uh, surgeons that entertain both, which is not unreasonable.

Um, my personal opinion, if I'm allowed to share that here, is that, um, that, um, I always, um, think that, uh, of course. This is, you know, everything is connected, uh, we know that, of course, um, when we talk about connective tissue disorders, but I also want to say that the spine is one thing, right? Right. So, tenor quad and CCI, Chiari, they are connected.

Um, but in my opinion, in my philosophy, I would think you should give one surgery, you know, the chance to declare its own outcome. So I'm just worried if both are done, it's too much stress on both ends of the spine. And then you don't really know what had done what. So I always try to convince my [00:48:00] patient, let's do one thing.

Let's do the tether cord and let's wait at least three months. Let the body adjust, see what it. does because we would never understand what was really like the tethered cord problem in your body. That is also important for future reference for future guidance. You know, if we had done both and you're not good, then we don't know.

Have we stressed your spinal cord too much? You know, have we, uh, you know, like cause too much stress, stress for the upper and lower spinal cord. So I think, uh, in my opinion, there's always one measure that should be done and you should have the option to allow to see what is the outcome of that. Because that tells you also something about your body, right?

That tells you about what was really going on. That gives you some answers. And otherwise, you know, we, we, we give away, uh, the, the, the, the answer that we can get from one intervention. Is it a good answer or bad answer, but [00:49:00] it's, it is an answer that we need. 

Dr. Linda Bluestein: Yeah, that, that makes a lot of sense to me. I think that seems like if it was, if it was me and I was, you know, being recommended to have either one or both surgeries, but I think doing one at a time seems very, very logical.

And of course there's complications, potential complications with any surgery, but especially with. these neurosurgeries that, you know, and many people who have connective tissue disorders, uh, what complication, what potential complications should people be aware of for tethered cord surgery? 

Dr. Petra Klinge: Yeah. So I think if you, and I keep saying this now, um, again and again, when I see, uh, patients, um, that, um, I think with tethered cord is Considered or should be considered as a controlled surgery, meaning that the steps are well defined, and, um, you should be able to even control, you know, like the closure of the dura and [00:50:00] minimize the risk of a CSF leak.

So, um, the, um, technique that we have applied in the past in order to avoid a spinal fluid leak is taking some fat. from underneath the skin or from the fascia during the same approach and putting that fat on the dura to seal it. After you close the dura, you put that fat on there and that is a great seal.

So I really haven't seen a CSF leak for a long time. So my message is, is you, you should be able to control the risk of a CSF leak. So in That sounds arrogant, but I would say in my, uh, you know, like, uh, practice, I'm not so worried about a CSF leak, uh, um, because you can control it with that technique. Uh, the main risk that we should be, um, worried about is, Uh, wound healing problems, particularly, you know, with, with, with a connective tissue problem, sometimes there's wound dehiscence or allergic [00:51:00] reaction to suture material, you know, so, um, wound healing problems, you know, dehiscence and, um, keloid, which, uh, can be dealt with, but it sometimes can certainly be very stressful, you know, to revise a wound.

So I would say with, um, hypermobile EDS and connective tissues or in about, you know, like 7 percent or 10 percent of people we see issues with wound healing, uh, that not always needs revision, but it can just be very inconvenient or, uh, you know, uh, a, um, rough experience, uh, and not. And then sometimes we have to revise the wound.

The one thing that, um, uh, that is, uh, under the radar, uh, is the retethering rate. Um, I have two, uh, messages here. Um, the retethering is from doing the surgery, actually, uh, because you have to open the dura and you create a little [00:52:00] scar. Even though we remove that phylum, the nerves can retether to the surgical scar.

That is the nature of the surgery. You open the dura. You open the arachnoid layer, you take the phylum out, and the nerves can re tether to the dura arachnoid layer. Um, this chance is based on our own institutional statistics, and we hopefully are able to publish that as well soon. Uh, 7% Not that I like that number, to be quite honest, and I'm happy to share my, you know, my concern with that is because you ideally want to have all complications less than 3%, but that is, of course, in the ideal world.

Um, uh, so, um, of course. Microsurgery becoming smaller and smaller with your incisions and openings of the Dura might eventually, you know, like minimize that risk, but it's still a problem because what happens is [00:53:00] that the symptoms then come back after six months or a year. Usually what I do, I do a prone MRI, because a prone MRI would show the attachment of the nerves to the surgical site, and then you have to do a second surgery, which is also a reasonable thing to do.

Uh, but of course, it's a second surgery. So to answer your question, let me say it that way. Immediate surgical complications can be well controlled. The wound healing, um, we sometimes utilize plastic surgery to help with closure. The CSF leak can be controlled with, with a graft or just being mindful that, you know, the dora needs to be closed meticulously, um, uh, and, uh, anesthesia is an hour and a half.

That is not a major thing. We, if the anesthesiologist has a protocol to protect the mast cells. So I think all the perioperative and, um, surgical things and then experienced hand, you know, and an experienced [00:54:00] team can be managed quite well. Um, what. What is the main concern is the long term, one long term is the re tethering, which I gave you some statistics and the matter around that.

Um, it can be dealt with another surgery, but of course, long term is how long are we helping people with a tethered quad surgery? Is it for two years? Is it for three years? is for five years. So we don't have the long term outcome. So what I'm basically saying, what we all have to be mindful is, you know, like, what are we expecting?

Uh, so, um, uh, if for now, as a doctor, I cannot even tell you what The tether cord surgery is going to bring you in, in 10 years, you know, or five years. I can tell you that we are looking into one year or two year outcome and, and those that improve or have benefit from surgery do improve, you know, in this time span, but we are not really looking [00:55:00] into three year outcome, four year outcome, five year outcome.

And we don't know how people functionally do at that time. So Basically, we should all be now focusing on like really looking at long term outcomes. And we are currently evaluating our five year outcomes as well in our institution, looking back and hopefully I will come up with some understanding here, which is tricky because other comorbidities play into it.

Then we have another surgery, you have a fusion, uh, and then you have certainly issues with mast cells or dysautonomia. So it's, um, it's a big. thing to look at, um, because of all the other comorbidities. So, um, I don't have a good answer right now, but my main concern is what are we, what is this surgery helping long term?

Is it really like alleviating all the other issues that a person, particularly with connective tissue disorder is dealing with? Um, but, [00:56:00] but people do report, you know, that it has helped and, um, To the body to feel better, even if it's not the cure, but to, um, have some alleviation and any alleviation, any gain and function often helps you to, um, concentrate and focus on other health issues.

Dr. Linda Bluestein: And I appreciate your transparency about the retethering rate, uh, you know, as an anesthesiologist, I used to always chuckle with, you know, some surgeons would, the blood loss was always less than 10 mls, right? And others, you know, you knew were like, really honest and they would say it was, you know, 100, 150, 250, whatever it was like, you know, you knew that you could trust them.

And some surgeons would say, I've got another 10 minutes and others would say, I've got, you know, another, 10 minutes, it would be actually a real 10 minutes. So I appreciate you being totally transparent about that because, yeah, surgery always, you know, confers well, everything that we do confers risk. So that's, that's really important.

And of course, looking at five year follow up is, is tricky because you [00:57:00] lose people to follow up, right? They move, they don't respond to messages or whatever. So I don't think most people realize how difficult it is to actually follow people. Five years later and get data from that. 

Dr. Petra Klinge: Yeah, it is. Um, and I have to, um, uh, you know, like, uh, thank our research team.

We have like a graduate and undergraduate students and medical students that try to like, Find people and, um, contact them to get results. So we are really working hard on it. But yes, um, uh, of course it's, you don't get the whole set of information. And, um, it is true that this is a, um, a difficult task, but at least, you know, like it's, it's important to look at that.

Dr. Linda Bluestein: And we're going to need to wrap up because I know that you're really busy and I really appreciate you taking the time to chat with me. I know one of the things that people wanted to know about is if you had tips for recovering from tethered cord surgery. [00:58:00] 

Dr. Petra Klinge: Uh, yes. So, um, tips is, first of all, to not be too careful.

That sounds like the opposite of what you think I would say, you know. Of course, the instructions are always like, don't bend, don't twist, don't lift. Um, uh, I would not be, um, Uh, so it's probably good to move your body natural what I have started because I felt I learned that the people that are too like, you know, careful, uh, are moving in the wrong direction, uh, because I guess with, with not using your body, you create more muscle tightness and muscle spasm.

So basically you should not, of course, do like major physical activity, but, um, try to. Right away, you know, walk, sit, um, do minor chores, you know, to really use your body naturally, try to bend and twist, uh, in the way that the body allows you, [00:59:00] uh, so that is my advice for people to not be too, um, scared, um, and also to really not be too scared about a CSF because really, I think this is not really like, uh, the point that, you know, that I worry about.

It's more like the retethering, as I said, and, um, and, and also here, I feel like the more naturally you move your body. So do some bending, do some, you know, like, uh, things, challenge your body a little bit. So you, you get your spine in motion, like right away, if that makes sense. Um, and, um, the other thing is, To also understand that, that it takes time, uh, for the body to adjust to the surgery.

So if there are new symptoms, like some bending, uh, sorry, some, some tingling, uh, some twitching or like some. the weakness that you hadn't had before, uh, it's okay. It's the adjustment of the [01:00:00] spine. So be prepared to have some new, uh, interesting feelings in your body. That might be a little scary, but, um, embrace them say, Oh, that is just what's happening in my body and be, um, like, um, embrace these.

symptoms, it's better for, you know, like for your body to accept those, uh, then to fight those and then, uh, start to, to, to use your body as much as you can. Of course, I understand there are people that are in pain for other issues or still have some back pain, uh, that prevents you from doing things, but, um, it's important, you know, like to.

to, to, um, uh, do as much as you can. And then of course, uh, get the help of a physical therapist if, if there's still significant back pain and back spasms, physical therapy can help there, uh, quite a bit. Uh, it's, that's, you know, like all I'd like to say because people are of course mindful and know their body better than [01:01:00] any doctor knows it.

Uh, but, um, I sometimes see that people are too, um, worried about, um, uh, back pain. You know, like that you can hurt, you know, like your surgical site of with little movements. No, um, you actually have to, you know, trust your, um, the healing and, and, and, and, and use your body, uh, in a natural way as much as you can.

Dr. Linda Bluestein: Mm hmm. That's that seems like a very reasonable. 

Dr. Petra Klinge: You have to 

Dr. Linda Bluestein: accomplish confidence, you know, right, right. Yes. Confidence, I think, is a very big thing. Having confidence in your body. And I know for me, having hypermobile EDS, that definitely is something that happened. I lost confidence in my body, and it was a while before I got my pain under control and regain that confidence.

So that that is a very important thing. And in terms of the symptoms, they were saying, if you have new symptoms, there probably are some new symptoms. like red flag symptoms that you'd say, you know that you need to contact your [01:02:00] neurosurgeon about. So you were saying you might have some new tingling or some, you know, a little, some pain here and there.

Are there certain symptoms that you're like, well, wait, these, if you have these symptoms, you need to get that checked out. Yeah, so certainly, 

Dr. Petra Klinge: you know, like, yeah, so the symptoms that you can have is like twitching, jelly feeling in the legs, you know, like weakness and numbness, tingling, uh, so, but what is certainly should not happen is if you, you know, like feel that your legs are, right.

becoming weaker and weaker so that you are, you know, not able to ambulate. Uh, uh, so that is certainly a red flag. And then the other red flag is a significant, significant, you know, like intolerance to set up, you know, significant headaches that can be suggestive of course, of a CSF leak, like spinal leak symptoms.

And, um, uh, and certainly, you know, like pain that puts you in agony. [01:03:00] Uh, so usually, you know, of course, it can also have other reasons. Um, uh, lack of, uh, appropriate pain management, or just you being like, very sensitive to what just had been done with the surgery, but like significant back pain that is not you know, uh, managed by any like, uh, physical therapy intervention or, or pain management, significant loss of leg, uh, function and, uh, a lot of, you know, spinal headaches.

I'd like to say some people have spinal headaches from the loss of the spinal fluid during the surgery, because we are losing like, I would say like 50 cc's of spinal fluid during the surgery while Fishing out the phylum, you know, so, uh, some people have like prolonged CSF leak symptoms, but it's not a leak.

It's just the loss of the spinal fluid during the surgery. I always tell that, uh, and my team tells that the patient, [01:04:00] um, while they're in hospital to remind them, look, it's not always that you have a leak, you know, we have you know, really such a low CSF leak rate, um, uh, please, um, um, don't forget you lost spinal fluid during the surgery.

Um, that can also be a problem, but of course, if that last past week or so, you know, uh, then it might. Be something, uh, uh, to consider and then I would do a lumbar MRI. So if people telling me, Dr. Klinge, I'm sorry, I'm not walking in the right direction. I'm walking in the other way, you know, my legs are given out on me.

I cannot stand my pain. I'm in bed all day, you know, and my head is killing me. Then I do a lumbar MRI to see if there's a surgical complication or what's going on. And of course urinary retention, you know. If you had been able to empty your bladder before or at least had a decent bladder function and then afterwards you can't, you know, like, then, of course, [01:05:00] that might be a neurological thing that you should be looking at.

Dr. Linda Bluestein: Okay. And we, and we were always regenerating CSF, right? So it's, even though you lose it in the surgery, that's why you're saying like a week to give us a little bit of time to be making new CSFs. Okay. Yeah, absolutely. Excellent. So I always like to end every episode with a hypermobility hack. So some kind of a quick win for people.

Do you happen to have something that you can share with the listeners? Are you meaning like in terms of like the health or anything? Anything for people who are part of this, you know, triad of EDS, mast cell activation syndrome, POTS. Uh, you know, they may have tethered cord syndrome. Of course, this episode is specifically about tethered cord syndrome.

So something relative to that would be great, but anything that, you know, somebody might not already be aware of that might be something that they could try or that they might find helpful. 

Dr. Petra Klinge: Um, [01:06:00] I think, you know, like, um, as a researcher, you know, um, let me say this. Um, what I felt and much. To my regret is that people feel dismissed, right?

And, um, uh, of course, now there are groups that support each other, but you still feel alone, you know, in this world where there are many uncertainties and, um, and, uh, things going on, you know, like where you hear many opinions. Um, I would like to say, um, you will, you know, um, Keep trust in your body. You know, I learned, you know, like that people are right about their body.

They're right about what they're feeling. You know, don't let any doctor turn you down. Believe in what your body is telling you. Believe in your symptoms and then read. [01:07:00] That's why I did all my publications or most of my publications as open access. Read because you find your answers. in, you know, like research that has been published.

Um, there also is, for example, the, um, publication that, um, uh, is, um, uh, uh, also public from the, um, um, uh, NASEM, uh, work, you know, the National Institute of Sciences, where we discussed, you know, neurological issues, um, in relation to tethered cord and other, uh, and Chiari and connective tissue disorders. So, um, read those things and you will already feel better right away because you feel validated, you know, so I'm happy to give you the links.

So the, the NASAM, you know, like report, um, about like, uh, neurological issues with connective tissue disorders is open [01:08:00] access. Some of our publications open access. So believe your symptoms. Trust your symptoms. You are right about how you feel, uh, but look at, you know, like what's out there also to validate your symptoms.

And when you read it, you will already feel better about, um, you know, being validated and then you can have time to think about your next steps. 

Dr. Linda Bluestein: Okay. Thank you for that. That's really helpful. And I'm so grateful to you for joining us today. Uh, the final, final thing before we go, um, can you let people know where they can find you?

And also if you're working on any special research projects right now, um, or anything else that you wanted to share? 

Dr. Petra Klinge: Yeah. So I don't have social media. Um, uh, so, uh, the best way to find me is, um, you know, through my email. My Brown email, uh, if there are questions. So, um, um, I guess that's what you were asking, right?

You can find me [01:09:00] or 

Dr. Linda Bluestein: where people can learn more about your, your practice or, you know, if they, if they wanted to get a consultation with you. 

Dr. Petra Klinge: Yeah. So, um, uh, the easiest way is probably, you know, to, to email me through my Brown email. It's Petra underscore Klinger at Brown dot edu. Okay. And, uh, they can send a request and, uh, my staff is happy to share, you know, like stuff that we are doing and also, uh, uh, can initiate a consult, um, uh, that's the easiest way.

Um, the next research that we are doing, and we actually probably in, uh, Uh, March are starting to recruit patients is, um, uh, the, um, uh, proof that the phylum in fact controls all the para spinous muscles from the bottom up to the neck, we call it the spinal cord motion project. So what we will do is. Um, we [01:10:00] will at Brown University in our Center for Innovative Research at Brown, we will, um, uh, ask patients if they are willing to come to the center before tethered cord surgery.

We will do like surface EMG. Electrodes, not needles, surface stickers on the entire spine and have people, for people with tethered cord, have people walk and do certain chores. And then we record the synchronized activation of the muscles in, along the entire spine. And we hypothesize it's going to be desynchronized in people with tethered cord syndrome.

And then we will, um, Or for the tether cord surgery, of course, and then we'll redo it after the tether cord surgery and see whether the muscle activation becomes synchronized again. And, uh, if that is the case, we have the [01:11:00] proof of the concept that really, though, our phylum is, you know, like navigating our entire spine.

And, uh, if it's a bad phylum, it's messing up. you know, with the coordination of the muscles and the spine and that's what causes scoliosis, kyphosis, back pain. So that is our project, the spinal cord motion project. That is the next step of our research to really understand the whole concept of it and also get evidence that that's what the surgery does, you know, correct the spinal biodynamics.

Dr. Linda Bluestein: That's fascinating. So you're saying that the diseased phyla may contribute to scoliosis? Well, you're, you're right. Your hypothesis is in this for the, okay. Oh, wow. Very good. And also typhosis 

Dr. Petra Klinge: and abnormal alignment to the spine and muscle weakness, of course, and, and back pain. 

Dr. Linda Bluestein: Mm hmm. Fascinating. Well, we will all be staying tuned and I hope you'll come back and talk to us about that research once.

I'm sure it's going to [01:12:00] take a while before that project is completed. Research always takes quite a while. Recruiting all the subjects, analyzing the data and all of that. So, but thank you so much for chatting with me today. I really appreciate it. This is such an important topic. So many people with these conditions are impacted by tethered cord syndrome and it's complicated.

It's, uh, you know, it's not like you just go get an MRI and you definitely get your diagnosis. So I really, really appreciate you taking the time to chat with me today. 

Dr. Petra Klinge: Thanks for having me, Dr. Lucene. I really appreciate your time and I hope it helped. And, um, I will also be very happy to share with Shanti the links to some of the publications that I mentioned because, um, I do also hear from other patients that when they read it, It helped them a lot to feel validated and to believe in the problems and, um, uh, and to, um, uh, not, uh, give up on themselves, uh, because that should not [01:13:00] happen.

Dr. Linda Bluestein: Yes. Yes. Absolutely. Absolutely. Yeah. If you're able to do that, that would be great. Uh, just to make sure that we've got the exact right papers. And so, yeah. Thank you again. This was really fascinating and we'd love to chat again sometime.

That was a fascinating conversation with Dr. Klinge. She is such an amazing and wonderful neurosurgeon, and so I think it's really great that we got to have this conversation about such a nuanced topic like tethered cord syndrome. I really hope you enjoyed this interview. Week's episode of the Bendy Bodies with the Hypermobility MD podcast.

You can help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. This really helps raise awareness about these complex conditions. If you would like to dig deeper. You could meet with me one on one. Please check out the available options by visiting the services page of my website at hypermobilitymd.

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