AcroTales
AcroTales
Episode 15 - Caroline
In Episode 15 of AcroTales we speak to Caroline from Bedford in the UK. Caroline was diagnosed with Acromegaly at the extremely young age of 13 and her fascinating tale explores diagnosis, the impact on family and her formative years, how it's helped shape her life and the amazing opportunities she now has to raise awareness.
Hello and welcome to Acrotales, a podcast that explores the fascinating world of acromegaly. Acromegaly is a rare condition caused by a benign tumour in the pituitary gland, causing an excessive release of growth hormones. My name's Dan Jeffries, and I was diagnosed with Acromegaly 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 15, and I am really pleased to welcome Caroline from Bedford in the UK. Caroline is 27 and was diagnosed with Acromegaly in 2008 when she was just 13. Caroline, welcome to AcroTales.
SPEAKER_00:Hello, thank you for having me.
SPEAKER_01:That's my pleasure. So 13, that's very young. Most people uh, you know, early diagnosis of Acromegaly is probably in the in the 20s. Perhaps you could tell us how you came about to how you found out that you have this unique condition.
SPEAKER_00:Yeah, no, sure. Uh so it was about when I was nine or ten, um, I started all of a sudden just growing uh in all areas, growing big, gaining weight, uh, for no reason whatsoever. I wasn't eating, I wasn't, you know, snacking or anything. And my mum would take me to the doctors many occasions, and they were just telling me to stop eating. Um very, very helpful. And there was this one doctor who told me to stop eating potatoes, and I remember it to this day because I was I kept trying to say I wasn't eating potatoes, but they just kept telling me to stop eating potatoes. Um so we went to see a dietitian, they gave me all these things, and I was 10 years old, so you could imagine the effect it had on me being 10 years old and being told, you know, you're overweight, do something about it. Um, I had to go to Weight Watchers, and I just I wasn't getting any better, and I was getting really poorly, I was getting really tired. Um, my feet were getting to about a size nine, and at 10 years old, trying to find size nine shoes was very difficult. Um, so that went on for years, and my face was starting to swell, and my eyes kind of sunk into my face, and my mum knew that something was not right at all. Um, and it wasn't actually until I was at school I started a new school, and it was the school nurse that rang my mum and said, something is not right. Um, you need to really put your foot down and get seen by someone more professional. Um, and that's when we went back to the doctors. This must have been, you know, a hundredth, hundredth and tenth time by now. Um, and that's when we got sent to an endocrinologist um in Harpenden. And he was lovely, he was absolutely amazing. And he was like, Oh, it's probably nothing, but let's just do some tests. And that's when it all kind of came back positive, and you know, everything was like looking towards a tumour, and he was like, just for you know, safe, safe things, let's just do a scan on your head. I'm sure it's nothing. Um, and that's when the tumour on the maturity gland came up, and he was like, Oh, oh dear, whoops. So, yeah, and then from there it kind of all went very quickly, and that was in February, and then in July, they did another scan and it had grew quite significantly, and he was like, We need to get it removed.
SPEAKER_01:Um so, so just to take a step back, it must have been quite a relief, I suppose, to finally find out what was wrong with you. I think everyone that has acromegaly has that allelujah moment, but for a 13-year-old, it must be particularly scary to be told it's a tumour. Did they tell you it was specifically a paturity gland tumour, or did they tell you it was a brain tumour? Because there's quite a lot of discussion about that at the moment.
SPEAKER_00:So I I can't really remember much because being 13, I was just kind of like doo doo doo. Um but I believe that they told my parents it was a brain tumour, and um, but then they said it was it was on the paturity gland in the brain. So I think they just put kind of two and two together and then we're like, okay, that's a brain tumor. But the consultant and and sorry, the consultant that we saw was very reassuring that you know it's a it's fine, don't worry. Um we'll sort it all out.
SPEAKER_01:So okay. And did they tell you how big it was?
SPEAKER_00:Um I honestly can't remember, but I know it was I no, I I honestly can't remember. I know it was it was big enough. Um yeah, sure.
SPEAKER_01:I mean there's the microadenomas and the macroadenomas. The micros are under two centimeters, I think. Yeah, so I think the macros are bigger than that.
SPEAKER_00:Yeah, so I think it was about 1.1 when it first was found, and then it had grew to about 1.7 um between February and July, and that's when they were like it needs to be removed.
SPEAKER_01:So the next phase then, surgery, I presume. Um, and they and they obviously got you in quite quickly due to the the rate of growth of the tumour.
SPEAKER_00:Yes, so there was a bit of uh delay because of my age, they was they weren't sure whether to put me in a child's hospital or in an adult hospital. Um so I was literally just on the verge. So my surgery was in October, um, and it was in London, and because I was so young, they were like, we just don't know where to put you. Sorry. So it's fine. Um so I was put on a child ward in the end. I was like the oldest child there, and okay, yeah, it was it was very scary. It was my I had operations before, but you know, it was like grommets and things like that. So this was scary. This was very scary for a 13-year-old.
SPEAKER_01:Yes, of course.
SPEAKER_00:Going in.
SPEAKER_01:And and so they've prepared you for the idea of transphernoidal surgery, i.e. going up the nose. I'm presuming that was their approach.
SPEAKER_00:Yes, yeah.
SPEAKER_01:Okay. And so they undertook that surgery when in 2008, yeah.
SPEAKER_00:October 2008.
SPEAKER_01:Okay. And how was that? I mean, you know, nobody likes surgery, but often what happens is when you come out of the surgery, people feel almost an immediate change or uh, you know, a release of something. Did you have that?
SPEAKER_00:No, I felt awful. Um, I'm not gonna lie. Um, I felt I felt terrible. Um first of all, I I needed to go to the toilet really badly. Um that's when they realized that I had the diabetes insipidus. Um and I had I had a horrible, horrible headache straight away. So it wasn't kind of until a couple of hours later that I started to feel better. Okay. Um, but straight away I was just like, oh, I feel groggy, I did not feel good. But yeah, I would say a couple of hours later, I started to feel a bit more normal. For sure.
SPEAKER_01:Yeah, I mean that's the often the effect of the morphine and the and the um the what's the word I'm uh anesthesia and and all of that kind of stuff. I think it's natural to feel terrible after a after major surgery like that, but I think two hours, three hours later is a fantastic result. And did they did they keep you in for a while? Did you have anything like um uh spinal fluid leak, a CSF leak, or or were you lucky to avoid that?
SPEAKER_00:Well, um so about four hours after the surgery, I sneezed. Um so uh that caused my um gap to reopen, and that's when I had my leak, but they didn't realise for about another two days.
SPEAKER_01:So because all the wadding was up the nose?
SPEAKER_00:No, there was nothing, they didn't they didn't block it with anything, they didn't pad it at all. So I sneezed and it just reopened completely, and um they made me put my head forward and it was just coming out, and they thought I had a cold. And again, my mum was like, That is not a cold.
SPEAKER_01:Why would they should know that?
SPEAKER_00:They were like, Why would she have a cold? Um, so it was about another two days until they realized, yeah, that's not right, and I was going in and out of consciousness. Um so on the 10th of October, I had to go back down for more surgery. Um, so I was in for about eight days, which um our stories are somewhat similar.
SPEAKER_01:I had a CSF leak, uh, but they sent me home with it. Uh this was in 2007, so not much different uh sort of time period from yours. And uh mine got infected uh with meningitis. So I I had to go back in and I was put on a lumber drain for two weeks. It was horrendous. But I think medical knowledge now, any sign of a CSF leak, they will jump on that straight away. They would definitely not send you home, or at least you you would hope they wouldn't. Um, yeah, well, that's that's pretty frightening. So so when you got home then, you know, did you start to see the sort of changes you know brought about by the removal of the tumor?
SPEAKER_00:Completely within the year. Um, my feet had shrunk, my hands had shrunk, I looked completely different, and um I really started to feel more confident in myself, and you know, I was I was loving, I was loving my life. I felt like I had got my childhood back. Um I felt really, really good about myself. I had headaches um and I was restricted from doing things, but you know, I was just like, I'm so happy to be, you know, in the place that I am right now.
SPEAKER_01:Um and I bet for your family too. I mean, you know, this is always such an ordeal for the family, isn't it? Especially when, you know, if it's your your young child going through something so drastic.
SPEAKER_00:Oh, completely, yeah. Um, you know, to to see that, I couldn't imagine at all what it must have been for them. Um, so I guess for them to see me, you know, thriving from kind of 14 onwards must have been great for them.
SPEAKER_01:Okay. And so were you was there any residual tumour left over? Did you require any medication or did they manage to zap the whole thing?
SPEAKER_00:So they thought they had removed all of it. Um they did say there was a bit left, but they they weren't 100% sure. Um, and then when I was, I think about 18 or 19, I got an osteoid osteoma. So that's a it's a tumour in a bone. So it's a bone tumour. Oh wow. And they believed that is because of the residue um cells, so they think it had kind of floated its way into a bone. Um they they were going to do some tests, but they never never really went any further with it. So I had to have that removed as well.
SPEAKER_01:My God. What can I ask which bone?
SPEAKER_00:Uh that was in my thigh bone.
SPEAKER_01:Wow, okay. So how has that how has that left you then? Uh I mean, it it it has it made you incapacitated in any way, or can you still function?
SPEAKER_00:I can still function, but it took about two years to diagnose. Um, I was in absolute agony, I couldn't really walk, couldn't do anything, and it was it was tiny, it was absolutely tiny. Um and it was it was scary because I thought I was kind of making it up at one point because nothing could be seen on any x-rays or anything like that. And when they finally found it, they were like, it makes sense, you had some residue tumour, it must have somehow, somehow got there, but or you're just really unlucky. We don't know.
SPEAKER_01:It's amazing, isn't it, how uh you know, acromegaly, it's sort of you you always live with it for the rest of your life to some extent. It's even when they've done the surgery and they've gotten everything out, there's always these potential side effects, or not side effects, but complications that can arise. And I imagine with the residual bit, I mean you're lucky in many ways that you didn't have to have uh you know the injections or or radiation therapy or anything like that. But obviously that slither decided to work its magic and and uh and you know bury itself somewhere else, and that's definitely that's pretty unpleasant for you. So was that it? Emily, was there anything else?
SPEAKER_00:Um so no, um, so when I was 22, um so five years ago I started getting really bad headaches, um, like worse. I get headaches pretty much every day, but these were completely different sorts of headaches. Um and I went back to I was seeing a neurologist at this time, and they went, you know, these aren't the sort of headaches really that we've seen before. Go back to your endocrinologist. Um, so I did, they did tests, they did scans, and my tumour had come back. And I was like, wonderful, that's what I like to hear. Um, but also, you know, like you said at the beginning, it was a relief because I was like, this makes so much sense as to why I had not been feeling well at all. Um, I'm glad that you know there's something there rather than me having to live with this. Um that was in March, um, and I had just started seeing someone at the time, and I was like, just to let you know, this is what's happening. Um, and luckily he he wanted to stay, so thank you for that.
SPEAKER_01:Um so yeah, I mean it's you know, it is a just on a tangent, it is uh um, you know, something to consider, isn't it, with Palmers? That it's they have to live through it with you and they have to be supportive and understand. Um, but it's not a cancer, it's not leukemia, it's you know, it's not terminal, but uh but in many ways it's gonna affect your your mood swings, your energy, you know, all of those things.
SPEAKER_00:Yeah, completely, completely. Um, yeah, I told him from day one, you know, I just I can't make future plans, like I can't say let's make plans this weekend because I don't know how I'm gonna be feeling when I wake up. I might have a horrendous headache or I might be exhausted, I just don't know. I'm sorry, kind of thing.
SPEAKER_01:So yeah. Okay. So so you went back in and did they just do the same procedure again?
SPEAKER_00:Yeah, so they did the same procedure, and again it was in London. Um, it went it went really well. So I only stayed in hospital for about three or four days. Um and then a bit like you, this I went home two days later, I was straight back in with meningitis. No way. Oh my god. I was I was in absolute agony. I don't know if you if you had really a really bad headache.
SPEAKER_01:Oh surrendered. I I couldn't see. I mean, the lights were so blinding. I I had to shield my vision, the most banging headache. And I think my my sister who was looking after it at the time said she could see my head throbbing. You know, it was that bad.
SPEAKER_00:I had never experienced anything like it ever. I couldn't, I couldn't get up, I had to lie straight. It was the only position I was slightly comfortable in.
SPEAKER_01:So oh did you get an ambulance back to the hospital?
SPEAKER_00:My mum took me back in and I was lying on the back seat the whole way there because I just I couldn't I couldn't move.
SPEAKER_01:Um so I was in And did they get did they put you on a lumber drainer?
SPEAKER_00:So they they gave me one, um, but it was it was too painful. I was I couldn't do it. Okay. Um so they were giving me loads of medications and everything, and oh, even just thinking about it makes me shiver. Horrible.
SPEAKER_01:And so did they have to go back up to the surgery site and and seal it all up again?
SPEAKER_00:Luckily, no, no, they just did loads of scans. Um, they put me on like drips and everything, but luckily they didn't have to do anything else. I was just in hospital for seven days, um, and then I got sent back home and touch with nothing bad has happened since.
SPEAKER_01:Yeah, I mean, my mine's it's amazing how the similarity that's I've not really met any I don't think I've come across anyone that's had meningitis before. Um, but yeah, they had to go take a skin graft off my thigh or a fat graft and sort of go back up to the surgery site and and sort of see all the area. But once they'd done it, you know, it was like it was like life suddenly flowed back again. It was it was amazing. Did you have any impact on your vision? Um did you any any optic nerve or visual loss?
SPEAKER_00:Only this so after the first after the second surgery the first time, um I I couldn't see, like it was really blurry, so I had to kind of I had to do like eye muscle exercises for a couple of weeks, but everything has come back to how much put okay. But during kind of um, I would say from like 20 to probably like 26, my vision has just plummeted completely.
SPEAKER_01:Really?
SPEAKER_00:Um really bad. So I don't know if that's just me or if it is because of of the of the tumour at the time.
SPEAKER_01:Yeah, can I ask can I ask how bad?
SPEAKER_00:Um, so I'm oh god, I've got to try and remember this. I mean, it might not be that bad, but for me it's pretty bad. Um so I'm a negative five point seven five um and then negative five point five. So that's great. Yeah, and last year I was only about a negative three. So okay.
SPEAKER_01:Yeah, that's no, that's that's quite a drop.
SPEAKER_00:Yeah.
SPEAKER_01:Um yeah, I'm a minus seven in my right eye, and blind in my left eye. Not that it's a competition, uh, but yeah, it it should it at your age you shouldn't be getting major drops like that. So I would I would, I'm afraid to say, think it's got to be some kind of optic nerve damage. That's oh man, okay. But then was that it? Was there anything else after that?
SPEAKER_00:No, touch wood, everything's been been okay. I just I suffer from headaches um now, which is is about it, but you know, considering what could have got happened or you know, what could happen, I'm I'm okay. So I'm grateful that that's about it.
SPEAKER_01:Okay, so it's what uh 13 13 or so years since your treatment and obviously from uh since the sort of second tumour a few uh a few years as well. How thinking back on it, how was the uh how has it impacted on your life? Now you've had a few years of normality in inverted commas, apart from the the visual loss. How how is it how has it shaped you as a person?
SPEAKER_00:Um I think honestly it has it's it's made me who I am, obviously, today. Um there were a few years when I was about 18 where I went through a very dark patch. Um I suffered from depression really quite badly. I think everything kind of piled up on me and I didn't deal with my illness very well. Um I never really spoke to anyone about it. And being 13 and being diagnosed with that, I couldn't really go and talk to like my school friends and be like, hey, do you want to have a chat about it? Um so I never really dealt with it, and it wasn't until about 18 I was like, wow, that was a lot to deal with. Um so only really the past couple of years I've tried to really make it a lot more visible to my friends and family, and you know, make it like make them more aware of of this condition and you know keep an eye out for it because it is so rare. Yeah, but actually, you know, I'm I'm meeting a lot more people that do have it, so it's rare, but it's not as rare as I thought. Yeah, um, you know, I've met so many amazing people whose symptoms were so small, but it's like wow, you know, I know quite a few people that have those sort of symptoms.
SPEAKER_01:Okay, okay. And uh have you attended any sort of acromegaline meetups or or you know paturity foundation events or anything like that?
SPEAKER_00:Yeah, so I went to one back in 2018 and I think you were there actually. Um I probably was. It was in was it in Birmingham? Birmingham? But yeah, the Birmingham one. Um I went to I went to that one and that was amazing. It was so great to meet so many people, and it was like I I don't feel alone in this. Um okay. Because I don't know if if you felt it when you were diagnosed, but there wasn't anything really out there at all.
SPEAKER_01:No, I mean uh there was um I mean there wasn't Facebook groups for it. Uh there was a sort of Acromegaly or Peturitary Foundation message board, and I did I did kind of contact a couple of people that were keeping blogs, uh, but they've only got so much time to sort of liaise with you. But no, there wasn't really the uh the ongoing support. Uh what I did find useful was I mean, but this is me, I used to watch kind of surgery videos on YouTube of the uh transferoidal surgery just as because I was interested in what I was going to undergo. But from a from an emotional support, I guess. Um no, and and and and as much as we might berate social media, uh this is where it does become very powerful, is the is the sharing of the experience and and the sharing of knowledge and good practice and things like that. Um but it it really sounds to me like you know you you've come out of the other side, and and I I don't think it you can never call it a positive experience, but you can always take the positives from it.
SPEAKER_00:Definitely, definitely. Um last year I I tried really hard to raise money. Um, so I raised money for the brain tumour foundation. I spoke to them and I was like, you know, I had a I had a paturity tumour. Would you class this as a brain tumour? And they were like 100% yes.
SPEAKER_01:Wow, that's interesting.
SPEAKER_00:So I raised money for them, and then I did interviews for the Metro. Um wow, like my local Bedfordshire um news station, and it it got all published, so I'm guessing like the Peturity Foundation out there, like about paturity tumours and everything. So I just want people to be more aware of this, and especially um, I've always always kind of stuck with me because I was diagnosed so young, um, and I look different, you know. I'm I'm I am larger, I am tall, I'm six foot one, and I will I will never know what I would have looked like because I was, you know, I looked different from such a young age. If I'd maybe got diagnosed now, I would have known what I would have looked like up until now. So I want people to know, you know, I don't look like this because of, you know, I eat hundreds of calories a day or whatever, um, is because of a condition that I can't control. So don't go judging everyone's different.
SPEAKER_01:So no, uh that I think that's hugely important words uh to end on. Um and I and I think your your tale has been absolutely fascinating, Caroline. So thank you so much for sharing. And please continue doing the advocacy work that you do, however small or big it is, it it all helps in in kind of you know raising that just tiny bit of awareness of this very, very unique condition. So thank you for everything you're doing. Wow. Well, if you found Caroline's story interesting and want to hear other AcroTales, head over to Acrotales.com where you can find the ever-expanding library of interviews. And of course, you should subscribe to the podcast to receive the latest updates. You can do that via iTunes and Spotify. So it just remains for me to say thank you once again to Caroline and see you next time for another Acro Tale