I recently rediscovered this site. I had a dissection on July 2, 1996. I just read the narrative by Bob Young, and I was impressed with his statement:
"One irritation for me is the fact that I had many tests run during the previous years (in another city) yet no person involved with my dissection was interested in reevaluating these tests. As interpretive as predictive medicine is, it's incomprehensible to me that someone would not be interested in at least attempting to look for possible clues in the existing data, especially after observing the outcome. How are practioners' interpretations going to improve without a strong curiosity about the facts? Is this lack of interest symptomatic of other deeper issues or legal concerns? As a scientist, who's decisions and predictions are routinely tested and have a direct influence on corporate profit, I would have to say that the answer is yes to the last two questions. "
My own experience confirms Bob's opinion. The lack of curiosity among the medical profession is truly astounding. In my own case, I had severe hypertension that had been treated for many years with only partial success. One after another, physicians would reach the conclusion that my bp just was not very controllable. After my dissection, a surgeon wanted to operate after a 6 month healing period. I used the 6 months to carefully investigate the alternatives. I quickly found that, under the best of circumstances, the death rate from aortic replacement surgery is 10%, and among those who survive about 5% are seriously disabled. The surgeon assured me that without the operation, my prospects were very poor.
I read the medical literature very carefully. I was a microbiologist on the faculty of a medical school at the time so I had excellent access to library facilities. I read article after article that reached the same conclusion: operate. After careful examination, it became clear that each article relied on the same old data. No new studies were done, just new opinions based on recycling the old data. I also knew, however, that bp medication had improved a lot in the last 20 years so I looked for a study with new data. I finally found it here:
Ann Thorac Surg 1996 May;61(5):1339-41 - Selective management of acute type B aortic dissection: long-term follow-up. - Schor JS, Yerlioglu ME, Galla JD, Lansman SL, Ergin MA, Griepp RB. Department of Cardiothoracic Surgery, Mount Sinai Medical Center, New York, New York, USA.
I also consulted with Michael Dake at Stanford who did another CAT scan, said it had not changed and to treat it medically unless an annual CAT scan showed a change (to this date, it has not).
After disposing of the operation issue, I turned my attention to my bp. I had frequent (weekly to monthly) appointments with my cardiologist (Geoffrey Vorhoff). At each meeting, I had another chem-7. And at each meeting we went over the results; they were always normal. After months of this, I began to see a pattern. My potassium (K) level was always marginal at about 3.5. Anything lower would have been flagged. I investigated a connection between low potassium and high bp and I found a genetic disease, Liddle's syndrome, which in turn led to an investigation of the role of aldosterone. After reading all this, I went to Vorhoff and asked him to measure my aldosterone level and prescribe amiloride. He did and my aldosterone level was 3X high normal and the amiloride, at least for a while, worked. I eventually had my left adrenal gland removed because it had an aldosterone producing adenoma.
My bp is still very high and I still take 4 drugs to control it (labetalol, norvasc, avapro, and HCTZ). There is much more to this story, more than I can write here. I consulted many physicians during its course and what I found was always the same:
If you could diagnose your own problem, as I did, you could get it taken care of going to a physician who would understand your diagnosis. If, however, they didn't already know about the condition, they would never go to the library (or their computer) to look it up. They have no curiousity and feel no responsibility to extend themselves in any way.