Some 7 years ago, I began to suffer increasingly severe symptoms for which I was unable to get a medical diagnosis. Over time, I also suffered a number of serious crisis events that had a significant effect on heart function, which were ultimately determined to be potentially fatal events known as phaeochromocytoma crises, which remained undiagnosed and untreated.
Eventually, about 3 years ago, an adrenal tumour was (accidentally) discovered. Despite symptoms that were very specific, the tumour was diagnosed by the endocrinologist and surgeon to be a benign, simple adrenal tumour that could safely be removed, and I was told that life would return to normal about a month after surgery.
After researching the symptoms on the internet, my argument was that the symptoms were indicative of a phaeochromocytoma (a rare adrenal cancer, requiring specific preparation prior to surgery). The endocrinologist convinced me that because the results of the pathology were borderline (catecholamine analysis), the tumour could not possibly be a phaeo, and that it was safe to proceed. At that time, the conclusive pathology required (metanephrine analysis a process of which many doctors were, and still are unaware) was unavailable to me.
The surgery proceeded (without the preparation for surgery on a phaeo), and on manipulation of the tumour, a hypertensive crisis occurred during which my blood pressure reached a level of 360. The procedure was immediately abandoned, but I somehow survived. This crisis lasted for 3-4 days followed by a crash of monumental proportions when treatment with Phenoxybenzamine began (at too high a dosage) to relieve the crisis.
My intact survival is still unexplained. At the end of the day, I endured 3 major procedures over a 12 month period (the first caused the crisis and was abandoned, the second procedure followed the correct preparation for surgery on a phaeo, and the phaeo was removed, and the third procedure was required to repair 2 incisional hernias which opened up after the first two procedures of which one was approx. 40 cm² in size which also went undiagnosed for another 6 months.
I now await a period of approx 6 years to pass before I can feel more confident that there will not be a recurrence. Some 3 years after the initial surgery, life has still not yet returned to normal.
As a result of these events, as well as the impact of the sustained high levels of adrenaline and noradrenaline (epinephrine and norepinephrine) produced by the tumour over many years, I was diagnosed with Post Traumatic Stress Disorder (PTSD), which I am finally managing to overcome (it is a long process).
The issues associated with PTSD have resulted in difficulties reminiscent of the battle I had to obtain a diagnosis of the phaeo, in that it is simply not recognised by many practitioners. An ignorance exists which desperately needs to be addressed.
In the medical world, I have had to deal with the Good, the Bad and the downright Ugly, as far as practitioners go. As far as the insurers go well, that is a story even uglier than the experience with the medical profession but this is not the place for such a discussion.
There are specific issues to emerge from my story, which I would like to share to raise an awareness in the hope that others may be spared the experience my family and I have endured.
1. Recognition of the possible existence of a phaeochromocytoma (which occurs in 2 to 8 people per million of population) by both sufferers and by medical practitioners, as symptoms are very specific.
2. Diagnostic options which are available, of which many practitioners are totally unaware
3. How my family and I dealt with the extraordinary levels of stress resulting from the high emissions of catecholamines (epinephrine and norepinephrine) from the tumour
4. Awareness of the high mortality rate due to this lack of recognition
5. That there is indeed some light at the end of what is ultimately a very long, dark and lonely tunnel
I would also like to make contact with others who may have been in a similar situation to find out how they have coped, and how they have overcome the residual effects of this devastating condition, as this may provide further understanding to myself and my family as we work through the issues caused by this experience. Due to the rarity of this condition, it is very difficult to find anyone else who has had a similar experience.
If I am able to spare one person from the experience my family and I have endured, my survival will have been worth while.
With kind regards, and sincere appreciation,