21 Yrs w/o a diagnosis!
Cervical Pain _ Cervical Arachnoiditis--- Dr. Tennant's Perplexing & Concerning Research Efforts | UNBELIEVABLE TRUE HOSPICE TRAGEDIES
Cervical Pain _ Cervical Arachnoiditis--- Dr. Tennant's Perplexing & Concerning Research Efforts | UNBELIEVABLE TRUE HOSPICE TRAGEDIES
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00:00:00Welcome everyone to our second episode of season four of Doc Talks with Forrest Tennant and
00:00:08friends. We are so happy you can all be here with us tonight and we look forward to a special night.
00:00:14We have a great special guest, Ms. Harris, and looking forward to this evening. Thank you so
00:00:20much, Dr. Tennant. It's all yours. Thank you. Yeah, thank you, Jamie. And Dr. Ibsen and I
00:00:26welcome the opportunity to be with you again this evening. We know we have a guest with a rare
00:00:32disease and a terrible pain problem and I think we'll find a lot of interesting things from her.
00:00:38What I want to do tonight, and this is our second session here in this run of
00:00:45videos, I want to talk about a research effort that I'm doing and I'm very perplexed about and
00:00:54very concerned about and I'm looking for some answers. About seven years ago, we established
00:01:02the research and education project on arachnoiditis. At that time, we knew there was
00:01:12something called adhesive arachnoiditis which was the major problem that we were looking after
00:01:20and that's primarily a disease of the lumbar sacral spine.
00:01:26There is something called non-adhesive arachnoiditis and we think this may be a major,
00:01:34major problem as it involves the cervical neck. Now, what we're going to talk about tonight
00:01:43is what I know and where we are at in looking at what I call one of the two
00:01:50worst pain problems, unaddressed problems if you will, in the nation. And that is
00:01:57cervical neck pain and we've already addressed the other one and that is pudendal neuropathies.
00:02:04These two conditions have been totally recalcitrant, totally resistant almost to
00:02:13any pain relief. And a matter of fact, if you go to medical meetings, you talk to other doctors,
00:02:19you talk to anybody, nobody wants to talk about the terrible problems of neck pain or pudendal
00:02:26neuropathy pain. And I want to start off right now by telling you how I got into this very simply.
00:02:38My clinic was referred a number of people with neck pain that had surgeries, fusions,
00:02:46been diagnosed brachial neuropathy, thoracic outlets, all kind of neck diagnoses.
00:02:54And most of it had surgeries in one thing or another. And they were referred because they
00:03:00had failed every pain treatment you can imagine, including high-dose opioids.
00:03:06And I want to start off by telling you the thing that got me so interested in neck pain
00:03:12is that quite frankly, we prescribed two and three potent opioids to some people with neck
00:03:20pains and got almost no pain relief. Just couldn't, didn't seem to work. Couldn't find
00:03:27anything that worked. Topical medications didn't work. Injections didn't work. Epidurals didn't
00:03:33work. Surgery didn't work. In other words, I want to bring this out because I'm well aware
00:03:41of cases right now in which neck pain just could not be resolved. And I guess that is no secret.
00:03:49Anytime you have somebody decide to take their own life because of a pain problem,
00:03:54it sticks in your mind. And I've recently had a very, a patient I've tried to help for years
00:03:59finally went to Switzerland to take his own life because he had tried everything imaginable,
00:04:06including the highest dosages of opioids. I'm talking about 3,000 and 4,000 milligram
00:04:11equivalents a day with fentanyl patches, injectable diluted, the worst. In other words,
00:04:17there was no restriction of pain medications. It just didn't work. So why? Well, I want to tell
00:04:25you right now, I'm not certain. Okay. That's why I'm bringing it up tonight. I'm bringing this up
00:04:31for one reason. If anybody out there watching this has any ideas, any novel thoughts, any new
00:04:40treatments to help people with certain neck pain, let's hear it. Because I'm just, let's be honest
00:04:48about it. We doctors don't know what to do about this. Okay. There are patients that we just don't
00:04:56know. Just nothing seems to work. Now I'm going to try to take you through some steps as to what I
00:05:03do know about it and what we have been researching. Okay. And I'm going to show you an MRI and give
00:05:11you some thoughts about where I think we are at. Now, first off, I do want to tell you that these
00:05:19people who have had this recalcitrant neck pain have a standard looking MRI. Now, one of the
00:05:28advances has been is that we've at least been able to see what's in that neck. And I'm going to,
00:05:35Pat, I'm going to show you a diagram or a little bit, but I just wanted to show you here real
00:05:41quickly an MRI. And I doubt if you could see it too well, but what you have here is the vertebra,
00:05:51the spinal canal, and the white there is either the canal cover or spinal fluid. Now, in a few
00:06:00minutes, I'm going to show you a big diagram and what we're looking at here. What I want you to
00:06:06know for right now, however, is that these people who have had this terrible neck problem show
00:06:14multiple discs, not just one, but they show multiple discs that have degenerated
00:06:21and are pressing upon the spinal canal. Okay. Now, tonight we're going to take this copper pipe as
00:06:28our spinal canal. Okay. And it's got a hollow center. So, we're going to refer to this in a
00:06:35couple of minutes so I can at least tell everybody where we're at and what we know and maybe some
00:06:42directions that our research is trying to go. Okay. Now, to get us started,
00:06:50we're going to take a basic anatomy lesson here for real quick, real simple. The brain and the
00:06:58spinal canal is really consists of three layers. One is really doesn't count as the Pia matter,
00:07:04but really two layers. The outside, now here's this pipe here now. Okay. The outside tough layer
00:07:11is called the dura. Inside layer is the arachnoid. And it goes either by arachnoid lining,
00:07:18arachnoid layer, or it's traditionally been called the arachnoid membrane.
00:07:25Now, it's called arachnoid because in the 1600s, I think the Dutch, after the microscope was
00:07:30invented, could see that it kind of looked like a spiderweb. And it is. It's very thin. It looks
00:07:36thread-like. It looks just like a spiderweb. And it does have a blood supply, but it also has a lot
00:07:42of very fine nerves just loaded with collagen. And it's very painful if you tamper with it,
00:07:49as a lot of you know. So, what you have here is a spinal column that's hollow like a pipe.
00:07:55Now, this little pipe is about a half inch across and the spinal canal is about a third of this. So,
00:08:01it's a small pipe. But nevertheless, it's got an outer layer called the dura and an inner layer
00:08:08called the arachnoid. Now, in 1873, they actually defined arachnoiditis in medical dictionaries.
00:08:181873. And guess what? The definition hadn't changed. Now, the definition of arachnoiditis in 1873
00:08:26was simply inflammation of the arachnoid membrane. Okay? So, if you find a medical dictionary that
00:08:33dates clear back to 1873, you'll see under arachnoiditis, inflammation of the arachnoid
00:08:39membrane. Now, what's interesting for you to know, and here's our kicker, how did they know that in
00:08:471873? They figured it out from autopsies. Okay? One of our problems today, you can't go around
00:08:56biopsying the arachnoid. Okay? We can't take it out. Otherwise, you'd be crippled. So, you can't
00:09:04take out the arachnoid liner or you can't biopsy it. You can't tamper with it. Okay? So, consequently,
00:09:13we, when it's adhesive arachnoiditis, now, in the lumbar sacral spine, these are the
00:09:22cauda equina nerves clump up or go into a little mass or group, and we can see it.
00:09:29We cannot see plain arachnoiditis on the MRI. Okay? In other words, we don't have a specific
00:09:40test for it. We sort of do what doctors call a diagnosis by exclusion. We exclude everything else
00:09:48that may be causing the pain, and we make that diagnosis of cervical arachnoiditis
00:09:55when we don't have any other cause of this. But the MRI is indirectly suggestive
00:10:04of arachnoiditis of the cervical neck. And I want to tell you here right now,
00:10:09it is my opinion, and I hope a whole lot of people challenge me. I hope a whole lot of people
00:10:15disagree with me because I'm floundering about this. Okay? It is my opinion that people out there
00:10:22who are not getting a relief of their neck pain is due to plain arachnoiditis of the arachnoid
00:10:32membrane in the neck. Okay? And they can't see it on an MRI, and so no one wants to diagnose it.
00:10:42I'm diagnosing it on a research basis as a hope to try to have a direction to do something for
00:10:50these poor folks. And I know some of you out there are shaking your head saying, oh yeah,
00:10:54you know what I'm talking about. Okay. Now, let's go a little further, if I might.
00:11:03First off, how do people come to doctor's attention with this neck pain?
00:11:13Well, a lot of times early on, they'll come to a doctor and they've got numbness in their hands.
00:11:20Maybe they've got a feeling in their hands or their arm, maybe a weak wrist. And the doctor
00:11:26will then take an MRI and find the disc has slipped or something has gone wrong in the neck,
00:11:31and that's fine. And we can take care of a lot of that. But, and a lot of people who end up with
00:11:40this condition start off with a condition of brachial plexus neuropathy or thoracic outlet
00:11:48syndrome. And that's sometimes kind of a wastebasket diagnosis because the doctors don't
00:11:53know what else to call it. Okay. But I do want to tell you that
00:12:01what we have learned in research is something about this MRI picture.
00:12:10Now, here is what I want to get across to people. Here is my drawing.
00:12:15Okay. And this is not a very good looking head, but you can see an ear, nose and mouth.
00:12:24What we have here are discs. Okay. I've listed four of them. And there's a disc in between each
00:12:32one. Okay. Now, discs are soft tissue, they're collagen, and they can become inflamed by a lot
00:12:43of different or one or two different mechanisms, which I'll explain in just a minute. But what we
00:12:49see in these people with this terrible neck pain is that not just one, but three or four
00:12:56discs are pressing on the spinal canal. Okay. They've degenerated and they're pushing on the
00:13:02spinal canal. Okay. They're pushing on the pipe. Now, what are they pushing on? They're pushing
00:13:09on the dura and the arachnoid layers. And on the MRI, you can see where it is almost disappeared
00:13:17because the disc is pressing so much. Now, if the disc presses in far enough, the surgeons like to
00:13:23call that stenosis. But if it doesn't get too far in, they just don't know what to call it. They
00:13:29don't call it at all. They just say the disc is pressing on the spinal canal. But here is what I
00:13:35want everyone to know. You don't just go walking around planet Earth with two or three or four
00:13:42cervical discs that are degenerating and pressing on the canal without having some serious
00:13:51degenerative disease causing degeneration of the discs. You just don't get that because you got
00:13:57hit playing football one time or fell off a ladder. Now, you might get one disc or maybe two.
00:14:03But when you start getting three and four discs that are degenerating, that's a metabolic disorder.
00:14:10And we now think that's an autoimmune disorder. Okay. So, that's what it looks like.
00:14:18Now, let me go on and talk about where we're at with our research.
00:14:24I started off getting interested in neck problems because we couldn't get the pain relief.
00:14:29But then later on, what's been interesting, I've got a huge number of people who started off with
00:14:37lumbar sacral adhesive arachnoiditis. And then later on, they say, Doctor, I now think I've
00:14:42got arachnoiditis in the neck. Well, they probably do. But it didn't spread like a cancer. The same
00:14:51disease that caused the degeneration of the disc in the lumbar area is causing it in the neck area.
00:15:00Okay. Now, what do we think that is? Okay. First off, those people who have a hereditary collagen
00:15:09disorder like Euler's Danlos or what we now call a hypermobile spectrum disorder
00:15:17are very susceptible to cervical neck degeneration. Okay. And what we also are now finding
00:15:28is that all these people do seem to have a parasitic autoimmunity. And of course,
00:15:35the major parasitic virus that causes autoimmunity and degeneration of these discs is the Epstein-Barr
00:15:42virus. And so, we think that this autoimmunity is coming from the lymphocytes, coming from the
00:15:52thymus gland, the spleen. It's coming from the immune system causing the degeneration of the
00:15:59discs. The discs are pushing onto the spinal canal. And surgery and other medical means hasn't helped.
00:16:07And terrible pain does now exist. That's where we are at today. Okay. In other words,
00:16:17I don't have a specific treatment. We're recommending the three-component medical
00:16:22protocol for cervical neck disease just like lumbar sacral disease. And we're assuming,
00:16:31assuming that we have non-adhesive arachnoiditis in the cervical neck and it is primarily being
00:16:39generated by an autoimmune disorder, probably the Epstein-Barr virus. Now, let me just say
00:16:46one other thing about the Epstein-Barr virus because you're going to hear a lot about it.
00:16:50The Epstein-Barr virus is a herpes virus. It's a herpes number four. Now, they call it Epstein-Barr
00:16:57virus because they're named after the two laboratorians who discovered the virus.
00:17:04But it's one of the herpes classes along with herpes 1, 2, and 3 and cytomegalic virus.
00:17:10And those viruses oftentimes we're now finding out are in the same person.
00:17:14And under stressful conditions like accidents, severe infections,
00:17:19trauma, those viruses reactivate and cause an autoimmunity that we then will now believe
00:17:28is generating inflammation in both the lumbar cervical spine and also in the neck.
00:17:35That's where we're at. So bottom line is this is where we're at. We think that this terrible pain
00:17:42is partially caused by non-invasive arachnoiditis. We think that this could be
00:17:49generated due to an autoimmune disorder probably caused by viruses that have reactivated.
00:17:56We think that people who have hereditary collagen diseases or who have had trauma
00:18:04or perhaps are more susceptible to this. And so that is where we're at. And I'll just close
00:18:11this session out by saying this. If anybody out there listens to this and has found a topical,
00:18:19an injection, a physician, a procedure, a medicine, anything that you think has helped your
00:18:26severe neck pain, let us know about it, would you? We're looking, we're grappling, okay?
00:18:33We've been through the high-dose opioids. That's not been what we're talking about here.
00:18:37We're talking about trying to find something else that works. And let me close with this statement.
00:18:44Why don't the opioids work real well in these cervical neck problems? We don't know. We don't
00:18:50know whether the blood supply is really poor in the neck. We don't know whether you've had
00:18:55a destruction of the arachnoid membrane or the small nerves just like in pedendoneuropathy.
00:19:01We just really don't understand why we can't get, you know, why you can't take your oxycodone or
00:19:09your hydrocodone and your valium and your gabapentin or your ritalin and get some good
00:19:16pain relief in the neck. But it doesn't happen very often times. So therefore, we're grappling.
00:19:23But I wanted to bring it up, get it out here on the table. I think one of the worst things in
00:19:28medicine today, and I'll be honest about it, is this thing to where when you don't know what to
00:19:31do, let's not talk about it. Hey, we've got the internet. We've got social groups. We've got
00:19:37great communication on this planet today. If somebody in Australia listening to this thing
00:19:42has an idea, God, send it to us. If it's a new herb, we don't care. Whatever it is, send it in.
00:19:49We're looking for help. Okay. With that, and again, any communications on these two problems
00:19:56where we've talked about pedendoneuropathy, cervical neck pain, we invite you to educate us.
00:20:04Okay. Let's go on and bring our guest on, Jamie. All right. Perfect. We have Ms. Harris with us
00:20:14tonight. And welcome, Ms. Harris. Welcome to DocTalks. Great to see you. Thank you.
00:20:23And I guess you're going by Ms. Harris, right? Yes, sir.
00:20:30Okay. Well, we're going to call you something, so we'll call you Ms. Harris. How does that sound?
00:20:36Thank you very much. I know a little bit about your history. First off,
00:20:44you look pretty young. Tell us how old you are. I am 42.
00:20:49Well, that's pretty young. Okay. Now you've had this rare disease. I want you to tell the audience
00:20:57how you got this strange diagnosis that only happens once or twice in a million people
00:21:03and how it happened. Tell us how you got started with your journey.
00:21:07Okay. So when I was 15, I was in a cheerleading parade with my fellow cheerleaders.
00:21:18And we cheered and walked for like two hours cheering. And afterwards, my arms hurt so bad,
00:21:25like they did normally. But I had a weird feeling I should ask the other girls if their arms hurt
00:21:35really bad. And so I asked one girl after another, and every girl said no. And that is the day that I
00:21:43realized that I had something going on that was not normal. Because up until then, I thought
00:21:50that everyone's arms hurt that bad when they did things with their arms.
00:21:57Okay. And so your arm, did it tighten up or you couldn't move it or just hurt?
00:22:03My arms feel like they weigh 50 to 100 pounds each. And it's all coming mostly from my shoulders,
00:22:13but I have a lot of elbow. It's just it's, it's all of it and my neck as well.
00:22:24So yeah, so my arms just, just hurt so bad like that felt like I'd been lifting weights,
00:22:30lifting weights, not pom poms.
00:22:35Again, did the pain go away after a while? After that first episode?
00:22:42I mean, probably an hour after the, you know, after cheerleading for that parade about an hour,
00:22:53it subsided some. But that's the day that I realized like, I was that that wasn't normal.
00:23:00And so I started searching for answers. So I started off with a, you know, neurologist and,
00:23:11and then I started seeing surgeons after surgeons after surgeons. And I did actually
00:23:20get rotator cuff surgery in 2008. And that did help. But I knew in my heart and my soul,
00:23:29after that surgery, when I was doing my physical therapy, that there was something else much more
00:23:36going on. And so go ahead. Sorry. Go ahead. No. So you were 16 when you had your first
00:23:46episode of arm pain. So go ahead and tell us what happened in your 20s. And when you got your rare
00:23:53diagnosis. So it actually took 21 years to get this diagnosis. To get my diagnosis. What finally
00:24:05happened is my suprascapular nerve was crushed for so many years, that my muscles were atrophied
00:24:16100% in my right arm and about 85% in my left. And you could see that clear as day in the MRI.
00:24:24But it's so rare that even all the MRI readers and all the surgeons I saw, you know, missed it.
00:24:33So it took 21 years to get diagnosed. And then I spent another five years seeing 17 top surgeons,
00:24:41including all three Mayo Clinic, well, Mayo Clinic, the one in Florida, and then they
00:24:48consulted with all of the rest of the Mayo Clinics. The Miami Marlins team physician,
00:24:54the Tampa Bay Rays, the number one surgeon on the Forbes list. None, none of them had ever seen my
00:25:00condition in person, they had only learned about it in medical books. So I finally found two
00:25:08surgeons, the one that pioneered the muscle transplant, and the one that the second person
00:25:15in the world to do a nerve transplant at Boston Mass General Hospital at the paralysis center.
00:25:23And so they finally, you know, had never seen it in, they never had seen anybody have it in both
00:25:36arms, only one, one, like one suprascapular nerve, not both, not on both our shoulders.
00:25:46And actually, I have more than 30 crushed, not pinched, but crushed nerves and muscles all
00:25:56throughout my shoulders, neck, arms. And that's just my upper body. And now that I know what they
00:26:03are and how they feel, I know they're in throughout my whole entire body. And I did get 10 biopsies
00:26:12done in my shoulders and arms, and I do not have small fiber neuropathy. So yeah.
00:26:23So when did you, when were you given your diagnosis? And what was it?
00:26:30It was, so it took 21 years. So it started at 15. So 21 years after 15 is what, 36? Is that right?
00:26:45So it was called suprascapular nerve impingement, not due to assist with severe to total muscle
00:26:54atrophy. That was my first diagnosis. But then after I went to the paralysis center, because I
00:27:03do have paralysis, not every time after I sleep, but many, many mornings after sleeping for the
00:27:14first, like, it could last up to 12 hours that I can't lift my arms. And then I have,
00:27:23you know, flare ups where I go months where I can't lift my arms.
00:27:29And were you were given the diagnosis of stiff person syndrome?
00:27:34I do have that as well. And I also have reflex sympathetic dystrophy in both arms. And it
00:27:42recently spread after I had surgery at the paralysis center, I had four nerves and one
00:27:50muscle uncrushed surgically. And the whole idea was to get all 30 uncrushed surgically,
00:27:59and they can only do about five at a time. And then I would get muscle and nerve transplants.
00:28:06It's a very long process. But that was like a 10 year plan. Because once you get a muscle
00:28:18transplant or nerve transplant, it takes 12 to 18 months to even know if the surgery was
00:28:24successful. And then three years before your nerves and muscles start to repair and grow back
00:28:31after a muscle or nerve transplant.
00:28:35Now, can you tell us what your doctors told you caused this these muscles and nerves to be
00:28:42crushed?
00:28:44They have no idea. They have absolutely no idea. And I kind of skipped ahead and because I was
00:28:54just explaining that one diagnosis, but like in 2018, I lost my care. And that's when my reflex
00:29:05sympathetic dystrophy spread from my arms, spread from one arm, excuse me, to my other arm, and it
00:29:12was so bad. And I spent a year in bed. I then came down with stiff person syndrome. Up until that
00:29:28time, I also only had like one bulge disc. And then the last MRIs that I've gotten for the last
00:29:42four years, I have 15 herniated and bulge discs in my neck and back. And we don't know how they
00:29:51came about as well. And my neck feels like it's broken. So, what you were talking about earlier
00:29:59is like exactly what I'm going through. And I'm quite sure that I probably have
00:30:06adhesive arachnoiditis in my neck and back probably.
00:30:10Tell us about your pain now. Have you been able to get pain treatment along the way or have you
00:30:16been asked out like a lot of people? Tell us about your pain treatment.
00:30:21So, the first 11 years from age 15 to 26, 15 pills would last me six months to a year and a half.
00:30:32So, I, you know, I got them, you know, whenever I needed them, but they lasted me so long.
00:30:40And then it got to a point, because I was a master hairstylist and a maid,
00:30:47so my job was a lot of repetitive motion. And I did have to start taking pain medication daily
00:30:58at the age of 26. And I had pretty good care, although I never got an increase in my meds
00:31:07up until 2018. And I lost my care and I spent a year in bed. And that's when
00:31:15my reflex sympathetic dystrophy spread. That's when I got stiff person syndrome.
00:31:22That's when my health really started to decline. And then I found care again after a year.
00:31:30And then right before the day before I was flying out to the paralysis center to get surgery that
00:31:38it took me 26 years, 21 years to get diagnosed and then another five to find a surgeon to try
00:31:45to help me. So, it took me 26 years to get this first surgery, which was on the suprascapular
00:31:52nerve and three other nerves and one muscle that were he was on crushing. And my doctor cut
00:32:01everybody's medicines in his office and, and mine was cut in half the day before my,
00:32:09I was flying out to go get my surgery. So my health was really bad the last
00:32:16the last since December of 2022.
00:32:24You said you lost your care. What can you be specific? What care did you lose?
00:32:30A pain medication. Right before my surgery, my long acting was cut in half and my short acting.
00:32:41And so that surgery went terribly. And I spent the last 16 months just
00:32:49in bed. And then I was put on hospice. And I was on hospice for the last three months.
00:32:58And I don't know if people know this, but there are people that are on hospice that cannot feed
00:33:06themselves. They can't dress themselves. They can't bathe themselves. They can't go to the
00:33:11bathroom themselves. And even them, if they're not declining, like if their arm is not shrinking in
00:33:21size because they measure your arm, they will take you off of hospice. So, yeah.
00:33:32So what are you supposed to do if they take you off hospice?
00:33:36They referred me to a nurse practitioner, which I already have one. So, but in the state that I'm in,
00:33:47there's only two states where a nurse practitioner cannot prescribe medications.
00:33:52Even under the supervision of a doctor, they cannot prescribe medication. I told them that.
00:34:00And I have my nurse practitioner that I've had for a while that comes to my house. And they are
00:34:12trying to refer me to palliative care. But this just all happened like on Fridays when I got
00:34:20discharged. So, you know, that was only a few, a little less than a week ago.
00:34:30So it's, a lot's been happening just recently.
00:34:35Yeah. Dr. Gibson, would you chime in here at this point? I've got some other questions,
00:34:41but knowing you, you're going to have some things to say about this.
00:34:45Question-wise or comments? Mark, chime in here. Help me out, would you?
00:34:49Yeah. Wow. What state are you in, Ms. Harris? Florida. Okay. Yeah.
00:34:59A nightmare for pain medicine there. And then, so are you,
00:35:07so are you, what has chiropractic or osteopathic or manipulative medicine or acupuncture done,
00:35:19have those been useless to you? I've tried every single thing you
00:35:24could possibly imagine, except for I did not do stem cells. I actually had it scheduled.
00:35:31But my husband recently, well, two years ago, he passed away on my 16 year anniversary.
00:35:41And so he went into the hospital the day before I was going to get my stem cells. And afterwards,
00:35:51when I was talking to one of my local surgeons, he said, I do stem cells. He said, I'm glad you
00:35:56didn't waste your money because it would not have helped you. But I've tried everything. My
00:36:02favorite thing, and actually, Dr. Tennant did ask what does help and it's lidocaine patches.
00:36:10I think chiropractor definitely helps. And I've been searching for a waterfall,
00:36:20a water therapy for sure helps. And I think that there is something to that electrical charge that
00:36:29Dr. Tennant was talking about and how magnets and, you know, water can kind of make that kind of,
00:36:39you know, kind of neutralize that if you will. When you went to the surgeon and he uncrushed
00:36:47your nerves, what does that mean? And what actually was crushing the nerves?
00:36:54They do not know what's crushing my nerves. They have no idea.
00:36:58But how do they know that they've uncrushed it then? I mean, it might be curious to see
00:37:05what the operative report says. Like, is the scapula pressing on the nerve? Is the
00:37:11teres major pressing on the nerve? Did they distinguish exactly the anatomical thing that's
00:37:17happening to your nerve? Wow. And like after I got diagnosed and I saw the 17 top surgeons,
00:37:26these are the two that I felt comfortable with that knew what they were talking about,
00:37:33you know what I mean? But my suprascapular is definitely the worst because it's been crushed
00:37:41for so long. My muscles are completely atrophied in my right side and they are 85% last checked
00:37:49in my left side. Now, I don't want to forget this and I think I should bring it up. I do have
00:37:58a pituitary brain tumor. This is my second pituitary brain tumor. When I lost my care in
00:38:062018, I lost my period, sorry. And I got it back when I got my medicine back in 2019.
00:38:22And then I lost it again. I mean, it's exactly, I mean, I lost it the very
00:38:28month that I lost my care. And now I haven't got my period. I thought when I got on hospice and got
00:38:36my medicine restored, I would get my period back. I was hopeful and it did not come back.
00:38:44But I think that having this pituitary brain tumor that affects all your hormones,
00:38:50I think that plays a really big part in why medicine sometimes works or doesn't work sometimes
00:38:59and that kind of thing. Plus I have the P450, PY450. I took two genetics testing and I am
00:39:08a rapid metabolizer and I'm an intermittent metabolizer as well. So that's why sometimes
00:39:15pain medication works okay, pretty well. And then sometimes it doesn't seem to work at all.
00:39:23So I think all that factors in and no doctors will take either of those two things being that
00:39:31genetic, the gene that I have, the genetics testing that I did twice or the pituitary tumor,
00:39:39they're not taking those into account for anything. It's like, it's nothing.
00:39:47How have you stayed alive?
00:39:54Honestly, God, I have a really close relationship with God. I want to say this also too. I had
00:40:03moments when I was under hospice recently where I actually had, I felt adequate pain care.
00:40:14I actually went to church three times. I volunteered at my church for the homeless
00:40:21people twice. I can't do much because my arms, I'm going paralyzed in my arms. I can't do much. But
00:40:28I went to the beach twice. I took my dog once and then I went myself.
00:40:36And it was the best, you know, best few things that I've gotten to do in such a long time
00:40:46because I've been in bed for so long. But shows like your show, y'all's show,
00:40:54has kept me alive and my relationship with God.
00:41:01Thank you.
00:41:02Yeah. Ms. Harris, I salute you for what you've just said. But let me go back. I want to ask
00:41:09some other questions. You've mentioned here all along, you've seen all of these surgeons.
00:41:17Now, has anybody, now, if you were given the diagnosis of stiff person syndrome,
00:41:24that's known as a autoimmune disease. It has its own autoantibody. Were you tested for these things?
00:41:31Yes, I was. But because hospice didn't seem to, they looked for a neurologist
00:41:42that diagnosed me and they didn't ask me. My pain doctor actually is the one that
00:41:49diagnosed me and sent my labs out. I don't know why they didn't ask me.
00:41:55And I have a picture today of SPS doctors in Florida. There's not one within three hours of me.
00:42:06So I don't know why they didn't ask for those records from me or where they were,
00:42:15which doctor they were, so that they could get them. But they didn't. But that's a relatively
00:42:24new diagnosis, the stiff person syndrome. I got diagnosed, my first episode basically was on
00:42:32Valentine's Day of 2019. And so I got diagnosed in April of 2019. So that's fairly recent.
00:42:44But when I went to go see surgeons about my arms,
00:42:51they didn't even bring up the stiff person syndrome. I mean, because I'm seeing
00:42:55in, you know, the head of the paralysis center and the head of the orthopedic department,
00:43:02you know, surgeon department of, you know, so my arms have always been such at the forefront
00:43:11that everything else got pushed back on the back burner, everything.
00:43:18Next question, how tall are you?
00:43:205'2".
00:43:22You're short, okay. Now, you started off when you were 16 years of age. Now,
00:43:27I realized when you were 16, this was not done. Now, a 16-year-old today who has
00:43:36arm pain or any kind of pain has to be evaluated or should be evaluated for
00:43:41one of the Ehlers-Danlos syndromes or what we call, you know, hypermobile spectrum disorder.
00:43:50Now, did anybody ever use those terms with you?
00:43:53No, I've never gotten, because they were always just looking at my arm. And I was,
00:44:04I was pretty proud in that I would kind of downplay everything and hide everything,
00:44:12even from doctors. And I still find myself doing that. But I was raised in the South,
00:44:17and you say yes, sir, no, sir. And you don't question anybody. And you don't,
00:44:26you don't show like your emotions and that much. And, you know, even to doctors, like,
00:44:33I would find myself hiding my pain and hiding problems. And I was so concentrated on my arm
00:44:42trying to figure out because it started with just like one arm being really bad, my domino arm.
00:44:48And then it was both. But I was so concentrating on that, that it was like the whole appointments
00:44:56were all talking about that it wasn't, you know, we didn't go into other things. But I have a
00:45:03high suspicion that I have EDS. And like I said, I have a high suspicion that I have
00:45:10adhesive arachnoiditis in my neck and in my back, because why else would I
00:45:16for no reason at all, have only one bulge disc forever. And then now I have 15 herniated and
00:45:24bulged discs, you know, like out of nowhere. Let me ask you. You've talked a lot about all
00:45:32the doctors you've seen now. Did a rheumatologist at any time take autoimmune tests from you or an
00:45:38internist take viral tests, interleukins, hormones? Tell me about laboratory testing in
00:45:46your case. I mean, you've gone through this for years with what sounds to me like an obvious
00:45:53hereditary autoimmune collagen deficiency disease. And it sounds like you fall into what today,
00:46:02and I will give the Eilers-Danlos Society a plug here. The fact that they are using that
00:46:08term hypermobile spectrum disorder is where you obviously fit. Because you've been given
00:46:16all these different diagnoses, but those all get thrown under what one umbrella today,
00:46:22which is a good thing, because you should have been, frankly, nobody knew and I wouldn't have
00:46:28either. So I'm not being critical, but today you fall in that category. And just because you
00:46:34started these pains in your arms, I mean, okay, so you started in your big toe. I mean, you know,
00:46:40you got to start somewhere if you have collagen disorder. And then when you've got your CYP450,
00:46:47but again, they, now the autoimmune antibody for stiff person syndrome is called a GAD65.
00:46:55Right. Yes. But I don't, I do not know the number. I apologize. I looked for it and I don't know the
00:47:04actual number that I got back on that test, but I would like to get tested again so that I could,
00:47:12you know, just to see where it's at now. Yeah. Now do you have, do you carry a three ring binder
00:47:20of all your records and everything? Oh, I'm very organized with my medical records and everything.
00:47:27The only thing is, is that, and to go back for one second, I've mostly seen surgeons, like when
00:47:35my neurologist retired, the one that I started seeing when I was 15, I tried to go to another
00:47:42neurologist and I was with him for a little while. But then after I went to Mayo Clinic,
00:47:48it was, and it was like 2018 and same with a rheumatologist. They didn't even like seem to
00:47:56want me as a patient. Like two doctors actually said to me, you went to the Mayo Clinic. What do
00:48:03you expect me to do? I can't do more than them. When I walked in the door and I was a previous
00:48:09patient of theirs, I think that the doctors were just so scared. They didn't even want to have a
00:48:16patient that was on medication, even though I never asked them for medication or anything.
00:48:21So I really got kind of scared and I mostly saw surgeons. And in my whole life, I've seen
00:48:30mostly surgeons. When my doctors retired, I just didn't try to find any more. And then as far as
00:48:39my medical records, I have three suitcases of medical records. My psychiatrist's office helped
00:48:49me to get them organized for right before I got put on hospice. We spent like 14 months getting
00:49:01my medical records very organized. The reason why I don't have like the medical records from my
00:49:09pain management doctor is because if you can't ask for them, you know, until you have another doctor
00:49:21and they can charge in the state of Florida, it's like $2 per page. It would have been like
00:49:27thousands and thousands of dollars to get those records. A doctor can get them, but I've never had
00:49:35very good luck with doctors getting them. So I don't have those, but all my other records,
00:49:43I do have copies of.
00:49:48I'm going to have a question that I want to ask you here. And then I want Dr. Ibsen to kind of,
00:49:54you and he discussed what, where do you go now? One of the reasons I wanted you on the show is
00:50:04because you're a good example of somebody who's gone years without a diagnosis. Now today,
00:50:14we've got all kinds of profiles on genetic diseases. We can tell you whether you've got
00:50:18Ehlers-Danlos, whether you've got Marfan's, we can tell you whether you've got autoimmunity,
00:50:26which one it is. We can tell you whether your hormones, your pituitary tumors, probably the
00:50:31pituitary trying to overwork because you've got too much pain. That's another diagnosis being
00:50:36given all over the place, pituitary tumors. And that's just a pituitary overworking because there's
00:50:41too much pain out there. And so we've got the tools to diagnose people today, which you didn't
00:50:46have when you got started. And so would you have any, you went all these years, you were in bed,
00:50:53I don't know how you survived either, but what's your advice to people out there right now? Because
00:51:00there's people watching this show who can't get a diagnosis, who have strange symptoms like you had,
00:51:06what's your advice to them at this time? I actually like do have a diagnosis. The problem
00:51:13is, is right before I got put under for surgery, my surgeon said that there is no known documented
00:51:21case of anyone having your condition in both shoulders, nevermind both elbows and both arms,
00:51:31bilateral. So for the last quite some time, there, they have to just, there's not even a code for my
00:51:43diagnosis. So every doctor just has to pick a, you know, neuropathy, neuro lot, like they just
00:51:51have to pick some sort of code for billing, because there is no known person with this.
00:51:58Um, but it is, it's crushed nerves and muscles all throughout my body,
00:52:04and so much so that it's atrophied my nerves. That's what my diagnosis is. It's like I said,
00:52:11it took 21 years to get diagnosed, and I didn't give up, I would kind of wear a surgeon out,
00:52:19and then kind of be, you know, go, I don't know, sometimes months to a year, a few years, and then
00:52:27go to another surgeon, and go to another one, and then go to another one, and I just,
00:52:32yeah, it's been a long, hard road, but I didn't give up. I just kept going.
00:52:39Mark, I'll let you close this out. What would you like to ask the young lady, and
00:52:45close us out if you would.
00:52:46Well, thank you for telling your story, um, and I don't have any, okay, let's, let, let me,
00:52:56so you got a diagnosis, but you don't have a therapy. Sometimes my idea is to go to a therapy,
00:53:01whether you have a diagnosis or not, because, uh, you know, to talk to someone who says,
00:53:05there is no one with your diagnosis, and you're sitting across from the doctor, and I said, well,
00:53:10can't you be the first one to make this diagnosis? And I said, well, I'm not going to make this
00:53:14diagnosis. Can you be the first one to make this diagnosis? I mean, you can't be telling me I don't
00:53:19have what I have just because no one else has ever had it. Um, and so, and so what you've got is
00:53:27chronic pain and dysfunction of your nerves, whether they're crushed or, or whatever's
00:53:31the mechanism of it. Um, you've got poor function that responds fairly well to intensive pain
00:53:40management at the dose that, that works for you. Um, and the, the, um, the, the only other thing I
00:53:48would do is if I was providing your care is I would treat you for pain management and then adopt
00:53:54the tenant protocol and all of that, and then document how much improved you are and how you're
00:53:59not in bed any longer with the medications that we're giving you. So it was like, so someone says,
00:54:04well, you can't have what you can have, but you have it. So, so the reality is, and your case
00:54:11actually documents that with appropriate pain management and, um, and the other adjuncts,
00:54:18such as chiropractic, et cetera, you can actually get out of bed and function.
00:54:23Yeah. Yeah. I actually have that documented because I wrote a medical journal, um, of my
00:54:32whole entire, it's like my life story, but only the medical side. And it actually takes, it takes
00:54:4036 minutes to read. Um, but I have it very well organized. I started writing it in 2018. It is,
00:54:47if you will, my book and I finished it, um, right before I got put on hospice and, um, and it,
00:54:54it is my story and any doctor it's very well organized. It's, you know, and so if any doctor
00:55:02that I have, I actually have that in my medical records for them to read, because if they read it,
00:55:08they will understand everything that's going on with my situation in my case.
00:55:15Another thing is I would, I would like to go back to the paralysis center and ask them to, um,
00:55:25give me a more, you know, like if they, if they want name the diagnosis after me, you know, if I
00:55:33am, if there is no known documented case of anyone else having this, then why not? They name it. I
00:55:42mean, they don't have to name it after me, but, you know, let's get in, let's get like a actual,
00:55:49you know, name for it. And you would think because it's so rare that doctors would be
00:55:54knocking at your door. That's what people think. No, it's not like that at all. Not at all.
00:56:04Well, thank you so much for being here. And, uh, uh, Jamie, thank you again, Mark. Thanks so much.
00:56:10I want to close out with a statement here. Last week we told, I told a woman when you
00:56:18are supposedly have all these discs that are degenerated. Why did they generate this week?
00:56:25I'm going to say you, we've had a person here who's been told she has crushed nerves. I didn't
00:56:31hear that there was any trauma. And if you have crushed nerves, you've got a slip disc. You've
00:56:38got a nerve that doesn't function. You've had pain to show up somewhere. Patients have a
00:56:44responsibility. And so do the doctors. Why do you have it? What caused this? The health system,
00:56:52in my opinion, has taught patients to be too passive. You need to ask, why do I have this?
00:57:00What caused this crushed nerve, this slip disc, this pain in my head? Why do I have this? All
00:57:08right. We'll sign off on this. And Jamie, again, thanks for sponsoring a great show, Mark. Thanks
00:57:13so much. And Ms. Harris, you've been very delightful to interview. And we're, I know you'll
00:57:19help a lot of people with some of the things you've said. We'll sign off now. Good night.
00:57:28Okay. And Dr. Tennant, before you go, this is something that Rob has asked. He has 10
00:57:34disc herniations, and he's fused cervical spine. He's got a full lumbar fusion. And his physician
00:57:42has told him that that's normal wear and tear. So he did ask why he was having all these herniations,
00:57:50and they just said it's normal wear and tear. So he wanted to know what he should be asking her
00:57:55to look for at this point. He should be asking for a bus on out of town to find a new doctor.
00:58:00Okay. I'll sign off. Thank you. Can I say one more? Can I say one more?
00:58:10I will say that I'm telling you, my lidocaine patches, they are lifesaving for me. I mean,
00:58:21lifesaving. I could not live without them. And they don't work right away. You know, it's days
00:58:30of 12 hours on, 12 hours off. Okay. Awesome. I understand. Thank you. And Dr. Clement,
00:58:37you had your hand raised. I'd like to hear. Well, what I find disturbing about this whole thing is,
00:58:44one, is the treatment of medical records as if it was some sort of legal transcript.
00:58:51Inability of some, particularly when it deals specifically with pain, all of a sudden now we
00:58:59have, well, that's a legal issue rather than a medical issue. And to me, that's just plain just
00:59:08trouble. The other thing that I wanted to ask you, did at any point anybody look at you and
00:59:20mention the word ALS or some form of ALS? No. I forgot to say this though, but my mom had
00:59:28multiple sclerosis, but no. Okay. Just to share.
00:59:37Like I said, my arms have been such at the forefront, my shoulders, I should say, that
00:59:45I mostly saw surgeons and it was like everything else was just ABC letters to everyone else. I
00:59:54don't even think the surgeons know what reflex sympathetic, I mean, a lot of them, I don't know
01:00:00that they even know, they might now, but they didn't even know what RSD was or stiff person
01:00:06syndrome or, you know, yeah. Can I ask Dr. Ibsen a question? Yes, please.
01:00:15Dr. Ibsen, is this, where did it go? What's happening here, it has to do with the training
01:00:26or the lack of training or the proper training of physicians who are studying neurology or
01:00:35there's something else, I mean, in terms of you have physicians that say, well, I don't know what
01:00:41this is, you know, let's go down to the, let's try this or whatever. What's what?
01:00:49That's a brilliant question, Norm. You know, I believe that the training that doctors are
01:00:55getting nowadays is stay away from anything challenging that may make you as a physician
01:01:02an outlier. It's fear, which is dominating the situation. It's a medical legal issue that's
01:01:11driving this whole concept. Well, it might be medical legal from the standpoint of lawsuits
01:01:17or malpractice, but what I'm seeing, it's a regulatory issue in that doctors don't want
01:01:22to stand out with anybody else in their medical board. They don't want to be treating an unusual
01:01:27patient. They think that maybe you're nuts because, you know, we blame the patient when
01:01:33we can't diagnose them. In what other industry do we do that? It's like, that's the training.
01:01:42Here's the argument we have brought up and you're within the norms, okay, and that the word outlier,
01:01:48I mean, outlier doesn't tell you anything about, the outlier only says to me, it says that maybe
01:01:57Dr. Ibsen is knowledgeable enough and good enough that he knows how to treat these conditions
01:02:04rather than take the, they'll call a person an outlier and then make them and then criminalize
01:02:11them for being, for treating and being good at treating and getting results at treating
01:02:18certain patients with certain diseases and stuff. Yeah, that's it. Well said, Norm.
01:02:26And we see, and one more, okay, we see this in this concept that the DEA uses in that money
01:02:34balling. Ann Milgram refers to outliers, this sort of, the data analytics, and this whole
01:02:44outlier concept is driven by fraudulent or defective data analytics, which then changes the
01:02:56behavior in the physician to address the patient issue because they said, well, you know, I don't
01:03:03want to hit home runs. I mean, if you want to take a basic, Michael Jordan was an outlier because he
01:03:12was good, LeBron James is an outlier. Yes. All right, thanks everybody.
01:03:20And we have one hand up. We had Kristen that had something to say, if we could add something in the
01:03:27next. And Ms. Harris has one more final thing to say. Oh, okay, good. Yes, please.
01:03:32I will say this. I've only had, including my pediatrician, I've only had four doctors treat
01:03:40my pain. I had my pediatrician who retired, then my first doctor that I had for 10 years who died,
01:03:48my second one that retired and gave his practice to the third one, or you could say fourth if you
01:03:57include my pediatrician. But with all those surgeons and all those doctors that I've seen
01:04:03and everything, I've only had one doctor and I've read the records. So I see what they say, you know,
01:04:09to my face and the records. I've only had one doctor in my whole entire life that
01:04:18basically wrote like that he didn't think I had anything wrong or needed any more additional
01:04:28testing. So I've been believed by every doctor and treated pretty respectfully by everybody. So
01:04:37I will and I haven't had that many doctors treating my pain. But with all the surgeons
01:04:42and everyone, I've never had anyone like not believe me. So I think I got that. Yeah. Sorry.
01:04:51Sorry. I don't know. To answer your question, Lori, why she wasn't on hospice was only on
01:04:58hospice for three months, because she wasn't declining quickly enough. Maybe you two could
01:05:03connect. You have very, very similar stories. But we did have Miss Kristen. Kristen,
01:05:08are you still with us? Yes, I am. And I'll just say something very quickly. The whole
01:05:12discussion about records is one that's very concerning to me. Some of you may recall that
01:05:17my name was among the advocates who worked to try to influence the final version of the California
01:05:25prescribing guidelines that were they were issued a while back and along with Monty Goddard and
01:05:31quite a few other people. And one thing that I noticed in the first rough draft we were given
01:05:36to look at and in other places, there's statements that you can't you should not accept records from
01:05:43patients because they may not be reliable. I have collected Lewis Ogden's record since the 19 early
01:05:501990s. And a lot of the pertinent things that got tested for and eliminated. Those things occurred
01:05:56a long time ago. So the last five year snapshot does not tell you everything about him. And I
01:06:03think a lot of it has to do with liability. They'd rather not even know about what the old records
01:06:11say. And they certainly are not going to want to take them from the patient. And I think that's
01:06:15very, very unfortunate. Records are something I value very highly, very important. And the ones
01:06:22that we have are legitimate and real. And we collected them all these years. Yes. Yes. And
01:06:29may I say one more thing about medical records? Yes, please. It's I agree. They're not they're
01:06:34not reliable. You know what's reliable? A history and a physical. You can't fake the history and
01:06:40physical. And you also you also can't fake for very long. You can't really lie to your doctor
01:06:53and then demonstrate something differently during your exam. So so your history and physical is
01:06:59important. And your old records just basically say how reliable you are to show up for your
01:07:04appointments and to engage with whatever your practitioner is. And it's our responsibility,
01:07:10whoever your case lands in the lap of, it's it's it's your responsibility as a patient to
01:07:17give them everything you've got and give them time to sort it out. But it's also the doctor's
01:07:22responsibility not to give up on you. Yes. Well, Dr. Mark, may I just say that in the records that
01:07:29I was referring to, many of them were Dr. Tennant's records, and they include the history and the
01:07:34physical and everything you're talking about. Exactly. Exactly. Yes. What is what even more
01:07:41disturbing here is that the medical record, the history, the entire medical record is something
01:07:47that is undesirable and we're trying to exclude. But yet a criminal record, you know, when we go
01:07:56and get a criminal record, you want everything about that client. So we we sound like flip
01:08:03medicine on its end and that we're not getting wanting to get the whole desired information.
01:08:11And that may be medical, legal or what. But that to me is just this is just terribly disturbing
01:08:18to get that understanding. It's good to see you, Kristen. Thank you, everybody. Time for me to go.
01:08:26Thank you. Thank you, everybody. Thank you. Well, you're not alone. We'll see you again next week
01:08:35at the same time, same place. And look forward to seeing you next week and hopefully see some
01:08:41smiling faces and hear some good stories. Hopefully hear some good news. And just remember that you
01:08:48are not alone. You have a whole lot of people that are right here with you. So please stay alive.
01:08:54Thanks so much, everyone. Thank you. Thank you so much. Thank you, too.