Subscribe to The Podcast by KevinMD. Catch up on old episodes!

Join Francisco M. Torres, an interventional physiatrist, and Felix S. Linetsky, a pain management physician, as they delve into the world of chronic pain and its often misunderstood connection to Ehlers-Danlos Syndrome (EDS). They discuss the challenges of diagnosing and treating EDS, the limitations of traditional therapies, and the potential of regenerative injection therapy (RIT). Francisco and Felix shed light on the promising yet understudied approach of RIT, offering hope to those who have struggled with chronic pain.

Francisco M. Torres is an interventional physiatrist specializing in diagnosing and treating patients with spine-related pain syndromes. He is certified by the American Board of Physical Medicine and Rehabilitation and the American Board of Pain Medicine and can be reached at Florida Spine Institute and Wellness.

Felix S. Linetsky is a pain management physician.

They discuss their KevinMD article, “Finding hope and relief: a physical therapist’s journey with chronic pain and Ehlers-Danlos Syndrome (EDS).”

The Podcast by KevinMD is brought to you by the Nuance Dragon Ambient eXperience.

With a growing physician shortage, increasing burnout, and declining patient satisfaction, a dramatic change is needed to make health care more efficient and effective and bring back the joy of practicing medicine. AI-driven ambient clinical intelligence promises to help by revolutionizing patient and provider experiences with clinical documentation that writes itself.

The Nuance Dragon Ambient eXperience, or DAX for short, is a voice-enabled, ambient clinical intelligence solution that automatically captures patient encounters securely and accurately at the point of care. Physicians who use DAX have reported a 50 percent decrease in documentation time and a 70 percent reduction in feelings of burnout, and 83 percent of patients say their physician is more personable and conversational.

Rediscover the joy of medicine with clinical documentation that writes itself, all within the EHR.

VISIT SPONSOR → https://nuance.com/daxinaction

SUBSCRIBE TO THE PODCAST → https://kevinmd.com/podcast

RECOMMENDED BY KEVINMD → https://kevinmd.com/recommended

GET CME FOR THIS EPISODE → https://earnc.me/ur4nk9

Powered by CMEfy.

Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Get CME for this episode by clicking on the CME link in the show notes. Today we welcome Francisco Torres and Felix Linetsky. Francisco has been on the show many times; he’s an interventional physiatrist. Felix is a pain management physician. Together they wrote the KevinMD article “Finding hope and relief: a physical therapist’s journey with chronic pain and Ehlers-Danlos syndrome (EDS).” Felix and Francisco, welcome to the show.

Francisco M. Torres: Thank you, Kevin, for having us.

Kevin Pho: So I’m just going to ask each of you to briefly share your story and journey to where you are today. Francisco, why don’t you go first?

Francisco M. Torres: Yes, thank you, Kevin. I am an interventional physiatrist. I have been in the area of Clearwater, Florida, for the last 30 years. Basically, my clinic is musculoskeletal; that’s what I did my fellowship in. So I deal a lot with pain management and do interventional work.

My colleague here, Dr. Felix Linetsky, I met many, many years ago at a meeting. As a matter of fact, he’s a professor, and his expertise is more with collagen tissue disorders. The main thing he does is regenerative injection therapy, and that’s our connection. When we have cases that are complicated with pain management, he does different approaches, which are cutting edge in terms of the treatment, that can help the patients.

Kevin Pho: And Francisco, how common is it that you see Ehlers-Danlos syndrome patients in your practice?

Francisco M. Torres: It’s very interesting; that’s why we decided to write the article. I thought it was not that common. I thought it really was something that affected maybe 2 to 5 percent of the population. But I started seeing more patients, particularly younger, athletic patients who were involved in car accidents or injuries and developed this chronic pain. People were saying, “Well, what’s wrong with them? They’re very flexible. They look athletic.” And they say, “That’s why I recommend doing stretching.” And these people are complaining of pain. So it made me start looking into it, and that’s where the article came from.

I remember meeting this physical therapist who is well known in the community, and she told me her story. She went into physical therapy because she found a lot of pain in the family, a lot of chronic injuries and back pain, and she decided to see if physical therapy could help. But then she became frustrated with the fact that it was not helping that much, and then she developed symptoms very similar to her family’s. To make the story short, she decided to get tested, and after seeing so many specialists, they finally came up with a diagnosis of Ehlers-Danlos syndrome.

After that, there was a lot of frustration until she came to my clinic and we talked about it. I remember Dr. Linetsky treating hypermobility syndrome many times, so I decided to refer her to him. And I’m telling you, she was very happy. To this day, 20 years later, she’s still very functional and very active in the community.

Kevin Pho: All right, we’ll go more into that case in a little bit. But Felix, just briefly share your story and journey to where you are today.

Felix S. Linetsky: Well, my story is very simple. I was at the edge with my neck pain. I had post-traumatic cervical instability, so I went to a colleague who treated me with what at that time was called sclerotherapy, and I immediately became better. I became better, but three days later the pain returned. So I came to him and said, “Please inject me again.” He said, “But the book says only once every three to four weeks.” I said, “Well, I flew a long time to see you, so please do it again.” And he did it, and it lasted me for half a year.

Then I continued the treatment with other physicians, and then I started practicing this methodology. At the beginning, it was called sclerotherapy, then it was prolotherapy, and then I gave it the name that is more appropriate, regenerative injection therapy, which encompasses all of the common new biologic injections as well as the old chemical injections. And this is what I am practicing.

Kevin Pho: All right. And just to give some context before we go more into your story specifically with Ehlers-Danlos: Regenerative injection therapy, Felix, what typical conditions can you use this for?

Felix S. Linetsky: You basically treat people with joint hypermobility and instability, and the pain arising from those conditions. This includes cervical facet syndromes, whiplash injuries, cervical rib syndrome, neck-shoulder syndrome, shoulder-neck syndrome, as well as low back pain.

But the beginning of this whole issue goes back to 1937, when Dr. Schultz first treated hypermobility and instability of the TMJs. And within almost two months, Dr. Gedney published an article where he was treating unstable knees and sacroiliac joints with this methodology. Of course, it was very, very aggressive treatment at that time, and those medications are no longer available. So currently we are using more available things, like hyperosmolar dextrose mixed with lidocaine, which stimulates the production of new collagen fibers, and this is what creates the stability of all the joints that have ligaments around them. It also addresses the fascia, the superficial and deep fascial issues, which are also collagenous tissues.

Kevin Pho: All right, Francisco, you and Felix wrote the KevinMD article “Finding hope and relief: a physical therapist’s journey with chronic pain and Ehlers-Danlos syndrome (EDS),” and you talked a little bit about that case earlier. So, Francisco, tell us more about this case and story.

Francisco M. Torres: It represents what happens many times. I think the average number of specialists that a patient sees before finally being diagnosed is at least 20. And each one of those 20 specialists is going to recommend some treatment, and I think that was the frustration: You’re treating a condition that particularly affects the connective tissue, the ligaments, with modalities like bracing and exercises. Some people even go with steroid injections, and as a matter of fact, I saw several patients being treated with ablations, which we know are not going to touch the collagen tissue at all. I think the more aware we are that we can identify this condition, the more we can offer the right treatment and eliminate all this pain and suffering that they get frustrated with.

Sometimes, you know, the issue with Ehlers-Danlos is that there are 13 varieties, and the only one for which we have not identified the gene is the most common one, the hypermobile type, type 3, and that’s the one that we normally see in the clinic. So I think we need to be aware that in a healthy patient who, after a whiplash injury or another injury, starts having pain that doesn’t respond to any of the conventional treatments, before we say there’s nothing we can do, there is the possibility of regenerative injection therapy.

Felix S. Linetsky: Current literature actually suggests that hypermobile joint syndrome, or joint hypermobility syndromes, are the same as hypermobile Ehlers-Danlos syndrome, because they don’t have a genetic marker. This particular treatment, going back to the 1930s, was quite often employed by many physicians, but subsequently, with the development of steroid injections, it was forgotten. However, there are still, I would say, about a thousand physicians around the United States employing these modalities.

Kevin Pho: Felix, take us into your clinic. What is the typical presentation of an Ehlers-Danlos syndrome patient who would be appropriate for regenerative injection therapy?

Felix S. Linetsky: The typical patient comes in with upper back or thoracic, lower back, and hip or shoulder issues. Obviously, in the first visit you cannot address all of the above areas, so I usually divide it in half. Either I will do the upper quarter, such as the neck and thoracic area, or the lower back, depending on which symptoms of pain are predominant and, on palpation, which areas are more tender.

For example, there is a recent lady who came in after three years under an orthopedic group. She had three sessions of cervical facet denervation with radiofrequency, which didn’t work. The surgeon who was treating her retired and suggested she go to a pain management specialist. Apparently the guy had listened to one of my lectures and said, “No, no, you’re not my patient. Go to Linetsky; he will deal with it.”

So she came in, and in the first treatment session I asked her which was worse, the neck or the lower back. The lower back was worse, so at this session I injected the interspinous ligaments, and this includes the superficial fascia attached to the interspinous ligament. I injected the posterior sacroiliac ligaments, I injected the lateral aspect of the iliac crest, I injected the greater trochanteric area, and I also, with ultrasound guidance, injected solution into the hip joint. The first time, I didn’t know how she would react, so I only used 12.5 percent dextrose.

Within a month she came back, and we addressed the cervical area. At that time I knew that she was tolerating it quite well, so I went all the way to 25 percent dextrose with lidocaine, which brings the lidocaine to 0.5 percent in the final injectate. So I injected all the cervical facet joint capsules bilaterally. I injected the iliocostalis thoracis insertions from the second to the fourth ribs on the left side, because this is where her predominant symptomatology was. And I injected the interspinous ligaments and the costotransverse joints from C7-T1 and T3, T4, and T5.

She tolerated it quite well, and then she came the third time within six weeks, and this time she started talking like a storm. Initially she was very much to herself. She started saying how much better she is and how much work she can tolerate on the computer, because she’s a lawyer working for a local sheriff’s office, and she types by herself; she doesn’t have an assistant. And this was one of the major tasks, with the headaches. Actually, she had cervicogenic headaches with this instability of the cervical zygapophyseal joints, and obviously the radiofrequency denervation didn’t help her.

Kevin Pho: And Francisco, you mentioned that there are a lot of other modalities that you see in various pain management clinics when it comes to Ehlers-Danlos syndrome patients. What type of patients would you typically refer to Felix to consider RIT?

Francisco M. Torres: Normally, anyone who has any type of ligament dysfunction, and that doesn’t have to be Ehlers-Danlos. It could be chronic dislocation. Here in Florida, we see a lot of the, you know, whiplash type of situation. It doesn’t necessarily have to be related to an accident or a car; it could be just anything that happens in the house.

But one thing that I want to mention is that the typical patients who have ligament problems are normally the ones who tell you. You can check: There’s a way of grading this in terms of the flexibility of the thumb, the little finger, and also the elbows, the knees, and how far they can reach down. So we check for that type of hypermobility of the joints, and then when I see that it is associated with pain, I tend to refer those patients to Felix. The patients have, like, clicking of the joints during normal activity. This is suggestive of laxity of the capsule and the capsular ligaments.

Kevin Pho: And Felix, any potential complications from the procedure? Any patients for whom you should not consider RIT?

Felix S. Linetsky: Well, you have to be extremely careful at the upper cervical segments. Therefore, C1 I don’t inject in the office; I usually refer to the guys who do C1 under fluoroscopic guidance. However, starting from C2, I inject the lateral aspects of the spinous process of C2, which is very easily palpable. I inject the rectus capitis posterior major insertions to the occipital bone and the obliquus capitis inferior.

I also have had some complications, but very rare. The last one I had was maybe 15 years ago. When you do the ribs, and specifically the attachments of the iliocostalis, and the patient is rather big, the needle slips and you can have a pneumothorax. But otherwise, this is self-limited. I had about six pneumothoraces over the 31 years I’ve been doing it, and all of them were self-limited. Not one ended up with a chest tube.

Francisco M. Torres: One thing that came to mind that I want to remind people is that with Ehlers-Danlos particularly, these patients have a lot of autonomic dysfunction associated with the condition. So they can have what people normally call vasovagal episodes, or orthostatic hypotension, and I’m very careful. I told Felix something; I tell him, “Look, let’s start slow,” because if they get a vasovagal episode or POTS, then it’s a bad experience. So I think that you need to start kind of slow, because there are so many injections involved, and that would be something to keep in mind.

Kevin Pho: We’re talking to Francisco Torres and Felix Linetsky. Francisco is an interventional physiatrist, and Felix is a pain management physician. Together they wrote the KevinMD article “Finding hope and relief: a physical therapist’s journey with chronic pain and Ehlers-Danlos syndrome (EDS).” Now I’m going to ask each of you for the take-home messages that you want to share with the KevinMD audience. Felix, I’m going to start with you.

Felix S. Linetsky: Well, one has to realize that one injection will not do the trick. It has to be multiple injections at the same session, and all of the areas relevant to the area of pain have to be addressed if they are painful to palpation.

The second thing is that there is hope for these people, and there is real hope. Unfortunately, it’s not well documented in the recent literature. However, there is some literature, specifically mentioning dislocations in hypermobile Ehlers-Danlos syndrome, that came from New Zealand. The guy was using chemical sclerosants like polidocanol and Sotradecol, and in his series of 80 patients, all of them got better. He’s a rheumatologist by main specialty.

Kevin Pho: And Francisco, tell us some of the take-home messages that you want to leave with the KevinMD audience.

Francisco M. Torres: I would say that if you identify the condition early, there’s hope for these people. This is a typical patient who goes without the proper care, and I know that we have labeled them as, you know, emotionally unstable, because they have this disproportionate amount of pain and they happen to look very healthy. So just be aware that there is a condition like that, and there is treatment with which we can modify the disease.

Kevin Pho: Francisco and Felix, thank you so much for sharing your time and insight. Thanks again for being on the show.

Francisco M. Torres: Thank you.

Felix S. Linetsky: Thank you.