Here’s a new story and I will make a separate category too!
Eight Year Journey to a Diagnosis of Isolated Abdominal Aortic Dissection
On 14th July 2019 I was diagnosed with an isolated abdominal aortic dissection. But my story starts way back in 2011.
Back then I was a 43 year old healthy fit endurance loving cyclist and mountain climber, and then during a multiday backcountry tramp (hike) I suffered a bad leg cramp episode (something I never get), but put it down to a stinking hot day and dehydration. The following day I was laid out on the ground with debillitating leg cramp. I finished the remaining days of the trip without incident. Folllowing that fateful trip I was never the same. My leg power, endurance and recovery began to slide.
Initially I saw my own GP who checked me over and did some blood tests, which revealed nothing. He sent me off to a rheumatologist who also drew a blank. I then spent a year working with various fitness and sports professionals to ‘train’ my way back. Nothing worked, and my strength and endurance continued to decline with no answers.
Two years in I gave up on finding answers, and went back to doing what I could for the next four years until I declined to the point where it was more mind than body keeping me going.
So in 2017 I restarted my search and returned to my GP who ran more blood tests and then referred me to the local hospital outpatient services where, over the next two years, I went through seven more doctors/specialists and more tests (including nerve conduction tests, and extensive tests for inflammatory conditions) and still none the wiser. I now had a new battle – battling to ‘stay in the system’ as they didn’t know what to do with me.
In eight years I went from being able to do 12 hour plus endurance, or climbing 3000m in a day, and thriving on high intensity with virtually no recovery time required, to now only managing light paced 600m climb and needing a week to recover. There was definitely something very wrong and I was determined to find some answers however small.
I was becoming despondant with the lack of answers of any kind. I felt like a fraud – I’m being told I was the picture of health, but I knew I was broken. And as I continued to increasingly battle physically and mentally to keep climbing I appeared to be outwardly normal to my climbing acquaintances, but they had no idea of the toll it took during and after. I kept it all to myself as I was unable to explain what was wrong as I couldn’t put a label on it, so avoided contact with a lot of people.
The breakthrough finally came in March 2019 when I was having a debrief with my own GP about the where we are at. I was venting some frustrations of the process, and that all the tests done are at rest when my problem is while exercising. During the vent, amongst other things, I randomly mentioned blood pressure while exercising. This triggered a thought for my GP – a little known vascular condition in high level cyclists and someimes other athletes called External Iliac Artery Endofibrosis (EIAE), where blood pressure to the legs drops while exercising but normal at rest, as a possible diagnosis. For the first time a condition ‘ticked the boxes’ and I readily identified with it as I read more about it.
My GP sent me for a vascular consult, who was rather dismssive of EIAE in my situation as I wasn’t an elite cyclist, but ordered a CT angiogram anyway.
Prior to the CTA I was able to complete a DIY ankle/brachial blood pressure test (DIY because hospitals aren’t set up to do this test at high exercise load, only at rest or low activity), and confirmed a massive drop in blood pressure to the legs during exercise – a huge indicator for my GP’s hunch of iliac endofibrosis.
I was convinced the CTA would confirm my GP’s hunch to be right. So when he rung me on a Sunday and told me the results, we were both floored to find it was in fact an isolated abdominal aortic dissection (no aneurysm though). The dissection starts below the renal arteries and stops short of the iliac arteries. It was described by the radiologist as ‘weblike’.
When I saw the surgeon three weeks later, he was just as surprised as he wasn’t expecting to find anything. I have absolutely no risk factors, and nor did I have any pain. The surgeons only explaination was the result of an abdominal trauma. To which I had to say no, either at the time of first symptom or ever. My cause is without explaination.
The initial plan is to monitor. I have not been placed on any meds as my blood pressure is fine, and my heart rate is nice and low. Only thing is daily aspirin.
That is the end of chapter one – eight years to a diagnosis.
I am now just starting on chapter two of my dissection journey – monitoring and management.
Early days at four months in, but my surgeon feels it is stable. But we seem to be at a disagreement as to what stable means. The last eight years tells me I will continue to slowly but steadily decline for strength/stamina and I have seen nothing to say it is slowing down, but the surgeon believes it will level off if it hasn’t already.
I see the surgeon again in six months, and he wants to see my exercise diary over that period to see if that is the case. At least he is keeping an open mind.
What we do agree on is that is not a good idea to be cutting in to me while I’m still functional and able to manage some exercise, even if it’s only a tiny fraction of what I could do.
The diagnosis also brings relief as I now find myself able and willing to talk about what is wrong with me – something I early on conciously chose not to do before diagnosis as when I did no one grasped what I was saying because I lacked any answers or reasons for my situation.
It was only once I did that I realised how heavily it weighed on me keeping to myself and not talking about it – even to family. That weight is now lifted.