Why is it "Pain Upon Pain" for the MOST PAINED of our communities- the most Serious Disease group in the World?
There's not 1 drug or 1 therapy to "fix it all". Approach with many tools! Monty Pat Kristen Louis John Mark Susan
There's not 1 drug or 1 therapy to "fix it all". Approach with many tools! Monty Pat Kristen Louis John Mark Susan
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00:00Welcome, everyone, to Season 3, Episode 7 of DocTalks with Dr. Forrest Tennant and Friends.
00:07We're really happy that you could be with us tonight, and we have an extra special night
00:12because we have a little something that we would like to do for Miriam Tennant.
00:17It goes a little something like this.
00:19Happy birthday to you. Happy birthday to you. Happy birthday, Miriam. Happy birthday to you.
00:39That was beautiful. Thank you. Unexpected. Thank you so much.
00:48You're so welcome. Happy, happy birthday. Thank you. We'll do it.
00:54After that, I won't have to get her anything.
00:58Oh, no. He just thinks so.
01:04So we're so glad that we – I think we're going to have a great show tonight.
01:08We have a couple surprises going on, so Dr. Tennant, we're really looking forward to this,
01:16so we'll let you go ahead and take it from here.
01:19Thank you, Jamie. We do have a full, interesting program tonight.
01:25Christian Ogden is going to be here, and we have a special guest we're going to interview.
01:31I want to take the first part of our program tonight to talk to those people who do have adhesive arachnoiditis.
01:41Now, I want to talk about pain control with adhesive arachnoiditis.
01:46Now, the rest of you out there who do not have this condition, if you can pick up something, that's fine.
01:52But I've selected to talk about this because there's a great misunderstanding, apparently,
01:58about this disease still and about pain control for this.
02:03Now, let's start off by saying one thing.
02:06When you start talking about pain control or opioids in the United States, maybe worldwide, it's very controversial.
02:12Nobody agrees. Nobody wants to even talk about it publicly.
02:17It's like abortion. Everybody's got their minds made up, but they won't discuss it in public.
02:23Well, when you have adhesive arachnoiditis, you've got to discuss it.
02:27Why? Because adhesive arachnoiditis, for those severe cases, frankly, as a group,
02:35it's the most—it's a severe situation.
02:40In other words, those people who have the severe forms of adhesive arachnoiditis, as a group,
02:47have far worse pain than CRPS or post-stroke or cancer, and they really are up against it.
02:54And the biggest misunderstanding is that they think they can take one drug, one remedy, and get pain relief.
03:02You can't do that with this disease.
03:05Now, why is that? Two or three things, because I want to talk about something very practical here now.
03:12And you're going to hear a little bit from some people who are advocating for less restrictions on opioids in a few minutes,
03:21but that advocacy is for tomorrow, not for today.
03:24Now, with adhesive arachnoiditis, every day is not only a day of suffering, it's a day or two off your life.
03:31And so it's a serious, serious situation.
03:35Now, first off, we've now learned that it is an autoimmune disease.
03:44It has other factors, genetic factors, trauma factors, things like this,
03:51but it's got an autoimmune component, just like rheumatoid arthritis, as well as nerve damage.
04:00It's a terrible situation.
04:02And so you're going to have to, to get pain relief, you've really got to have a program, if you will.
04:09Now, today, in conjunction with this program, for those of you who get our Foundation's bulletin,
04:15I've sent out a bulletin on the pain-relieving drugs that are available for adhesive arachnoiditis.
04:23In other words, here's what you have today.
04:26Now, we're talking to a national and an international audience on this podcast.
04:32So, and all the time, somebody in the state of Minnesota objects to what somebody in Florida likes,
04:39or somebody in England doesn't agree with somebody in Germany.
04:44That's fine, but you've got to realize that your gripe may not even apply to another country or to another state,
04:52because all these jurisdictions have restrictions and things you can do.
04:57Also, the medical profession varies from not only state to state and country to country,
05:04but medical practice today has many controlling parties, not just state medical boards,
05:11but you've got local societies, and above all, most, something like 60% of physicians today are employed.
05:20They have to do what their employer allows them to do.
05:24So, you have all of these factors, but within this, you've still got to be practical.
05:29What are we going to do about these things?
05:32And what are you going to do about pain relief today?
05:34Well, I'm going to give you the laundry list.
05:36Now, the reason I'm going to talk about this for the next 10 minutes is because our menu for pain relief is not long.
05:45We have a lot of, it's pretty narrow, okay?
05:49It's like going to McDonald's.
05:51You don't have a big menu.
05:52You've got a few Big Macs, okay?
05:54You've got a few big drugs for adhesive arachnoiditis.
05:58Okay, let's go down the list, and you're not going to hear me tell anybody what they've got to take.
06:05I'm going to tell you the pros and cons and why and under what situations they are good, okay?
06:11Now, the first thing we're going to talk about is naltrexone.
06:15Now, there's another thing about naltrexone and adhesive arachnoiditis you've got to know right out front.
06:22It's only for mild to moderate cases, okay?
06:26You are not going to be somebody who's been on opioids for years, come off opioids,
06:32and have adhesive arachnoiditis and make it on naltrexone.
06:38Naltrexone is only for mild, new cases, okay?
06:43If you're a new case with adhesive arachnoiditis, yeah, naltrexone is the first drug of choice.
06:50Now, you can't take naltrexone alone.
06:52You've got to take it with clonidine.
06:54You've got to take it with a herbal product.
06:56You've got to take it with a low-dose opioid.
06:59But the other thing about naltrexone is this, and the dosage, incidentally,
07:04goes from about 4 milligrams twice a day up to 12 milligrams twice a day.
07:08If you've taken it for 20 days in a row and it doesn't work, quit it.
07:12Quit, okay?
07:14Don't keep taking naltrexone if it doesn't work.
07:17If it gives you a lot of side effects, don't take it.
07:20So that's the thing about pain-relieving drugs.
07:22If it doesn't work or you get side effects, you have to quit.
07:26That's the way it is.
07:27Okay, that's naltrexone, the major message I want to get for that.
07:31Now, the other thing about adhesive arachnoiditis is we have four categories,
07:38mild, moderate, severe, and catastrophic.
07:42When you hit into the severe and catastrophic,
07:45that means that you have some impairment of walking
07:50and with your legs and your arms and your bladder don't work normally.
07:55That's the cutoff.
07:57Now, if you are in that situation,
08:01your legs and arms and bladder and bowel aren't working normally,
08:05you are not going to make it on non-opioid drugs
08:09because you've got scarring and you're not going to get healing.
08:13Okay?
08:14So remember, mild and moderate cases can take one set of drugs.
08:19Severe and catastrophic, you're going to have to use another one.
08:23All right?
08:24And you have to decide right out front, where do you stand?
08:27So if you've got adhesive arachnoiditis, bank on this.
08:31If you, again, your legs are paralyzed, your arms are paralyzed,
08:37your bladder doesn't function, your bowels don't function,
08:40you're impaired a lot of the times or can't think,
08:43you're in the severe and catastrophic category
08:47and you're going to have to use a different set of pain drugs.
08:51Okay?
08:52And you're going to have to educate your physicians
08:54and you're going to have to know the cutoff.
08:56Now, why is the cutoff?
08:58Because inside the spinal canal,
09:01the adhesive membrane and the cauda equina are glued together.
09:07Now, as long as they're just glued together and kind of loose,
09:10you can function.
09:11But if they scar and they become that way,
09:16the disease is not reversible.
09:18Okay?
09:19And so you have to accept this terrible fact.
09:22All right?
09:23And you're going to have terrible pain once that scarring
09:27of those nerve roots are entrapped in the mass of cauda equina nerve roots
09:32and the adhesive membrane would scar.
09:35Okay?
09:36Now, let's go on and talk about a drug that really is poorly understood,
09:42but it's Ketorolac, trade name Toradol.
09:44And you should know pretty much right out front that Ketorolac
09:54is really the best drug for arachnoiditis.
10:00If there is a drug on the market that should have this indication, Ketorolac.
10:07Unless you're in the catastrophic change category,
10:11I believe it's almost essential.
10:13Now, why?
10:15It's the one pain drug we have that's also an anti-inflammatory.
10:21That's the only one we have.
10:22No.
10:23No.
10:24It crosses the blood-brain barrier.
10:25It gets into the spinal fluid.
10:27It's part opioid, and it partially attaches to the opioid receptors.
10:33It's like morphine or like oxycodone.
10:35You get good pain relief.
10:37At the same time, you get a lot of anti-inflammatory suppression,
10:41and we also think it has some suppression of the Epstein-Barr virus.
10:45Bottom line is Ketorolac, I view it almost as essential.
10:51Now, doctors don't like to prescribe it because they've heard it has a lot of
10:55terrible side effects.
10:56Let me tell you, one dose of Ketorolac a month is probably helpful.
11:00One a month.
11:01Okay?
11:02That can be oral.
11:03It can be nasal.
11:04It can be injection.
11:06I like to see people take it about one day a week.
11:09Now, one day a week, you're not going to get side effects.
11:13And some people like to take it up to three days a week.
11:16That's kind of stretching the risk a little.
11:19But at least one day a week, two days a week,
11:21or one or two times a month is perfectly safe.
11:24And in my opinion, at this point, and I've now watched this a few years,
11:31if you are not taking Ketorolac and you have adhesive arachnoiditis,
11:35I don't know how much pain relief you're going to get,
11:39regardless of opioids or electrical stimulators or implanted pumps.
11:44Ketorolac, at this point,
11:47is almost an essential drug for adhesive arachnoiditis.
11:51If you're in the catastrophic chain status and you're bedbound,
11:55can't walk, paralyzed, it probably wouldn't do you any good.
11:59But with the mild, moderate, and severe cases, I highly recommend it.
12:05Now, the next category, and we're going to talk more about it today,
12:09and that is the opioids.
12:11People with adhesive arachnoiditis are eligible to take opioids.
12:16Okay?
12:17Now, regardless of restrictions, guidelines,
12:20if a person has MRI-documented adhesive arachnoiditis,
12:25most of them are not having difficulty getting some opioids.
12:29Now, you have to get them from your local doctor.
12:32You can't just be traveling across state lines.
12:34You can't be getting them by mail and some of this kind of thing.
12:38But if you have documented, MRI-documented adhesive arachnoiditis
12:43and backed up with some interleukins, backed up with some hormone levels,
12:48backed up with Epstein-Barr, if you've got it documented,
12:52what I'm starting to see around the country is that nurse practitioners
12:56and physicians at the local level are prescribing for people.
13:00It's when people don't have a good documented case,
13:03they're going to have trouble.
13:05Now, opioids need to be looked at in two categories, mild and strong.
13:09Okay?
13:10Now, the mild ones are tramadol, codeine, buprenorphine,
13:17and then your low dosages of hydrocodone,
13:20and that's usually Vicodin or Norco, or your Percocet.
13:23That's low-dose oxycodone.
13:25Now, those are the ones that doctors are prone to prescribe
13:30throughout the country today.
13:32And your government agencies, medical boards,
13:35are certainly acceptable to these drugs,
13:40the low-potency opioids, if the case is well-documented.
13:45Okay?
13:46It's got to be documented.
13:47Now, you can't just take those opioids by itself and make it.
13:50You're going to have to take Ketorolac and maybe some other things.
13:53Now, when you get into your severe and catastrophic cases,
13:57those of you who are in that category are going to have to have palliative care.
14:01You have intractable pain.
14:03You're going to need high-dose opioids.
14:05You're going to need the fentanyl patches.
14:07You're going to need the oxycodones.
14:09You're going to need the morphines.
14:10And above all, in my opinion, every person who's in that category
14:14could have the new hydromorphone injectable microdosage.
14:19Okay?
14:20You order that from one of the specialty laboratories.
14:24It's by injection.
14:26It's given by analogy syringe or by an insulin syringe,
14:31just a pinprick under the skin.
14:33And in my opinion, every AA patient in the country, in this world,
14:38should have access to this new hydromorphone formulation.
14:43You're going to need it for not just flares but for regular control.
14:47You're just simply not going to make it with the weak opioids
14:51and with just trying one drug.
14:53I want to make one other comment here.
14:56A lot of you are aware of the term legacy patients.
15:00You're going to hear a little bit more about that.
15:03The great tragedy of the opioid problem is that we have people
15:08who have maintained successfully on high-potency opioids,
15:11high-dose opioids, for years.
15:14And all of a sudden, a bunch of nincompoops think
15:17they can just take them off.
15:19Take them off overnight almost.
15:21Put them on naltrexone, give them Motrin,
15:24or say they're not worthy of it.
15:26Okay?
15:27That's inhumane.
15:28That's unscientific.
15:29It's unmedical.
15:31It should never be done, and so I want to make it very, very clear here.
15:35Legacy patients, patients who have been on these compounds for a long time
15:39and done well should be left on them.
15:41I don't care what state they're in.
15:43I don't care where they are or where they've got to go to get them.
15:46They should be left on these things.
15:48And they should also be – the practitioners ought to be informed
15:51that adhesive arachnoiditis is a very severe life-shortening disease.
15:56People commit suicide all the time with it.
15:59They're in terrible pain.
16:01Their immune system is fouled up to start with, and then it makes it worse.
16:07You can't see anything good about it.
16:09So that is the situation.
16:11Now, I want to talk about a drug that's getting very popular,
16:15and that's ketamine.
16:18Now, most people know about ketamine infusions,
16:22but I'm talking about ketamine that is taken preferably by nasal inhalation,
16:34but it can be put under the tongue, and it can be even swallowed or injected.
16:38But ketamine is a real comer.
16:41It is the most potent non-opioid prescription pain reliever.
16:47Let me repeat that.
16:49It is the most potent prescription non-opioid pain reliever
16:55that is available to the adhesive arachnoiditis patient.
16:59It has to be compounded, but I highly encourage everybody
17:03who's got adhesive arachnoiditis to consult with their physicians
17:08and nurse practitioners, and in every community today,
17:11there's a compounding pharmacy that will make ketamine.
17:15It's all over the country.
17:16There's no trouble obtaining it.
17:18It's just a matter of a lot of people don't know about it,
17:21but it's getting to be extremely popular.
17:24Lastly, I want to talk about there are some herbal natural compounds
17:28that are good pain relievers, and there are some that are becoming quite popular.
17:32Some of the popular ones are palmitoyethanolamide,
17:36an abbreviated PEA, oftentimes made with luteolin.
17:40That's a darn good natural pain reliever.
17:44Among your herbal, your plant products,
17:46kratom is the one that is becoming the most popular.
17:52Also, your CBD products and medical marijuana are becoming very popular.
17:57And so some of these are the natural herbal products that I highly recommend,
18:01and a lot of people are out there trying some of the new ones,
18:04anything from poppy seeds to other roots or plants,
18:08and I encourage people to try those things,
18:11because gosh knows we need to discover some new ones.
18:14Lastly, I want to say one word about electrical stimulators.
18:18If a person has had a legitimate three-component program
18:23where you try to suppress the autoimmunity and inflammation,
18:26you try to regenerate tissue,
18:28and you try to get pain relief by the usual means and nothing's working,
18:32you're a candidate for an electrical stimulator.
18:35In other words, I'd much rather have somebody put in and get a stimulator
18:39or even an implanted opioid pump.
18:42If that's the only thing you can get, if you've tried everything else,
18:47these are acceptable things to have.
18:50In summary, these are the options that you have.
18:55Most people with adhesive arachnoiditis
18:58and maybe other forms of intractable pain
19:00are going to have to get whatever opioids they can get
19:04and other compounds like catorlax and ketamine
19:07from their local private doctors.
19:10Not a pain clinic, not going across state lines.
19:13You're going to have to probably get it from your local doctors,
19:16whatever they give you.
19:18It varies from community to community, state to state,
19:22and a lot of people don't like to hear me say
19:24that you're going to have to rely on your local doctors,
19:27but I just don't see another practical way out for most people today.
19:33Some of the advocates that we're going to call on in a couple of minutes
19:36may have some good ideas,
19:39but at this time I encourage everybody
19:42to get a good documented case of adhesive arachnoiditis
19:46and work with your local doctors to get what you can
19:49and then learn about the natural compounds,
19:51learn about your options,
19:53and try to build yourself a program.
19:56At any rate, this gives you a quick overview of where we're at.
20:01With that, I'm hopeful, like a lot of people,
20:04that the advocates of our country who are out there
20:07really trying to get less restrictions on opioids
20:11or protect what we already have are out there.
20:14They're doing a great job of representing us,
20:17and I've got some here with us.
20:20First off, I'd like to call on Kristen Ogden.
20:23Kristen, welcome again.
20:25Thank you.
20:27As you know, I've been one of your great fans for a long time,
20:30so if I say anything nice about you, it's just a routine.
20:37You've been out there fighting for patients for a long time,
20:41and you have some new developments.
20:45Give us some idea where we are in the country at this time
20:52on the availability of opioids.
20:56Why don't you start with that
20:58and then give us some idea where you think we are
21:01in the process of getting opioids more available.
21:05Well, I hate to say I think the availability of opioids is a huge problem,
21:11and I know some of my fellow advocates, Monty Goddard and Pat Irving,
21:14have been working on this very diligently,
21:17along with Dr. Ibsen and others,
21:20partly because of the opioid settlement agreements
21:23and the injunction from the court that went along with that.
21:26I'm also hearing something that's concerning me a lot,
21:29and that is that I read posts on Facebook and other places
21:33where individuals are saying, well, I'm getting my medications,
21:36but it seems like somebody is doing something to this product
21:40because it doesn't seem as potent as it should.
21:43I've taken this medication before.
21:45This is what I take all the time,
21:47and it seems like somebody is trying to kind of water it down.
21:50So the quotas still are reducing the supply.
21:54So we have a long way to go on that,
21:57but I know we've got a lot of people working on it
21:59who are good, smart, diligent people,
22:02so I'm confident we're going to make some progress.
22:05Tell us what we're doing, you and your group
22:08and the other advocates in the country.
22:10What are you doing to try to make sure
22:13that current opioid availability at least stays in place,
22:17and then secondly, to make it more available?
22:21And of course, I'm very interested in this whole supply thing
22:24where they're trying to restrict people from crossing state lines
22:27or going to a pharmacy more than 15 miles from their house,
22:31that type of thing.
22:33Well, there's a lot of people working on it.
22:35I think Monty and Pat are maybe a little closer to it than I am,
22:39Dr. Ibsen certainly, Red Laughern.
22:42And there's a big push on now to,
22:44there's been a Speaker's Bureau established for one thing
22:47that several of us are members of,
22:49where the group is pushing to get members of Congress
22:52to agree to speak with us,
22:55and the goal is to get congressional hearings scheduled
22:58to look at this whole problem of what's happening to patients
23:01and what's happening to opioid medications.
23:06What kind of a reception are you getting from elected officials
23:10or appointed officials?
23:13I would say it's a mixed bag.
23:15We've had some that were not too good.
23:17I sat in one with Pat and Monty a couple of weeks ago,
23:21and I thought that the staff members that we were talking with
23:25of a particular member of Congress were going to fall asleep
23:28and fall out of their chairs because they were just totally disinterested,
23:31and I see Pat grinning and nodding there.
23:34But on the other hand, I have also read some reports about discussions
23:38that seemed far more productive than that,
23:40so it's not something that I'm constantly involved in.
23:43I have involvement in a number of things,
23:45but I think it's a very good initiative,
23:47and there's a lot of promise there.
23:50And I think it's important because, unfortunately,
23:53as I can talk a little bit about later,
23:56we are not finding the federal court system
23:59to be initially very receptive to us,
24:03but we don't give up easily,
24:05so they just better get used to us pushing back
24:07because that's what we're going to continue to do as long as we can.
24:11Do you get the feeling that somehow you're talking about the courts,
24:15you're talking about agencies, you're talking about elected people?
24:20Am I correct in saying that there seems to be
24:23almost a wholesale animosity against pain patients
24:26or against opioids for patients?
24:29Am I correct in this or just my imagination?
24:33Well, from my point of view, yes, you are correct.
24:36I feel like people have been, and it's not recent.
24:39I think it's more public now
24:42because patients have gotten more out in the public,
24:45and we're trying, we're advocating,
24:48so perhaps it's getting a little bit more notice,
24:51but I think it's been the case for a very long time.
24:54The average citizen who does not understand anything
24:57about intractable pain or chronic pain at any level,
25:01we've been sort of influenced by the media over the last 100 years
25:04to have the opinion that opioid pain medications are just bad.
25:10They have no value. They're bad.
25:13Criminals sell them. Criminals use them.
25:17And even in our court case that we have going on right now,
25:22it appears to us that not only are the drugs thought to be bad,
25:29the people who use them are kind of assumed to be bad people.
25:32And part of what we're trying to elevate for public understanding
25:36is the bias and the stigma attached to the use of medication.
25:41Why in the world does somebody have a sign hung around their neck,
25:45more or less bad person, because they need a particular medication?
25:49Nobody does that to people who need heart medication
25:52or who need insulin or any other kind of medication.
25:57This is just a total slam and a sham against doctors and patients,
26:04and it's wrong.
26:06And that's why some of us got pretty upset when Dr. Bokoff was visited
26:11by the DEA just about a year and a half ago, almost now,
26:15and decided we were going to try to fight back.
26:17So we are.
26:19Yeah. Now, you have a movement going there.
26:23You're raising some money. You're doing some things.
26:26Do you want to tell us a little about that?
26:28Yes.
26:29You know, we had hoped when we started in November of 22
26:33that this whole thing could go more quickly.
26:36You know, we have a wonderful attorney.
26:38His name is John P. Flannery,
26:40and he is most definitely the right guy to be helping us with what we're doing.
26:46He put in our very first motion that he submitted to the court,
26:50the DEA internal court at that time, that this is an urgent problem.
26:54People have been just taken off their medications with no warning.
26:59They have had no opportunity to find another doctor.
27:01People are going to suffer greatly,
27:03and we are concerned that some people may die,
27:06which in fact has happened very sadly.
27:09But the fact that this is such a critical, dangerous situation
27:15seemed to have absolutely no impact on the DEA court at all.
27:20Ultimately, the DEA court turned down our motion to intervene
27:23and have a say in what happened to Dr. Bokoff.
27:26So our next available route to follow was to appeal,
27:31and the appeal got us outside of DEA.
27:34It's a real relief.
27:36Even though these judges haven't been as receptive yet as we want them to be,
27:40at least they don't all work directly for the DEA,
27:42which is the case when you're in that DEA internal court.
27:47We're optimistic.
27:48We think we have a strong case.
27:49We just have to keep pushing.
27:51And that's what's led us to put out the fundraiser.
27:54Early on, there were a few families who thought,
27:58well, you know, we have some funds that we can afford to commit to this.
28:02It's that important to our family.
28:04And if we can get it to some kind of an outcome
28:08in a not-too-long period of time,
28:10we won't have to go out and seek additional funding.
28:14But we're at a point where we feel that we must do that,
28:17and I'm really happy to see all the people who have already come out
28:21to get on board and speak favorably of us
28:25and what we're trying to do and encourage other people to donate.
28:30So far, I see several faces out here.
28:32Of course, Monty Goddard and Pat Irving
28:34have been very strongly in support of us.
28:37Just this morning, I saw a note from Brandon Pollard
28:40telling people they needed to get behind this,
28:42that this just might make the difference.
28:44Of course, we don't know what will make the difference,
28:46but we're going to keep trying.
28:48James got it up on the website.
28:50I've seen Dr. Ibsen pushing it.
28:52I have seen Valerie seeming enthusiastic about it.
28:55Valerie Kinsey's sitting out there.
28:57And we've also got some of the interveners,
29:00the patients whose names are in the court documents, who are pushing it.
29:04Jimmy Spaulding, who lives in Hawaii,
29:06has already been getting her friends to contribute.
29:08So we've got a lot of people who think it's important.
29:12You know, we're not saying that we're necessarily the people
29:15who need to have started it.
29:16We just happen to be the people who started it.
29:19But what we want to do now is continue,
29:21because we have, from the day the appeals court turned us down,
29:27which was February 20th, and said,
29:29no, these people are just purporting to be pain patients,
29:33like we're pretending or something.
29:36We have 45 days to file the next required documents
29:40if we want to continue.
29:42The court's decision of February 20th gave us 45 days
29:47to submit a petition for a rehearing.
29:51And we were able to ask for a rehearing with three judges,
29:55or, this is pretty cool, a rehearing, what's called en banc.
30:00It's a French term, E-N-B-A-N-C.
30:03And it means with the whole shooting match.
30:05And so what we're going for is to have another petition,
30:10to have a rehearing that would be,
30:14we'd have all 15 of the appellate court judges
30:18receiving our materials and participating.
30:21Mr. Flannery tells me that if we can get even one of them
30:24to take our side, it might be enough
30:26to get us into the Supreme Court.
30:28Now, of course, I wouldn't shoot down all 15.
30:31You know, we didn't get support from the first three.
30:34But some of the things that they've said
30:36are very ugly, untrue, and painful.
30:40They basically referred to the patients
30:44as purporting to be, pretending, you know,
30:48pushing themselves as patients when maybe they're not.
30:53Maybe they're just those same old addicts
30:55that we're all tired of hearing about, you know.
30:57Well, we're not going to leave it with that.
31:00We're just not.
31:02So we really, let me just say quickly,
31:04I want to thank everyone who's already contributed.
31:07I got on the website about an hour
31:10before this meeting started.
31:12And I think at that point, we had $2,500,
31:16and it just went up day before yesterday.
31:18So, you know, it's going to cost a lot more than that.
31:21But every $10 donation helps.
31:24And we want to encourage everybody,
31:26no matter how much, how little,
31:28if you can contribute something, it will make a difference.
31:31And the other thing I see making a big difference
31:33are the people who have contributed
31:35and are also talking it up on social media.
31:39Monty and Pat and Brandon putting it out there
31:42and saying, hey, you really need to sign up
31:44and get on board with us.
31:45And we thank you all very much.
31:47Yeah, Kristen, that's terrific.
31:49Welcome.
31:50I'm here.
31:51I've missed y'all too.
31:53Thank you for the welcome.
31:58Kristen, I just want to applaud your efforts
32:01and, you know, I've heard you speak,
32:05and you are a deck and powerhouse of a woman
32:09with your words, your message.
32:11It's so powerful.
32:14I've not been on Facebook for a while,
32:16and I've somehow missed this whole,
32:19what is it, fight back against DEA?
32:23Yes.
32:24I've missed that.
32:26Well, I'm not finished with my efforts
32:28to get it out there yet,
32:29but I've had some appointments,
32:31and I feel like I should sit at my computer
32:33like 24-7 trying to push it out more places.
32:36Anyway, we'll do that.
32:38Right, but yeah, you're a person
32:41that you're not going to go away easy,
32:44and you're just amazing.
32:46Keep it up.
32:48Thank you so much.
32:50Yeah, Kristen, thank you so much.
32:53Great positive message, and keep it up.
32:55We're with you.
32:56Sure will.
32:57Thank you.
32:58Thank you, Kristen.
32:59Carson, are we bringing him on here?
33:01Yes, sir.
33:02Yes, sir.
33:03Yes, please.
33:04Welcome, Carson.
33:05Thanks for being here.
33:06No problem.
33:07Glad to be here.
33:08Sorry I'm late.
33:09Hello, Doc.
33:11Carson, you bet.
33:14Carson, first off, tell us where you're physically
33:18at right at this moment.
33:20Where is your home?
33:22Houston, Texas.
33:24You're in Houston.
33:26You've been there a long time, or are you fairly new to Houston?
33:29Well, I've been here most of my life.
33:31Most of your life.
33:33And your pain problem is what?
33:36A lot of things.
33:38It's a lot of spine and spinal cord injuries
33:41from the initial accident that caused all my problems.
33:46I was rear-ended at 60 miles an hour,
33:49and it did my back.
33:54Now I've got those still,
33:58and they've been operated on as much as they can be operated.
34:03And in 31 years, I've acquired over 50 diseases.
34:10One of them is cancer, and the others are pretty significant.
34:16Kidney disease, peripheral polyneuropathy,
34:20and tractable pain, arachnoiditis.
34:23All the useful ones, but I've got questions.
34:27I'm a complex patient.
34:29Doctors don't want complex patients.
34:32Hold that thought for just a moment.
34:35How old are you now?
34:3772.
34:39How old are you now?
34:4072.
34:42How old?
34:4372.
34:45You're 72.
34:47Now, you were in good health until you had the accident?
34:52Yeah, right up.
34:53I was going my way to work one morning, stopped in traffic, got hit.
34:59That was the end of my life.
35:02What age were you at that time?
35:0541.
35:06You were at 41.
35:07Now, after the accident, were you hospitalized or did you go home?
35:13Tell us what happened right after your accident.
35:16They took me to the hospital by ambulance, and their MRI machine was out,
35:22and they took regular x-rays and said,
35:25oh, we don't see any brick.
35:27You just go on and see your regular doctor tomorrow.
35:31So I went to my PCP, and for about nine months,
35:36I was under his care and physical therapy, light, step one drugs.
35:45It just wasn't helping, and finally he and the therapist
35:50and the chiropractor and finally a surgeon said I did have it.
36:00I had three now.
36:03What did they say you had at that time?
36:07Oh, I had herniated disc and bulging disc.
36:11I had to replace the disc in my neck and lower back.
36:15Did they replace discs in both your neck and your lower spine?
36:19Just the neck.
36:21In the neck.
36:22Okay.
36:23What did they say about your lower spine?
36:25They opened me up from L1 to S1
36:29and decompressed all the discs in the lumbar and S1.
36:36They didn't put in any transplants or a cage or anything?
36:41No.
36:42The only metal hardware I received was in my neck.
36:45It was a metal plate.
36:47Okay.
36:49How old were you when you had the metal plate and your decompression done?
36:55The metal plate work was done in 94,
37:01and the decompression was done in 2000.
37:062000 what?
37:07In.
37:08Okay.
37:10Did you do better after the neck surgery?
37:13No, absolutely not.
37:15The first neck surgery was a complete failure.
37:19They used donor bone, and it didn't fuse.
37:23A year later, they had to go back in,
37:26and they took bone out of my neck and used a metal plate to make sure that it fused.
37:32It's been chronic pain ever since.
37:37How much time elapsed between your trauma when you had the accident
37:43and the time you had your disc operated on in the neck?
37:48About 10 months.
37:50About 10 months.
37:55Were you in medical treatment at that time?
37:58Were you able to work?
37:59Were you bed-bound?
38:00Tell us about your function at that time.
38:03Yes, I was trying to work.
38:06I would have to stop every hour and go lay down in the office,
38:13and I'd have to go see doctors and therapists.
38:18I did that for nine months,
38:20and I had to take off when I was told I had to have surgery.
38:24I was going to lose the use of my arm, they told me,
38:30and so I didn't really have a choice at that point.
38:33I did not want to be a paraplegic.
38:37I take it that you became totally disabled somewhere along the line?
38:42Yes.
38:43And couldn't work?
38:44Uh-huh.
38:45How old were you when you were declared disabled?
38:49I was still 42 by the time I was after my surgery.
38:55Uh-huh.
38:56So you've gone for 30 years disabled?
39:00Yes, over 31 years disabled.
39:03Bang.
39:04And how have you been able to support yourself during this time?
39:08I just saved money along the way while I was working.
39:13Uh-huh.
39:14Have you been declared disabled?
39:16Are you on SSI or disability?
39:18Yes, I'm on SSI and been declared disabled by a judge.
39:23Uh-huh.
39:24And how long have you been on disability?
39:26Since 1993, I believe they backdated it to the first surgery.
39:37Uh-huh.
39:38Now, you said earlier that you are a complex case.
39:41Yes.
39:43And that you've had a lot of diseases and the doctors don't want to see you.
39:50What do you mean by a complex case?
39:53By having so many diseases that cause pain and they all do it at the same time.
40:00You don't have any control over when they're going to send pain.
40:04But every disease I have is very advanced at this point.
40:09Can you give us a list?
40:11Give us your four or five diseases that you have.
40:14The list?
40:15Did you not receive it?
40:17It doesn't do me any good.
40:19I want you to tell the audience out here about your case.
40:22Well, about six.
40:23I want you to tell the audience out there.
40:25There's more than one person in your same boat, okay?
40:29That's why I'm here.
40:31It's for them, not for me.
40:33Yeah.
40:34I've got about 16 different back diseases that initially raised their heads.
40:41And that's what kind of alerted me to the disease problem.
40:45And I monitored it after that.
40:48But the diseases for my back were initially the disc deterioration disease
40:56and the advanced osteoporosis were the first things I was told.
41:02And then the scoliosis and the spondylosis, curvature and bulging of the spine.
41:10And then came all the others that came along with it, like spinal muscular disease,
41:16muscle atrophy, musculoskeletal disease, spinal stenosis disease,
41:25skeletal disorder disease.
41:30And were you told that all these were due to the accident or why?
41:35What caused all these things?
41:37That's the only possible explanation.
41:39I never had a problem before the accident.
41:42Uh-huh.
41:43So, now, how did the accident cause these things?
41:52Did they ever give you an explanation?
41:53You were rear-ended, went to the hospital, and they sent you home.
41:57So, how did you end up with all of these diseases?
42:01Along the way.
42:03The doctors were doing tests and imaging, and they diagnosed it off of those.
42:09They diagnosed it.
42:10But what I'm getting at is that how did they tell you that trauma caused all these problems?
42:19I think the words they used were high impact.
42:25And my theory is that when you get hit that hard or you're injured that dramatically,
42:34I think that's your body chemistry.
42:38And that's a chain of reactions.
42:41The first thing I think that went was my immune system, although it wasn't discovered until later.
42:47But the fact that all my diseases had begun, I think it had to have been down low.
42:53And everything else came after that, pretty much.
42:58Uh-huh.
42:59Okay.
43:00And what diseases have you had besides the spinal diseases?
43:06I've got kidney disease now.
43:10They failed about four times, and they're operating at about 60%.
43:16The nephrologist said it was stage two.
43:21Dead bones from not getting enough oxygen and nutrients out of your bloodstream
43:27because of the damage from the accident.
43:31Motor's disease.
43:32And I think everybody that's been severely injured should have their thyroid and endocrine system checked
43:39because it seems among all the chronic pain patients that I've seen.
43:46Have you found that, Doctor?
43:48Well, let's go back because now you're really getting to the heart of the matter here.
43:52What you're saying is critical.
43:53You're absolutely correct.
43:55Can you repeat that again?
43:58Yes.
43:59You said your immune system went, and then your thyroid system went.
44:04Okay.
44:06My thyroid was overproducing or underproducing.
44:14I'm taking Tyrosine now for it.
44:17Uh-huh.
44:18Good.
44:19Vitamin B2, 20,000 MeQ.
44:25Yeah.
44:27I can actually notice a physical difference and change in my health.
44:35Excuse me.
44:36Did you mention Hashimoto's, Carson?
44:40Hashimoto's disease is a disease of the thyroid.
44:44Is that one of your diagnoses?
44:47I'm sorry.
44:48Yes, it is.
44:49Okay.
44:50Yeah.
44:51Yes, Doctor.
44:53Yeah.
44:54Now, do you have some doctors now?
44:58I mean, you've had all the spine disease.
45:01You go to a spine center.
45:03You have a chiropractor.
45:05What kind of medical care are you getting now?
45:07I'm not getting any medical care now, unfortunately.
45:11Well, now, you have some doctor prescribing medicines for you, I take it.
45:16Well, I have a doctor for my endocrine system.
45:21I have a nephrologist.
45:23He doesn't prescribe anything.
45:25Uh-huh.
45:26I have a neurologist, neuropathy, and he doesn't prescribe anything,
45:33which is I'm allergic to the Cymbalta and the Gabapentin and the Lyrica,
45:39which is a bad thing, evidently, according to the doctors.
45:45So what are you doing now for the pain?
45:48Supplements, marijuana.
45:51That's all I've got.
45:54What are they again?
45:57Supplements and marijuana.
46:00That's all I've got.
46:01That's all you're doing now?
46:03Uh-huh.
46:04Well, you said the doctors didn't want you because you're too complex?
46:09And so I went and was put into hospice after they diagnosed my cancer,
46:16and I was within the hospice for two years and received some medication,
46:23not what I'd received in the past, but it was helpful.
46:28It just wouldn't allow me to walk.
46:31It just crippled me by under-treating me.
46:34That's great.
46:36What kind of cancer did you have?
46:39I've got non-small cell squamous lung cancer, stage four.
46:44Okay.
46:45Uh-huh.
46:46All right.
46:52Now, can we go back here for a second?
46:55You said something earlier that perhaps you can share
46:59and maybe pass on some very hopeful hints to some people.
47:05Given your accident and all that's happened to you, you've survived.
47:09It sounds like I'm not quite sure how you've survived,
47:12but you've managed to do so.
47:15We've got a lot of people watching this who've had trauma.
47:19They've fallen off a roof.
47:21They've got injured in the military.
47:23Domestic violence, again, rear-ended.
47:28Auto accidents are thousands a year.
47:31What advice do you have for anybody who's been in a serious accident?
47:37To document every medical piece of information
47:43that happens along the way in their care.
47:46Keep a record of everything because you need it to prove your case.
47:51You now need to prove everything.
47:54They can't look at the facts and use their own brain anymore.
47:59We have to educate them.
48:02Right.
48:05Along that line, do you feel –
48:08now, you've actually been seeing a lot of doctors,
48:11and you've been going on 30 years with this.
48:15And you're in Houston.
48:17Houston's known as having great medical centers, good medical schools.
48:22I was a resident, an internal medicine resident,
48:26at John Seely Hospital in Galveston at one time.
48:30And bottom line is you're in a place in the country that's thought of
48:35as to be one of the top medical communities in the country.
48:41My question, do you –
48:43have doctors changed over this 30-year period of time,
48:47either attitude or competence?
48:51What's your thoughts?
48:54When I grew up, everybody was taken care of by their PCP.
49:00Nobody had special permission to write scripts for pain medicine.
49:04If you were hurting, you were given medicine, palliative care.
49:09There was palliative care back then.
49:11You would get pain medicine at palliative care.
49:14Now, everyone I've contacted in Texas doesn't treat pain.
49:19They're going to treat my constipation and my nausea.
49:22Well, great.
49:23I can get anybody to treat that.
49:25I can treat that.
49:30You mean we're really educating good constipation doctors?
49:34Is that it?
49:36Exactly.
49:37You know, don't you want to go into palliative care
49:39so your constipation goes away?
49:41Yeah, right.
49:43I think we can say a couple of other things about intestines
49:46and doctors these days too.
49:48At any rate, so where do you go from here?
49:53I mean where – you know, I'm amazed you're still alive.
49:57I'm amazed it sounds like you're still trying to stay with us
50:00and spread and be helpful.
50:03What other advice do you have for yourself or for the audience here?
50:09Not to be afraid of death.
50:11I think everybody needs to know it's not the end.
50:14It continues.
50:15Life continues.
50:17I've had a near-death experience.
50:19That's how I know.
50:22I'm a knower.
50:23I know this.
50:24I don't believe it.
50:25I know it.
50:26It's life.
50:28But I just want to take that fear away of everybody
50:31because that's what everybody's afraid of.
50:35We've never had anybody on this show describe their near-death experience.
50:39To close us out, tell us your experience.
50:43My lung had collapsed in my sleep, and I woke up suffocating
50:48and managed to get to a convenience store across the street
50:53from where I was staying, and the clerk called a taxi for me
50:59to get me to a doctor because I couldn't speak well enough to do it myself.
51:08It didn't make that long.
51:10I collapsed.
51:11Basically, that's when I died, waiting on that taxi.
51:16But another car pulled up.
51:18Two black shadows pulled up and grabbed me, threw me in the back of their car,
51:24stuffed me in a mug, but they took me to the doctor's card in my wallet.
51:30He said I was suffocating and take me to the hospital, and so they did.
51:37That's when I left my body, or when I realized I had left my body,
51:45and I was riding on my shoulder.
51:47I was in the emergency room, and in the emergency room, I went up to the ceiling.
51:52My body went over to the table, of course, and they did everything they were doing,
51:56but I watched the whole thing from the ceiling height,
51:59looking at myself in the whole room.
52:02It was fantastic.
52:04I felt there was no pain, but I watched him cut me open,
52:08ran this big old air tube into my chest tube,
52:14but they took me to x-ray, and the oxygen tank ran out of oxygen,
52:20and I blacked out, and off I went, and traveled at the speed of light
52:26through the tunnel that everybody calls it, I think it's a wormhole,
52:31but I was stopped in the middle of it, and I heard a voice from my left side,
52:38two foot away, saying, not yet.
52:41There is more to be done.
52:43That's all I was told, and I was put into reverse and sent back.
52:48Speed of light, back, and I ended up in an ICU room.
52:52Across the room, there was my body laying in a bed.
52:57Well, Carson, it's obvious that the good Lord didn't want you yet.
53:02Not yet.
53:03Why did he leave you here?
53:07I don't know.
53:08There's something to be done.
53:10So what are you doing?
53:12I'm trying to do something, maybe talking to me.
53:16Carson, you've been lovely to visit with, okay,
53:24and I appreciate the candor and listening to my penetrating questions.
53:29I think you've got a lot of messages for a lot of people.
53:33We're grateful to have you here and to speak up so candidly.
53:38God love you, and we plan on you staying with us for a while.
53:42It's obviously the good Lord intended you to stay with us.
53:45Thanks so much.
53:46We'll close out here this evening.
53:49I'd like to just close out by saying thanks to Kristen Ogden, Dr. Mark Hibson,
53:56and all the people that are working on advocating for better treatment
54:02and less restrictions.
54:04I also want to thank all of you for such a great chorus of birthday for my
54:09lovely wife, and at any rate, we'll have a good show next week.
54:15We're making a little headway.
54:17And then let me just close out by one other thing.
54:20You've just heard a band who survived something, and, you know,
54:27we're going to make progress in helping each other when we share things that
54:31work, okay?
54:33Gripes don't get us very far, but when you've got something that works,
54:36an idea, share it, not only on your Facebook group, send it to the program.
54:40Keep sharing.
54:41It's been another good evening, and we'll see you next week.
54:44Thank you, Jimmy, for your help here tonight.
54:46Good night.
54:47Good night.
54:48Thank you so much.
54:51Thank you all.
54:52You're not alone.
54:53We'll see you next week.
54:55Thank you.
54:56Thank you, Jimmy.
54:57Thank you.
54:58Thanks, everyone.
54:59Thank you, everyone.
55:00Good night.
55:01Love you.
55:03Love you guys.
55:04We love you too.
55:06And happy birthday, Miriam.
55:08Good night.
55:09Be good.
55:10Good night.
55:12Thanks to everybody who's helping us with the donations.
55:15Thank you, Kristen.
55:17Happy donating.
55:19Thank you.
55:23Thank you, everyone.
55:25Bye.