AcroTales
AcroTales
Episode 20 - Thomas
In Episode 20 of AcroTales we speak to Thomas from Switzerland. Thomas was diagnosed only a few months go and recently had surgery, so this is clearly very new and raw for him. He talks about the symptoms, diagnosis, his girlfriends desire to know everything about Acromegaly and how his approach was not quite the same.
Hello, and welcome to AcroTales, a regular podcast that explores the exciting and fascinating world of Acromegaly. My name's Dan Jeffries, and I was diagnosed with Acromegaly back in 2007. And in each episode of AcroTales, I'll be talking to fellow acromegalics from around the world about their journey with this unique condition. It's episode 20, and I am really pleased to welcome Thomas from Switzerland. Thomas is 37 and was diagnosed with Acromegaly only a few months ago in December 2023 and has recently undergone surgery. Thomas, welcome to Acrotales.
SPEAKER_00:Thank you, Death.
SPEAKER_01:So this is all quite raw for you if you've only just been diagnosed less than six months ago and had the surgery in that period as well. So perhaps you could talk us through how you got diagnosed and what were the signs leading up to that.
SPEAKER_00:Right. So back in November, um we were going on vacation with my partner over to Mexico for a couple of weeks. And just before the flight, the night before, I had a massive headache with like nausea, and I ended up puking, and it was just like stabbing in the eye, in the left eye. Okay. Um was really intense. I never felt pain like that my whole life. Um, but I had something to meet a few years back. Um and it just was worse than the last time, and the time before, and the time before. Uh, but every time I went to see a doctor for that, it said possibly it's stress because uh I've always been prone to anxiety, um, panic attack, this kind of thing. So yeah, stress always played a big part of my life. So yeah, the doctors always kind of dismissed it because it was probably related to stress. So I didn't think anything of it. Um the next day I woke up and we had to take that flight. So obviously we went there. Um and on the way there, I realized that I could not read anymore. Uh I couldn't see the words. It was very weird. I just could not see the words, just the the style of the word, but not the letters that were coming after. Um, I would start reading one word and realized there's a whole sentence after that. Um I thought, okay, maybe we do these vacations and let's take that trip. Um when we came back, it didn't get any better. Uh I went back to work and I realized that I just read my emails at all, so I thought, okay, maybe it's time to go see a doctor. So um I went to the ophthalmologist um just to get my eyes checked and maybe near glasses or something. Um and yeah. Long story short, I ended up uh 15 hours later uh diagnosed with uh brain tumor and I had no idea about a comicary or anything. Um the ophthalmologist made some tests, uh sent me to the made a bunch of tests, and at the end of the day um told me to that I needed to stay there. It was a couple of days before Christmas, and I thought I would like to go home for Christmas. I'd rather not going on, it's probably nothing, I just want new glasses. Um so yeah, without knowing anything at all. I suspect that they knew there was something. Um so they convinced me uh on that night to make a city scan, uh. Which I did, and it was late at night, only the radiologist was left, and so she came back with the results. Um, sat down next to me and told me, I'm afraid I have bad news for you. Uh there's something in your brain that's quite big, it shouldn't be there, it needs to be taken care of immediately. So that was quite a shock. I was like, oh, okay.
SPEAKER_01:That's I guess that's can I can I ask, did she say did she say it was something in your brain or something in your peturatory gland?
SPEAKER_00:She said brain, yeah.
SPEAKER_01:Yeah, because I think there's quite a difference, isn't there? If she'd said pituitary gland, would that have been less stressful for you?
SPEAKER_00:Probably not, because I had no idea what the peturatory gland. Okay, okay. So it would have been probably about the same. So yeah, I just thought, okay, that that's the end, and that's it. Um she asked that we that I stand and got an MLI the next day and see how we proceed with the rest. And I convinced her that uh it was probably here for a long time because I had the symptoms months ago, and I had the same symptoms years ago, but the headaches and the vision loss. Um so I convinced her that I would go home for Christmas, uh, spend time with my loved ones, and then go through whatever was coming for after that. Um so the deal was that I would get an MI on the 27th of December um to get that checked. So it was quite a shock. My partner and I were together um at the hospital. Um, obviously, we're very emotional. Um we got home and I just went to bed. I was exhausted. Um, I actually slept like a baby that night.
SPEAKER_01:And the next day, did you think because you finally had an answer as to why you were feeling so bad?
SPEAKER_00:I I don't I don't know. It was just such a long day for me, and I really wasn't expecting that. I just wanted new glasses. So yeah, I wanted new glasses, and I came home with a brain tumor. So I was just oh, okay. So, but no, I I slept like a baby, and yeah. Well, when uh when I woke up in the morning, my partner woke me up actually, and she was like, I have a great news for you. Um my sister and I we found what we what you have. And like, okay. I really thought that they were in complete denial, and you know, they were trying to find the the best outcome possible. Um, but yeah, the more they started talking to me about it, and the more it made sense. I was like, okay, yeah, I do think all the time.
SPEAKER_01:So so in the hospital they didn't mention acromegaly, or they had mentioned acronymally, they did not. So they just said you have a tumor in your brain, that's it, but didn't give you the name of the condition.
SPEAKER_00:No.
SPEAKER_01:That's really bad.
SPEAKER_00:Yeah, I mean, it was the radiologist, it was very late at night. Uh no neurologists were left in the hospital. So I I I guess that's why, because um during that day at the hospital, at some point we saw neurologists, and they did ask me if I felt like my hand grew, my hands grew in the last few years, my feet. They asked me to show them. And I told them, yeah, in the last uh four years, like in like uh three shoe sizes. Um so again, and I could tell they were like nodding at each other, like, okay, we know what that is. So but I didn't really pay attention to it on that day, just really the next day when my partner when your sisters had and done some research for you or so yeah, then I was like, okay, does tick on the boxes that might be as bad as as I thought it was, and um yeah, we got the MI on the 27th, and uh shortly after that um an appointment with the neurosurgeon called him that it was uh a chromicity, got a blood test, uh really elevated IGF one and uh yeah, then that's how it started.
SPEAKER_01:And did they tell you how big the tumour was?
SPEAKER_00:It was 4.8 centimeter.
SPEAKER_01:Okay, so quite a big one.
SPEAKER_00:Yeah.
SPEAKER_01:So definitely consider the macro. So um I mean, you've obviously expressed how uh distressing it was to find out that news and uh uh and also for your family. But did you did you have a sense that in the years building up to this, not just the headaches that you had, but did you have a sense that something wasn't right? Um it's hard to know because you're growing up, you know, in your 20s, all kind of different things going on. But did you notice, for example, a change in um facial appearance, or did other people comment that you looked different or anything like that?
SPEAKER_00:Yes, definitely. Um, it started actually in my early 20s. I started getting that uh underbite, um and you just kept getting worse and worse. And I went to see the dentist and uh surgeons a few times, considered getting a surgery, uh, which never went with it. Um every time I talked about it with my GP um or my GPs, because I was in France at the time and um we're supposed to have one family doctor, um, but it's very difficult to actually file one. Uh so because I kept moving around in France, I didn't have you not seeing the same person. Yeah. So it was difficult to see always the same one. And um, yeah, they were pretty dismissive about it, saying, like, probably nothing. Um with the hair.
SPEAKER_01:I I I I I really feel that dentists, and I've said this many times before, but I think dentists are the missing link between early diagnosis, they are the ones that see if you know if someone's jaw in their 20s is changing shape or they can't bite down on their back teeth anymore, something is clearly wrong. It's not a normal progression, and it's a common feature in acromegalics that the jaw and the teeth is something that happens first, but dentists just they just don't seem to be aware of it.
SPEAKER_00:Yeah, no, no, I'm definitely not. Uh from what I saw. Um then, yeah, yeah, my parents coming over uh for vacation and telling me, wow, your hands grew. Like you need to realize your hands grew. And yeah, I was like, Yeah, I know, I cannot put my gloves on anymore. Um, I need to change shoe sizes every year. Um, in my early 20s, uh 30s. So yeah, that's there was all of these, but I didn't think anything of it, and I didn't think that all of these were actually related. Um why would you? Yeah, exactly.
SPEAKER_01:I think we've all gone through that. You know, at no point do we go, well, I've got this and this is happening. I must have a tumor in my pituitary gland. I mean, it it you know, unless you're a medic, this isn't it never going to add up. And even then the medics don't get it right. So why would we get it?
SPEAKER_00:And yeah, I had other symptoms like the um those stripes on the skull, like uh um onulation of the of the scalp. Um yeah, I went to the doctor and in front of me looking on the internet, it was like, that's probably nothing. There's only rare disease that can cause this thing, so probably not that because it's rare.
SPEAKER_01:Um so it's probably not that because it's rare. Exactly.
SPEAKER_00:That's just ridiculous. I actually called my uh last GP after I got diagnosed to tell him that I had a chromagaly, so that he would keep an eye out if he sees the same symptoms again, that it might be that, so better to investigate. And he actually told me that he had one patient that had it uh about 35 years ago. Um so to tell me how rare it is, so that that's why he didn't think anything around.
SPEAKER_01:So you've got the diagnosis around about Christmas time, which is obviously not ideal, and then you've got to face the new year with the prospect of surgery. So what was the what was the surgical plan? When did you go in and have your treatment?
SPEAKER_00:So uh the surgery was planned pretty fast as soon as we saw the neurosurgeon. A couple of days later, we said that it would probably be about four to eight weeks before the surgery, and it actually got planned for the 26th of January. Uh very good. So yeah, it was very fast, and the whole team was very confident, very comforting, uh, very available as well uh for any questions we might have, and they were just really good and really making us feel uh comfortable about the outcome and uh yeah, just very positive about it. And uh so yeah, we spent the whole month making uh researches all over the internet, obviously trying to see what this is all about, and and uh yeah, that was uh the wait, although it was only one month, like forever, yeah. Yeah, felt like we're in a time capsule and just like stuck in there for years.
SPEAKER_01:Yeah, no, I totally understand that. The wait for surgery, and and and often surgery can then be postponed, and uh you know that's even worse. Did you join any communities? I'm not promoting this. Did you listen to acro tales? Did you what did you do to kind of um you know raise your awareness of what's going on? I I, for example, prior to my surgery, I was watching surgery videos on YouTube. Now I know a lot of people wouldn't necessarily want to do that, but I was intrigued to see what was going to happen.
SPEAKER_00:So I actually was kind of like, I don't know, I think it's my way to cope uh with it into like defense mechanism. I was just like, I don't want to hear anything about it, I don't want to know anything about it. So I was just like focusing on anything else. And then um, my partner, on the other hand, will needed to know everything about it. So she wouldn't got a skull, like a plastic skull, to show me exactly where it was, what needed to be done, you start thinking she by the end of it, she could have done the surgery herself. Like so manageable now, but it all and uh yeah, I had no clue about anything. Like uh even like a few days before the surgery, I wouldn't have been able to tell where the pituitary glare was. Um yet I guess my way of coping with it was really to just like they know what they're doing, I don't want to hear anything, I don't want to start reading because I still started reading something in the internet. You always also hear about the worst cases, you know. I didn't know about the communities back then, uh the support groups. Uh so it was just like reading random articles on the internet and really scary ones. So I was like, okay, it's not very reassuring, and it doesn't reflect actually the reality of it at all.
SPEAKER_01:Yeah, no, I I would agree with that. The internet can be a scary place, it's often a scary place to try and get a diagnosis, which is which is not a good idea. But okay, so you had the surgery, and how successful was the surgery? Did they manage to grab all of the tumor or was there some leftover?
SPEAKER_00:It was very successful, they were very happy with the outcome. Um but yeah, they did. There was some leftover um around the cow that they didn't want to touch too much. Um, they had to uh top the pituitary gland a bit too much, so this one is uh non-functioning anymore.
SPEAKER_01:Um your pituitary gland is non-functioning.
SPEAKER_00:Yes. Um so that was one of the complications, but it was directly during the surgery. Um but um yeah, it went pretty well. Um the medical team was really good, the nurses, everyone stayed in the ICU for about two or three days. It was a fairly long surgery. They took their time, they said, was about seven hours. That is long. Yeah, so I actually do not remember anything at all on the first few days after the surgery because I guess I was pretty drugged up. Um and uh yeah, I got out the ICU um and was supposed to get out, I guess, about a week after the surgery. Uh, but in the end, the day before to leave, I started having um CSF leak. Uh so yeah, that's uh that was one of the complications, like massive headache, and like couldn't couldn't look at the light anymore. I had to wear sunglasses. Um lie down. It was it was very painful. Um, so yeah, it lasted the whole night, and then the next morning I called the doctor, told them that I think there's something wrong. The whole pillow was covered in uh in liquid. Oh my god. Um so yeah, they tested it. Obviously, it was that uh then they put me on a drain um for about four days.
SPEAKER_01:Was that a lumber punch? Did they do a lumber drain? Yeah, that's lovely, isn't it, when they put that in?
SPEAKER_00:Yeah, it is lovely. Uh I wish I would have been sleeping for that one. Um they actually tried to put what in uh during the surgery, the first surgery. Um but they said probably because of the acronym getting it was very difficult to find the right spot and go between the bones. Um so the second time when they did it after the the leak, uh they actually took me to radiology to get an imaging of exactly where they needed to go. Um so yeah, it's one of the joys of Alcomegady as well. Um yeah, yes.
SPEAKER_01:So yeah, okay, so quite a complication with the CSF leak. But did the drain help? Did it cure it?
SPEAKER_00:Definitely. I I never had a leak after that. So just four days I went home after that, and yeah, I took it easy for the first couple of weeks after the I got home. And the way they were seeing it, I I pretty much discharged myself from the hospital because I just really couldn't take it anymore. I couldn't sleep, it was very loud, very noisy.
SPEAKER_02:Yeah.
SPEAKER_00:So I just really needed some rest. I felt that I needed some rest, so I kind of discharged myself, went home, and uh yeah, they were looking at me like we're gonna see you again in a few days because that leak's gonna come back. Like the punching up in the not gonna solve that. Uh but no, I've tried pretty surprised with it. Uh it didn't.
SPEAKER_01:No, you you recovered. Yeah. Wow. And that was it, and you didn't go back. So you just you just stayed at home and recovered. Yeah. And did you start to notice changes?
SPEAKER_00:Yeah, definitely. Within the first few days already, all the soft tissues like getting less swollen. Uh, I lost a lot of uh water through sweat as well. And I started really feeling like uh the balls on my eyebrows or under my eyebrows and the cheekbones getting uh watched off like smaller and the nose, the it's very weird, isn't it? Yeah, yeah, yeah, definitely. I lost the water.
SPEAKER_01:You think you've had you've had years, you've had years of that slow build-up, and then once this little lump has gone, it it within a week or two weeks, you start to really feel a rapid change in your appearance. And it's the strangest thing. Sorry, you I cut you off. What were you saying?
SPEAKER_00:No, so yeah, the the hands, the feet as well. Uh I lost a couple of shoe sizes right after the surgery. So yeah, that was it felt nice. And uh my parents, so obviously know me for a long time, were telling me that yeah, I I look like I did like 10, 15 years ago. So amazing. Yeah.
SPEAKER_01:And did your did your visual issues sort themselves out?
SPEAKER_00:Definitely. Uh I woke up and I could see. He was I could read. It was uh definitely impressive. They actually didn't think he would recover uh that much. Uh they told me that because the tumor was pressing on the optic nerve for so long, probably there was some damages done. Um but yeah, I recovered about uh 90% of uh the peripheral vision field.
SPEAKER_01:That's fantastic. Well done. That's uh I lost some peripheral vision and after my surgery, unfortunately, which is was frustrating. So yeah, I think keeping hold of your vision is is really, really important. Um and now um, you know, we're in May 2024. What's the situation? Are you on medication to support things? Where where are you at?
SPEAKER_00:Right, so um yeah, pretty much when I got home, uh I got the technologists doing a bunch of route tests, and um, so I had also diabetes insipidus, uh, which are not gone, so I'm still taking um mini ring for them. So something I take at night, so I uh I don't wake up super thirsty and I don't have to go to the toilet every 10 minutes at night. Um I also taking um idol cortisol for the cortisol level that's very very low.
SPEAKER_02:Right.
SPEAKER_00:Um and I'm taking as well um a t ops or etiox for the um thyroid with the T3 and T4.
SPEAKER_01:Okay. But you're finding it's manageable, it's not knocking you about too much.
SPEAKER_00:It's it's um it's a bit tiring as well. Uh the there's one side of it is that um I'm actually waiting for the approval, and so that that's the Swiss system. We have a private insured for um all the health insurance are actually private and mandatory. Um but we're waiting uh the approval for a few treatments, including the um put it somewhere, hoyomon uh for the testosterone. Um so it it's below bar, it's at zero, it's not even detectable in the blood anymore, the testosterone. So yeah, this is uh very tiring. Uh so waiting for the approval for that one.
SPEAKER_01:So on the approval, is that for injections or the gel?
SPEAKER_00:One injection a week.
SPEAKER_01:One a week, okay. Okay.
SPEAKER_00:And we're also waiting for the approval uh for uh the signal. And in the meantime, I'm gonna get started with oak tilotide.
SPEAKER_01:Okay, okay.
SPEAKER_00:Um, so I have a bit of a menu. Yeah, I had the uh post of MI about uh two weeks ago. Um so to really see uh what's left and how big it is, um, and where it is. So yeah, that's the part that they left around the couch in. And uh yeah, it's about 1.2 centimeter. And so yeah, they decided to go through with the medication um and see how it works. So can't wait to get started.
SPEAKER_01:No talk of radiotherapy yet then.
SPEAKER_00:That's one of the options. Um but they're confident that with the the Cine4 we can um at least stabilize the the size and uh it's in a place where it's not debugging anything, it's not touching the optic nerves or not pushing on anything.
SPEAKER_01:So well, good luck with that. I mean, you know, this sounds like it's been a real whirlwind for you in the last six months and a huge change to life, and you have to suddenly adapt and you know, deal with medications you've never heard of in with a part of your body you didn't know really existed, you know, it's it's it's very strange and it's it's a lot to take on board, and it's a a lot for family and friends to take on board as well. So um with that consideration in mind, you uh you know, this is all very fresh for you. If if someone was going to say to you now, I've just been diagnosed with Akron regularly, you know, what would be your advice to them?
SPEAKER_00:Um maybe not to go directly over Google. Um, but to try and find those support groups, there's there's a lot of different support groups, uh, pretty much for every country, there's general ones as well. Uh Petri TV group. Um this is where you can ask the questions, this is where you can get your science. There's a lot of patients. I I feel it it was more for me reassuring to talk to other patients rather than um medical professionals about it.
SPEAKER_01:Um, because they're the ones who've lived through it.
SPEAKER_00:Exactly. So yeah, seeing uh those journeys uh really helped. So that's what I would say. Uh get in touch with other patients.
SPEAKER_01:And and over time, I think you know, as you live with it more, as you grow to get get to understand it more, as the years pass, you'll become one of those knowledge points that those that are diagnosed with will come to you. And you know, it goes full cycle, and it's suddenly you become an advocate, and and you know, acromaggy is going to be part of your life, whether you're in remission or not. And I think it's important to pass that knowledge on and support other people as they supported you when you were diagnosed.
SPEAKER_00:That that's one thing that I really found amazing is that on the support groups, there's a lot of people who are in full remission and they connect every day to talk to other people. Accromagade should not be part of their lives anymore, but it is, and yeah, they're helping other people out. And I find this amazing.
SPEAKER_01:I think maybe part of the reason for that is that whilst you might be in remission and there's no, you know, bad sales up there, Acromagade still has an impact and a lasting impact. It might be the way you look, it could be your teeth, it could be your joints, could be your vision. So I think there's always a reminder that you had it, you know, on a day-to-day basis. And and and that, and we all know what we've been through with it, and uh and we want to help others. I think it's a balance though. I think you should never do it at the cost of your own um living. You know, you should never be an advocate 100% of the time. You need to go out and live and enjoy life and and celebrate that you're through the worst of this situation, but it's it's obviously very rewarding and uh and um well, rewarding is a good enough word to uh to you know give that information back and that support back. So yeah, well, you've been on quite a journey, and um I I sense there's a little bit left to go, but uh it's been a really, really fascinating story, and um I'm I'm really grateful to you for telling it. I guess when it's so raw, yeah, most people that tell their story, it's it happened to them four or five years ago or maybe eighteen months ago, you know, this is really raw.
SPEAKER_00:Yeah, yeah, it is. It's very fresh. I mean I'm still trying to get my mind around like how we got there. Sometimes I was like, oh, okay, I'm it's not it's not a bad dream. I'm still there. Um yeah, there's also one thing um I wanted to mention is prior to the diagnostic and uh maybe how sometimes I'm thinking they would have found out like 20 years ago. What what would have been the difference? What difference would it make? And obviously it would make a difference, but I'm I'm really happy in the place I am right now, so I wouldn't change anything. Uh that's what I hear from most patients as well. Um but yeah, that there's um the support groups are really good for patients, um, but they're not for medical professionals to get their knowledge, and there's a lot of awareness, I think, to raise um more on the medical side than for the patients. The patients already know the adoption they're getting. Um it's before that. And I think the doctors, you need to find a way to, it's impossible for them to know all the rail, this is his butt. Um I just went the other day on the uh Chat GPT, this bolt that you can talk to and ask questions. And I told him, uh, look, I'm uh I'm a doctor. I have a patient that I think is hypochondriac. Um here are the symptoms. He has like a swollen hands, uh carpal tumor syndrome, um, he has a massive headache, he complains about his vision, he has those like undulation on the skull, and grew a few shoe sizes in the last few years. And I think that's why I stopped. I just said that. And I asked him um, what do you think it can be? And the first thing that came up was a commagetic. The only thing that actually came up was a commaget is that I think well technology wise, uh, we're getting to a place where doctors might actually need a little bit of help. Um, because they cannot just contain all that knowledge in their brain.
SPEAKER_01:But yeah, that's no, I think that's fascinating, and I think AI is gonna play more and more of a role. And um Uh and genetics as well. So yeah, I think that's really, really valid point. You know, I I'm a trustee for Medics for Rare Diseases, which is a charity that aims to help m those that work in the medical field to understand and appreciate rare diseases more. And um, you know, there are over 7,000 rare diseases, and you're not going to expect a doctor to know all of them. But as you said earlier, the idea of, oh, well, it's rare, so you can't have it is just insane when one in 17 people have a rare condition. So, you know, uh doctors need to get better at thinking outside the box. And it's the old catchphrase, if you hear hooves, don't assume it's a horse, it could be a zebra, because you know, why not? So, and maybe in time, Thomas, you know, as you get better, this could be become a bit of a cause for you, and how you want to raise awareness for medics, you know, in Switzerland or wherever it might be, and um join the rest of us in trying to really get the diagnosis uh to be as quick as possible. That's that's the challenge. Look, thank you so much. Uh it's been a fascinating interview, and uh, I'm very, very grateful to you taking your time out here today. So thank you very much, Thomas.
SPEAKER_00:Thank you then.
SPEAKER_01:Um if you found Thomas' story interesting and you want to hear other Acrotales, head over to acrotales.com where you can find the ever-expanding library of interviews, up to 20 now, which I'm so proud of. And of course, you can subscribe to the podcast to receive the latest updates. You can do that on iTunes or Spotify or whatever your favorite podcast app is. So thank you so much again to Thomas. Thank you to you for listening or watching, and we'll see you next time for another Acro Tale.