11. Jeroen – Patient

Roel Wilbers

0:04 Welcome to The Tailbone Podcast.

0:06 My name is Roel, and as your host, I bring you only experts on this for most doctors and therapists on known problems.

0:12 Let's dive in with today's episode.

0:17 Welcome to this new episode of The Tailbone Podcast Expert Talks.

0:22 With the first doctor from the last episode, we came to the medical part of these podcast episodes.

0:29 The medical interventions normally are injections and surgical removal of the tailbone.

0:35 About injections, we already talked with Elif in the last episode.

0:39 More about injections, but especially also the tailbone removal will be addressed in at least two more episodes with very specialized doctors.

0:47 But first, in between, I like to present you an episode that I already recorded several months ago.

0:53 It was actually one of the first episodes I recorded, but I waited until the right moment to put it out here.

0:58 The story of Jeroen perfectly fits right here because it is about a treatment that can be done before surgical removal and is not talked about a lot.

1:06 Jeroen was a patient of mine that actually went for this option, and we'll talk about that today with us.

1:11 I also waited a little bit because the first talk we had was just after the procedure was done.

1:16 And now, half a year in, we also have the chance to hear from Jeroen how it went in the period afterwards.

1:22 So with this update, you get a wider view about this treatment, at least how it went for Jeroen.

1:27 That update you will find, of course, at the end of this episode.

1:30 And let's start with Jeroen's story that we recorded half a year ago.

1:35 Today's guest is not only an expert in experience, but has for a patient done a lot of research, and has probably more knowledge about the subject than most doctors.

1:45 He can give us the perspective from the side that we therapists often cannot see and experience, but also an insight to what he learned from studying the subject of tailbone pain.

1:55 Where I see many tailbone patients as a physiotherapist, and the therapy mostly is very effective, it would have been very easy to pick a success story where the problems disappeared in one or two sessions.

2:04 I'd rather interview someone who has a broader perspective on the matter, and a longer and more elaborate story, where multiple different therapists and doctors were involved.

2:12 Our guest today is one of the most severe cases I've seen so far, even where I often see a lot of the worst case scenarios in our country.

2:20 Jeroen unfortunately has this background of long and severe problems.

2:24 We will dive into his story today, and where also his individual story and trajectory is unique, there are overlaps with the stories of most patients I see,

2:33 and there will be for sure recognizable factors for most patients in his story.

2:37 I know Jeroen for around a year now, and I'm very happy he's here today, and is enthusiastic to help me and you listeners with sharing his story.

2:44 We live in the same country, but he is currently in another country, and this is for tailbone-related reasons.

2:49 Why that is, we will go into later in this episode.

2:53 Welcome Jeroen, nice that you're here.

Jeroen

2:55 Thank you Roel.

Roel Wilbers

2:56 I would like to start with you, and maybe you can give the listeners a little bit of an idea who they're listening to today, and can you shortly introduce yourself?

Jeroen

3:05 Yeah, I'm Jeroen, 56 years old.

3:08 To dive into the injury, I've been suffering from tailbone pain for over four years.

3:14 I've always had an office life, so a lot of sitting down, a lot of traveling, a lot of car miles, a lot of planes, trains and automobiles,

3:23 so to speak.

3:25 Last year, I changed jobs.

3:26 I took a sabbatical and quit the corporate life, and now going back to school, doing studies to become a health care professional, especially for people with Alzheimer's,

3:37 Parkinson's, and I also work with young adults with autism and other issues.

3:44 Changing my life quite drastically, not directly related to tailbone pain, but maybe it added a little bit to the cocktail of changing the dynamics in my life.

3:53 I'm married, happily married, two beautiful children, so a busy family and a busy life.

Roel Wilbers

4:01 Nice that you added the happy married.

Jeroen

4:03 Yeah.

4:04 My wife told me to add the word happy.

Roel Wilbers

4:08 I saw your phone buzzing there.

4:10 Yeah.

Jeroen

4:11 I think she's tuning in.

4:12 Yeah.

4:12 Make sure you say happy.

4:15 Very good.

Roel Wilbers

4:16 Well, it's recorded.

Jeroen

4:17 I'm a witness here.

4:18 All right.

Roel Wilbers

4:19 Let's dive into your story if that's okay with you.

4:22 Can you share with us how your tailbone problem started?

4:24 Because it's four years ago now already.

Jeroen

4:26 Yeah.

4:27 Basically, it started while driving a car.

4:30 I changed car seats and at one moment, I started with an itch and then a glowing pain.

4:38 Started within an hour and became worse and worse the more I sat down.

4:42 So I tried avoiding sitting down and been exercising a little bit with going from one cheek to the other.

4:49 I was traveling a lot from my job, so it was a bit hard to find the right adjustments.

4:55 And after one week, the pain was so severe that I had to see my GP to find out what it was and to see what he could do.

5:04 It was not an accident, no trauma.

5:06 I didn't fall down.

5:08 Obviously, I didn't give birth.

5:13 It happened not overnight, but all of a sudden it was there and unfortunately never left.

Roel Wilbers

5:20 And it was not like a new car or a different car or whatever.

5:24 This was the same car seat was different.

Jeroen

5:26 So I have an adjusted car seat because I'm two meters tall.

5:29 So every five, six years, you need to change that seat because I drove 70,000 kilometers a year.

5:36 So we changed the seat and I doubt whether that's the actual reason.

5:40 I think it was the English saying is it's the straw that killed the camel's back.

5:45 So probably a lot of other elements added to this problem.

5:48 And this was the final phase.

5:50 But maybe later on, I can explain a little bit what the assumptions are that caused my case of coccyx pain.

Roel Wilbers

5:58 Yeah.

5:59 Could you tell me something more about what the doctors or the therapists or yourself thought was the underlying reasons or factors?

Jeroen

6:06 So first treatment was traditional pain medication and tried to avoid tension in that area, which gave no result.

6:14 Second phase was basically injections with a corticosteroid, with a general pain doctor who just inserted the steroid in the whole area.

6:25 That also didn't work.

6:27 And after some deliberation and waiting time, because it takes three months before you can actually tell whether that steroid injection will do anything, I ended up in a clinic where they tried to solve the puzzle on what caused the pain.

6:42 And we ended up with, let's say, the theoretical conclusion that I had surgery on my colon.

6:47 I had colon cancer about 10 years ago.

6:49 So I'm missing one third of the colon, which of course affects the way your organs work and the way you go to the toilet and your digestive system and etc.

6:59 I had a second surgery in the same area because of a hernia.

7:03 So not a hernia to the back, but a hernia in the groin.

7:07 And both surgeries were done with small tubes that they insert into your stomach.

7:13 But to create space, they need to blow up your stomach with, I don't know, some kind of oxygen or whatever.

7:19 I don't know what they use, but at least they need to create space so they can see what they do.

7:23 The theory is that that led to instability in the pelvic area.

7:28 And the second element was that because I'm missing a part of my colon and I had to go to the bathroom quite regularly and unexpectedly.

7:36 So I built up a lot of tension in the pelvic area.

7:39 And of course, the pelvic floor is attached to the tailbone.

7:43 So that is the best explanation that we have so far, that it has actually led to over tension or irritated ligaments or whatever in that area.

7:54 And of course, it took some time to build up because I had my surgery 10 years ago and the pain started four years ago, but there seems to be a direct link to those factors.

Roel Wilbers

8:06 Yeah, it's sometimes hard to, I mean, if you like have a fall down or something else, there's a clear one accident trauma moment, but it often can be a build up.

8:16 And like you mentioned, the English saying is perfect.

8:18 Like in Dutch, we say that there's the drop that did overspill the bucket, right?

8:22 Yeah, you're right.

8:23 You say that the straw that broke the camel's back.

Jeroen

8:26 Yeah.

Roel Wilbers

8:27 In the end, some somewhere, it's just you're like pushed over the edge and then the problems, because there was quite some history there.

8:34 You went to the regular pain department, the pain poly, we call it in Dutch, where they gave you the first injection.

8:42 That didn't really do anything, right?

8:45 And then you went to a more specialized clinic, and you had twice an injection again, right?

8:53 Correct.

Jeroen

8:53 So the regular pain doctor just injects the whole area.

8:57 The specialized clinic tries to locate the source of the pain, and then inject just the area where you feel the pain.

9:04 And I must say, there was a physiotherapist attached to the clinic, specialized in the pelvic floor, and she recommended that I take medication to give my colon,

9:15 at least, yeah, my colon was very disturbed.

9:18 And she noticed that because I was constantly cramping on my pelvic floor, and she had worked with a doctor before who prescribed a certain medication to patients that have had colon surgery.

9:30 And funny enough, my own doctor described that powder, and with every meal, I take a powder, and the problems from her colon were disappeared within one week.

9:39 And of course, it took longer for the tension to be released on the pelvic floor, but at least I got a lot of help in that area.

9:46 I just have a normal situation now, and I don't have to go to the toilet six times a day like before.

9:51 So that actually helps, but it didn't solve the issue with the coccyx pain.

9:56 But yeah, it's a combination of different factors that have led to overstimulation, or maybe it's repetitive strain injury, whatever, but it's a very difficult area, because there's a lot going on in that area.

10:09 You are specialized, but there are very few specialists around.

10:13 It really doesn't belong to any field of expertise.

10:17 And of course, it's a rare condition, so there's also not a lot of research and et cetera.

10:22 So some of the issues were solved, but the result was not positive in terms of fixing the coccyx pain.

Roel Wilbers

10:30 So the injections you had there, did they eventually lead to a decrease of the problems?

Jeroen

10:37 No.

Roel Wilbers

10:37 Well, the injections didn't do that.

Jeroen

10:39 Nothing.

Roel Wilbers

10:39 And the pelvic physiotherapist, she worked with the pelvic floor as well, right?

10:43 She didn't just advise the medication?

Jeroen

10:45 No, no, no.

10:46 No, she actually worked on the pelvic floor, but she saw that it was cramping, and then as I told her, I need to go to the bathroom six times a day.

10:53 And then she said, I know, what is it called?

10:56 Stomach, Liver, Column Specialist, who she worked with before, who was attached to the clinic, but no longer worked there.

11:03 And he prescribed his powder, which actually eliminates an excess of acid in my column because I'm missing one third.

11:11 So basically, my system doesn't have enough space to digest all the acid in your digestive system, meaning that the final part of your colon will throw it out because it's too acid.

11:23 It's a bit of a technical story, but that's what she found out.

11:26 And so actually she had the best result.

11:30 And of course, you can also debate that 10 years ago, when they took out the colon, they should have prescribed that medication, but that's a bit after the fact.

11:38 There's no way of going back to that moment in time.

Roel Wilbers

11:41 But then you say she had the best result.

11:43 After that, your problems got better in the tailbone.

Jeroen

11:47 At least it was more stable.

11:49 I had less pain and of course, less irritation in that area.

11:53 Okay.

Roel Wilbers

11:54 And that was around how much was solved by that or like diminished?

Jeroen

11:58 Yeah.

12:00 I know you love to work with percentages.

12:02 I'm a little bit hesitant to put a number there, but at least let's say one third reduction of my problems.

Roel Wilbers

12:09 So there was still two-thirds left.

Jeroen

12:11 Yeah.

12:12 Well, the big advantage was that I didn't have to go to the toilet so many times because it's really awkward if you are like me.

12:18 I was traveling a lot if you're at the airport, and all of a sudden you have to go to the bathroom.

12:22 That is really quite difficult.

12:24 So I'm glad that that is solved.

12:27 And of course, I would have hoped that the pain would also go away.

12:29 That didn't happen, but at least one of the issues was solved.

Roel Wilbers

12:33 But that was not connected to the tailbone pain itself.

Jeroen

12:37 Yeah, I think it contributed, but the root cause, nobody knows.

Roel Wilbers

12:41 Okay.

12:41 Yeah.

12:43 So did the pelvic therapist treat you manually as well?

12:47 Well, did they work on your pelvic floor tension, or was the therapy for the pelvic floor tension more in the medication?

Jeroen

12:54 No, it was actually both, but she's not allowed to prescribe anything.

12:58 So she just handed me the suggestion and that I took that to the GP, and he agreed and prescribed it.

13:05 And I have to take that for the rest of my life.

13:08 She actually worked giving exercises, especially relaxation exercises, and she measured the tension in the pelvic floor with a special device.

13:19 I will not share all the details in this call, but you know the drill.

Roel Wilbers

13:24 Yes.

Jeroen

13:25 And I visited her three to four times, and at the end, the pelvic floor was back to, between brackets, normal.

Roel Wilbers

13:33 Okay.

13:34 Okay.

13:34 Perfect.

13:35 Maybe just for the listeners, I mean, it's more of an internal device, what they often use to train or measure the pelvic floor tension.

13:42 So let's just clarify the joke in between we had there.

13:47 So you also in your career of tailbone problems before you saw me, you also visited a physiotherapist and an osteopath.

Jeroen

13:55 Yeah.

Roel Wilbers

13:56 And they, what I understood of you with the intake, they didn't really work with the tailbone itself, did they?

Jeroen

14:01 No, no, no.

14:02 They worked with the surrounding tissue and tried to find tension in my stomach, which was there, of course, because I had some surgeries.

14:10 And they looked at position of my pelvis and my back, and they did some adjustments, but basically that gave no relief at all.

14:20 So I stopped seeing them because it was going nowhere.

Roel Wilbers

14:24 And this is what you hear a lot or also what I hear a lot.

14:27 And what I also would have done the first 15 years of my career, then you hear a problem and you see, okay, like tailbone, we are not trained in that as a physiotherapist,

14:37 but also most other therapies not, and most doctors either.

14:40 And then you want to help the patient and you try to find some entrance.

14:44 So you look at the regions which might have a relation there and start there with all the good intentions, but for tailbone problems, unfortunately, that is hardly ever effective.

14:54 A lot of people when they come to me say, I already had physiotherapists and osteopaths and asked, what did they do?

15:00 And a lot of them, they actually didn't even touch or palpated the tailbone.

15:04 So then the therapy was again, very well intended, very well meant, but not like aim to the problem itself.

Jeroen

15:11 No.

Roel Wilbers

15:12 Did you see any other health care professionals outside of the one we mentioned?

Jeroen

15:16 No.

15:16 So I saw the GP, the Specialized Pain Department in the hospital, the clinic and the clinic was combined with the physical therapy.

15:25 So I went on for a few more times at the clinic, but I stopped the physical therapy.

15:31 Okay.

Roel Wilbers

15:31 That's quite a story.

15:32 And again, you had quite some career on your tailbone problem already.

15:36 As I mentioned, you are probably the worst case in severity that I've seen, unfortunately, for you.

15:41 And could you maybe share how the problems manifested themselves?

15:46 How strong was the pain and how did it impact your life?

Jeroen

15:50 Yeah.

15:50 So it started as a sort of a nasty feeling, but yeah, it ended up with not being able to sleep.

15:58 So I took pain medication, but you're only allowed to do that for one, maybe two weeks in a row.

16:04 And they didn't do much.

16:06 I even went to oxycodone, which would kill an elephant, but it didn't do anything.

16:11 So, and the fact that you can only take that for two weeks and it didn't do anything.

16:16 I stopped taking pain medication because it makes you very blurry and it has a lot of side effects and the result was minimal.

16:24 So yeah, the pain was so severe that yeah, basically I couldn't sleep.

16:29 So that's why I started looking to eliminate factors that would increase the pain, like sitting down.

16:36 So of course I bought special cushions and I bought clothes that are a bit wider in terms of fit.

16:44 So that didn't touch the area, et cetera.

16:47 Started sleeping on my left or my right shoulder instead of on my back.

16:51 So yeah, I made some adjustments.

16:54 I changed the car seat at home.

16:57 I had some cushions especially made by somebody because I'm a big guy.

17:02 So the normal cushions are not big enough and they're not flexible enough, or at least they're too flexible.

17:09 So I ended up making adjustments in the way I sit, drive, sleep and etc.

17:15 And that actually brought a lot of relief because in the end I could sleep again.

17:20 I was not in much pain unless it was triggered by something.

17:24 But of course, if you avoid 75% of the triggers, then your life is becoming more reasonable.

17:30 But of course, it was a lot of adjusting.

17:34 And also mentally, it was difficult that, yeah, all of a sudden everywhere you go, you take your cushion with you.

17:41 If you're in a crowded area, you look behind you, if nobody bumps into you.

17:44 So yeah, it's both physical, but also mentally.

17:50 Yeah, I had a lot of trouble with the fact that I was injured.

17:54 I felt, it's a big word, but at some moments I felt somewhat handicapped because yeah, everywhere I went, I had to think beforehand, where do I go?

18:04 Can I sit in a normal chair?

18:06 Do I take my cushion?

18:07 If I have to step on a flight, is the cushion big enough for hand luggage?

18:11 No, stuff like that.

18:13 And of course I'm not in the wheelchair, that's why I'm saying it feels like you're handicapped, but the handicap was more that you constantly have to think about the fact that you have pain and you have to adjust the way you live,

18:25 the way you mobilize yourself, the way you, if I'm going to the movies, I cannot sit in a normal chair, so I have to take a cushion.

18:34 And I'm the only one in the theater that has that cushion.

18:37 So you feel a bit awkward and you feel looked at, and that cost me also some issues.

18:43 And now I'm adjusted to it.

18:45 I don't care anymore, but I'm four years down the line.

18:48 But in the first year and a half, two years, that was difficult.

18:54 But now I seem to have balanced it all.

18:56 Those adjustments have actually led to a lot less pain.

19:00 It's not gone away because the moment I sit without a cushion, it all starts from the beginning.

19:06 So, but yeah, in the end, I made it work and I still do, let's say, 95% of the things I did before.

19:13 Even go skiing, as you know.

19:16 Yes.

Roel Wilbers

19:17 Well, you mentioned a few very interesting things.

19:20 Like first of all, the medication.

19:22 We are not trained in medication as physiotherapists.

19:24 And I worked in a hospice for four years as a volunteer.

19:27 And the medication I saw there with people that are in the last phase of their lives terminally ill, that's the strongest medication there is.

19:36 And oxycodone was one that I saw on a regular basis.

19:39 I think this says something.

19:40 And also, I mean, the way you presented your pain, I hear it more often that people cannot wear tight clothes.

19:46 But I always saw you in the jogging trousers because you couldn't wear normal jeans anymore.

Jeroen

19:52 Yeah.

Roel Wilbers

19:52 And even you told me also that you sometimes wore normal clothing because you wanted to go to a restaurant for dinner or whatever.

19:58 And you had to pay for that, not just the dinner, but also afterwards in pain for days, sometimes for just wearing a few hours normal jeans.

20:07 Right.

20:07 So it's like, or not even jeans, like a little bit normal trousers.

Jeroen

20:11 Yeah.

Roel Wilbers

20:13 And you also said that you felt handicapped.

20:16 And the problem with tailbone problems often is that you don't see it.

20:19 Right.

20:19 Like you said, you're not in a wheelchair.

20:21 You have no crutches that you walk on.

20:23 You have no cast around you or like something's broken.

20:27 They don't see it.

20:29 But it's in the handicapped zone if you cannot sit.

20:32 If you're not experiencing tailbone problems and you're listening to it, and I hope you're one of those, but try to imagine that if you cannot sit, how handicapped do you feel?

20:42 Or if you just can sit with a lot of pain.

20:44 You have to plan everything.

20:46 Like you're socially fans.

20:47 Do I go to a birthday party?

20:48 Do we go to a restaurant?

20:49 Do we go to the cinema?

20:53 It has a huge impact on your life.

20:56 That's really something to consider and often forgotten with people with tailbone problems.

21:00 You mentioned the pillow, the cushion, but that's one especially for tailbone problems.

21:05 That has a hole in the back, and that's where there's no pressure on tailbone.

21:11 You mentioned with the skiing.

21:12 I tell this story often to patients with a tailbone pillow that you actually took it onto the skiing slopes, right?

21:18 Which on your back, you were skied around with it because you couldn't go into the elevator thing without and sit there.

21:26 This is how you're attached to that.

21:28 You even developed, and for people that are interested, you can see it on my Instagram, an own version that you're tall, so things are often quickly too weak because of body weight and you're not obese or anything,

21:41 but you're tall, that also carries, of course, weight.

21:44 And Jeroen even was so brilliant to invent one that is foldable with a firm.

21:49 I was pretty impressed by it.

Jeroen

21:52 Yeah, actually, so now I can carry it around in a normal backpack, so people don't look at me like, what is this guy bringing into the restaurant or into the airplane?

22:02 And if I neatly fold it before I sit down, nobody sees it, but I'm comfortable with it, so I travel with it wherever I go.

22:09 It's my companion and I had it specially made.

22:12 The guy who made it actually retired, and before he retired, I begged him to make two more and he did.

22:19 So they're now in storage.

22:20 Yeah, hopefully, I hope I won't be needing them, but for now it works and I'm fine with it.

22:26 I've adjusted and there are bigger problems that people face.

22:30 But yeah, it took some time to go through the process of adjustment and also mentally.

22:36 Yeah, let's say it doesn't feel like giving up because I've done everything possible apart from removing the tailbone entirely, but that's a difficult step.

22:46 I'm not there yet, but everything else I've done.

22:49 But yeah, I can do almost everything that I want.

22:54 And the things I cannot do, okay, never mind.

22:56 There's lots of other stuff that I can do.

22:58 So yeah, I'm past that point now.

Roel Wilbers

23:01 Yeah, that I can imagine that it took some time and also creativity to get there, to work around things and to figure out how to do certain things,

23:10 work around the pain, right?

23:11 So that's quite a journey, which I also think often is underestimated.

23:16 Thank you for sharing that.

23:17 It is a journey.

23:18 And also listeners that have tailbone pain, that they know it's a common thing, like among patients that they really have to figure out how and what to do.

23:26 And it's not an easy thing, or you just sit differently and it's done.

23:29 I think it's very good that you explained that and that people actually also recognize that probably from their own journey.

Jeroen

23:35 Yeah, and it's also I've experienced pain before.

23:39 But this type of pain so deep in your body is so difficult and so present that I had never experienced anything like that before.

23:49 And that is hard to explain to somebody who's never had that feeling that this is serious pain.

23:56 And that's the reason I sit on a cushion, because I say, why is this necessary?

23:59 Or, oh, do you carry it around all the time?

24:01 Yes, I do.

24:02 Okay.

24:02 Oh, you can't wear jeans?

24:04 No, I can't.

24:05 Okay.

24:05 Yeah, I also have some pain in my knee.

24:07 Okay.

Roel Wilbers

24:08 Okay.

Jeroen

24:08 Thank you.

24:09 But in the end, you know, just let them talk.

24:11 And my pain is not my neighbor's pain.

24:13 So it's not it's not a competition.

24:16 But I was in pain.

24:17 And now with all these adjustments, I'm okay.

24:20 I feel it constantly.

24:22 But that is more being present and annoying and not painful.

24:26 But at the moment, something happens.

24:28 Or I told you the story that some person bumped into me at the supermarket, really from behind.

24:34 Yeah, then I'm stuck for another five to seven days with pain.

24:38 But I also know it will go away eventually if I just take time and etc.

24:43 But so it's it's not gone, but it's let's say, manageable, it's hidden.

24:48 Yeah.

24:48 Yeah.

Roel Wilbers

24:50 But still you have to pay attention and it's very triggerable.

Jeroen

24:53 Yeah.

24:53 Yeah.

24:53 Yeah.

24:54 Absolutely.

24:54 Yeah.

24:54 Below the surface, it's a snap of a finger.

24:58 It can be back and that of course does something also in your head that you're scared or you're trying to avoid stuff.

25:05 And I tried to fight it.

25:07 So last summer, I went into a skiing cabin with, I think, 125 people that were squeezed into the gondola to go to the summit of the mountain.

25:17 That took some time, but I ended up doing it.

25:21 And I had a great time when I was up there.

25:23 But of course, the moment I step in, I'm not super comfortable.

25:29 Let's summarize it like that.

Roel Wilbers

25:33 All right, you already said I tried almost everything.

25:37 They also, of course, just to complete the story, they did scans and stuff and they didn't see any dislocations, tumors, fractures, those kind of things were ruled out.

25:46 You had quite a journey also finding therapists and doctors who were specialized.

25:50 In the end, you found me and we're going to dive into that part of your journey after this.

25:56 But was it easy for you to find specialists because you already mentioned, and this is very true, that it doesn't really belong to a certain profession.

26:04 I think in almost all professions, even in pelvic floor therapist, there's only a small percentage of people that know actually something about tailbone pain, physiotherapists, osteopaths, chiropractors,

26:15 but also you name it, every kind of doctor you have in the hospital.

26:18 So it's quite a journey often for people to find someone who is actually knowledge and experience of this.

26:24 How did you experience that?

Jeroen

26:26 Yeah, it's the same.

26:27 You go on Google and the things you find are usually from UK, US or at least not in the Netherlands apart from the clinic that I went to.

26:36 And there are some people that say that they are, let's say specialized, but if you really dive into what their approach is, then I have my doubts whether they are specialized,

26:45 yes or no.

26:46 At least in my case, I was very sceptic.

26:49 The reason I also didn't visit a number of therapists is because I didn't want anyone to touch that area.

26:56 It was too sensitive and too painful.

26:58 I was getting a back treatment and then the guy who was doing that said, oh, you also have tailbone pain.

27:03 And then all of a sudden he reached out and he just reached out to the, to the tailbone unexpectedly and pushed.

27:10 So that was really a horrible experience because, yeah, it really gave me two or three weeks of intense pain.

27:17 So I was not too enthusiastic about getting that kind of treatment.

27:21 But in the end, I, you know, I kept looking for information and then I stumbled upon your website and your story.

27:28 And I, and I was one of the moments where I was in more pain than usual.

27:33 So I decided to send you an email and you responded quite swiftly with, I think I can do something for you.

27:40 Come and visit me.

27:41 And that's how I ended up with you.

27:44 And so far, you're the only person that can actually touch that area without ending up in pain, by the way.

Roel Wilbers

27:50 So that's kind of the plan.

27:54 This is also a story, of course, which I hear more often that people are searching and looking.

27:58 And also the experts also online.

28:00 I saw a video this week of a chiropractor that has a long list of videos and also one about tailbone pain and I kind of like looked at it.

28:08 And his advice is to take a hard ball, like a squash ball, and to sit on it and to make rounds on the tailbone.

28:15 I think, well, sorry, but the last thing a tailbone patient wants is to sit on it and then also on a hard ball and move around.

28:23 So I understood the thought behind it, but then this is practically terrible, right?

Jeroen

28:28 Yeah, there are some videos on TikTok of Indian doctors that do adjustments.

28:33 So they lift up the legs and they just take two fingers and they literally, with force, they work on the tailbone.

28:42 I'm like, you know, just looking at it, my stomach goes wild because I hope it helps for the patients who are in that video, but I don't want to do that.

Roel Wilbers

28:52 It depends a little bit on the severity as well, right?

28:54 You already mentioned when someone bumps into your back or buttocks or tailbone, it already gives you like a weak, but dense pain and unfortunately, most people don't have that.

29:03 And when I saw you for the first time, I have this test which I do.

29:07 It's in sitting and I ask people to sit on my hands where the tailbone is in between my fingers to test it.

29:13 And I think I saw now easily over 300 to 350 people.

29:18 And there were like five where I couldn't do that the first time.

29:21 You are one of them.

29:22 And I also didn't do it because I mean, I saw how much pain you had.

29:26 And then if you're not like this massage therapist, not experienced the tailbone problem, so you think, oh, I'll just have a look and I'll just touch it with a painful knee,

29:33 that's possible.

29:34 And with a painful elbow, that's possible.

29:36 With a tailbone, that's no go.

Jeroen

29:38 Correct.

Roel Wilbers

29:38 Again, also this therapist, well-intended, but you really have to know what to do there.

Jeroen

29:43 I think one of the issues also was, Roel, it started as traditional or regular tailbone pain.

29:48 But one of the theories also is, is that the nerves are so sensitive that they overreact.

29:55 So it actually expanded to a bit wider area than just the tailbone, because also my sacrum sometimes was in pain, where there was nothing wrong with my sacrum.

30:06 So I don't know what the English term is, but in Dutch it's sensitisatie.

30:10 So it's an overreaction of your nervous system.

30:18 And that also doesn't help.

30:20 But it's there.

30:21 You can say, yeah, but it's the nervous system that takes over.

30:24 Yeah, okay.

30:24 But it's still there, right?

30:26 I don't make this up in my mind.

30:28 It still happens in my body.

30:29 But that made things worse.

30:31 So that's why, you know, you couldn't touch me in the beginning, but in the end, you could.

30:36 And I think the sensitization was solved because now it's back to just the tailbone pain and the rest of the area is quiet again.

30:45 So.

Roel Wilbers

30:46 So let's dive into the story.

30:48 Like we saw each other a year ago.

Jeroen

30:50 Yeah.

Roel Wilbers

30:50 And in the end, we saw each other 26 times, which is a lot for what I normally see.

Jeroen

30:56 Yeah.

Roel Wilbers

30:56 And for me, it was definitely not a punishment.

30:58 It was very pleasant having this therapy sessions with you because we always had really nice conversations.

31:04 But I can imagine you rather spend your time somewhere else with friends than with me on the treatment table and a health professional.

31:10 But again, what I remember was a very painful condition when you came in, I hardly could examine it.

31:14 And of course I didn't.

31:15 And I started much more subtle with trying to get some mobility into your tailbone.

31:21 How did you experience the therapy and what the therapy that I did did for you and how you underwent it?

Jeroen

31:28 Yeah, so it was a step by step approach, not overdoing it.

31:32 And when we started, we didn't know it was going to take 26 times or more.

31:38 Of course, the aim was, let's see if we can get you pain free.

31:41 But that was not happening in my mind, because I suffered for so many years that I was like, OK, let's get it under control.

31:47 And step by step, we tried out different approaches.

31:51 Some worked, some didn't.

31:52 But that was a trial and error.

31:53 But I never ended up with more pain leaving than coming in.

31:57 So that actually was quite a relief.

31:59 So I knew that if I was getting treatment, that it was just a treatment, and then I would maybe have some, what you would call after pain for a few hours,

32:09 but no rough nights or sleepless nights or whatever.

32:13 So it was micro steps, but every two or three treatments, we made a step.

32:19 The sensitization became less.

32:21 If I was in pain, it was less painful and it didn't take as long as before.

32:26 So it sort of took the edges off, gave me more confidence, and I think the whole area was less sensitive and less vulnerable for external factors or the way my body would react to stress or whatever.

32:41 So yeah, steps were made and happy with that.

32:43 And of course, driving to Amsterdam 26 times is not a hobby.

32:47 On the other hand, apart from the medication that I took before my colon, this was the treatment that actually helped me make a step in the process and gave me a bit more freedom,

32:57 a bit more relaxation, and it actually did something.

33:00 But like you said, I'm unlucky that I'm in your top five.

33:03 I rather would have been in your bottom five, but it is what it is.

33:07 But it definitely gave result.

Roel Wilbers

33:11 This story is not for me to share how brilliant I am as a physiotherapist.

33:16 First of all, I have to give all the gratitude to my teachers who taught me this.

33:21 I'm standing on their shoulders, what I always say.

33:24 But I think it's nice to see that it's a quite unknown therapy, yet unfortunately among doctors and even therapists, which can be very effective.

33:33 It's mild and it's very doable, although you have a direct treatment on the tailbone, and it has a lot of good effects.

33:40 And with Jeroen, it was quite a good business model with having someone in for 26 times, but normally that's not the case.

33:47 And on an average of four and a half times, like the people that complete their treatment trajectory, which is mostly a lot shorter, actually walk out without a problem.

33:55 And again, Jeroen also mentioned very well that this is not the top five to be in, so we cannot solve everything, but also even in this case,

34:04 we got quite nice results.

34:06 And I, of course, looked it up a little bit, and the first treatment, I did mobilizations directly to the coccyx.

34:12 And when you came in for the second treatment, you were actually surprised that although I touched it, this is what I wrote in my report, there was no after pain after the treatment.

Jeroen

34:20 Yeah.

Roel Wilbers

34:21 I felt that the tension around the tailbone already went a little bit down, it got a little bit calmer.

34:26 And after the four treatments, every time I increased the intensity a little bit, and you actually felt that the problems went down, and like Jeroen mentioned, I always love to ask percentages.

34:38 So it went down like 25% for a few days, and then after there was a trigger with having more tight clothes, it went up a little bit again to 90,

34:48 but then it recovered again on its own.

34:49 So that meant that the body was better able to take care of it.

34:53 And then after the fifth treatment, it even went for the first week to half of the problems, and then it again had a little fallback, and we went on and on.

35:03 And with that, after three months, we were able to actually do the external technique, to sit on the tailbone and do the mobilization, and we did all the steps.

35:10 That was after eight treatments.

35:12 And then we went down to a percentage of around 25%.

35:16 We had less pain after sitting in a car, and we kind of stayed in the 25% to 40 scale a little bit.

35:24 You used less medication and you felt less triggerable.

35:27 So also the nervous system definitely calmed down.

35:30 And in the end, the last treatment, we kind of did an evaluation and you said, okay, I'm around 20%, but that's when you take into account all the restrictions that you do in a careful way of living,

35:42 right?

35:42 And you said, if I take it in the bigger picture, say we want 60% and 40% is left.

35:48 That's kind of like how I rolled it down.

35:51 Is that correct, Jeroen?

Jeroen

35:52 Yeah, I have a bit of an allergy on these percentages because that's not the way my mind works, but at least, yeah, we made some serious steps.

35:58 It was re-improved, not there yet.

36:01 Maybe we'll talk about that in a minute.

36:02 The reason that I'm now in Germany.

36:05 But at least it was a major step in the process.

36:08 And it also helped me in sort of regaining confidence that my body could actually cope with triggers, and it would also recover from it.

36:17 So I think it helped me physically, but also mentally.

Roel Wilbers

36:21 Yeah.

36:22 And again, also in this, where we ended up, although there was an improvement, you couldn't still wear normal clothes, you couldn't sit without a pillow, right?

36:30 So there were still clear restrictions.

Jeroen

36:33 Yeah.

Roel Wilbers

36:33 And I said, at least gave you some more space.

Jeroen

36:36 Absolutely.

36:36 Yeah.

Roel Wilbers

36:37 You get a cliffhanger out of the way while you're in Germany.

36:40 We kind of like ended up on this like plateau.

Jeroen

36:43 Yeah.

Roel Wilbers

36:43 And then there were not a lot of options left anymore because you had most.

36:47 The specialist clinic here in Holland advised you to do the operation, if I remember correctly, in an early stage or way before I saw you, right?

36:57 So they said, okay, we have one option for you and let's take the tailbone out.

37:00 That's the only operation that they do.

Jeroen

37:02 Yeah.

Roel Wilbers

37:03 And you did your research and you managed to find a different step.

37:07 And that's the spinal cord stimulator.

37:10 And that's why you're currently from Germany.

37:12 Maybe just to explain a little bit for the listeners.

37:15 Jeroen dived into it very deeply.

37:16 And again, it's like more than most doctors about it.

37:19 But to give the basic versions, we perceive pain through our nervous system.

37:24 And this is where we register this alarm that the body gives when there's something damaged or starting to be damaged.

37:30 The nervous system that has this nerve and there's a kind of like electrical wires that pass the signal of pain through our body.

37:37 And it's registered in the brain and we can act upon it.

37:40 And this is of course super useful until the pain has not got any function anymore.

37:45 And there's something that cannot be solved.

37:47 So we don't need the alarm anymore and it's not solvable.

37:51 Or that the wiring is off and the pain is perceived when there's no damage or there's more pain perceived with the same kind of damage.

37:58 And this is the sensitization which Jeroen already mentioned.

38:01 In those cases, the pain signal can be numbed or decreased by electrical stimulation.

38:05 And because the signal to the nerves is an electric current, there's possibility to use a different electrical current and put it through the nervous system and kind of diminish the pain signal.

38:16 And we have a peripheral nervous system, so that's nerves in like your arms and your legs.

38:23 And we have a central nervous system, and this includes your brain and the spinal cord, so everything that's inside of your spine.

38:28 And that's in the central canal.

38:31 And treating the central nervous system directly to this form of electrical stimulation is done by implanting electrodes.

38:39 And it's in the form of a sort of needle close to the painful area.

38:43 And Jeroen was so kind to share his X-ray picture to have a visual on this, and I will post it with this episode on the website.

38:50 You can find the website link to this episode in the show notes.

38:53 And these electrodes give an electrical current through a little box that's like a pacemaker, and it's also implanted, and the aim is to calm the pain sensory system,

39:02 and with that, to perceive pain.

39:04 And next to the program modes in this like little box, the person can actually adjust the frequency through remote control.

39:10 And the effect is directly linked to the electrical stimulation in that moment, and the effect is also directly gone when the stimulation is not being done anymore.

39:19 So when the implant is removed again, or the little box is not attached anymore.

39:23 And the advantage over medication is that there's less chemical input for the body, and with all the side effects, with also Jeroen already talked about, what you had at the start with this strong medication,

39:32 and there's no long-term consequences if it doesn't work.

39:36 And maybe people already recognize a little bit about this method with TENS, and TENS is also something that's quite comparable, and this is also what Fissure sometimes uses as a treatment,

39:46 and that also works through electric stimulation of the nervous system, but just through the skin.

39:51 So externally, in a spinal cord stimulation, that's the same thing, but it's directly linked to the nerve tracks of the spinal cord, so it's in the spine,

39:58 so that's different.

39:59 It is a very specialized form of therapy, and mostly done in really severe cases, and in 25 years, of over 25 years, that I'm working as a physiotherapist,

40:07 I saw only one patient so far that had such an implant, and that was for persistent pain in his back, and that was also therapy-resistant.

40:16 What I understood of the doctor that actually helped Jeroen, and I saw a video of him where he explained this, that his form of therapy is done over half a century already,

40:24 but not often given, because it's quite a severe form of therapy, and it's like for the worst case scenarios often, and it's even more rare for the tailbone pain.

40:34 In the Netherlands, that is not even currently done or covered by the health insurance.

40:38 It's done in other parts of the body, but not in the tailbone pain.

40:41 So Jeroen had to go to Germany for someone who did this more often.

40:44 And what I understood of him, he does 300 of these a year, but only 10 per year for the tailbone.

40:50 And where I read some about this, and I saw the video of your doctor on the Tailbone Symposium, you dove into this a lot more than I did.

40:58 And I hope that what I just said was correct.

41:00 And maybe, I don't know if you can add things or complete things on this story and how the process went.

Jeroen

41:07 Yeah, I will try.

41:08 So I was still searching for final solution.

41:11 So I actually started Googling, my wife started Googling.

41:14 She found a study in Hungary, I think, that first explained one or two cases with severe tailbone pain that had been treated with spinal cord stimulation with very positive effects.

41:27 One of the issues is that scientifically not recognized because the volume is too low.

41:32 But yeah, the cases they described were relatively positive.

41:37 To make it clear, it is fighting symptoms.

41:39 It's not taking away the cause, it's taking away pain signals.

41:44 So I ended up Googling the treatment, found that in Germany, this procedure is being done more often.

41:50 In Holland, it exists, like you explained, but not for this area.

41:54 So I don't want to have somebody poking around for me as a trial, say, okay, let's see if we can make this work.

42:00 So I tried to find the specialist.

42:02 I found a doctor in Munich, and he is in his area very experienced, although he's young, but he's experienced in this area.

42:11 I sent him my complete history, and he decided to let me come to the clinic.

42:16 He did the full, let's say, research.

42:18 I didn't physically examine me because he saw that everything had been done already.

42:23 I looked at my file and he said, yeah, you've done it all.

42:26 There's one step between where you are now and removing the tailbone and that is spinal cord stimulation, where they would put an electrode in the, I think it's,

42:36 I don't know what the English term is, but it's a caudal space of at least a little bit of open space in the middle of your spinal cord,

42:44 where they would insert an electrode with eight different contacts.

42:48 The electrode is connected to a stimulator and stimulator on different frequencies can send out a signal, and that is on micro ampere level.

42:58 So it's not like, you know, putting it in a socket or stuff like that.

43:02 And if it works well, you don't even feel it.

43:04 But it basically disturbs your body, sending the signals from that area to your brain.

43:11 Their aim is 50% pain reduction.

43:14 So they never promise pain free.

43:16 Some people are because it's fighting symptoms and it's reducing pain through an external factor.

43:22 50% is the ratio that they're aiming for.

43:24 I went through the trial period in summer.

43:26 So I had the electrode installed, but not the stimulator, which was done externally.

43:32 So I carried it around on my hip and I took it on for a week.

43:35 And I found some effect, but less pain.

43:38 And funny enough, when he removed everything after a week, for about two weeks, everything was pretty quiet there.

43:45 Given the fact that I still had older restrictions and older precautions of not damaging that area, but at least it felt a lot better.

43:53 So he gave me some time to think about it, especially because it's not covered by the insurance.

43:58 And if you do the final implant, it's the same amount as buying a luxury car.

44:03 But in the end, I ended up with the decision, it's my health and if I can improve my pain levels, I'm going to do it.

44:10 So I had the surgery last Thursday where they installed both the electrode and subcutaneously, they drew a wire from let's say the sacrum, where they inserted the electrode to somewhere halfway,

44:24 my back and my behind.

44:25 And they cleared a small pocket below my skin where they inserted the stimulator.

44:30 So now I'm fully bionic.

Roel Wilbers

44:32 And this is like a pacemaker, right?

Jeroen

44:34 Yeah, it's the same.

Roel Wilbers

44:35 It's something that sends the signals.

44:38 Yeah, so you increased in value.

44:42 Definitely.

44:42 Even more.

Jeroen

44:43 You're already very valuable.

44:45 Now, it's the same technique as a pacemaker.

44:48 And of course, a pacemaker has a different way of pushing signals.

44:52 And this little machine is also used for brain stimulation with people that experience tremors from Parkinson.

45:00 The device is installed under the skin.

45:02 It's actually rechargeable.

45:04 So I have a special device, a battery that I can charge and I will put the battery on my skin.

45:10 And through my skin, it will load the device.

Roel Wilbers

45:13 So you don't have to open up again and put a new battery in and close again, no more operations.

Jeroen

45:18 No.

45:18 So there is a device that can last four to five years with no charging.

45:22 But I'm tall, but I'm also skinny.

45:24 So there was not enough room under my skin because then you will constantly feel that device sitting.

45:30 So he advised this device, which will last 10 to 12 years.

45:34 I have to charge it once a week and that's fine.

45:37 It will take 45 minutes and there is a small sort of girdle that they deliver with the device that if you have placed the battery in the right spot,

45:45 you just put on the girdle and you can watch television or whatever.

45:48 In the meantime, the device will charge and it has different settings in programs.

45:54 You can adjust the intensity indeed with a remote control.

45:57 It looks about the same as your remote from the television but don't get them mixed up.

46:05 So once the neurosurgeon had installed everything, then the computer guy came in and he actually logged on to the device and each point on the electrode can be managed individually.

46:16 So we can tweak how it works and where it works and where you feel it and etc.

46:21 Then you literally feel an electrical sensation in your tailbone.

46:26 But the wire is not in my tailbone, the wire is up, but you will see the x-ray on our website.

46:32 But the tingling sensation is in your tailbone.

Roel Wilbers

46:36 The nerves that actually go to your tailbone, like it's before that actually the nerves, it's there that they trigger it and not in the tailbone itself, or nerves going to your tailbone.

46:45 It's even like on a previous...

Jeroen

46:48 It's above that.

46:49 But the funny thing is you feel it in the tailbone, and once you've identified that it hits the right spot, then it will lower the frequency and the intensity just below the level that you don't feel it anymore.

46:59 And it's on 24 hours a day, because if you shut it off, then in a few hours or days, the pain will come back.

47:05 And it's a bit too early for me to say that it's actually working because I still have some pain issues after the medical treatment, because they have installed the device,

47:15 they've poked in my spine, I have sutures on two spots.

47:20 So it's a little bit sensitive in that area.

47:22 But first, signals are good.

47:24 And this week and next week I have two more checks and then I'm out and released.

47:29 I only spent one night in the hospital.

47:31 It's a relatively safe procedure.

47:33 If for whatever reason you decide you don't want to continue or the device has to be taken out, then there's no damage whatsoever.

47:41 So everything is, let's say, what is it, revocable or?

Roel Wilbers

47:45 Yeah, you can turn it around, you go back to the old situation.

Jeroen

47:49 Yeah, where removing the tailbone, of course, is permanent.

47:52 Once it's out, you cannot reinstall it.

47:54 And in this case, you can.

47:56 So far, I'm pretty happy.

47:58 The doctor is an experienced guy.

48:00 He doesn't over promise, which is also helpful.

48:02 And yeah, I hope it's another step in getting more and more pain free or have less disturbance in the things that I do in daily life.

48:10 But yeah.

Roel Wilbers

48:11 But it's still fresh.

48:13 It's a week ago, right, that you were operated?

Jeroen

48:15 Not even.

48:15 It was last Thursday and it's now Tuesday.

Roel Wilbers

48:18 So that's five days.

48:19 Yeah.

48:20 And this was also nice next to that.

48:22 The story of Jeroen is very unfortunately again, interesting.

48:26 Also, he can explain very well what happened.

48:28 And I was thinking actually of having the doctor maybe on the podcast.

48:31 But I think Jeroen can also explain this and with a little bit of background, that also patients have an extra option and know at least that exists.

48:39 And this is also my goal with this podcast, to give as much as different therapists, doctors or specialists, and Jeroen unfortunately became one, on a certain subject,

48:47 the stage so that they can explain and people know what's out there.

48:51 So, and make their own decisions like you did, because what you just mentioned, the main reason why you didn't go for the operation is because it's irreversible,

48:58 right?

48:58 So, like you said, when it's out, it's out.

49:00 And you wanted to try this step in between because the operation, it has kind of good results, but there's also a group that doesn't react that well.

49:08 And it's often, which Dr. Foy in his book about tailbone pain says, less than 10% get fully problem free.

49:14 So it's not just we take it out and the problem is gone.

49:17 And it's something to really consider.

49:19 And this is a step in between.

49:21 Yeah.

Jeroen

49:21 And what I found interesting, Roel, is the fact that, you know, the Dutch are a bit arrogant medically.

49:27 We think we know it all and we've looked at it, everything and et cetera.

49:31 But in Germany, this procedure is common knowledge.

49:34 In Holland, the surgery or the implanting, the system is done in very limited cases.

49:40 It's only used for failed back surgery syndrome and other severe cases.

49:46 And I'm not saying that in Germany, that everybody who comes in with tailbone pain will get the device, but at least it's covered by the insurance because it seems to be a very non-invasive effective therapy.

49:59 In Holland, they're not there yet, but this is a bit of the chicken and the egg because there is a limited number of cases available.

50:06 There's no scientific research.

50:08 Therefore, insurance companies don't recognize this treatment as being helpful.

50:15 So you're back to square one.

50:16 So I wrote to my insurance and I explained everything with all the medical details and all the doctors that had explained what was going on and I said,

50:25 yeah, but it's not on the list as a certified treatment for.

50:29 So yeah, that's why I referred back to Germany and ended up paying for it myself.

50:34 I'm in the lucky position that I can pay for it.

50:37 But I think it's a pity that there is treatment.

50:39 It's not voodoo, right?

50:41 It's effective, it's proven technology, but the only thing lacking is scientific research.

50:46 But you need a lot of cases to do scientific research.

50:50 Well, you are a specialist, but one of the reasons nobody dives into it, there's no money to be made from this area.

50:58 Big medical companies will rather do research for cancer, Alzheimer or whatever, and not in this specific area.

51:06 So I ended up paying for it myself.

51:07 I'm happy that I did it, by the way.

51:10 I was flat on my stomach for an hour and they gave me a sleeping truck.

51:14 They woke me up in the middle of the operation to test if they were on the right spot.

51:18 Apparently, I answered.

51:19 I don't remember anything, but then I went back to sleep and I woke up after an hour and everything was installed.

51:26 Of course, it's painful now, but that will go away in a few weeks.

51:30 Then the device should start working and get a lot of support from the technical company.

51:35 So whenever I need something, I can call them and I can even visit a specialist in the Netherlands, which will contact the German colleague, because otherwise I have to travel up and down to Munich every time there is an adjustment needed.

51:48 So lots of support.

51:49 Yeah, so far, so good.

Roel Wilbers

51:52 Yeah.

51:52 I kind of recognize the thing that if there's no research done, this is the golden standard nowadays in not just the medical world, of course, then it's not taken seriously or at least considered as a normal option.

52:05 I've run into that myself as a physiotherapist with the therapy we use and this is why I'm doing scientific research and I'm writing articles about it.

52:13 But even to get that published, it's the same as to get a therapy out there as like acknowledged.

52:19 It's a niche market, so there's not a lot of people and a lot of medical procedures.

52:24 There's also the pharmaceutical industry which sponsors most of the medical research, what I understand.

52:30 This is also not very beneficial for medication from pharmaceuticals because it's-

Jeroen

52:34 No money to be made here.

Roel Wilbers

52:36 No, it's a therapy that goes around it.

52:39 Unfortunately, this is also a little bit how the insurance companies work.

52:42 It's not on the list, it's not on the list.

52:43 Although it's done for different areas of the body and then it's covered, like this former patient of mine, but not for this specific area.

52:52 Everybody in the world can listen to this podcast and maybe in your country, it is covered, so it's good.

52:57 If you are interested in this procedure of spinal cord stimulation, I will write a little bit more about it in the webpage connected to this episode.

53:05 Then it's something that you might consider.

53:08 I think also the nice thing about it, what you explained to me is that you had in a summer, you had already a test period.

53:14 They tested it, where a needle was also inserted, but it was an external device, and you could try it out for a week and see what it did.

53:24 That was a short procedure, which I understood of you.

53:27 It's not like a big operation you have to go through.

53:30 You can also already test it.

Jeroen

53:32 Yes, they always do the trial.

53:34 I read some articles afterwards.

53:36 I think a high percentage, 92% something decide to do it after the trial, but the trial is done, it's less invasive because the only thing they insert is the electrode and everything else is exterior.

53:49 So there's a little wire going into your back and that's it.

53:52 And of course you have a lot of band-aids and plasters and stuff like that, but they will remove everything after a week.

53:58 No scars, nothing left.

54:00 So you can actually test, not the final effect, because the device will take time.

54:04 It can be days, weeks or months before the right program hits the right frequency with your nervous system, because every body is different.

54:12 But the trial period is to establish, does it have an effect?

54:16 Yes or no.

54:17 And if you feel that it does something, that's of course the cross-section where you say, I will go left and do it or I go right.

54:25 Thank you, but I'm not going to do it.

54:27 And then still this procedure was also not very invasive.

54:31 I have a five centimeters scar on my lower back.

54:34 It's below your box short, so nothing to be seen.

54:37 And it has a size of a macaroon, the little French very expensive pastry.

54:41 So it's a very small device.

54:43 You're not carrying around a big bump or a backpack.

54:46 It's an expensive device, but it's small.

54:48 And even now I can touch the area where it was installed.

54:51 So I found it relatively light procedure.

54:54 Of course, yeah, there's still something in your spine, but everybody is medically agreeing that there is very little risk.

Roel Wilbers

55:01 Yeah.

55:01 I think just to explain what you call non-invasive is not intense, I guess, because in the medical world, what they call invasive is when it goes into the body.

55:09 It is kind of invasive, like it's an operation, but it's not just to understand you clearly.

55:14 What you mean with it's not invasive, like it's not a huge thing or a very intense or that they-

Jeroen

55:18 No, it's not a major surgery or they will open up your whole belly or they will crack your chest open or whatever.

55:24 So yes, it's below the skin.

55:26 So it's subcutaneously, I think the word is.

Roel Wilbers

55:29 That's the word, yeah.

Jeroen

55:30 But yeah, I have a few scars on my body because I cut myself with my hobby, which are the same size.

55:36 So it's literally putting something in your skin.

55:40 It's not like taking an organ out or the previous surgeries that I've had with removing the colon or repairing a hernia.

55:46 So if there's no recovery, I could get out of bed one hour after the surgery.

55:51 They only kept me there because I have nobody to go home to, because I'm here staying in a small apartment.

55:57 Otherwise, I could have gone home the same day.

56:00 That also says something about the intensity of the procedure.

Roel Wilbers

56:03 Yeah.

56:04 I think if I just sum it up and please add to this, is that let's call it the pros and the cons.

56:10 The cons is not doing anything about the source, it's just treating the symptoms.

56:16 On the other hand, they just do this when the source approach was ineffective, they don't start with this.

56:23 The pros of this procedure is that it's reversible.

56:27 You have almost no side effects like you have with medication.

56:30 If you take medication for years or decades, it has the side effects, especially if you have strong pain medication and you already shared how much side effects you have.

56:39 It's also you can control it, it's very individually controlled and you have a lot of help.

56:43 Is that correct?

56:46 Yeah.

Jeroen

56:47 Of course, I have to wait a few weeks, months, patience is not one of my better qualities.

56:54 But at least it will take some time to see if it really works.

56:57 But there are also cases where people have improved with over 70 or 80 percent.

57:02 But I don't have that expectation.

57:04 I'm happy with whatever it will do.

57:06 And for now, I feel that it does something.

57:09 And by adjusting frequencies or intensity, you don't have to adjust the position of the device.

57:16 It's installed, the x-ray shows it's right where it's supposed to be.

57:20 Your body will grab it in 8 to 10 weeks.

57:24 When they install it and draw the wire from your spine towards the device, they will stitch that up, but those stitches will dissolve below your skin, and the external stitches will be removed next week.

57:36 But then your body will just, what do you call it, capsule it in.

57:40 I don't know what the English word is, but now I have to be a little bit careful with the way I move.

57:45 But in 8 to 10 weeks, you can even go back to doing sports or whatever you want to do.

Roel Wilbers

57:50 Now, so I think this gives a clear idea of this procedure.

57:55 What I, lastly, to add what I read about it, that it is also less often done, which the surgeon explained in this video, in the pelvic area,

58:03 because it's kind of more complicated with the anatomy and the innervation, because there's a lot of different nerves that have influence in the pelvic area.

58:11 And they also show here how sensitive the area is, that they have to use lower frequencies, because in the cases where they saw that the frequency was a little bit too high,

58:21 it is easy to over-stimulate the nerves.

58:24 And this is why they use lower frequencies in this area than with comparable implants in other areas of the body to prevent over-stimulation.

58:32 So that also confirms also the story, which you said before, like it's so incredibly sensitive.

58:38 It's such a small part of the body, but it can give you such an amount of pain.

Jeroen

58:41 Yeah, and I think in the video that you mentioned, there are some x-rays there as well, but actually there you would see that the electrode is inserted from the sacrum down into the coccyx,

58:53 which ended up with some people having a lot of pain in the pelvic area.

58:58 So the procedure has been changed over.

59:00 So it's constantly evolving.

59:02 And the way I have it now is that actually the electrode is up, but it still affects the area in the coccyx without the side effects or possible pain in the pelvic area.

59:12 Even if the technician, if he's at his laptop and he's increasing, so he's pumping up the volume to, then you literally feel it, but that's not painful.

59:23 You just feel a little electrical signal, but it doesn't hurt because it's so close to the spinal cord.

59:29 Everybody says less is more.

59:31 So you'd rather have very low intensity and start from there than trying to increase it because it will work better.

59:40 It will probably not work better.

59:41 And I think that's a benefit.

59:42 You don't feel it, where the tense machine, I've used it as well, but you constantly feel current on your skin and you can only do that for half an hour.

59:50 Then you have to shut it down and wait for half an hour.

59:53 And of course, during nighttime, you cannot install that machine.

59:57 The thing that I have now, I don't feel it because the frequency is so low, but it still does the job.

1:00:02 At least that's what I have to find out of course, but that's the way it should work.

1:00:06 You're not supposed to feel it.

Roel Wilbers

1:00:07 Yeah.

1:00:08 And I hope in Jeroen, his top five clients, is it the best of facts?

1:00:13 So yeah, in that top five at least.

Jeroen

1:00:15 Let's hope that he finally decides to do a publication in a medical journal that I was one of the most severe cases he saw and that he ended up doing it.

1:00:24 But he's like you, he's really focused.

1:00:26 He's very pragmatic.

1:00:28 He's a great doctor, so I'm happy with him.

1:00:30 And if people are interested in his name, they can contact you and then we'll share the name.

Roel Wilbers

1:00:35 I will share the video of his presentation.

1:00:37 He did this on the World Congress of Coccyx Pain.

1:00:41 And he did the presentation for colleagues, so it's a little bit tactical.

1:00:45 But he also has this interview with one of his patients and it's on YouTube.

1:00:49 I will share that and then people can check it out there.

1:00:51 So I think this gave a pretty clear idea of this treatment method.

1:00:56 So thank you for sharing all of that.

1:00:58 And as I mentioned before, you dove deeply into the subject of tailbone pain yourself in your journey, and a lot deeper than actually all of my patients so far.

1:01:07 And like I said, I think you know more than most doctors and therapists about the subject.

1:01:12 And you used to work in the very high segments of the corporate world and had board positions even there.

1:01:17 You combine from where I stand, a lot of intelligence, overview and clear thinking, with a thorough research on the subject.

1:01:26 And it made me curious in how you see the tailbone world and what the problems are.

1:01:31 Like sometimes we specialists get kind of caught up in knowledge and concepts that are kind of fixed, that is often happening in the medical or therapeutical world.

1:01:39 And this is where we sometimes miss things that we need to re-evaluate.

1:01:42 And this is what I'm trying to do now in the way that we perceive tailbone pain currently, where I think there's consensus that people see that it's a biomechanical problem like doctors and therapists.

1:01:53 And the idea is mainly point to instability, which is an increased mobility, where I actually think we have to look in the opposite way, where there's, yes,

1:02:01 instability maybe and an increased mobility.

1:02:03 That's what we see in the X-rays, but there's reduced mobility in the areas around it, and that the lack of mobility causes the problems that start from the increased mobility in the other areas.

1:02:14 So how do you, that entered with a fresh view into this world, and you're not backed up, but also not hindered by the medical and therapeutic education and knowledge,

1:02:24 see the tailbone world and the problems?

Jeroen

1:02:27 Yeah, it's a very scattered landscape.

1:02:30 A normal GP has limited patients, so he will just refer to pain medication or injections.

1:02:37 If you have a problem with your muscles, it's clear where you have to go.

1:02:40 If you have something with your stomach, it's really clear which medical specialization will be applicable.

1:02:46 Here, it belongs to nobody.

1:02:49 I don't mean that literally because you've taken on the subject and you really are specializing in it.

1:02:54 But everybody works on their own island, and they all believe in their own approach.

1:02:58 And the approaches are not in the same direction.

1:03:02 So where one says, okay, injections are fine, and if the injections don't work, take it out.

1:03:08 There's a whole world in between because taking the tailbone out can have very severe consequences.

1:03:14 And of course, medically it's difficult because the tailbone itself doesn't have any use anymore.

1:03:19 It used to be literally our tail when we walked on four legs, but it's still there like the appendix, right?

1:03:25 It also doesn't have a function, but it can also kill you if you have an infection on your appendix.

1:03:31 And it's the same here.

1:03:32 So it's a difficult area.

1:03:33 It's very sensitive.

1:03:35 It's a combination of is it ligaments?

1:03:37 Is it nerves?

1:03:38 Is it tension?

1:03:39 Is it infection?

1:03:40 Is it whatever?

1:03:41 I think in most cases that I've seen nothing shows on x-rays or I've had it all because I had cancer.

1:03:48 And of course, the first thing they do is do a CT, an MRI, and even had, you know, what do you call it?

1:03:55 Nuclear research.

1:03:56 So I injected nuclear into my veins to see whether there was anything wrong.

Roel Wilbers

1:04:01 There's contrast fluid.

Jeroen

1:04:03 Yeah, yeah, that's right.

1:04:04 Nothing was wrong, but still I had a lot of pain.

1:04:07 So I think for a number of people, it's too difficult.

1:04:10 So they will just circle around it.

1:04:13 And for the patients, it is super intense because it's painful.

1:04:18 It affects your life.

1:04:20 You can have treatment that can actually make your pain worse.

1:04:24 Like in my case, that somebody just touches it because he wants to feel how it's set and with no knowledge and you're back to square one.

1:04:31 So yeah, the tailbone world, it's not a world, it's all different islands and it's all different people.

1:04:38 Like you said, with the right intention.

1:04:39 So I'm not saying that these people don't know what they're doing or because everybody's doing what they're doing and they're not doing it to harm you.

1:04:47 But I think there is a general underestimation of the complexity.

1:04:53 And of the impact it has on people.

1:04:58 So that's why I think, you know, multidisciplinary approaches would be best.

1:05:03 But yeah, then it's the question, how do you mobilize that?

1:05:06 Because the one is in the hospital, the other one is in self-employed and the third one works at a clinic.

1:05:12 So I think sharing knowledge would be helpful.

1:05:15 But like you said, when I started looking for solutions, I ended up in Germany through a research done in Hungary by a Greek doctor.

1:05:26 And of course, Google will provide you all the documents, but combining all that knowledge like you did in your paper, that is a tough job because not everybody agrees on the approach.

1:05:38 Where generally on other medical topics, there are a lot of opinions that usually go in the same direction and have a nuance or built on previously done research and etc.

1:05:48 But here, it's so unknown and unpopular to be quite honest, I think.

1:05:57 Yeah, as a patient, you are struggling and there's no clear path that you can walk.

1:06:03 But I've done it all, but I'm active, I tried looking for solutions, I ended up having some scratches on the nose.

1:06:10 But yeah, you have to figure it out yourself because most people I spoke to said, yeah, well, this is it, nothing more I can do, good luck.

1:06:19 So then you have to look for the next step yourself.

1:06:22 So that's a bit of the struggle as a patient.

Roel Wilbers

1:06:26 Unfortunately, this is a story, although you said some really nice, interesting new things for me, which I definitely want to go into in a bit.

1:06:32 But this is a story I unfortunately hear from most patients.

1:06:35 They have to find me by themselves.

1:06:38 I am more and more referred to from doctors that actually heard maybe through a patient like, there's a therapy around, but they don't know themselves.

1:06:47 Most people find me to Google or ChatGPT, and that's the same with the other healthcare professionals that are working in this area.

1:06:54 I never heard it like this, but I like your explanation that there's not a tailbone world, but there's islands.

1:07:01 That's definitely true.

1:07:03 For instance, with the physiotherapy, we know it's effective.

1:07:05 It's been written for thousands of years that it's effective, but it's not proven enough so that it's taken seriously by a lot of doctors, for instance.

1:07:14 What I think is very good is that there's World Symposia where all these specialists actually get together.

1:07:20 And the next symposium is in 2026, Kentucky.

1:07:23 And that's where I'm also invited to speak because of my paper, which you, thank you for editing and giving nice feedback on it, where one of the people looked at it.

1:07:32 So there's initiatives, but it's slow, and it definitely didn't reach the regular doctors yet.

1:07:38 So it's really, you have to first find a specialist, and that's mostly the work you have to do yourself as a patient, and if you hear from your doctor,

1:07:45 from your first doctor, there's nothing to do about it, there's no therapy, then the incentive is not to search on, right?

1:07:51 The incentive is like, okay, if the specialist says it already, why should I look and go on with searching?

Jeroen

1:07:56 Yeah, right.

1:07:56 So a lot of the comments you hear from people, also what you find online, is that learn to live with it.

Roel Wilbers

1:08:02 Yeah.

Jeroen

1:08:03 And that's not the way to approach this, because it's not a blister, or it's not losing your hair.

1:08:10 It's way more impactful.

1:08:12 So learn to live with it.

1:08:13 I don't think that's the treatment, because that almost sounds like, you know, it's small stuff between the ears.

Roel Wilbers

1:08:19 Yeah.

Jeroen

1:08:20 But yeah, this is what it is.

1:08:22 And I'm grateful for people like you and the neurosurgeon that performed the surgery last week on me.

1:08:29 That there are people that stick their neck out.

1:08:31 Also for approaches that seem maybe controversial versus other established treatments.

1:08:38 But yeah, those treatments are not helping a lot of people.

1:08:41 So you can insist that we keep on treating the same way, but if the percentage of people that are actually helped is low, then why do you keep on doing injections where it really it's not effective?

1:08:53 And it's also very costly because the insurance company, without even blinking, would pay for all those injections.

1:09:00 But they're not effective.

1:09:01 So why not pay for an effective treatment where regular treatment which is done is all compensated, but it doesn't help.

1:09:08 So it's funny.

1:09:09 So it's frustrating, to be honest.

Roel Wilbers

1:09:11 Yeah, I can't fully imagine.

1:09:13 I read the injections in the research, it shows a lower effectivity in the long run.

1:09:18 In the short run, yes, in the long run, no.

1:09:20 And it's the best research thing.

1:09:23 And it's actually research that there's no real long-term effectiveness, but it's still the therapy that's probably given the most.

Jeroen

1:09:29 Yeah, we keep on doing it, we keep on paying for it.

Roel Wilbers

1:09:32 And it's mostly also because of a lack of knowledge with the doctors and the therapists.

1:09:37 This is the pitfall of most therapists and doctors, they want to help.

1:09:40 They're in this profession to help.

1:09:42 So they try their best, they try everything they know, but actually maybe it's good to also establish or look further or admit that you don't know.

Jeroen

1:09:52 Yeah, I'm sorry, I'm not blaming anyone.

1:09:54 I think everybody wants to help between medical doctors and paramedical like you, because they don't see eye to eye, to be quite honest, because if a surgeon or somebody else would refer to a physical therapist,

1:10:06 like, okay, well, you could try it, but yeah, you know, why not?

1:10:11 Instead of this could be a real addition to the treatment.

1:10:14 So we will go hand in hand.

1:10:15 So the surgeon and the physical therapist can maybe treat a patient at the same time, right?

1:10:21 But there is a big, big gap between those two areas of expertise, where one isn't better than the other, in my opinion, but that's not the way it's being perceived in the medical world.

Roel Wilbers

1:10:32 This is, I think, definitely true.

1:10:34 And I think it starts from that a doctor looks mainly from structure, pain and inflammation.

1:10:40 That's the factors they look at and they kind of intervene with.

1:10:44 And we look to function and mobility and joints and muscles, which is a completely different way of looking.

1:10:51 And I think what you state is very true.

1:10:54 It is very complimentary.

Jeroen

1:10:56 Yeah, it could be, but now it's disconnected.

Roel Wilbers

1:10:58 Yeah, the fully right.

1:10:59 And what my first guest in this podcast said, doctors maybe should, instead of saying we don't know, say that I don't know.

1:11:08 And also something for me is a therapist.

1:11:11 You mentioned that the tailbone doesn't have a function.

1:11:13 We don't know.

1:11:14 The jury is not fully out on that.

Jeroen

1:11:16 Okay, okay.

Roel Wilbers

1:11:18 But it's just to set that straight.

1:11:21 It is an attachment site.

1:11:22 You can live without a tailbone, like people that are operated, to prove that.

1:11:26 It might have a function, but we don't know yet.

1:11:28 And also the last thing that you said, this is also very true and good to state that often you don't see the problem on imaging, on imagery,

1:11:36 like x-rays or scans or whatever, right?

1:11:38 So you think you see everything, and I have a lot of patients that actually tell me, but shouldn't I make an x-ray or an MRI or whatever?

1:11:46 It's not the holy grail.

1:11:47 It definitely shows tumors, it shows fractures and it shows those kind of things.

1:11:51 But often those things can only be ruled out just listening to the story.

1:11:56 It is definitely not a fool, and especially also for tailbone problems, something that gives you the answer to the problems.

Jeroen

1:12:03 Now, the doctor that I saw last week was the first one who actually said, yeah, x-rays don't mean anything to me because I need to see the position of the tailbone when you move.

1:12:12 But he had already seen that I had done so much, so he said, we'll go to this step immediately.

1:12:17 But he was aware of the fact that an x-ray is a still picture, and the tailbone actually moves.

1:12:23 But he acknowledged the fact that actually an x-ray doesn't show anything.

1:12:27 It shows something, but not the cause of the pain properly.

Roel Wilbers

1:12:30 That's a tumor, but that's a very, very minor part of the tailbone pain process.

1:12:35 The x-ray, actually, the dynamic radiography is invented by Dr. Menya, a French doctor in the 90s, and he actually makes an x-ray standing and sitting and looks at the difference,

1:12:45 is the tailbone moving and in which way is he moving?

1:12:48 Now, I'm actually trying to make a point that the way we interpret this might give us more clues, but on the tailbone experts, this is normal.

1:12:55 That is, we have to have a dynamic x-ray and not a static one.

1:13:00 I think that the conversation was very, very valuable.

1:13:04 To end it up, the last two questions, what did you learn about tailbone pain that you wish you had known from the start?

Jeroen

1:13:11 That there's no one treatment.

1:13:13 I think in the beginning, I relied too much on the expertise or the lack of expertise of the people I saw, instead of doing my own research.

1:13:22 I think it also shows that there is more that we don't know than that we know.

1:13:28 Everybody who has been to university or whatever, to school, thinks they know everything, but I think there is very little that we actually know, and the rest were just guessing.

1:13:37 I think the guessing is also interesting because there could be options there that we've not looked at before.

1:13:44 I think it's a pity that it's an undervalued complaint or injury.

1:13:48 On the other hand, it is what it is.

1:13:49 So we can just join hands and share information and make sure that people find the right path for them.

1:13:56 Because some people might benefit from the injection.

1:14:00 I just said I didn't benefit from any of that, but that doesn't mean it's not effective for everyone.

1:14:05 But my advice would be keep looking, don't give up, make the adjustments like I did, and whatever you want to do, you do because there is still a lot to be done to manage the pain and to do the things that you feel are most important in life.

1:14:19 It feels like a bit philosophical, but I mean that in a true way.

1:14:24 It's an injury, it's a small handicap, it's really annoying, and at times I'm frustrated, angry, at the same time I say, okay, about frustration and anger doesn't bring anything.

1:14:34 So keep your head up and keep going.

1:14:37 And even if I have to live with the cushion for the rest of my life, I'm fine with it, just as long as it doesn't affect me the way you did in the last few years,

1:14:46 but I'm at that point already.

1:14:47 So I'm actually quite happy with where I am now, where of course I would have been happier if this hadn't happened to me.

1:14:54 But yeah, that's not how life works, unfortunately.

Roel Wilbers

1:14:59 There's so much truth and wisdom in the words you just said.

1:15:02 The moment I thought I knew most about the physical problems of the body was the day I left the education of physiotherapy.

1:15:11 And through the years, I just found out that everything that's in the textbook is never just like exactly how it is in the textbook.

1:15:18 And with every answer you get, you get two more questions.

1:15:21 So I think we need to stay humble and to stay open and keep searching.

1:15:26 And also here, this podcast series is recorded in 2025, 2026, maybe 2027.

1:15:32 I don't know how far we go, but new knowledge will pop up.

1:15:35 And I try to keep things updated.

1:15:38 This is a fairly new therapy we talked about, although it's already done for 50 years, right?

1:15:42 But for tailbone problems, and I think you already answered the last question with this as well.

1:15:47 What would you like to tell or advise the people suffering from tailbone pain with the experience you have now?

1:15:52 And I think what I heard you say is that keep your head up and keep searching and don't settle for the answer.

1:15:57 There's nothing to be done.

1:15:58 I don't know if I interpret that correctly.

Jeroen

1:16:00 Yeah, absolutely.

Roel Wilbers

1:16:03 Okay, then I think we come to the end.

1:16:06 Is there anything you wanted to share that we didn't talk about you because we had a quite nice long talk about it?

1:16:11 Is there anything I missed out or we didn't talk about you wanted to share?

Jeroen

1:16:15 No, I don't think so.

1:16:16 We've covered a lot of ground and it's been a nice and open discussion like we had when I was lying face down on your table.

1:16:24 Yeah, so if there's anything I can do to give information or to share my experience with people, I'm more than happy.

Roel Wilbers

1:16:31 Yeah, perfect.

1:16:32 And I'm very grateful you wanted to give this valuable contribution to this podcast and help.

1:16:38 We don't know how many people and in what countries around the world.

Jeroen

1:16:41 Let's see.

Roel Wilbers

1:16:43 Thank you so much Jeroen for being here today.

1:16:46 So welcome back now today, six months after our last conversation with Jeroen.

1:16:52 And nice to have you back Jeroen.

Jeroen

1:16:54 Yeah, same here.

Roel Wilbers

1:16:55 So we, of course, me and the listeners are very curious how it went, because we talked to you then and it was straight after the intervention.

1:17:04 How did it go after that and how are you now?

Jeroen

1:17:07 Yeah, so it's a couple of questions.

1:17:09 So I'll take you through it.

1:17:10 So surgery went well.

1:17:12 Everything was successfully implanted.

1:17:15 I went home.

1:17:16 The surgeons already said, don't sit in your car for 10 hours.

1:17:19 And he was absolutely right, because the area was still really painful.

1:17:23 Of course, you know, surgery and stitches and everything, and swelling from the procedure itself.

1:17:29 That took maybe six to eight weeks to settle down.

1:17:32 And in the meantime, the system was working.

1:17:35 So I was getting an electronic pulse in the affected and the painful area.

1:17:39 So the pain from the surgery went away.

1:17:42 And that was as predicted somewhere between eight and 12 weeks, that is all gone.

1:17:47 But I was left with a sort of a peeling, like a burning sensation.

1:17:51 That's how it started.

1:17:52 And then after a couple of weeks, it became worse.

1:17:55 So I decided to lower, let's say, the intensity of the device.

1:17:59 And eventually even ended up with shutting it down, because it was getting more and more painful over the weeks.

1:18:06 And after some investigation, and I was in touch with a number of, let's say, experts, both from the clinic and both from the supplier, we found out I had some trouble with overstimulation,

1:18:18 which was a risk that was explained beforehand, that there is a risk of overstimulation, because the electrode is very close to the nerve root.

1:18:28 It's really close.

1:18:29 So the more you stimulate it, the nerve can also get agitated and send the wrong signals.

1:18:35 So I was aware of the risk.

1:18:37 And of course, you don't want to have that happening.

1:18:39 But it happened to me.

1:18:40 And I shut the device off for a couple of weeks to let everything settle, because it's not that you shut it off, that the nerve immediately settles down,

1:18:48 takes a couple of weeks.

1:18:50 And after that, they made some changes and tweaked the way the device was set up, and especially the intensity of the pulse was really lowered.

1:18:58 Actually, I think at one-third of the strength that it was initially programmed with, and now it's doing its job.

1:19:06 So I'm not pain-free, and nobody promised me, by the way, pain-free, because if they shut down all the signals in that area, you have a number of additional problems.

1:19:15 So it's still fighting the symptoms.

1:19:17 But I can easily say that it has reduced the pain with 50% or more.

1:19:23 And at times, I still sit on the cushion, and I still have to take all the precautions that I took over the last couple of years.

1:19:31 But there are now moments that I'm, let's say, when I'm not stressing anything, I'm almost pain-free.

1:19:37 So yeah, it's actually doing its job now.

1:19:40 Of course, I hoped that I could get rid of that silly cushion that I have to carry around all the time.

1:19:45 But yeah, that's not the case yet, maybe in the future, because we're still tweaking the settings of the device, and that's all done remotely.

1:19:53 I literally have a remote control, and the technician can dial in to the device, and change the settings, and change the frequency, and even change the different dots on the electrode.

1:20:03 So for now, I'm fairly happy with the result.

1:20:05 It works, the device does what it was supposed to do, and there is some room for improvement, hopefully.

1:20:12 But I'm taking it very slow because I don't want to risk having overstimulation once again, because that was a very painful period, both physically and mentally, because yeah,

1:20:20 you think, okay, this device will lower the pain, and it actually increased the pain for a couple of weeks.

1:20:26 But yeah, that's all behind us now.

1:20:28 The advantage of this lower frequency and the lower intensity is that I don't have to charge the battery every week.

1:20:33 So the best battery will last six to eight weeks.

1:20:36 So when I say to my wife, I need to recharge, it's only every other month that I will do that.

1:20:44 That's a very simple procedure.

1:20:46 I lie in bed, I have a remote battery that I place on top of the device and I read a book for two hours.

1:20:52 Once it beeps, I'm all set.

1:20:55 I don't have to carry around the remote control anymore, so I can just be on my way.

1:20:59 If I want to change something, I can get the remote, but you don't have to carry it constantly.

1:21:04 So all in all, it was quite an adventure.

1:21:06 I'm still at the tail of the adventure, but I'm relatively happy with the result.

Roel Wilbers

1:21:13 At the tail, nice way of presenting it with the tailbone.

Jeroen

1:21:15 Yeah, that's an unintended rule.

Roel Wilbers

1:21:20 I can imagine, especially also for the listeners, nerve pain is really, really painful, right?

1:21:26 People maybe recognize it from a tooth or somewhere else.

1:21:30 It's very tender material, so if you stimulate that, and we already talked about that, that was one of the things, one of the risks that the surgeon wanted to prevent.

1:21:38 Unfortunately, that didn't work for you at the first stage.

1:21:42 Then it has to calm down, the agitation, but 50% is nice.

1:21:45 And is there any expectation?

1:21:47 Is this it?

1:21:48 Or are you still thinking that much of the tweaking phase that it would eventually get better even?

Jeroen

1:21:53 Yes, I'm shifting between hope and ratio, so I would be fine if this is it.

1:21:58 Of course, you want to be pain free, but I've given that up because that's not going to happen.

1:22:03 My guess is because it's now at such a low intensity that if I tweak it up a little bit more, the effect could also improve.

1:22:10 But as said before, I want to take it really slow and step by step.

1:22:15 You don't want to go back to over-simulation again, because that means you have to shut it down, you have to wait for a couple of weeks for it to settle,

1:22:21 so not going to do that.

1:22:22 But to be honest, I think over the last four or five weeks, I've not missed one good night because of the pain.

1:22:31 Before, I had two or three nights out of seven days in the week, I would have a bad night because of the pain.

1:22:39 So that also affects the way you function and the way your mental health is going.

1:22:44 So if you sleep better, you're in better condition, you're more flexible, you're more resilient.

1:22:49 So that's one of the big advantages now that it's no longer a painful sensation.

1:22:56 It's a bit hard to explain, but I still feel the presence of everything.

1:23:00 But if the pain is gone, the rest you can block out and your sleep will do the rest, right?

1:23:05 But if you are in nerve pain, it's really hard to fall asleep.

1:23:09 And if I did fall asleep, I would wake up middle of the night and I would never go back to sleep again.

1:23:15 And that means you have to drag yourself through the day and that does a lot with the human being.

1:23:20 But for the last four or five weeks, I've not missed one night.

1:23:23 So that's a big plus where I stand now.

1:23:26 Yeah, if you compare it to your original goal, trying to get rid of the pain fully.

1:23:32 Okay, we're not there.

1:23:33 But if you compare it to the worst period where I was in real pain, and you would constantly think about it, because you felt it all day,

1:23:42 all night, that's gone.

1:23:44 Yeah, we moved a lot in the spectrum versus being able to function normally.

1:23:48 I explained to you that I used to have a sitting job, lots of kilometers in the car and playing, and I was sitting in an office and in board rooms.

1:23:56 And now 80% of the time, I'm walking around.

1:23:59 That also helps.

1:24:00 Yeah, so all in all, happy that I did the procedure.

1:24:03 It was quite a journey because I had to travel to Germany.

1:24:06 Unfortunately, the insurance company didn't pay for it, so I had to put my savings account and to empty it and to pay for the procedure.

1:24:13 But I would do it again if I had to.

Roel Wilbers

1:24:16 This was one of the questions I had.

1:24:18 Would you do it again, like in hindsight, where you're now, right?

1:24:21 With even theoretically at least a chance of maybe getting more improvement, even when the tweaking is even more optimized, which you don't know.

1:24:28 That's a yes for you then.

Jeroen

1:24:30 Yeah, sure.

1:24:31 Of course, sometimes I'm jealous at people who can just sit on a bench somewhere or go into the cinema and relax in a chair because that's not where I am.

1:24:40 On the other hand, I work in health care now, and sometimes I have to push people in a wheelchair.

1:24:46 I'm not in a wheelchair, so it's all relative, to be honest.

1:24:49 There are some days where I'm really pissed off that this happened to me, and I would love to be able to move freely and to sit wherever I want to sit,

1:24:58 to lie down wherever I want to lie down.

1:25:00 But yeah, once you have come to peace with the fact that with adaptations, I can function very freely and I'm still happy, then I'm fine with it.

1:25:11 You don't want to compare yourself to somebody who's super healthy, and if I see the number of people around me who have something wrong in their physical health or mental health or whatever,

1:25:19 I'm like, okay, this happened to me, that's it, and somebody else has something else, and in many cases, they have worse things than mine.

Roel Wilbers

1:25:28 I'm happy to hear that you now are living a reasonably okay life with it, right?

1:25:34 You can function with it.

1:25:35 I think the pain also, what you said, all the things you described, I fully agree, of course, but also with less sleep, you also feel the pain more.

Jeroen

1:25:44 Oh, definitely.

1:25:45 That drives you crazy.

Roel Wilbers

1:25:47 Yeah, your pain threshold goes down.

1:25:49 So also, I think that is the fetish of sleep.

1:25:51 And I always say that sleep is overrated, was not said by someone who had young kids in their lives.

Jeroen

1:25:57 No, no, no, no, right.

Roel Wilbers

1:25:58 Or had pain, right?

1:26:00 So I'm very happy to hear that this is actually this good.

1:26:04 I think one more question in the end, which I just think of, when we talked about it, there was actually one option left which you didn't do.

1:26:10 I write that was the tailbone removal surgery.

1:26:13 And you went for this one, right?

1:26:15 This is the kind of in-between step which is hardly known.

1:26:18 And I'm very happy that we have this episode, so that you at least can explain it and inform people about the existence.

1:26:25 If it's the way it is now, you wouldn't take that final option.

1:26:29 How would you see that?

1:26:31 Or you say, okay, in a few years, I might consider?

Jeroen

1:26:34 Yeah.

1:26:35 If I could predict the future, I would start my own consultancy company.

1:26:41 Fortunately, that's not one of my talents.

1:26:44 You know, if the success rate was 95% on the surgery, I would probably consider it.

1:26:51 But that's not the case.

1:26:52 The success rate is lower and the risk of having complications, medically speaking, it's large and there's no way back.

1:27:01 So once it's out and you are left with pain, and in some cases you could end up with more pain or having all kinds of trouble with your pelvic floor.

1:27:09 So I think the risk is too big.

1:27:12 So if this is what it is, then I'm fine with it.

1:27:15 The device hopefully can stay in for 10, 12 years.

1:27:19 By the time I'm 67, 68, we'll see then.

1:27:24 Technology might have improved, medical research might have been renewed.

1:27:28 You are one of the contributors in this field.

1:27:31 So 10, 12 years, medically speaking, is a long time.

1:27:34 So we'll see then.

1:27:36 And of course, during my worst nights, with a lot of pain, I just imagined I would drive to a hospital, grab the surgeon, and force him to remove that silly thing.

1:27:48 But yeah, the result is too unpredictable.

1:27:51 So I don't want to risk it.

1:27:53 And I can manage it like this and happy with the steps that eventually this device gave me.

1:27:59 At this point in time, I wouldn't take the risk.

1:28:01 Yeah.

1:28:02 And let's see in 10 years.

1:28:03 But you can do another podcast in 10 years, I promise.

Roel Wilbers

1:28:07 I will come back to you.

1:28:08 Thank you for the offer.

1:28:09 That makes full sense.

1:28:10 Right.

1:28:10 So and also in 10 years, the surgery we were talking about also might have increased.

1:28:15 Like what I hear from the experts is that also the results get better and better there because they know the complications.

1:28:21 So I mean, it's always still an option.

1:28:23 But the thing is you still have an option.

1:28:25 Because what you say makes a lot of sense when it's out, it's out.

1:28:28 And it's also not a guarantee for full recovery.

1:28:31 Around only 10 percent of people are fully problem free.

1:28:34 So what you mentioned, the device works for 10 to 12 years and then you have to replace it.

1:28:40 What's the procedure there?

Jeroen

1:28:42 Yeah, so they take it out and if you want, they will install a new one.

1:28:45 It's literally the same procedure apart from the fact that they first have to remove one device and then install the second one.

1:28:51 So it's subcutaneously.

1:28:52 So it's a very light procedure.

1:28:55 And of course, the wire, the electrode has been covered with scar tissue.

1:28:58 So maybe that's a little bit more difficult to get out, but I don't know.

1:29:02 But if the device functions normally, it will last 10 to 12 years.

1:29:06 It depends also a little bit on the battery life.

1:29:09 But with my current energy consumption, we should be fine.

1:29:12 And hopefully by then the insurance company will cover it.

1:29:15 Because it's quite silly that there is this sort of the chicken in the egg.

1:29:18 Because there is no medical research, it's not approved by the insurance company.

1:29:22 And because nobody does the procedure, there's no medical evidence that it actually gives results.

1:29:28 So everybody's talking in circles.

1:29:31 And I contacted the insurance company and they said, yeah, there's no medical evidence that this procedure is effective.

1:29:37 That's correct, because it's not performed.

1:29:39 So there's no way of proving that it's effective unless you do a trial, or use me as a trial.

1:29:45 Say I will pay 50% and I'll pay the 50% myself, but let's try and see what it does.

1:29:51 So I'm now in touch with a Dutch hospital.

1:29:54 I will show them the x-rays and I will tell them about the procedure.

1:29:57 Maybe the doctor, the surgeon, who is also specialized in pain treatment, but not in this specific area, maybe I can convince him to do a trial.

1:30:06 Because I was fortunate enough that I had money in the bank to afford this procedure, but you can buy a medium-sized car, which is now installed in my behind financially,

1:30:18 but not everybody has that option to pay for such a procedure yourself.

1:30:21 So I'm really hoping that through international research or cases like me, patients have contacted you because they are desperate, and they want to look for solutions, and I think this is a solution.

1:30:32 It's not a guarantee.

1:30:33 Every human body is different, but it definitely helped me.

1:30:37 It's a relatively new technique for pain treatment, but it's a stabilized technique for heart surgery.

1:30:44 It's literally the same device which is now being used for a constant pulse instead of a pulse when your heart rhythm is disturbed.

1:30:51 So the technology is already there, but it needs some elaboration in the way it's being handled for all kinds of different sorts of pain in different parts of the body.

1:31:00 It could very well be a reasonable solution.

Roel Wilbers

1:31:04 Very nice to hear that you actually are talking to doctors, actually, because for you, it's not in any value anymore because you already had the surgery, but future patients,

1:31:15 if you can pave the way for this trial or something, that would be really nice.

1:31:20 I think it's great that you're doing this work.

Jeroen

1:31:22 I'll give it my best shot, but first I have to convince a doctor and then convincing an insurance company is going to be the difficult one.

Roel Wilbers

1:31:29 I'm sure if anybody can do it, you can do it, Jeroen.

Jeroen

1:31:32 All right.

1:31:32 Yeah.

Roel Wilbers

1:31:33 Okay.

1:31:34 Super thanks for this update.

1:31:35 And I think it was very valuable.

1:31:37 So for the people, of course, for the listeners to hear how you experience it now.

1:31:41 And I'm really, really happy because again, seeing this from close by all you went through and working with you, and I'm really happy to hear that it actually got better.

1:31:50 So, and I hope the next little tweaks can get even more out of it.

Jeroen

1:31:54 Yeah.

1:31:54 Let's go for it.

1:31:55 Yeah.

Roel Wilbers

1:31:56 Jeroen, thanks so much for your contribution to this podcast and let's stay in touch.

Jeroen

1:32:01 Yeah.

1:32:01 You're more than welcome.

1:32:02 Good luck.

Roel Wilbers

1:32:03 Thank you very much.

1:32:04 So as always for you listeners, I hope this was valuable and that also this episode brought you new information, new insights.

1:32:12 And as always, there's a web page linked to this episode and you can find the link in the show notes with this episode.

1:32:19 And here you can see the x-rays of the device of the spinal cord stimulation.

1:32:25 I have a link to an online video with the surgeon that helped Jeroen.

1:32:29 And also there's the video of Jeroen's own tailbone pillow and how he developed that, which is really nice to see.

1:32:36 Jeroen also offered that I share his LinkedIn information.

1:32:40 So if you want to directly get in touch with Jeroen and have any questions for him, the way to do it also is there on this web page.

1:32:48 So thanks a lot for listening.

1:32:50 If you have any comments, please let me know.

1:32:53 I also love to hear from you if this podcast benefits you wherever you are in the world.

1:32:58 I'm very happy to hear the comments, the feedback, maybe the questions that you might have.

1:33:02 And you can always drop me an email.

1:33:05 And also on this same web page, you can see how.

1:33:08 For now, I wish you a very nice rest of your day wherever you are, and hopefully until the next episodes, and then we are back with a German doctor,

1:33:17 and again, a real specialist, of course, on Tailbone Pain.

1:33:20 Thank you very much, and until next time.

1:33:24 Thanks for tuning in.

1:33:25 If you're looking for more high quality info, tips, or exercises, you can find me at tailbonetherapist.com.