Arachnoiditis: The Severe Pain Condition Doctors Miss with Dr. Forest Tennant

[01:07] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility MD, a Mayo Clinic-trained expert in Ehlers-Danlos syndromes dedicated to helping you navigate hypermobility and live your best life. I am so excited to have Dr. Forest Tennant on the show today. We're going to be talking about arachnoiditis, which is a condition that is so frequently missed and affects quite a few people.
Dr. Forest Tennant has spent most of his medical career as a physician and researcher in the fields of addiction and pain management. He has published over 300 scientific and medical articles in these fields. During his long career, he has served as a US Army medical officer, UCLA professor, journal editor, public health physician, and drug advisor for the Los Angeles Dodgers, NASCAR, and National Football League. He and his wife Miriam have been married for 58 years. Together, they founded the Tennant Foundation for charitable giving and sponsorship of Arachnoiditis Hope. They split their business and philanthropic activities between West Covina, California, and Wichita, Kansas.
[02:06] As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks. Here we go.
[02:54] I am so excited to be here with Dr. Forest Tennant, who is truly a groundbreaking researcher and physician in the space of arachnoiditis. Thank you so much for joining me today.

[03:06] Dr. Forest Tennant: I'm delighted to be here. I know about your work and I know about the problems of EDS, and I'm delighted to be here.

[03:14] Dr. Linda Bluestein: Well, we're lucky to have you. For listeners who are not maybe as familiar with your work, can you briefly explain your background and how you got so deeply involved in caring for people with arachnoiditis?

[03:26] Dr. Forest Tennant: Well, first off, back in my day, after I graduated from medical school, I entered the Army because the Army funded my way through medical school, which was pretty common back in my day. And so I served during the Vietnam War as a combat surgeon, and I was in the military for quite some years. I got very interested during my Army time in addiction medicine, because there was a drug problem in the military. And of course, being in the Army, you obviously get interested in pain and fitness.
[04:01] So after I finished my Army days in the early 1970s, I had an opportunity to transfer to the Public Health Service as an academic fellow at UCLA to study research and fundamentally go into research. Primarily, my interests were in both addiction medicine and in pain. Starting back in those years, I went right at it starting in the '70s, and I've been at it ever since. During the first part of my career, I spent most of my time with addiction medicine and did a lot of work with opioids and cocaine, stimulants and alcohol, a lot of those normal things. But I also started getting very interested in pain. And believe it or not, we needed to start a pain clinic clear back in the 1970s. We started it primarily because we had people who needed opioids who were attending methadone clinics, but they were not addicts — they were pain patients. And so that was sort of the aegis of starting intractable pain clinics clear back in the 1970s. I actually started my clinic in 1976, so you can count the years. I've been at it now for some 50-some years, and it's been a great career. We've seen a lot of great things happen.
[05:35] As time went on, one of the things that started to occur was what was causing severe pain and what was the underlying cause of all these problems. And I started to realize that this condition called adhesive arachnoiditis was a major cause of one of the more severe forms of intractable pain. I got interested because mainly no one else knew anything about it. Beginning about 2 decades ago, I started noticing in the pain clinic that we had this condition called Ehlers-Danlos syndrome start showing up with all kinds of severe pain problems, including arachnoiditis. And so as time has gone on, I've learned to associate the genetic connective tissue diseases with severe forms of pain, of which arachnoiditis is one. I'm one of the people who has stayed at these unusual conditions because they need to be looked at. And I must say that over time, people like you, Dr. Bluestein, and myself and a handful of others have been bringing treatment to this field, and we're making a lot of headway.

[07:01] Dr. Linda Bluestein: For people who maybe have never heard the term intractable pain — and I have to tell you, I really had not heard that term before until I started reading some of your work — can you explain what the difference is between intractable pain and chronic pain?

[07:15] Dr. Forest Tennant: Yes. The term intractable pain was actually coined, as far as I can tell, by British physicians in the 1930s, and they separated out pains that had no cure and no treatment from those that did. That was the difference between chronic pain and intractable pain. Intractable pain had no cure, and all you could do was try to make the patient comfortable. Today, another term for this — and maybe a better term — is palliative care or end-of-life care, because people who have intractable pain, if it's not treated, don't have a long life.
[08:00] That term became popular in Britain in the 1930s, and frankly it was kind of forgotten about. But in the early 1990s, the state of Texas decided to pass what was called an intractable pain law. Their purpose was to make a law that in patients who had severe pain and there was no cure, all you could do was make them comfortable — and they passed a law to allow physicians to prescribe opioids to those patients without being disciplined or charged with any kind of a crime. California adopted that after that, and frankly I was not familiar with the term intractable until the state of Texas actually brought that term back forward from the 1930s. There are several states that have these laws now.
[09:02] So when you use the term intractable pain — to summarize it — it's terrible, severe pain that's going to probably require narcotic or opioid use, and it's really palliative care, and usually it's end-of-life care. For example, it might sound strange, but one of the criteria to be admitted to my intractable pain clinic was if we thought they would perish or die within a year if they got no treatment. It's a sad term, to be honest about it.
[09:40] Today it's still probably a worthwhile term, but there are other terms like high-impact pain. People like that term to indicate severe pain. Plain old "chronic severe pain" is pretty darn good too. The bottom line is that clinically, we have certain people who develop conditions with terrible pain that's going to require medical interventions and anything you've got handy that might help, as opposed to those people who are going to respond to a lot of the standard things — such as antidepressants, anti-inflammatory agents, epidural injections, and those kinds of conditions.
[10:26] So we do have in society a group of severe chronic pain patients who really are in bad shape. They've got terrible pain 24 hours a day. They need extra care, and they need physicians and nursing personnel who understand those people and who will try to bring them treatment that is palliative and humanitarian — mainly to provide a quality of life and comfort, as opposed to trying to develop a cure. And of course there's research going on to try to reduce the causes of intractable pain. I have focused on arachnoiditis, and I no longer consider it quite as intractable as I used to.

[11:14] Dr. Linda Bluestein: Okay, and I definitely want to circle back to that. In fact, we'll probably cover this in the second half, because probably some people listening just now went, "What? Pain can be fatal?" And I know from reading your work that you talk a lot about what happens with hormones and things like that when a person has been in pain for a long period of time. So let's circle back to that part in the second half.
[11:34] Right now I feel like people are wondering, well, what is arachnoiditis? So can you explain to us what the arachnoid layer actually is and what happens when it becomes inflamed?

[11:51] Dr. Forest Tennant: Sure can. There is a tissue in the body called the arachnoid membrane. The best way to explain this is that all of us have a spinal canal, and the inner covering of that spinal canal is a layer called the arachnoid. Under the microscope, it kind of looks like a spider web, and that's why the Dutch called it that clear back in the 1600s. The arachnoid is the inner lining of the skull or of the spinal canal. Arachnoiditis, in simple terms, is really an inflammation of that tissue.
[12:33] When they talk about arachnoiditis today, the common disease involves the lower spinal canal. Now, the spinal canal contains the spinal cord, obviously, but what a lot of people don't know is that the spinal cord, at about midway down your back, turns into a bunch of small nerve roots called the cauda equina. There are about 18 of them. So from your mid-back down, the spinal cord is not a solid bit of tissue but 18 different thread-like nerves hanging down in spinal fluid.
[13:18] Now, if it so happens that any of those nerve roots get attached to the arachnoid membrane, you've got a mass there, and that's adhesive arachnoiditis — and it's a terrible disease. It was known in the 1800s as the devil's disease, because if the nerve roots get attached to the arachnoid, you have tremendous pain. You have no nerve conduction to a lot of your organs from almost your waist down, and it ends up with terrible neurologic disabilities — paralysis of your bladder, your bowel. You become very debilitated, and people who are untreated end up going to bed and dying at a very early age.
[14:11] So it's a terrible disease if not treated, but today we do have treatments for it, and we aren't seeing near the tragedy that we used to. We still see people who commit suicide with the disease. We still see people who end up in bed. We still see people who end up dying before age 50. So we do see tragedies, but we're getting those tragedies eliminated one at a time.
[14:32] And one of the reasons I'm here is that if you have Ehlers-Danlos syndrome or another genetic connective tissue disease, you are at a higher risk than normal people to develop this disease. That is because the arachnoid and the nerves have the collagen that is deficient, like other parts of the body. I actually think that almost a third of the people today who develop adhesive arachnoiditis have EDS. And there are certain things you can do to try to make sure it never happens.

[15:15] Dr. Linda Bluestein: And we definitely will be telling people what the symptoms are that they should be looking for in just a little bit. I'm so glad that you pointed out the importance of that connection. That's part of why we're talking about this topic. And also, because of the fact that there are so many things that can be done — most of which is based on your work — it's so important for people to be aware, because we know that they are very likely to be misdiagnosed and not offered proper treatment. So I'm so grateful to you for coming on the podcast.
[16:07] I know that it seems like it used to be called failed back surgery syndrome, or at least that seems like a term that was often used. Is arachnoiditis different from failed back surgery syndrome, as far as you're concerned, or is that a common cause of a lot of failed back surgeries?

[16:23] Dr. Forest Tennant: I'm so glad you brought up failed back surgery syndrome. That term became the label for an individual who had back surgery, but the pain never went away. In other words, they did the back surgery — usually on a disc that had herniated — hoping that they would be able to fuse the back, take out the disc, or do a surgical procedure that would eliminate the pain. Unfortunately, the surgery was done very well, usually, and maybe the paralysis was taken care of and the person could walk, but the pain did not go away. And so those people were given the term failed back surgery syndrome.
[17:15] Now, some concerned physicians studied these people, and what they found out was that about a third of those failed back surgery syndromes were adhesive arachnoiditis. There are some other causes of failed back surgery syndrome — for example, the disc may have re-herniated — so it's not exactly synonymous, but it's close. Anybody who's been told they have failed back surgery syndrome should at least be evaluated for adhesive arachnoiditis.

[17:57] Dr. Linda Bluestein: Okay. And let's talk about some other risk factors besides back surgery. What are the most common causes of arachnoiditis that you see in clinical practice?

[18:01] Dr. Forest Tennant: The best way to describe this is historically. In the 1800s, the major causes of arachnoiditis were tuberculosis and gonorrhea — those two infectious diseases. So it was infectious during that century. Coming forward into the next century, the most common cause was a dye known as Pantopaque, or Myodil. This dye, which was used for X-rays, was sometimes toxic and caused adhesive arachnoiditis. My first cases were people who had adhesive arachnoiditis from this dye, clear back in the 1980s and 1990s.
[18:53] Now coming into this century, the most common cause appears to be — I hate to say it — surgical or medical interventions. Most of the people who have adhesive arachnoiditis have two things happening: they have a risk factor or two, and then they have something like an epidural injection, or maybe epidurals for delivery, a spinal tap, or surgery itself. About half the cases are people who have had surgery, which are the failed back surgery syndromes. But then you have another 30% that may have had epidurals or spinal anesthesia for delivery.
[19:37] It's unfortunate, but we know that out of the thousands of epidurals or spinal anesthesias that are given, a very small percentage will end up with adhesive arachnoiditis. It's a risk that you do take when you have those procedures. And I'm not advocating that those procedures be stopped, because they're good for thousands of people, but you do have that handful of people who get this complication. It's sort of like the risk you get with a vaccine — somebody is going to have a complication, and you don't want to throw the baby out with the bathwater. So epidurals have really made their mark in pain management. So has spinal anesthesia. So has spine surgery. But I hate to say it, there's a small percentage of people who have those procedures who are going to develop adhesive arachnoiditis.
[20:35] Now let's talk about the risk factors for a minute. We've already talked about a major one, and that is Ehlers-Danlos syndrome. If you have a genetic connective tissue disease, your risk of developing adhesive arachnoiditis is going to go up if you have an epidural injection, if you have surgery, if you even have a spinal tap. How much does the risk go up is something I can't tell you exactly, except the risk does go up.
[21:05] Now, there are some other risk factors also. One is if you've had an injury that's given you a slipped disc or a bulging disc — anything that causes a disc to bulge or degenerate puts you at higher risk. For example, if you've fallen off a roof and you've got a couple of bad discs, you're going to be at higher risk. Other factors include a sedentary lifestyle, obesity, diabetes, and infections. We now know that some viruses tend to put you at higher risk. The one that has called the most attention is the Epstein-Barr virus, and statistically, if you've ever had infectious mononucleosis, you're at a higher risk for adhesive arachnoiditis — possibly because the virus still has the potential of reactivating or causing autoimmunity.
[22:28] So what's happening today is that practically everybody we see with active arachnoiditis has had either an epidural injection, a spinal tap, spinal anesthesia for delivery, or back surgery, plus one or more of these risk factors. And those are the people who unfortunately may end up with this terrible disease.

[22:54] Dr. Linda Bluestein: And I'm glad that you said we shouldn't throw out the baby with the bathwater, because as an anesthesiologist, of course doing labor epidurals or spinal anesthesia for a C-section is very important and safer than doing a general anesthetic. But arachnoiditis is definitely something I was not aware of as an anesthesiologist — I was never taught about it. I only learned about it after I was no longer working in the operating room. So it's really important for the clinicians listening to be aware of these potential complications, and for the patients to be aware so that they can ask the right questions if they're offered an epidural steroid injection, for example, or if they're pregnant and anticipating delivery. Unfortunately, we don't really know the numbers in terms of what the risk actually is, because of course there are so many other variables at play.

[23:53] Dr. Forest Tennant: Well, you give me a chance to get on my soapbox a little bit here. I don't think that a woman wants to turn down an epidural for delivery, or if a pain specialist says you need an epidural for your pain management, I don't think you want to say no to that because you might get adhesive arachnoiditis. But what I do think is this: you have to have informed consent. You do need to know that there is a rare, not very likely possibility that you could have this.
[24:25] Now let me tell you my real gripe. The physicians who do spinal taps, epidurals, or spine surgery need to know that if you're going to get arachnoiditis from those procedures, it usually happens that the patient will get severe back pain within 72 hours after the procedure. And I think they need to be aware that there are emergency procedures you can do to prevent the adhesive arachnoiditis. So I'm on my soapbox to get doctors to know: go ahead and do the epidural, do the surgery, do the spinal taps, but be prepared to do something like a simple 6-day Medrol dose pack if that patient wakes up off the operating table and has severe back pain, or says that they've got pain in their legs or a terrible headache. In other words, post-procedure pain, headaches, leg paralysis — if you have those symptoms, you can get started with treatment right away to prevent the adhesive arachnoiditis. That's where I come down on this. We can prevent most of these cases, in my opinion.

[25:40] Dr. Linda Bluestein: Yeah, that's so important. And we'll definitely, when we talk about treatment, I would love for you to go into more detail about those emergency procedures. And of course, people can also get post-dural puncture headaches as well, which sometimes are treated with a blood patch. And a blood patch also puts you at risk for arachnoiditis. Isn't that correct?

[25:57] Dr. Forest Tennant: That's right. In other words, you're not talking to the greatest fan of blood patches here.

[26:02] Dr. Linda Bluestein: Yeah.

[26:07] Dr. Forest Tennant: We've got cases in which blood patches look like they caused the arachnoiditis, and there's at least one case in the literature that I know of. So blood patches have been kind of a "we don't know what to do, let's give them a blood patch" situation — and let's get over that. Intravenous methylprednisolone is really the backbone of emergency treatment. Simple to do. Every community these days has infusion centers, has nursing services to do this. There's no reason why a person who develops pain in their back after an epidural or delivery can't have access to intravenous methylprednisolone to try to stop adhesive arachnoiditis.

[26:53] Dr. Linda Bluestein: Okay, that's super important to know about. I also wanted to circle back — when it comes to epidural blood patches, again, when I was working as an anesthesiologist, we would do blood patches for post-dural puncture headaches quite routinely. And for people who are not aware of what that is, we actually draw your blood in a very sterile fashion, and then we put the needle into the epidural space and inject the blood with the idea being that the blood is going to seal up the hole. But that's a foreign substance going into that potential space and can definitely contribute to the risk of arachnoiditis. And again, I had no clue about this when I was working as an anesthesiologist — I only learned about this later. So it's just so important for the clinicians listening to be aware of these things, so that they can, like you said, have this informed consent discussion with the patient and really discuss what the alternatives to a blood patch are.

[27:50] Dr. Forest Tennant: Well, Linda, one of the bad things about being a doctor is that as you go along, you're able to look back and see what we should not have done or should have done. And there's nothing we can do about it now. We do the best we know at the time. But we all have our regrets about what we did in the past or wish we had done in the past.

[28:11] Dr. Linda Bluestein: Yes, most definitely. And can you talk a little bit about why arachnoiditis is so often missed, and not even acknowledged? Why do patients struggle to get this diagnosis recognized?

[28:24] Dr. Forest Tennant: I think this is typical of rare diseases. The definition of a rare disease in the United States is a disease that has fewer than 200,000 cases. We don't have anywhere near that many cases of adhesive arachnoiditis. So the problem is that a physician may see one case in their lifetime. They may have never heard of or seen a case. And so how many rare diseases are there? To a great extent, the fact that it's rare makes it difficult to recognize.
[28:59] I also do think that we're a little deficient in training and teaching people about the anatomy and the physiology of the lower spinal canal. I know I had to figure all this out myself — I never had any good teaching about it. When I got dug into this, I spent hours and days trying to understand the cauda equina and how the discs fit and what the ligamentum flavum was and how the spinal fluid flow works. I don't think we're doing enough teaching on basic physiology, anatomy, and biochemistry of the lower spinal canal. It's sort of like the heart — you've got to study it almost as an organ. And I don't think we're doing a good job of this because it is complex. It's not something you're going to pick up by looking at a one-page flyer. You're going to have to do a little studying on this.
[30:02] So I think physicians are very poorly trained to recognize the difference in back symptoms. With adhesive arachnoiditis, very few doctors know that, yeah, you've got pain in the back, but what separates you from everybody else down at the chiropractor's office? I'll give you a couple of things.
[30:23] First off, for some reason with adhesive arachnoiditis, you get funny sensations on the skin. You get sensations on the skin down in your legs or your buttocks of either water dripping or running on it, or insects crawling on it. So one of my first things is: if you get a patient who says, "Hey doc, I think I've got bugs on my legs," you think adhesive arachnoiditis.
[30:51] The second thing about adhesive arachnoiditis, which is not appreciated at all, is that the pain changes with position. When the arachnoid membrane gets inflamed and it's attached to the cauda equina nerve roots, when you sit down, chances are you're not going to be able to sit for very long. So when somebody says, "Doctor, I can't sit for over 5 or 10 minutes," you want to be thinking adhesive arachnoiditis. The converse of that: when the patient says, "Hey doc, I have no pain when I stand up." I've literally seen adhesive arachnoiditis patients who cannot sit — they must stand their entire life. They eat their meals standing. They've even got to sleep standing. And these things can occur because the arachnoiditis usually occurs right where your spine sits down. A lot of people with Tarlov cysts have this problem also.
[31:54] So these are the tip-offs that I'd like every physician and nurse to know. There's no reason why every physical therapist can't know these basic, simple things so they can screen out these cases. And I'm also on my soapbox to get chiropractors and physical therapists to recognize adhesive arachnoiditis, because they see a lot of these people first.

[32:22] Dr. Linda Bluestein: Yes. And we're going to go into a little bit more detail about those symptoms. I'm so glad that you pointed that out, because knowing the difference between symptoms related to other back problems versus arachnoiditis is so important. So we're going to take a quick break, and when we come back, we're going to talk about imaging and diagnosis, treatment, and symptoms. We'll be back shortly with Dr. Tennant.
[34:29] So we're back with Dr. Tennant. I would love to talk now about imaging and diagnosis. When it comes to imaging, what MRI findings are we actually looking for in diagnosing arachnoiditis?

[34:42] Dr. Forest Tennant: The MRI findings to someone like myself who looks at it all the time are quite obvious, but it's not a simple thing, and it's not quite as objective and standout as you would hope. What the radiologist will look for is what we call nerve root clumping, and you can see that.
[35:07] Now, the MRI is a marvelous technology. I could give you the argument that I wouldn't be here with you today if it weren't for the new MRI technology. The ability to inject a dye and then have it show up in all the organs in the spinal column is a marvelous advance. And that's what's brought me here today — the MRI. Because with this contrast MRI — contrast means you can use this dye to see the difference between nerve clumping and fluid — you can see where the nerves are clumped. I can look at them and tell whether they're large, whether they're edematous, whether they're attached to the arachnoid. So the definition that is the most hardcore is one in which you have a mass or a clump of nerve roots attached or glued to the arachnoid membrane. And you can actually see this.
[36:09] On the MRI, we have lateral views from the side, and then we have what we call the axial view, which is where you're taking pictures from toe to head. So you literally get a chance to see inside the human body. The spinal canal is about the same size as your index finger, but the contrast MRI blows that up 3 or 4 times to where we can actually see these things.
[36:36] Unfortunately, since it is a rare disease, radiologists may never have seen a case themselves. I see cases all the time in which it is missed, but you can't entirely blame somebody — the fact is, this is still a rare disease. It's terrible, but it is rare. A lot of your radiologists can darn near go through their career and never see a case. But what will help is if the physician ordering the MRI clues the radiologist in that it might be there. That'll give the radiologist a little boost. And of course, right now radiologists are on their learning curve on how to spot these things.
[37:24] In my own case, I've learned that when people have their MRIs right after an epidural or after birthing anesthesia, you don't see adhesive arachnoiditis for several weeks — but there are signs in between, and I call that spinal canal inflammatory disorder. You can see where inflammation is starting to set in to the cauda equina, the arachnoid, or to the discs, and that needs to be treated aggressively to prevent adhesive arachnoiditis. I actually see that as kind of a wave of the future.
[38:02] That said, I can recall 5 or 8 years ago, you hardly ever saw a radiologist read out or call adhesive arachnoiditis. You see it all the time now. Compared to where we were 5 years ago, it's a night-and-day difference. They're getting the hang of it. They're diagnosing it. So we are starting to identify cases, which is great for all concerned.

[38:37] Dr. Linda Bluestein: And I'm glad that you pointed out that when the physician is ordering the MRI, they should really put that on the requisition — that they suspect arachnoiditis or adhesive arachnoiditis — so the radiologist knows to look at that carefully. Because they're looking for a lot of different things, right? So that's an important thing for us to be communicating to the radiologist when we are writing the order.

[38:58] Dr. Forest Tennant: Along that line, let's say you're listening to this show right now and you're a family member. If you know that your loved one is about to have that contrast MRI and you've read about arachnoiditis, don't hesitate to tell the technician, the nurse, or the doctor your own suspicions. In fact, it is my opinion that arachnoiditis education is going on primarily because patients and families are taking information to their family doctor, to their nurse practitioner, to their PA, to their chiropractor, to their PT. That's how we're getting information out there. The best education being done today is from patient to family to doctor — which tells you that our professional organizations may not be doing a very good job these days.

[39:55] Dr. Linda Bluestein: Yeah. I've learned so much from my patients — it's unbelievable. Let's talk a little bit more again about the symptom patterns that we see from these patients, because really understanding what things we want to be looking for specifically — things that should put us on alert so that we know when we should be getting these patients imaged — is so important. You're talking about some treatments that, if executed early on, can actually abort the process, or at least make this situation a lot better. So it's really important to make sure we all know what patterns to be looking for. You've already mentioned some of these things, but if you wouldn't mind going over that again, that would be really helpful.

[40:44] Dr. Forest Tennant: Well, you've just given me my favorite question — how do you know? Let me give you the way to really go about this.
[40:54] I think the statistics show that almost all of us develop a back pain or back problem in our lifetime. Here is the way it really does work. Let's say that a person wakes up one day and they've got back pain. Maybe they were out mowing the lawn the day before. Maybe they got out on the wrong side of the bed. Who knows? But they've got back pain. Now, what the average person does when they first get their back pain is they go to their medicine cabinet and see if they've got some Tylenol, some Motrin, some aspirin, or some Bengay and they treat themselves. Probably half the time the back pain goes away. But if it didn't go away with their Bengay and their aspirin, chances are they're going to call their local chiropractor or maybe their physical therapist, and they're going to go and get some chiropractic treatment or a massage. But it doesn't work.
[41:58] And then they may try to call an orthopedist or their family doctor, and the family doctor or orthopedist is going to prescribe a regular antidepressant, maybe some pain medication — but it still doesn't get better. Here's the bottom line with all of this. The person you've got to suspect is the one who has tried their own treatments, tried a chiropractor, tried their family doctor, and if the usual things aren't getting that better, look out — you may have adhesive arachnoiditis.
[42:40] I'm of the opinion that at least 80 to 90% of back pain problems get taken care of by the routine things in every community: the chiropractor, the PT, the family doctor, the nurse practitioner, the gym. You take care of a back problem. But that person who isn't getting better, who keeps saying, "You know, I've been to the doctor, it's just not getting any better, this medicine doesn't work anymore" — remember, when you have arachnoiditis, it's something that's not going to go away with chiropractic. It's not going to go away with naproxen. It's not going to go away with PT. It's going to hang there because it has to be treated medically. It's in a class of its own. So the signal is the person with back pain who is not getting better with standard treatment that's in every community.

[43:36] Dr. Linda Bluestein: And I think the positional thing that you mentioned earlier is so important, because more of a myofascial type back problem would be bad with standing or sitting, but you're saying with arachnoiditis, it's really the sitting that's the bigger problem. So is that another important distinction?

[43:55] Dr. Forest Tennant: That's right.

[43:57] Dr. Linda Bluestein: What about autonomic symptoms? Are there autonomic symptoms that often accompany the pain from arachnoiditis?

[44:03] Dr. Forest Tennant: Well, there are, but you'd probably know more about that than I do. You folks that specialize in EDS, you're the autonomic experts because you deal with such terrible cases. The EDS with the arachnoiditis — you get what's called spinal fluid blockage. That mass of arachnoiditis down in the lower spinal column interferes with spinal fluid flow. So yes, that can affect somebody trying to rise up from a chair too fast. It can certainly give you some dizziness or some vertigo, and you can get those kinds of symptoms with the arachnoiditis.
[44:48] Interestingly enough, you may also, with arachnoiditis — even though it's down in your lower spinal canal — get some tingling and symptoms in your hands. It's believed that most of that is caused by the spinal fluid being blocked. Think of the spinal canal this way: a small stream or creek has got a great big boulder in it, backing up water. In the spinal canal, that mass of arachnoiditis backs up spinal fluid. And that'll give you a lot of different symptoms: blurred vision, vertigo, dizziness, headache, tingling in your hands. So we do get a lot of that, but frankly we don't get quite the terrible autonomic symptoms that you get with EDS, and they normally are not that bad.

[45:39] Dr. Linda Bluestein: Okay. Let's shift gears and talk about treatment. And I do want to point out — arachnoiditis, the word ends in -itis, so it's an inflammatory condition. What kinds of anti-inflammatory or neuroprotective strategies have you found most helpful?

[45:58] Dr. Forest Tennant: Well, this is a key question, and one that we never understood for a long time. The inflammation is in the bottom part of the spinal canal. For an anti-inflammatory agent to be effective, it has to do several things. One is it has to cross what's called the blood-brain barrier. Most anti-inflammatory agents work great on your knees or your joints or your muscles, but they don't get into the spinal fluid. So right there, we've cut off probably two-thirds of what's called an anti-inflammatory — they're not going to work. Motrin's not going to work very well. Neither is aspirin, neither is Nalfon, even Celebrex. These things aren't going to work very well because the drug has got to get into the spinal fluid.
[47:01] And the second thing is that the inflammation in these tissues is a different kind of inflammation. We're normally used to thinking of inflammation being in joints or in muscles. This inflammation is in nerves and in the arachnoid. These tissues are different, and they don't seem to respond to a lot of the anti-inflammatory agents.
[47:29] Unfortunately, only a few things really work on adhesive arachnoiditis inflammation. The two main drugs we use are: one, a corticosteroid called methylprednisolone or Medrol, and the second is an anti-inflammatory called ketorolac — the trade name is Toradol. These have been the two agents that work on the inflammation of arachnoiditis the best. They've been the most consistent in the treatment that we use, and today we like to have those used at low dosages on a chronic basis. That's been the backbone of anti-inflammatory treatment.
[48:18] Some of your other drugs like diclofenac work in some people, meloxicam in a few people. But what's interesting is that a lot of your natural herbal compounds do better than some of the prescription compounds, maybe because they're natural and they get into the system. Your natural anti-inflammatories such as curcumin, luteolin, resveratrol, and glutathione — these are natural compounds, and they seem to work fairly well.
[48:57] The bottom line in treatment of arachnoiditis is that we don't recommend one treatment — we recommend a protocol. We recommend multiple measures attacking the problem simultaneously, which will get you a better result than any one single agent. I personally like to see people take a combination of prescription anti-inflammatory agents plus some of the naturals. And I also throw in a nice anti-inflammatory diet — a lot of vegetables and fruits, for example.

[49:31] Dr. Linda Bluestein: Great. And I know one of the things I recommend quite frequently is palmitoylethanolamide, which is abbreviated as PEA — something that I believe I've seen in your excellent handouts and materials that you post on your website quite frequently. Is that something that you find beneficial in patients?

[49:49] Dr. Forest Tennant: This is a very interesting compound. Palmitoylethanolamide, known as PEA, is a natural chemical in the human body. The human body produces it when you're in pain. It's right along with endorphins and oxytocin — a natural pain reliever inside the human body. It is now standard bill of fare. What it does is cut down inflammation, particularly in nerves, particularly in the brain. Now German physicians have started using this at a fairly good dosage and have been reporting that they've gotten some pain totally eliminated after taking it for two to three months.
[50:40] Today I recommend that everybody who has adhesive arachnoiditis take PEA at a dosage of 600 to 1,200 milligrams twice a day. And in fact, it is such a safe compound, I think EDS patients really need to look at this compound, because it seems to have anti-inflammatory properties both in the nervous system, in the brain, as well as in the spinal canal, and out in the joints. So PEA has been a real advance for us. Nice and safe, and it's a natural compound.

[51:14] Dr. Linda Bluestein: Yes, I love PEA, and I personally take it and have recommended it to a lot of patients. Can we also talk about low-dose naltrexone and opioids? Because I know that for some people, opioids are ultimately the only thing that's going to be effective for them. But some other people may be able to take low-dose naltrexone — and naltrexone, we know, is an opioid antagonist. What have you found with regards to patients who respond to low-dose naltrexone?

[51:45] Dr. Forest Tennant: Low-dose naltrexone has been a great addition to what we're doing. At low dosages, it's very safe. My starting dose is either 0.5 or 1 milligram twice a day. Naltrexone has some direct pain-relieving capability, plus anti-inflammatory capability, and it also seems to have some autoimmune-suppressive effects. So it's got about 3 good properties, and you try this on anybody who's got a mild or new case, if you can. We do highly recommend it.
[52:31] The only problem with naltrexone is that we've had doctors who think they can just give that and don't have to give an opioid or any other pain reliever — that it'll take care of the whole pain. It will not, except in mild cases. So as long as you want to use the naltrexone for partial pain relief and these other properties, it's a winner. A great treatment example: let's say a woman has just developed symptoms right after delivery, or somebody has just had a spinal tap and has the symptoms. The combination of low-dose naltrexone and PEA would be a winner — good, safe, and it would probably prevent adhesive arachnoiditis. So both naltrexone and PEA have been real welcome additions to treatment.

[53:21] Dr. Linda Bluestein: Okay. And you mentioned thymosin. What about other peptides? Are there peptides that you feel are helpful?

[53:30] Dr. Forest Tennant: I'm getting known in certain circles as the peptide man, because I think the peptides are a new advance. In this country, we've had some great biochemical entrepreneurs who, on their own — not big pharmaceutical companies, just small startup companies — have taken and developed what we call peptides. Now, a peptide is 2 or more amino acids in a chain. Peptides are nothing new — they're chains of amino acids and they make metabolism work inside the body. There are hundreds of peptides. But what these entrepreneurs have done is manipulate these amino acids, put them in different sequences, and found that they can get some tremendous positive therapeutic effects with them.
[54:32] There are about 4 or 5 peptides that I highly recommend for adhesive arachnoiditis. Let me cover those for you.
[54:41] The first one is called KPV. That's a compound with 3 amino acids: lysine, proline, and valine. It's got great anti-inflammatory effects.
[54:57] Another one is glutathione. That's 3 amino acids put together. It also seems to have what I call an anti-garbage effect — it seems to carry out all the infectious waste. It's an antioxidant as well. So that's been very helpful for anti-inflammatory action.
[55:17] Now there is one called thymosin. Thymosin is a cross between a hormone and a peptide — it's both. It's made in the thymus gland. It'll suppress the Epstein-Barr virus and suppress all kinds of inflammation. So thymosin has a real place.
[55:36] Now there are two peptides that regrow tissue that are being used. One is called BPC-157 — it's called Body Protection Compound, and it grows tissue. You can take it orally, by injection, or nasally. And then the last one is called ARA-290, which is specific for nerve growth.
[56:05] These peptides, in my opinion, should be used in steps. People with arachnoiditis need to first get some pain relief and get on some anti-inflammatory agents. But right behind them, these peptides may get you some permanent relief — maybe 30%, 50% reduction in pain. I haven't seen anybody totally cured yet, but we're getting some people who are reducing their symptoms dramatically with the peptides. I recommend that these peptides be tried for anywhere from 2 to 3 weeks. After that, don't bother. If they don't work within 2 weeks, throw them in the trash — don't waste your time and money. But a peptide, if it's going to work, it's going to work in the first 10 days. I highly recommend them.

[57:15] Dr. Linda Bluestein: That's great. And what about finding safe sources of these peptides or the best possible formulations? What do you recommend to people for that?

[57:24] Dr. Forest Tennant: Well, that's a tough one because there are a lot of companies that make them now. You look on the internet and all of a sudden you've got 6 companies trying to sell you a product. I think the best thing you can do is to talk to somebody who's taken them, if you can, as to what company they're using and what price they're paying. It's very frustrating, and people ask me all the time what my favorite company is. I don't have one because I don't know who's the best. I do think that most of the companies making the peptides are reputable and seem to have good products. And I honestly can't tell you I have a single company on a blacklist, because I've not gotten enough complaints about any one company to say don't buy from them. So you're kind of on your own, but if you can talk to someone else, please do so.
[58:19] Which reminds me of something else we haven't talked about. When you get into things like EDS and arachnoiditis, these are rare diseases, and you want to try to find a buddy. I'm a great believer in trying to have people with these diseases have some social contacts — they ought to have at least one friend who has the disease that they can talk things over with. I highly encourage people to try to join social media or connect with neighbors or anybody they can who has the disease. And let me challenge anybody with the disease who's listening to this: you also need to be a friend. Reach out to somebody. Be a friend to someone else who has the disease. There aren't many people with it, and we've got to support each other.
[59:10] And again, when it comes to asking about what products to try — see if you can find a friend. This not only applies to peptides, but if you want to try kratom or marijuana, talk to a friend to find out if someone has tried these things, so you don't get taken for either a clinical reason or a financial reason.

[59:34] Dr. Linda Bluestein: I agree that a lot of times we get isolated and feel like we're alone. And that's part of why I do this podcast, because I know that not everybody can afford to go to a specialist, and it's so important. And your bulletins that you put out on your website are so fabulous. We're going to talk about where people can learn more, because I'm sure there are a lot of people listening to this whose minds have just been blown. We're going to need to wrap up soon, but before we do, I would love for you to share one or two of the most common myths that you hear about arachnoiditis that you want people to be aware of.

[1:00:10] Dr. Forest Tennant: Sure. The common myth is that you can deal with adhesive arachnoiditis without medications. That's a no-no. I know that everybody likes integrative medicine, holistic medicine, multidisciplinary treatment, psychological therapies — those are not going to work for adhesive arachnoiditis. You need what's called a 3-component medical protocol. One is to suppress pain. Two is to suppress inflammation. Three is to regenerate tissue. You've got to use medical medications to do this. The idea that you can deal with adhesive arachnoiditis as a psychological problem or one of just bad physiology is not true.
[1:01:03] And other myths about it are that treatment is short-term, and that you can find that one specialist who's going to cure you. Unfortunately, one has to plan on this being a lifetime disease. It doesn't work that way. It's a lifetime disease, and you're going to have to put a lot into it on your own and work with your local doctors to put together a program. Don't look for that magic doctor or that magic bulletin, because they don't exist. Those are at least two of my big gripes.

[1:01:51] Dr. Linda Bluestein: And I have one other question before we move on to our hypermobility hack. What can patients do if they're listening to this and they strongly suspect that they have arachnoiditis, but they have had imaging that has been read as normal? Maybe the imaging was also done without contrast, and you've explained that using contrast is important — but what should they do if they've had imaging read as normal and they strongly suspect arachnoiditis?

[1:02:18] Dr. Forest Tennant: Well, one thing they can do is contact our foundation. Contact Arachnoiditis Hope. We hear from people like that all the time and we don't mind. If someone suspects that they have arachnoiditis and their doctors have said no, either get in touch with one of the groups who have an advocate to help you find a doctor or get a diagnosis, or contact our foundation — that's what we do all the time.
[1:02:48] But if you do suspect you have it, don't just sit there and do nothing. Keep searching until you get the answer you need. And every once in a while I hear, "Well, my doctor doesn't want to do this or that, my doctor doesn't know this." The answer is: get a new doctor. It may take you a while, but start searching. They're out there.
[1:03:10] And I would say one thing about American doctors right now: I'm quite proud of them. I'm quite proud of the nurse practitioners. There's not a week goes by that I don't hear about a new nurse practitioner, PA, or MD who's coming in to help a patient. They're getting the call. They're coming forward. The treatment of these diseases — yeah, I'm looked at as this high-powered specialist, but a nurse practitioner can do what I can do, and I can teach her in 10 minutes. The treatment is simple, but you just have to have the protocol in front of you and do it.
[1:03:53] This idea that America doesn't care about rare diseases is not true. You just have to bring the material to the doctors, to the nurse practitioners, and try to get them involved. And they are coming forward. I'm very pleased to see that today I've got a list of doctors I can talk about. Five years ago, I didn't have anybody. And now we've got a lot out there who are willing to help and are helping, and we're going to get a lot more. So this is not hopeless at all, both on the delivery side and on the medical side. We're getting better every day.

[1:04:29] Dr. Linda Bluestein: That's wonderful. And I love that your nonprofit is called Arachnoiditis Hope. I wrote a series of articles called Hope for Hypermobility. I think it's so important for people to know that there is hope, that there are treatments.

[1:04:43] Dr. Forest Tennant: Absolutely. One other thing in closing — there is one other treatment I do recommend: the Holy Bible. People can stick with their spirituality through all this too. That'll help get you through. These are terrible diseases and you're going to have terrible times. So stay with your God and stay with your religion.

[1:05:06] Dr. Linda Bluestein: Yeah, whatever your higher power — that can help with a lot of things, whether it's your mental health or your physical health. There are a lot of studies that show that it can make a huge difference in outcomes.
[1:05:18] Before we wrap up, we always end with a hypermobility hack, which is usually a quick win. We talked about what symptoms to be looking for, but are there also some red flags that clinicians should be aware of — maybe urinary symptoms, bowel symptoms — things that mean there's a rapidly accelerating case of arachnoiditis?

[1:05:43] Dr. Forest Tennant: Again, you want to go back to the simple thing: back pain that's just not going away despite chiropractic, physical therapy, Bengay, or any other simple treatments — it's just not going away. That's the person you want to suspect.

[1:06:02] Dr. Linda Bluestein: Excellent. Before we close, can you tell us where we can learn more about your fabulous work and where people can find you online? And if you're doing any special projects, feel free to mention them now too.

[1:06:17] Dr. Forest Tennant: Sure. We have Arachnoiditis Hope. If you just search arachnoiditis on your computer, it'll go right to our site because we're about the only ones out there. Also, I send out a weekly one-page bulletin, and my goal is to have people who have the disease keep working to build a program. One other message: don't assume that what you're doing today is the best. Keep working to build a better program as you go. I will try to help that along.
[1:06:51] Our website, you can look up to see how you can get ahold of us. You can write us a letter. We try to respond to every single person who contacts us, because after all, this is a rare disease — it's not as if there's one walking down every street. You're a rare bird out there, and we're here to help and above all give you some hope.

[1:07:13] Dr. Linda Bluestein: That's amazing. And I have a number of patients who have reached out to you before they found me, and they shared screenshots of messages you've sent back — you've looked at their imaging and —

[1:07:22] Dr. Forest Tennant: Yeah. Keep in mind your name is on my list.

[1:07:27] Dr. Linda Bluestein: That's great. I love treating arachnoiditis patients. I feel terrible that they're dealing with it, but I like treating them because I know it can be a struggle for sure. Well, thank you so much for chatting with me today. You're such a wealth of knowledge, and it's so important for people to have this information because this is something that we can do something about. So thank you for taking the time to talk to me today.

[1:07:48] Dr. Forest Tennant: The pleasure has been all mine, and I hope it helps.

[1:08:56] Dr. Linda Bluestein: Thank you so much for listening to this week's episode of the Bendy Bodies Podcast. If you'd like to go deeper, I share additional education, clinical insights, and resources in my newsletter, The Bendy Bulletin, which you can find on Substack at hypermobilitymd.substack.com. You can also help us spread the word about connective tissue disorders by leaving a review, sharing this episode, or sending it to someone who needs it. These small actions truly make a difference in raising awareness about conditions that are still widely misunderstood.
[1:09:24] And don't forget, full video episodes are available every week on YouTube at Bendy Bodies Podcast. As many of you know, I offer one-on-one coaching and mentorship for both individuals living with connective tissue disorders and people caring for them. You can learn more about these options on the services page at hypermobilitymd.com. You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, X, and LinkedIn, all at Hypermobility MD.
[1:09:47] As part of our collaboration with the UVA Ehlers-Danlos Syndrome Center, we also want to share some of their helpful resources. For questions or appointment inquiries, you can contact the UVA EDS Center at [email protected]. Again, that's the letter R as in Robert, UVA EDS Center at uvahealth.org. You can find answers to common questions at uvahealth.com/support/eds/FAQ.
[1:10:17] Our incredible production team is Human Content. You can find them on TikTok and Instagram at Human Content Pods. As you know, we love bringing on guests with unique perspectives to share. However, these unscripted discussions do not reflect the views or opinions held by me or the Bendy Bodies team. Although we may share healthcare perspectives on the podcast, no statements made on Bendy Bodies should be considered medical advice. Please always consult a qualified healthcare provider regarding your own care. For more information about the Bendy Bodies Program disclaimer and ethics policy, submission verification and licensing terms, HIPAA release terms, or to get in touch with us, please visit bendybodiespodcast.com.
[1:10:52] Bendy Bodies Podcast is a Human Content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.