How it Started.. my Pectus Backstory & Diagnosis

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​I had absolutely no idea that I had severe pectus until I was 40 years old! Because.. boobs, and also, I'd just never even heard of it before. Here's how it went..

I'd always been kinda rubbish at cardio. At school I was great at long jump, high jump and 100m sprints, but I sucked at long distance. My chest would burn and I'd feel like I was gonna pass out. Occasionally I did pass out randomly, but I didn't think much of that, it was just how I was and I didn't know any different. I'd always had palpitations, random spells of chest pain and a racing heartbeat. I'd often feel like I didn't have enough room for my food to go down when I swallowed and I would choke sometimes. I had a strange posture that I constantly had to try to correct, developed excessive curvature in my lower spine and loss of curvature in my thoracic spine. As a child of around 8 or 9, it was pointed out to me by a female family member that I had a dip in my chest, but that didn't occur to me to be an issue. Then my breasts came in, and that dip was never given a second thought.. as far as I was concerned, it was just my cleavage and I was a slightly strange shape. My lower back and neck were chronically sore and starting to degenerate. I got injured and tired out a lot, and had to have a lot of injections around my spine over the years as my muscles would go into spasm and pull my head into strange positions, or I'd have sciatica so bad that I'd struggle to walk.

​As an adult it was discovered that I have a connective tissue disorder; Hypermobility Spectrum Disorder, now considered to be hypermobile type Ehlers Danlos Syndrome. I was assessed as an 8 out of 9 on the Beighton scale by Rheumatology, although MSK think I might be more of a 9/9. Either way, I'm extremely flexible due to faulty connective tissues. And so this then was the explanation for me, of why I didn't feel quite right. Why my gut was always playing up. Why I had such terrible insomnia. Why my body seemed dysregulated. But I was ok. I started dedicating time daily to strengthening my muscles to support my floppy joints. I altered my diet. I was in & out of physio. But I could hike! I took my sweet time and was slower than many, but I could do what I loved, and I could live my life. All was well.

Something started going a bit wrong in 2023 while in my late 30's. My lower back started hurting a lot more than it used to. And then my right hip. And my left knee. The balls of my feet. It was all burning. The MSK doctor said I was all out of alignment; issues due to my hypermobility filtering down throughout my body, but still no one noticed the pectus. So I went harder on the exercises in an attempt to strengthen my core & glutes, which apparently weren't activating. But as my core & glutes got stronger and pulled my lower back into better alignment, something was going wrong in my upper body instead. I started having trouble laying down to sleep, feeling a strange pressure in my chest with my heart thudding hard for no apparent reason. I couldn't lay on my right side any more and my hands kept going numb. My heart was having spells of feeling like it was beating backwards that would go on for hours at a time

I had a heart echo in 2023 and was told that everything was completely fine. They didn't notice the pectus. So I kept pushing on, telling myself it was all in my head.. 'maybe this is just how it feels to get a bit older'. I got a smart watch and could see that my heart was working real hard on exertion, and I continued to have palpitations and a bit of mild chest pain on and off.

In November 2024, after becoming subtlety more breathless and exhausted as I approached 40, I worried that I was getting unfit, increased my workouts and added cardio, despite never having been very good at it. It would seem this was a mistake, as my breathlessness got far worse instead of better. One morning I felt a terrible ripping feeling in the left side of my sternum as I danced around my living room to 90's Britpop with my tiny hand weights. I assumed I'd torn a ligament or something. I rested for a few days in the initial injury phase and assumed my body would just do what it needed to do and repair over time. The breathlessness increased and never improved. I now believe that this was my sternum sinking a bit deeper into my chest

Over the winter of 2024, my chest started to feel strange, all of the time. Tight and under pressure. I assumed that I must be having anxiety or suffering from stress and tried to work on my wellbeing. But the pain just kept getting worse. I would lay in bed at night feeling like my ribcage was clenching inwards. I thought maybe I was going mad

By the spring of 2025 I was having near-constant chest pain, had developed thoracic spine pain, and I was becoming too breathless to hike. If I tried to jog for a few minutes, it would be followed by days of being out of breath doing normal activities, a terrible feeling of pressure in my chest, and a retching, gagging feeling that would make me cough. I spent many nights awake in tears with this terrible, mystery pain in my chest. I nearly blacked out carrying some shopping bags, took myself to A&E, and was told I was fine. I was later treated for costochondritis with two courses of high strength Naproxen, but they only took the edge off and the pain returned with full force as soon as I stopped taking it. My body started to reject the rucksack, causing a heavy pressure and pain in my chest with dizziness. I nearly blacked out in the shower and I had to buy stools for my kitchen and bathroom to help me cook and wash myself, as my body didn't want to hold me upright. I was losing my hobbies, my income. I was struggling to walk around a supermarket. I didn't understand what was happening to me

In June 2025, I had a private MRI to try to figure out what was going on with my chest & thoracic spine. It was found that a perineural cyst had developed at T7-T8, but the radiologist did not identify the pectus. Even to my untrained eye, it looked to me like my sternum was too far inside my body and that my heart was squished. I asked the radiologist, and was told that there was no issue with the position of my sternum. I searched the internet for 'sternum too far into chest' and the search results were all about pectus excavatum. This was the first time I'd ever heard of the condition, and from the scan images, I was sure that I had it, and quite significantly. Despite being told that I didn't.

My private MRI - this didn't look right to me, but I was told it was normal. This is actually severe pectus excavatum, compressing on the right side of my heart

​I asked a GP about this and was 'reassured' that the radiologist would have noticed it if it was there. However, in August '25, the pectus excavatum was finally diagnosed with a chest CT scan, at the age of 40. I was told I have a severe chest wall deformity, and that my sternum was compressing on the right side of my heart. I had a Haller index of 6 on inhale, but later scans showed that on exhale, it's 7-8. Just underneath my heart, it goes as deep as 10. For reference, a normal Haller index is around 2, with mild-moderate pectus excavatum being around 3 and severe pectus deformity being 3.25+

​Finally, I knew what was wrong! But then the realisation dawned on me, that I'd been hauling a heavy rucksack up mountains with a severe chest wall deformity.. for years. I had already had to give up on the rucksack, and now I understood why my body had been complaining about it; the pressure on my upper body had probably been pushing my sternum further into my chest. But as heartbreaking as it was to say goodbye to my rucksack, I had bigger issues. How to do my food shopping. How to do the housework. How to keep earning as a lone parent and the sole provider, when my income depended on being active and my body was saying 'no'.

My chest CT scan on inhale - August 2025

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​Various scans since diagnosis have found that the pectus is causing the following issues inside my chest;

Compression on right atrium, right ventricle
Mild compression on left atrium

Increased estimated pulmonary artery pressure plus right atrial pressure on exertional stress echo (not Pulmonary Hypertension – PH has been ruled out with resting right heart catheterisation)
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Left-shifting of heart
Mildly compromised right ventricular inflow and outflow tract
Slight atypical ballooning of right ventricle
Upper thoracic aperture below normal range

Over the last year, I've learned how to manage the symptoms as best as I can, mainly by resting, avoiding cardio and taking painkillers. But I remain exhausted and in pain most of the time, and unable to do anything more than walking slowly on flat ground without getting out of breath. Just using my arms causes breathlessness too

It was also discovered via private MRI's and an NHS bone scan that I have bone changes & degeneration in the joints of my sternum and spine, and this, combined with my chest caving inward and putting excessive strain on my already hypermobile joints, is causing a lot of pain. Rheumatology recommended surgery ASAP to remove the strain from my sternum and chest wall.

My MRI with a Haller index of 10 - underneath heart on exhale. The shortest upright yellow line is the distance between my spine and sternum - on this image that's just 25mm. The longer upright yellow line shows what would be considered severe pectus excavatum - mine is 3 times worse here. The blue line shows where my sternum should be with a normal Haller index

In the winter of 2025, I had a consult with a very skilled pectus surgeon, who'll be able to correct my pectus with the Nuss procedure - the insertion of metal bars under my ribs, to push my sternum outward and away from my heart and lungs, creating a normal or near-normal amount of space in my chest cavity. The bars will remain in my chest for years, while my body heals and sets around them into its new position. This is not an ideal surgery to be having in my early 40's though. At my age, my ribcage will be set hard in its busted position. It'll be harder for my body to accept the bars, and the recovery will likely be longer and more difficult than if I were younger with more forgiving cartilage. There's a higher risk of complications but at this point, it's a risk that I need to take. And developments in this surgery have come on leaps and bounds in recent years. I'll be in good hands. I'm expecting a few months of hell, but nothing good comes of staying like this, so I'll go through whatever it takes to fix it.

​​​In summer of 2026, the NHS funding for my surgery was approved! The NHS decommissioned pectus surgery in 2019, but due to uproar from patients and their physicians and efforts by pectus surgeons and the Pectus Matters charity, funding for the surgery was reinstated in 2023 - but only for the most severe cases. There is still much work to be done. I'm one of the 'lucky' ones; my surgery will be happening in September 2026. It cannot come soon enough! 

I'm both excited and nervous for my future Nuss procedure and spangly new chest! It's not gonna be easy, but can't wait to see how I'll progress and start getting my life back. I think BionicBeare has a nice ring to it. Bring on the bars! :)