The Tragic Connection Between Ehlers-Danlos and Arachnoiditis

By Pat Anson, PNN Editor

Before his retirement from clinical practice, Dr. Forest Tennant treated hundreds of patients suffering from intractable pain at his clinic in West Covina, CA. Many of those patients had adhesive arachnoiditis (AA), a chronic inflammatory condition that causes nerves in the spinal canal to form adhesions that “glue” them together.  

Over time, Dr. Tennant began to realize that many of his AA patients also had Ehlers-Danlos syndrome (EDS), a genetic disorder that weakens muscles, joints, skin and organs by disrupting the production of collagen. How could so many pain patients have both diseases?

In his latest book, "The Ehlers-Danlos / Arachnoiditis Connection," Dr. Tennant explains how someone with EDS can develop arachnoiditis after an invasive spinal procedure.

This interview with Dr. Tennant has been edited for content and clarity.

PNN: You were treating patients with arachnoiditis and discovered that many also had Ehlers-Danlos?

Tennant: That’s exactly what happened. I was treating intractable pain, which was my specialty, and adhesive arachnoiditis had become the number one reason for a referral to my clinic. And I found that at least half or more of them had EDS. These discoveries were a total surprise.

EDS and arachnoiditis are considered rare diseases, but seem to be increasing in the last couple of decades, both by actual disease incidence as well as the ability to diagnose cases that previously went undetected.

PNN: Are most doctors unfamiliar with these two disease?

Tennant: Absolutely. We actually heard yesterday about a doctor at a spine and pain center who had never heard of arachnoiditis. I don't know how this is possible. Medical practice has become so caught up and so compartmentalized that a very good institution or excellent physician can be totally left in the dark about something.

PNN: What is the connection between EDS and arachnoiditis?

Tennant: The primary relationship is collagen deficiencies. The cauda equina nerves and the arachnoid membrane that surrounds them in the spinal cord are very collagen laden. The number one reason why EDS patients develop intractable pain is not arachnoiditis, but small fiber neuropathy. EDS has its own autoimmune disease component.

What's been happening is that EDS patients often develop back problems due to the lack of collagen, and then they're operated on or have epidural injections. That doesn't cause it, but it accelerates the problem.

If you look at the number of surgeries, it’s just immense. There’s an incredible number of surgeries that have been done on people with a collagen deficiency disease. No wonder they've developed critical complications.

PNN: Are surgeons unaware that the patient has EDS?

Tennant: Totally unaware. One of the reasons I wrote this book is that anyone who has severe back pain that hasn't responded to standard therapy, such as chiropractic care, physical therapy or anti-inflammatory drugs, should be evaluated for both arachnoiditis and EDS. After 90 days, if you haven't recovered, you need to be evaluated for these diseases.

PNN: Can someone with EDS develop arachnoiditis without some triggering event or invasive procedure?

Tennant: It doesn't look like it, no. There's got to be some something to generate inflammation in the spinal cord. We've had no one who developed arachnoiditis who had not had spinal procedures. All of them had invasive procedures, whether it was epidural injections and/or surgery. In the book you can see the amazing number of interventions that they've had.

Adhesive arachnoiditis is a disease in which a whole lot of things have to go wrong. You don’t just stand on the street corner and catch this disease. A whole sequence of events has to occur. And they’re all bad.

One of my messages in the book is that children who are double jointed and who have hypermobility, these things have to be taken seriously. They can't just be ignored or seen as some kind of oddity. They may have a serious condition. Children need to be identified with EDS. And they need to be on a prevention program to stop the disease from progressing.

PNN: Is there any way to treat EDS?

Tennant: First of all, try not to cause further damage. A child with hypermobility, I mean the idea that they're going to be a gymnast or they're going play football, I hate to say it, but that’s going to cause more damage to their joints and aggravate the disease.

They also probably need to be on some kind of diet with collagen, a very healthy diet with protein and collagen. A lot of parents are starting to have their EDS child at least take a multivitamin once a day. Some are using collagen supplements and some are using low dosage hormones like colostrum.

My book is about prevention. AA can be prevented. And when the EDS person starts developing things like carpal tunnel syndrome or dysautonomia disease, these patients need to be aggressively treated and monitored for spinal canal problems and treated without invasive procedures, if at all possible.

Once you have the two diseases together, it’s catastrophic. You're probably going to have the worst pain imaginable. These people need aggressive pain treatment. I'm hoping that doctors will get the message that when someone has these two diseases, you don’t worry about the CDC opioid guidelines or anybody else's guidelines. You need maximum medical treatment for pain.

We've got people right now with these two diseases and some doctor is giving them a Butrans patch (buprenorphine) or Motrin for pain relief. These people have to be very aggressively treated. Otherwise, they're going to be bed-bound and die a miserable death. Suicides are very common.

Part of my goal here is to get doctors to recognize both diseases. These are the worst of the worst. I've never seen any cancer patients that were any worse than this.

PNN: If you have EDS and arachnoiditis, is that a hopeless situation? Can you have any quality of life?

Tennant: People with both diseases need palliative care and “Brompton cocktail” type medications. In our studies, about two-thirds of them can get some relief. But they were also on pretty aggressive treatment programs. You know, multiple opioids and benzodiazepines. So, it's not hopeless.

PNN: Thank you, Dr. Tennant.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain. Readers interested in learning more about his research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can subscribe to its research bulletins here.

To order "The Ehlers-Danlos / Arachnoiditis Connection" and other books of interest to the pain community, visit PNN’s Suggested Reading section.

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.