EP03 - Paralyzed from Metal Hardware: From Full Quadraplegic to Fully Healed!

HM EP03

[00:01:18] Shari: Hello Metalheads and welcome to the Jungle! We have a guest who has just an unbelievable story—literally unbelievable. 

[00:01:27] Dana's joining us from Washington and I came across Dana's story through an incredible doctor that was actually his treating doctor and Dana doesn't have much by way of introduction because part of his story, which he's going to tell you, is that he spent many of the last years paralyzed as a full rigid quadriplegic for most of every day until they could figure out his metal allergies. So without further ado, Dana, welcome to the Heavily Metalled Podcast. 

[00:01:58] Dana: Thank you. 

[00:01:59] Shari: So let's get into your story. Before we get into the nitty gritty, why don't you go back and tell us who Dana is. Tell us about growing up, tell us what your hobbies and interests were, where you grew up, your education, career…the goals you had. Kind of give us the background of, of who Dana is. 

[00:02:18] Dana: Okay. I grew up in Eastern Washington state, on a dryland wheat farm. I was the youngest of four kids. For hobbies and such, I enjoyed outdoor activities and stuff, but growing up on a farm we did pretty much everything as a family; the mother and father and four kids. We did things, and we were very active, outdoorsy type people. Then went to college at Washington State University. Got a degree in mechanical engineering.I had worked as an intern during college, at a hydroelectric dam for the Grant County PUD. So that was my goal in life. Got that job after, graduating, and worked at a hydroelectric dam where I helped the little salmon up and down the Columbia River and, ended up being a licensed mechanical and civil engineer. Loved the job. Did that for 30 plus years, before the metal allergy scenario kind of took a hold of my life.

[00:03:17] Shari: Okay, well I guess that's not a bad job to have. The salmon probably don't talk back, right? Okay. So tell us how the whole metal allergy came about. So usually before the metal allergy we’re proceeded by some kind of medical intervention. So why don't you start at the beginning…whatever you feel is relevant, and just bring us through the journey.

[00:03:40] Dana: Well, I can, I can do that now because I've lived through it and I can go back and so I'll give you a little more summary than I would've otherwise. So, just the regular kid that had the normal fillings. So at probably age nine through 15, I ended up getting six amalgam fillings. As far as dentistry work, I mean no, no problem there., so that was the first metal I guess that I had in my body. And then I had a, an ACL replacement, so they put a, titanium screw in my knee at that point. Then the weird thing happened. Well, it actually started when I was about 35 years old.

[00:04:19] My toes started to curl, and by age 47 my toes had curled far enough to where the toenails were on the bottom of my feet. that's when I started seeing podiatrist and, and neurologist and that's when they first realized that I did not have any feeling from my calf down to my foot.

[00:04:41] So then did extensive workup with, neurologist at the, uh, University of Washington and also at Mayo Clinic, trying to figure out where this peripheral neuropathy was coming from. And I also tested as if I had an autoimmune disorder.

[00:05:00] Shari: Which one did they think you had? 

[00:05:03] Dana: It wasn’t any of the known autoimmune disorders. It didn't have a name. And so that was a little perplexing as well. Then this neuropathy that started in my feet, then went to my fingertips and I lost feeling from the bottom of my feet clear up to my hips.

[00:05:21] And then from my fingertips…basically all of my arms. And then, when I was back at Mayo Clinic, I had spinal stenosis. So I had a restriction in my spine. That eventually that was gonna cause me problems. So I had a surgery to correct that. And following that surgery, I lost all feeling in my entire body.

[00:05:41] Now, this wasn't just my feet, arms, legs, but also my core. I had no feeling until it actually went to where…even my head, I have no sensory or, or, feeling anywhere in my body.

[00:05:55] Shari: We're not just talking. It was numb. We're talking zero feeling. You put your hand on a skillet, you don't feel anything?

[00:06:01] Dana: Don't feel it. I mean, it, it, it turns red like it would when I…with a burn, or if I cut it, I see blood, but I do not feel it and, and so that was, concerning. But then the story gets better or worse from there. When I was 49 years old, I woke up one morning, the alarm was going off and I couldn't turn my alarm off. I was paralyzed. 

[00:06:22] I remained paralyzed in bed, for about 45 minutes, till finally I could get up and go and that was a weird thing, but since I was already seeing neurologists at the University of Washington and at Mayo Clinic, it just added to my list of things. In other words, I went back to see them and it was kinda like, well, this is interesting, but we'll just watch it.

[00:06:44] Shari: So you wake up, your alarm's going off, you now cannot move at all. What's the first thing you think?

[00:06:52] Dana: I quite frankly, I thought my wife would turn the alarm off. It was nothing really unusual, it was just like, oh, no, now, now what's going on? So it wasn’t…it wasn't like as earth- shaking as you might think

[00:07:04] Shari: You had weird things. You just took it in stride and figured that this was another weird thing that was probably transient.

[00:07:11] Dana: That's right. That day I went to, to work and called my doctor… my neurologist at the University of Washington said, “Now look what happened,” and it's like, “Well, we'll get you worked up.”. At that point I was an interesting case. “So tell us all that’s happening…write these things down so you can give us a record of what's going on…”, but there wasn't much in way of them saying, ‘“Here, let's try to find an answer for this”’. They, they were kind of perplexed.

[00:07:37] Shari: You were a case study. 

[00:07:41] Dana: Yes. I went on with, life as normal. I love my job. Like I said, a mechanical engineer worked at…and at this point I had, staff type working for me.

[00:07:50] And so this paralysis wasn't just in the morning. Then it eventually got…if I would stop moving during the day, and what I mean is, if I was doing an activity and then I would sit down and stop, I had the chance of being paralyzed, and that would be somewhere between 45 minutes to two hours. And then, then I just, what we would call, just “thawed out” and I was able to start moving again. 

[00:08:14] And so, I had a staff of people that worked for me and loved the receptionist. She was at the front desk…

[00:08:21]  Let me step back one step. The, the worst part for me would be if I would come into the office and sit down and read an email. There was a strong chance that if that email was more than a page or two long, I would be paralyzed.

[00:08:36] And I, so I would just be sitting, staring at my, my screen. My receptionist then would, would tell people when they came in, well, he's, uh, kind of busy right now. You can come back…you know…she’d get the information of what, what they wanted. And I typically got..I worked to get the job done. So in a day's work, I would get it done. 

[00:08:56] That's where life went. And it finally got to where it was almost every day I would have an episode. And it wouldn't necessarily be at day, at during the day/workday. It could be after work or when I woke up, and it got to the point where my employer said, “Uh, we're concerned that you're gonna die on us”, kind of thing…

[00:09:15] And so they said, “You know, we want, we wanna, put you on disability.” And at that point, that's when I guess I really turned the cranks up for the medical industry, in other words, University of Washington. It’s like, "What are we doing”? It's kinda like they're just documenting what's going on. And I said, ‘Can I get back to Mayo Clinic’? And they give you a very good workup. 

[00:09:39] Mayo Clinic and this time gave me the complete workup again. Looked for all kinds of, uh, metal toxicity, in other words, nickel…all, all the heavy metals… I wasn't toxic to any of those.

[00:09:52] Did all their, their lab work and they couldn't come up with anything. It was like, “We don't know what this is”. Sad but true. They kinda left it as a, a convergence disorder-in other words, a mental…that for some reason, I was trying to avoid something so I would become paralyzed.

[00:10:09] And that was, that's when it started to be troubling for me because they weren't looking to solve the problem, it was just to give a, a tag of what I had. The other thing they, they did is they called it “Episodic Rigid Quadriplegia’, which only means that I have episodes where I'm a rigid quadriplegic. In other words, there isn't any more than a definition of what was happening to me, was their diagnosis, if you would.

[00:10:36] Shari: So tell me..okay…so you have these episodes where you're paralyzed. Tell me what that feels like. So many questions! What does that feel like inside your body? Do you feel hot and cold? Do you feel like you have to go to the bathroom? Can you communicate at all? How do you keep your mind…? Tell me what that looks like, because most of us, God willing, have not experienced that and, and would not experience that. Fortunately. You sound like a really laid back guy. . So, I mean….

[00:11:05] Dana: Well, this kind of forced me to be that laid back type of guy. And actually the preamble to this actually gave me that experience, because, like I said, I have no feeling anywhere in my body.. any sensory feeling. I don't feel hot, I don't feel cold. Most things I could eat, uh…jalapeno peppers..now, I couldn't do that before…I mean…so I've lost most of those sensations. 

[00:11:27] Shari: So do you have to go to the restroom?

[00:11:29] Dana:  I do it as a matter of habit, versus that I feel that I have to. 

[00:11:33] Shari: OK, but like when you're paralyzed, how..how does that work? Does that all shut down when you become paralyzed? How does that work?

[00:11:39] Dana: So, I'll step back a little bit on being paralyzed. So when I would become paralyzed, if I was like sitting at a computer..like typing something..the hand that I was using to type with would still work. Everything else would be paralyzed.

[00:11:53] If I was talking at the time, I would be able to continue carrying on a conversation. Playing games with the family…we’d play cards. If I would become paralyzed while paying cards, I could still move my arms to play cards, and I could still talk as long as I kept going, but other than that I couldn't.

[00:12:09] But again, the worst place for me would be in church, cuz you sit down and you're quiet. Church and airplanes are two…two worst places to be, because if I sat down in church and I was quiet…by the end of the service I was stiff. My mind is there. I’m seeing everything that goes on, but I cannot speak. I can't do anything.

[00:12:27] I have no, bodily functions. In other words I don't feel like I have to go to the bathroom. And, you know, the paralysis, as it advanced, got to where it was eight…nine hours at a time. I just didn't have the feeling that I had to. It wasn't really an issue. And I actually, I went to urologists and such trying to figure out what's going on here because when I go for that period of time..I mean, it, it wasn’t causing any detriment to my body. So as long as that's just like my legs I could tell were cramping by looking at ‘em…but I couldn't feel it. So the typical doctor's response: “Well, if you're not feeling it..”, you have to have the urge to, to go to the bathroom…”Don't worry about it”. And so, quite frankly, I didn't. And so I didn't have those concerns and I didn't have those worries.

[00:13:14] Along that line..I’m maybe jumping a little bit ahead, but we love being active. Our family, we would go swimming a couple instances where I became paralyzed in the water, where I would go under. And I mean, I would go into the water..my wife or kids, would get me up out of the water, but to this day, I never had the feeling that I was drowning or anything. It just happened. They'd get me up I didn't have that panic feeling.

[00:13:38] Shari: So you are under the water…you’re paralyzed and you never had this thought…what if they don't notice I'm under here?

[00:13:44] Dana: No, no, that’s….luckily they were like doing a, a water aerobics class, so other people would see…saw me. I mean…you know, thank God that it didn't happen when I was by myself or I probably wouldn't be telling you this story, but that's where it was.

[00:13:59] And normally, and then, like I said, then you could get me back up… I would have no, you know, panic feeling or anything like that. 

[00:14:06] Shari: And when we were getting to know each other, you told me, you, you and your wife actually went on a cruise. So you, you traveled with this going on!

[00:14:13] Dana: Well, yes, and she's an angel. We've been married 41 years. She's been through this whole ordeal with me. And the one thing we decided, because both our parents were getting older… and we saw, as they got older, they cut back on travel. We said, ‘we're gonna continue to travel’ and we love to cruise.

[00:14:31] But what that did is my wife actually went to quite a few physical therapy appointments with me…but not for me…but for her to…how to get me out with a gait belt. How to move…cuz I'm a big guy. She learned how to maneuver me so that we could in fact continue on life and do travel.

[00:14:52] And so we did travel. Like I said, the worst…worst things were getting in an airplane. Get on in Seattle…say if I had a layover in Denver, by the time we made it to Denver I would be paralyzed. And at that point, they had to get an aisle chair to get me out of the chair. And, you know, get me at the airport, get me into a…another airplane, say if we were heading to Miami and then usually by the time we got to Miami, uh, I would be thawed out and I would be able to, to function. But that was always, uh, an interesting thing for my wife, because we would both walk…get on the plane just like two normal people…and then at the end of the flight she'd hit the call button and say, uh, I need an aisle chair.

[00:15:31] And the, flight attendants would just be kind of beside theirselves… “Oh, we're so sorry we didn't remember you coming on”, And, and she's like, “Well, no, he, he walked in and sat down in the chair just like the rest of us…”, but then I would become paralyzed.

[00:15:44] And it was a challenge. If we were gonna live life we continued to live life with the circumstances that we were…we were given. And so we just kept going. And like I said, she…she was an angel. She…she’d get me up and we would…she would be able to get me where we were going and we kind of had a understanding of how this worked.

[00:16:08] If I was active and then I would stop moving, then I would typically become paralyzed, and then becoming paralyzed it would be anywhere from three to seven or eight hours. And so our life…we just kind of worked around that. In other words, when I was no longer going to work. We moved, near Spokane.

[00:16:24] So she wheeled me out on our, our deck so that I could look at the mountain when I was paralyzed. We finally got into a routine where, uh, we picked up pickleball and we played pickleball in the morning, and we played our hearts content like seven, eight o'clock in the morning, until like 11 or or noon.

[00:16:42] And then we knew that we'd have to come home and quick eat, like lunch, because after that, if I sat down, then I was gonna be paralyzed, typically for the rest of the day. And so that's kind of the way…we just went with it. I woke up in the morning and I couldn't move, then we weren't gonna do anything until, till I did start moving, so that was just the way our life evolved. 

[00:17:04] Shari: And what precipitated the, the thawing mechanism? I mean, you call it ‘thawed out’. What, made you thaw out? 

[00:117:13] Dana: Well, I, I can't tell you any more than what made me me freeze. So I would be froze up and then usually I could start moving a finger or a foot…and that varied too.

[00:17:24] Sometimes that would…I could be completely thawed out, if you would, in five to ten minutes. Other times it would take as much as like two hours before I got to keep moving. And like I said…we could…you usually kind of figured it out. Once my wife could get…for example…after church…if we would…she’d get me up, use the gait belt…get me up…and I, I would walk kind of like Frankenstein.

[00:17:48] In other words, my, my knees wouldn't bend. My elbows wouldn't bend, but I could move to where I could get to a vehicle, so that we could go home. That was another early on, when it first happened…like when I was sleeping or sitting on a computer. Then we've learned that if I was not driving the car, more than likely, by the time we got to where we were going, which was usually an hour or longer away, I would be, paralyzed. And so I would just sit in the car. And if we went shopping, she would do all the shopping and we'd come back home and she'd park the car in the garage and when I finally came to, I would get out of the car and go back into the house and continue on. 

[00:18:25] So those…that was just life. That was the cards we were dealt in. So we just, uh, went with it. 

[00:18:31] Shari: And what did you think about during these times that you couldn't move? You said she put you in front of the mountains. Did she put you in front of the tv? Did you play games? What did you do?

[00:18:41] Dana: Couldn't do anything like a video game or anything like that, that had to move, because typically once I was froze or paralyzed I couldn't do it. Typically would be…if I knew that, like for example, after I'd had done an activity, I’d sit down and, and watch and I'd be on tv. The unfortunate part is modern technology has got there and if you don't move your remote for like two hours, it would go off and so then I would just be staring at the tv.

[00:19:08] And so, the things I would do… I would do mental type activities. Like, ‘oh, when I can move again, I wanna tell my wife that we need to move the water’, or we need to do this… And so I would then come up with mental, stories in my head to remember the things that I wanted to tell her when I was able to speak again and we could, we could actually function again.

[00:19:31] Shari: You had a doctor that you, I think said that you were going to visit, and you weren't paralyzed when you got there, and…and you made him pretty angry. Tell us, tell us about that story.

[00:19:41] Dana: As this progressed my wife…and we went to many doctors in Washington…I mean, across the country. But, as we did that, she learned that in the waiting room she had to keep me talking. In the room where, where I was going to see the doctor, I had to keep moving. In other words, I couldn’t…I couldn't sit down in a waiting chair. And she would always keep me talking because that was precipitated. I went to a… a neurologist. He was a specialist and came in…waited in the waiting room…and then went to his exam room, and when he came in 25 to 30 minutes later, I was paralyzed.

[00:20:15] At this point I could not speak. I could not move. And so he said “Have him take his shoes and socks off.”, And so my wife bent down to and he said “No, I want him to take it off.”, and she looked up at him and says, “He's paralyzed. He's not gonna be able to do that.”, and the doctor got very indignant and was saying “You're, you're wasting not just your time, you're wasting my time. Why did you come in here if I can't examine him?”. And it's kind like, well, cuz we're trying to figure out why he's paralyzed.

[00:20:43] That was a very short, stint with that doctor just because, I mean, he didn't wanna deal with me. I would end up talking to her and just walking around waiting to, to see a doctor, including in the exam room. if I wanted them to be able to examine me or be able to move.

[00:21:00] Shari: Wow, that's a lot. That's a lot Dana! So, okay, so we, we don't have any answers at this point. You've accepted that this is just kind of how life is. Where did you get the break in the case?

[00:21:16] Dana: Break in the case is kind of…kind of interesting. So we'd gone on a cruise, a Mexican Riviera cruise. We went down and we love to snorkel. My wife and I, we went snorkeling on an excursion and when we got out of the water, I realized that when I put on my fin, I had bent my little toe back in the fin. So it was definitely broke. It was facing the wrong direction. So at this point we went back to Dr. Schroeder, which my podiatrist that we had seen.

[00:21:45] Uh, we had since moved to Spokane versus the location where we were at, but he was the guy that had done all the stuff to my feet. So I said, ‘let's go back and see what he says’. Well, got back and it's kinda like, ‘well, that toe’s broke, but what we'll do is we'll just tape it to the other toe’.

[00:22:00] That wasn't a big issue because again, as most or all things going to a doctor, as long as you don't have any pain and you're not feeling it, if they can just tape it up or whatever, you go on. But he did see that my foot, actually both my feet, were thickening quite a bit and I hadn't seen him for like five years in between there.

[00:22:22] We were, we were in Spokane, looking at the mountain…uh..living life the way we could…and so I had not really checked back in with the podiatrist. My family doctor had been documenting and, and taking X-rays, cuz my foot just kept getting thicker and thicker and he could see that it was bone…the bone was thickening.

[00:22:40] Well, when I came back to the podiatrist, he said, “We, we need to go in there and remove those screws that we put in your foot.”. So, I mean, the blessing of breaking the toe…at least I got back to the doctor. He says, “Let's go in and remove those screws. You don't need those screws any longer.”. He went in and removed those screws. At this point…a good 10 to 12 hours in a 24 hour day, I was paralyzed.

[00:23:00] So half the time that wasn't, maybe wasn't all daytime. I mean sometimes it was, uh, at night, but 10 to 12 hours a day I was a rigid quadriplegic. We went in, he did that surgery and the next day I was only paralyzed for 45 minutes, and subsequent to that it would be like 45 minutes to an hour and a half. And so I said, there's something up with this. I mean, I, I know enough about that.

[00:23:27] Dr. Scott Schroeder had had issues with, amalgam fillings. He and his wife…and he says, “We should send your blood off to do, analysis of it for, for metal allergies.

[00:23:39] And, and so I said ‘okay, we gotta do that’. We were gonna send my blood to the lab in Milwaukee. Unfortunately, that lab had issues—I don't know exactly what it was. Then Dr. Schroder reached out to Dr. Stejskal at the MELISA Foundation and, she said, “We'll do it gratis. You just send the blood. We'll do a workup on it.”.

[00:23:59] I filled out a form of all the various metals that I knew were in my body. And so I did that research. I had amalgam fillings, I had white gold crowns…a screw in my knee…put in all the things that I, that I knew were in my body. Sent it off to them. And, and lo and behold, of course I was allergic to nickel, but I was off the chart, allergic to palladium.

[00:24:21] Shari: Palladium? What was that in? What had palladium in it?

[00:24:24] Dana: Yeah. So being an anal retentive in engineer, I went back to my dentist and said, what's in this white gold crown? Well, of course 26% of that white gold crown is palladium, which is what makes white gold hard.

[00:24:38] Now, I didn't know that at the time, but when I went to send the MELISA Foundation, the information of what I had in my body, I went and found out what…you know…my amalgam fillings…or I'm sorry, a white gold crown and zirconium crowns…so I went and found out what chemically made up that. And so, uh, my white gold crowns had Palladium.

[00:25:00] Shari: Interesting.

[00:25:02] Dana: Yeah. 

[00:25:04] Shari: Okay, so you came back off the chart. So you get this test result back. Did the test result shock you? Did it shock Dr. Schroeder? What did, the MELISA Foundation have to say? I mean, is this pretty much status quo for them? Did anything surprise them or how did that come about? 

[00:25:20] Dana: Well, for me it was, it was a miracle. I mean, this was the answer. Everybody that I'd gone to—neurologists through psychiatrists…through the whole thing, it was as if this was not a mental disorder, but it was a…you know, a conversion disorder. It was some sort of psychosomatic….so here was actually something that it wasn't. Being an engineer, empirically I could tell that was the case. I had been paralyzed after I removed those screws. By the time they did this, it had been probably two weeks when we sent my blood in and at that point, you know, maybe the longest I'd been paralyzed since then was only three hours. And so it was no question to me that the removing those eight screws outta my foot made that much difference. 

[00:26:01] So then when we got the…the results there..it’s…so I got with…uh… Dr. Schroeder…my dentist…and said, okay, what are we gonna do to do this? And so that's where I was able to go through…set up a medical plan on how we were going to remove, remove this, these materials from my body. And so that wasn't, without necessarily a consequence. 

[00:26:25] In other words…went to great doctor who did my ACL surgery…said ‘I want to remove that, that screw’ and he, he's like, “Oh, I've heard about people saying they were allergic to it.”, I said, ‘Well, can I do it?’ And he says, “I'll remove it from your…your knee, just because you don't need it anymore. We did it to tie the tendon there. It's not needed anymore. So we'll go ahead and remove it. But it's not like I believing what you're telling me.”. I mean, which was, kind of sad.

[00:26:51] But so I went ahead and had that screw removed. After it was removed my paralysis episodes reduced, but unfortunately I ended up getting a deep vein thrombosis. I mean, so I had a…another blood clot issue at that point, so it wasn't as traumatic or dramatic as you would've anticipated.

[00:27:11] But then we came up with a plan to remove the six amalgam fillings and the white gold crowns. 

[00:27:19] Shari: they removed the tendon anchor from your knee… I have a tendon anchor in my shoulder that I need to get removed and, and you know, doctors aren't always friendly to that. 

[00:27:27] Dana: Right.

[00:27:28] Shari: Did you have repercussions from removing that anchor? Was it encased in scar tissue? What, what did they find when they got in there?

[00:27:34] Dana: No. So he was more not wanting to do the surgery because in his mind it was an unnecessary surgery. He said, “I will remove it. If you want it removed I will remove it, but I don't know that it'll do anything.”. And at that point he says, “It won't make any difference.

[00:27:50] The interesting part about that was when he removed the screw it was actually pitted, as, and this is a titanium screw, as if it was, going through some sort of corrosion. I mean, and so me being an engineer…I’m saying, so something's not right here.

[00:28:06] Shari: When he removed the screw from your knee did you notice any improvement? You said no…you said that that was when you got the deep vein thrombosis. Did that…was that relation, was that in relation to the surgery at all or…?

[00:28:17] Dana: No.

[00:28:18] Shari: …just a random thing?

[00:28:20] Dana: The deep brain thrombosis was due to the fact that they immobilized my leg for a week afterwards and so that's where I got a blood clot in there. I, again have told you, I have no feeling. If I was a normal person I would've had feeling…that when that first blood clot first started to form…I have no feeling, so therefore I did not know.

[00:28:42] And so then it wasn't until they went in and did a ultrasound of it and they saw that blood clot and they said, “That should be killing you!”, and I'd say, well…  It was a panic in the emergency room. It's kinda like, ‘You should move. I mean, we need to go!’.

[00:28:56] And of course, at that point, I was back home. I was in a Coeur d'Alene, uh, Idaho hospital and they said, “We don't want to touch you because someone has removed that screw. We want you to go back to Wenatchee to have the doctor who did that…we don't wanna do that.”.

[00:29:10] So, during that period of time…probably two months…where they were checking my blood because of the deep vein thrombosis, my paralysis was probably better, but It wasn't like remove the eight little screws from my foot and now it moved from 10-12 hours to three hours. It probably reduced to probably an hour to 45 minutes, to an hour and a half. So it reduced, but it wasn't that notable. 

[00:29:38] And then when I went and removed the amalgam fillings—they removed one white gold crown and three amalgam fillings—I saw it, but it, it was really hard. In other words, we're, we're now not reducing…my paralysis is coming down to where it's like an hour episode at a time, versus the longer episode. 

[00:29:56] The last time I was paralyzed, I woke up the morning that we were supposed to remove the last white gold crown. I was paralyzed. So, of course my wife had to get the gait belt…get me out of bed…get me to…to there and I had the last palladium white gold crown removed. And I have not been paralyzed since. 

[00:30:14] Shari: At all? Any? Zero?

[00:30:16] Dana: At all. Zero.

[00:30:18] Shari: No neurological issues whatsoever? 

[00:30:22] Dana: No. 

[00:31:11] Shari: Do you have feeling in your body now? 

[00:31:14] Dana: No. Well…so I went back to Mayo Clinic and they removed the sural nerve from my ankle. And so they look at the nerve endings and say this, this is here. And of the 56 sheaths, I mean…there were only like six viable nerves. And the axial nerve, the one in the middle, was hollow. So you know…basically Mayo says you're not going to get feeling back because there's nothing there. There’s nothing to regrow. There's it…it’s gone. And so I've kind of resigned myself that this lack of feeling is, is gone.

[00:31:51] I don't know if I mentioned it earlier or not, but I had the autoimmune disorder. They didn't know what it was. Likewise, my liver enzymes are kind of weird…sketchy. Again, you can go back prior to 2007 and I wasn't having that. So it's like my liver has been trying to filter out the metal that was in my body.

[00:32:15] And like…I wanted to say one more thing. The white gold crown,….again, being an engineer…I said, ‘I want that'. You can look at the backside of that tooth. It looks like a white tooth…white gold on the top. On the back is a rusted palladium, which isn't supposed… again, it's supposed to be…not be that way.

[00:32:31] It was pitted. So in other words, my body…my blood…is trying to get rid of that toxin, if you would, from my body. So that’s…I mean, that's Dana, the un…unsophisticated medical person. Again, mine's all empirical kind of stuff. I know that I'm no longer paralyzed. I know that the stuff they removed from my body is rusted and these are all things…stainless steel, titanium and palladium…which aren't supposed to rust, and they…they are decomposing somehow. So it was happening to my body. So the thought is that my liver has been trying to take care of that and in this process I have lost my nerve sensation, unfortunately. 

[00:33:12] Shari: I guess we have no proof of…of anything other than you're not paralyzed anymore, so there's definitely a relation to metal—and we'll come back to that cuz I definitely wanna focus on that—but, is it your thought or hunch that the destruction of the nerves was related in any way to the metal or do you think that that was just coincidence and a totally random process, not involved with the metal at all?

[00:33:34] Dana: That's where I probably disagree with doctors because they would say, you've got all these weird things that just happened to hit your body. I'm just saying to me, it’s…it’s cause and effect. I've had all these things. I mean, I didn't have these problems till my toes started curling under. Why did my toes curl under?

[00:33:51] We don't know. You know…we, we went through all this stuff once this has all happened. Now I don't have the…initially diagnosed as dystonia, you know, where I had the curling toes-that’s where it was. And neurologists were short to come back and say those were related.

[00:34:06] I'm just saying as we evolved in this…as we removed the metal…as we did the…all those other symptoms have gone. Unfortunately, it has still left me with…with no feeling in my body. 

[00:34:18] Shari: But you had full feeling and full faculty prior to any metal in your body, correct?

[00:34:24] Correct. Correct. 

[00:34:26] Shari: Cause and effect seems, seems, seems like, doesn't it?

[00:34:28] Dana: That's what I'm saying. And the ironic part on that is after I got done with all this, then went back to the neurologist and the neurologist says, “Well, we're gonna send you to a psychologist….psychologist for evaluation. because we think you had this convergence disorder…a psychosomatic situation.”. 

[00:34:46] You know, the whole time they were trying to get me…and he said it.. the…the neurologist said, “We're trying to get you to swallow this pill. You have to say that you have it…that you're not gonna get better till you admit that this is basically a psychosomatic disorder.”.

[00:34:49] So, went back to him…basically, here I am, just like now…it’s like, cause and effect. Tell me about that. I went to the psychiatrist they sent me to. He did a complete examination. Could not find anything…anything wrong with me. Psychology, you know…their…their statement was, ‘It must be in remission’. Which is…I mean…in other words, the medical world just wasn't gonna accept that it was potentially a metal problem. 

[00:35:27] Shari: So we're gonna go back and sum this up for the listeners who may be just joining us. You're paralyzed for 12…13 hours a day, however, however long that was, you have all the metal removed. You haven't been paralyzed one second of one minute in six years. 

[00:35:46] Dana: Correct. that's correct.

[00:35:47] Shari: Medical doctors are still saying ‘not a metal thing. It was in your head, it was some other process and it's now in remission’. Do I have that straight?  

[00:35:57] Dana: That's the direction they're going. So thankful for Dr. Scott Schroeder. I mean, who…who led me this way. Otherwise…I’m just telling you, when this all started, back in the beginning, the first neurologist…they said…he says…he says, I can do two things for you: One, I can give you a handi- disabled placard for your car so you can park closer to places and two, you need to go to assisted living place now. And that's when I was 49 years old. That's basically where the medical world was gonna leave me. 

[00:36:25] I kept pushing. Like I said, if it wasn't for Dr. Schroeder-finding the, you know, first removing the screws and then going through that process, it would be a different place to where I, I am now.

[00:36:36] Shari: The most improvement in one fell swoop was when you had the metals removed from your foot?

[00:36:42] Dana: That’s correct.

[00:36:44] Shari: What was the chemical makeup of the metals you had in your foot? Can you explain why you got the most out of that? Was there a…a majority of metal that you were allergic to within that hardware versus some of your other, or do you know? 

[00:36:57] Dana: No. Well, after doing, uh, the MELISA Foundation test that… that was…those were stainless steel screws. When I filled out the information to do those, at that point, I didn't have those screws in my body. So, I mean, I don't know how that test worked, if you would, but that wasn't one that was flagged.

[00:37:16] The things that were flagged were nickel and palladium and a little bit of zirconium. I don't know why those eight little screws made any difference, but, the doctor can tell you. I mean, my bone was just thickening around these screws. Like encapsulating those screws.

[00:37:32] Shari: A lot of the listeners who are just joining in the podcast who might not have heard a prior episode probably don't realize that many doctors and most patients don't realize that stainless steel contains nickel, and if nickel is your primary allergen and you're off the chart, and the screws were primarily stainless steel, that would stand to reason that that was a big, a big part of the, of the problem.

[00:37:53] Dana: Right, right. 

[00:37:55] Shari: Are you surprised that doctors don't know there's nickel in stainless steel? They don't know there's nickel in titanium, they think titanium's inert. Does that surprise you or nothing surprises you anymore after your journey? 

[00:38:04] Dana: Well, you know, main reason for doing this…and my..the scariest part for me is the general public. They put things in your body that you don’t know what they are. And…and that's exactly when I went back to do my dentistry. I said, ‘I wanna know what…what’s in these.’ And…and it's like…’Well, they're white gold’. It's like, ‘No, I want the chemical makeup’. And it was the dentist himself said, “Well, I have to send it to the lab of where I get those. I don't know.”.  And so my concern is not only they put it in my body without knowing, but that doctor doesn't know what is in that. That's concerning. That's, that's what I'm saying. 

[00:38:40] Shari: You know, for example with my spine surgeon…doctors believe what they're told by the company representatives and I think many doctors wouldn't necessarily intend to do harm, but they know what they're told by the reps. Doctors are busy practicing medicine. They don't have time to research every device and every leaflet for every prescription….every piece of hardware.

[00:39:00] They just don't have the time. I'm a real estate agent and I can't keep up with all the contract changes. I can't imagine being a doctor. Doctors only focus on what they know and what they do well over and over and over again. So you break the mold and they're flying blind.

[00:39:16] Dana: Yes. Yeah. And that's, that's where it was. And nothing against the dentist, but he was like, “I don't know what's in that. I send it to my lab and they came back with it and that's what I put in.”. I mean, that’s…that’s what it was. Then I went to a holistic dentist…when we are looking at removing these, and now he won't put anything in your body or in your teeth without testing to see whether you're allergic to it or not. I mean, so that's, that is going the right way is all I'm saying. 

[00:39:42] Shari: Well, and you're bringing up a…a valid point because, there have been many points made in the metal-allergic community about testing ahead of an implant surgery. But the problem therein lies—and many people don't know this—I don't know if you even knew this at the time, but your body can't mount a…an immune response unless there's been an exposure.

[00:40:01] So if somebody with no metal walks in and says, ‘Hey, test me before my dental implant’, they're likely to have a clean test because there's no exposure to what would be an offending substance. 

[00:40:13] Dana: Exactly. 

[00:40:14] Shari: Therefore, it gets difficult to say, test everybody prior to surgery, but …did you file an adverse event report against the…for the hardware that you had in your body? Have you done that yet?

[00:40:25] Dana: No. No. No.

[00:40:27] Shari: Is that in the plan? 

[00:40:29] Dana: I hadn't heard of that before. I mean…I mean…I’m just thankful that I am where I am and I'm up and going and that's where it's at. And like rhetorical a little bit, but Dr. Schroeder was the guy that put the screws in my feet that came out and figured out what the problem was. I understand that. I'm glad that I know that now. It's kind of that process. I'm just living life learning as I go. 

[00:40:50] Shari: Well, you'll get to learn. One of our podcast episodes is going to be on filing an adverse event report. I'm busy living too, and I haven't done my own. But that's a… the…the patient voices are important because there are so many cases. We need to get these cases diagnosed and we need to get them reported because if, people, doctors and patients alike are able to make the connection and file the reports and the FDA starts getting this monster list of reports for…for metal reactivity, I think it might give pause to a lot of people.

[00:41:21] Dana: Yeah. Yeah. And actually your podcast that I…I just watched… you had talked about clips for gallbladder and for biopsy on a colonoscopy. And my colon…I mean…I’ve had those and now…now I'm gonna go find out, is there clips in there? I don't know. I mean that just scared me when I saw that because I've lived through this. But I might have other pieces in there that I am unaware of. 

[00:41:44] Shari: Did you have your gallbladder out? 

[00:41:47] Dana: Yes, I did. I did have gallbladder removed. Also a couple polyps and my colon they sent off for biopsy. And then like I said, I saw your clip on that and then I thought, ‘Well, I wonder. I'm going to call them and find out…do I have clips in there?’ You know, I mean, that’s…

[00:42:03] Shari: And…and I will tell you, you most likely do because it's standard procedure and they don't tell anybody. They don't wanna be held accountable. They're scrambling. 

[00:42:10] Doctors are good people. I'm not trying to throw doctors under the bus. We have great doctors and I…I feel like the majority really try to help. They just know how they're trained and they're not trained for this and part of this podcast…part of the objective here is to change the medical narrative.

[00:42:25] But I understand, you know, how that feels. I will reassure you if, you know…if this isn't on your radar…you’re an engineer. You’re a smart guy. You probably know this…it’s histamine. The allergy is like a bucket. If the bucket's empty or the bucket's full… You know, you got enough out of you that having a little bit inside you is probably not the end of the world.

[00:42:43] You're not paralyzed at all anymore. But I would like you to follow up with the podcast. I'd like to know when you go back and find…find out that you have or have not…if you have them and have them removed, I’d like to follow up with that and see… Wouldn’t it be interesting if you got some feeling back?

[00:43:00] Dana: Yeah. I mean, yes, yes. 

[00:43:01] Shari: You just don't know what's possible with these metal allergies. You walk into surgery one way and walk out another way, and when you start reversing this stuff the symptoms just unpack themselves very quickly. 

[00:43:13] Dana:. Yeah. Yes. 

[00:43:15] Shari: I just had a…astory with somebody I knew that came across my desk. She had a thyroid removed. They left 19 clips in her neck and she was bedridden completely, with pain everywhere throughout her body. She couldn't find a doctor to take the case. She finally found a vascular surgeon. When she got to the hospital, she couldn't transfer from the car to the wheelchair. She had a $50,000…you know…fancy wheelchair. Couldn’t transfer from the car to the wheelchair…goes in and has the clips removed from her neck and walks out of surgery and never gets back in the wheelchair. It was immediate.

[00:43:45] Dana: Yeah, yeah.

[00:43:46] Shari:  And…and the vascular surgeon's kind of like the guy with your knee. The vascular surgeon said, “I'll take it out, but I don't think that's your problem.”. And the vascular surgeon, from what I understand at this point is just like…Jaw drop, you know?

[00:43:58] Dana: Yeah. I have my wheelchair in our…in our garage. I haven't got in it since I was paralyzed. Still have it in the garage just for a reminder and it definitely makes a difference for me when I see disabled people in town and stuff. Looking at people's bellies for five and a half years, gives you a different appreciation for the guy sitting in the wheelchair. That’s all I'm saying. That's a PSA on that side. But I mean we gotta be kind to everybody and…and after being in a wheelchair for that time, I mean, maybe that was the thing I was supposed to learn in all this. I don't know. I'm, I'm just happy I’m…I’m…I’m up and going. But that was a…that was an eye-opening experience about living from being in a wheelchair. 

[00:44:37] Shari: How does your metal allergy show itself today? Or what corrective or protective measures do you take on a daily basis? Or is it kind of off the radar just in the back of your head At this point?

[00:44:51] Dana: No. I’m no longer paralyzed. Thank God. I’m happy about that. But it has left me with no feeling—it’s kind of been a progression. But, I…I wear AFO braces on both legs. In other words, the brace is underneath my foot, clear up…clear up to my knee. And the reason for that is the muscle in the back of your leg is stronger than the front of your leg.

[00:45:12] And so theoretically have foot drop, because just the way the muscle structure in is the leg, I have no feeling. So if my toe drops down and I would trip and fall. So I wear braces that way. The other thing is I have no feeling in my feet. So if I get a rock in my shoe, I'm not gonna know it till I take my shoe off and I see the…the sore ulcer that's there.

[00:45:32] So I mean, daily I am examining my body for nick’s…cuts…scratches. I mean, there's many episodes where someone in the store will say, ‘Oh, I'm sorry.”, and then I get home and realize I got a great big bruise on my hip where someone hit me with a cart that I didn't know it was there. So, I mean, to me, that's still all part of the whole metal allergy.

[00:45:54] I don't know that there is an answer for it. Like I said, Mayo Clinic didn't give me much hope. It was kind of kind of ironic because when I was at Mayo Clinic at this point, I had no feeling in my body. They just did spinal stenosis surgery. They…after that surgery, I…I told the doctor, ‘I can feel my feet!’ I can feel… I mean… I haven’t…this is like a miracle! I can feel my feet at that point. And he says, “Well, this too will pass. Don't, don't worry.”. And later I found out that he had looked at the…the biopsy and saw that the…the…the neural sheaths were…were empty. All but like six of them.

[00:46:28] But apparently in the process of anesthesia, that really heightens your sensory feeling. But it was only for a limited time. Once anesthesia wore off then…then I was back to where I was before.

[00:46:41] It’s gonna happen. So that was, what I would say was a setback. But again, I'm just overly cautious of what I…what I do, just because I can’t….I don't feel things.

[00:46:50] Shari: Do you follow a nickel free diet or are you even aware of dietary nickel and, and the effect of diet?  

[00:46:56] Dana: I am. And I do, and…and that's been kind of funny, Chatting with Dr. Scott Schroeder as a friend. Since…since we've gone through this process it's like, I’ll…I’ll get this…and I…then I've got problems and he said, “Did you happen to have…you know…chocolate?” or, so…you know…I mean, he sent me all the various things that I…that I should avoid, but it hasn't made a notable difference to me…that it makes a lot. 

[00:47:22] In other words, if I over-indulge in something that, that maybe has a higher nickel content or something in that, uh…like whole grain bread. If I over… overdo it, then I can see it. I have been to the point where I went for awhile; probably two…three months of a nickel free diet, and it didn't seem to make a whole lot of difference. If I have issues, then I can go back and look, ‘Well, what did I have that might've caused that problem?’ So…

[00:47:48] Shari: What do you do now in your life and with your wife to make sure that this doesn't happen again as far as medical directives or medical identification? Because, You could be right back where you were if you have one auto accident and one plate in your wrist. I mean, what do you do? 

[00:48:03] Dana: So that's why I have a, Medical directive. When I would become paralyzed, she would have to say what was going on. And so we just continued that. If I was incapacitated—which, thank God I have not been since I have no longer been paralyzed, but basically just be vigilant in talking to the doctors.

[00:48:21] I'm doing everything I, that I'm thinking that I should be doing, but there are things there that are probably going past me as well. 

[00:48:28] Shari: Hey, we’re all learning. I have found it very interesting that about 50% of the people I run across with…with chronic pain, it's literally almost the first thing I ask them.

[00:48:39 My poor husband rolls his eyes every time we go out, but if I know somebody with fibromyalgia MS or an autoimmune disease, I'll say, ‘Hey, have you…this is gonna be a random question, but have you ever had a reaction to jewelry or, or snaps on your jeans or any…anything crazy like that?’ And, and most of 'em will say yes.

[00:48:56] And I said, ‘Have you had any surgery? Do you have any metal in your…’, “Yes, I've had surgery. No, I don't have any metal in my body.”. And I'll go run down the list: “You had your appendix out? Have you had your gallbladder out?” Oh yeah… One lady at church has had fibromyalgia for all this time, had a jewelry reaction. First told me she had no metal. She had a gallbladder clip, she had her appendix out and…and oh, she had a permanent retainer in her mouth that was steel. And I said, ‘Sweetheart, sweetheart, that’s your fibromyalgia right there’. I mean, I'm not a doctor and I don't give medical advice, but I mean, this one's a pretty easy diagnosis.

[00:48:27] If you've had a reaction to jewelry, if you have surgery and if you have metal that contains that substance inside your body, I mean, patients and doctors don't realize this type IV allergy. And for those just tuning in you…you can have clips in your gallbladder and you can get a rash on your foot or you can feel like your big toe’s broken.

[00:49:46] It doesn't show up always at the site of the surgery. So, I mean, wouldn't it be something, Dana, if…if we put that piece together and you go get those clips out and all of a sudden you got feeling back and that was the final straw? No. I mean, so much is possible in diagnosing and treating this allergy!

[00:50:00] Dana: Yes, yes. 

[00:50:02] Shari:. Unbeliveable. 

[00:50:04] Dana: Something that you said there. See, the other thing that has been difficult for me…In one way, it's a blessing. Another way, it's not. I have not had any pain through this whole process. I…I have no sensory for pain. Pain is a good thing. I mean, as I find out when I get an ulcer on my foot, because I didn't realize that that was it. So I haven't had any pain. And unfortunately the medical community, if you come in and you tell 'em your pain level's at zero, they're not gonna do anything. And that's, that's kind of been a little bit of my problem as well there. So that’s… uh…

[00:50:32] Shari: And the downside would be…I mean, can you feel your wife when she holds your hand? Do you feel pressure? You feel nothing? 

[00:54:38] Dana: No. No. That's why I gotta be very careful. Like if I'm holding hands or, you know, shaking someone's hand, yeah, I…I would… typically will use more force than I necessarily have to. That’s…that’s why I'm saying it’s…it’s just hard to believe the reason I can walk today is because my eyesight is making up for, feeling where… cuz I don't have any spatial position where my foot is on the floor. The worst thing for me is like walking through a mall and all of a sudden they have a carpet there that I didn't see because now I'm gonna fall because… because I didn't see it. I’m…I’m a big boy. I don't have enough time to react and…and I'm on the floor. again. The braces have helped with that because it gives me more time to react. But that's a tough one.

[00:51:20] Shari: Do you have any medical PTSD from your experience? 

[00:51:26] Dana: No. No, 

[00:51:28] What a miracle! What a what a blessing actually. 

[00:51:32] Dana: Yeah. Yeah. Yeah. 

[00:51:33] Shari: What would you have done differently? If you could go back to the beginning and…and do it all again? Would you have done anything differently? Are you glad you had this experience? Would you rather have not had this experience? 

[00:51:44] Dana: I’m a Christian, and so the whole thing I was trying to figure out from age 49 until we had it removed…and even today with no feeling, it's like, what are you trying to tell me God? What am I….what am I learning from this? I learned about wheelchairs. I've done that. And so, I mean, yes, I wouldn't have wanted that. I guess then my biggest thing on that is the fact that people were…were ready to call it a psychosomatic….I mean, it was in your head. I mean…and that's where it was. And so now it is like, ‘No, it wasn’t’. I'm up. I'm walking. I'm doing those things.

[00:52:15] Yeah. I would would've liked to have not gone down this path, but my point would be…and talking with Dr. Scott Schroeder, that’s where we need to get it out there…that this is out there for other people's that aren't put with the stigma that, hey, that's just in your head.

[00:52:30] I'm an example. This is what happened to me. I mean, I hate for someone else to go through that because I was with…with my faith, I was strong enough to go through it. I’m thinking when everybody's telling you you've got a mental condition, I don't know if I would've done what the neurologist and psychologist said; This is a pill.You gotta, you gotta take it. This is what it is. That's your life. You just have to accept it. And, and here you go to this assisted living facility. That's what you’re…the rest of your life is about. And that's, that's what I'm trying to say. If someone else is going through that same thing, don't, don't believe it. I mean it's not in your head. 

[00:53:05] Shari: Is Dr. Schroeder documenting this case of yours for the medical journals? I mean, it's pretty remarkable. I could almost probably bet that there are few, if any cases, people that have been through what you've been through.

[00:53:16] Dana: He is. I got the impression…that the medical community wasn't necessarily keen on the idea. For example, the wonderful, wonderful surgeon who, who did my a ACL surgery—He and Dr. Schroeder, I'm sure see each other in the hospital all the time because they're both surgeons there. And when I come into his office it's like, “Oh yeah, you're one of Scott's guy’s thinking this is a metal thing.”. And it's kinda like, you know, can we remove it? We removed it, and still I don't know whether he has, you know, accepted the fact that that could have been part of my problem. I mean, again, it's not his concern now to worry about. I don't know what he wrote it off as, but I know that Scott has really been documenting it, but I think kind of waiting for the right time and like, I think your podcast is the best, quickest way right now to get it out to people. I know he spoke, I mean, it's been probably 3-4 years now. He spoke at the FDA conference, uh, talking about this, but I just don't know how well the medical community has accepted this, or is, is tackling it. 

[00:54:19] Shari: We'll be having Dr. Schroder on the podcast, so I’m sure it will definitely come up. And I hope this is one that's going into the medical journals because it's certainly been remarkable.

[00:54:28] I had a few brief conversations with Dr. Schroder and he, you know, the recent attention to Celine Dion in…in the media with her Stiff Man Syndrome….and Dr. Schroeder is, you know, scratching his head. I wonder…wonder if she has any metal or exposure to metal that she doesn't know about and could this be related? I mean I think your story, Dana's gonna open up a whole…a whole can of worms in a good way, so to speak.

[00:54:52] Dana: Yeah. So, that's where I'm thankful for your podcast to get that out there for…for people in the social media at least to see this and know that it's there. Especially someone that might be going through it, that has, like you say, fibromyalgia…whatever it might be…that there might be another reason besides just, taking the diagnosis and taking your lumps and, and living with it. So….

[00:55:14] Shari: Well, Dana, thank you again for all you're doing to spread awareness about this issue and for coming on and, and being part of our…what I affectionately term my, “metalheads”. We'll look forward to following up with your case and, and I just, I thank all my community. Please remember to like, share and subscribe to the podcast and help us to be part of this movement, that tells the community “We're not gonna take it anymore”.