I’ve got a couple of very unique medical issues that make me a unicorn of sorts, and not in a good way. These are both conditions where only a handful out of every 100,000 people experience the problem. One is harmless and the other is pretty dangerous. One has no known cause or cure and the other has a possible cure but it involves surgery with a significant risk of death.
As to the first, it is called Transient Global Amnesia (TGA). Only somewhere around 2 to 10 people out of 100,000 ever experience TGA. And of those few, only about 10-15 % people have a repeat occurrence so that puts me more in the 1 out of 100,000 category since I’ve had two events so far. Oddly my brother has also had two TGA events, even though it is not thought to be an inherited genetic condition. And I can say this much with confidence, it is one completely bizarre brain malfunction.
I can describe it two ways, once from what I experience and then a second time from what others around me observe. This is what my reality was both times. I’m in a familiar place doing something very normal. In the first case I was doing a push up in a group fitness class. In the second I’m sitting in a lounge talking to a stranger about his job. What happened next was exactly the same both times. In the blink of an eye, I’m transported through space and time to somewhere else where a frustrated person is fed up with my behavior. One was my wife telling me we were going to the medical clinic because I had just asked her the same question for the 15th time. The other was a hotel desk clerk, who was unhappy with my uncooperative behavior. In both cases I lost about one hour of my memory, and never got it back.
That is what I experienced, my friends who were there have told me what they saw. In exercise class they thought I was just trying out a new routine as the resident class clown. I was doing the exercises poorly and was repeating myself but it was 5:30 AM so nobody was really paying much attention. The second time there weren’t a lot of witnesses I could go back and talk to since I was travelling. But from what I did hear it was pretty much the same story.
One of the stranger things about TGA, as opposed to regular amnesia, is that you do not forget who you are or anything that you knew prior to the event. You just lose the ability to store anything in your short-term memory. Nothing, nada, zilch. I was able to do the exercises, sort of, according to my friends in the work out class. I was able to drive my car home, even though I tried to get in the wrong car. But you can’t do anything sequential that depends on knowing what you’ve already done. Because you are truly living in the moment, and you remember nothing of this later. After it recedes, you start forming new memories though you are kind of loopy and inconsistent and hella confused for an hour or so, and you also are kind of foggy about the events leading up to the TGA.
They don’t know a lot about it because it is so rare and has a short duration and because anyone having an attack is never going to formulate a plan to get to the emergency room. They think they are perfectly fine. The few times people have made it to medical care before recovering they are generally initially diagnosed as being intoxicated, high on drugs or as having a stroke. The first time I spent three days getting CAT scanned, MRI scanned and blood tested to rule out a stroke. A visiting neurosurgeon happened to have had one patient with TGA and he diagnosed me, otherwise I might not have ever known what happened. This was several years ago, they do now have an MRI test that can find markers of TGA after an event, I believe. The second time I never went for care, because I knew what it was and that there was no treatment.
The second Gray’s Anatomy weird medical problem I have involves an organ being in the wrong place, I’m not going to get specific because that’s just too much information, in my opinion. Suffice it to say that 25 out of 100,000 have this same issue and that it is treatable. I have put off surgery to fix it for about eight years because the mortality rate for the surgery was in the 3% range and because my symptoms were not that bad. However, it has gotten worse recently and scans show it is probably significantly impacting my heart and lung functions and needs to be fixed. Also, the mortality rate from surgery is more in the one percent range now.
The emergency surgery mortality is still around 3% so my odds are far better if I choose my surgeon and do this on a planned basis instead of waiting until it becomes an emergency, maybe when I’m hiking in the middle of nowhere with my wife. So, I’m getting the surgery done at the end of this month. Wish me luck!
I will have the pleasure of going 7 days on a clear liquid, no sugar, no alcohol diet prior to surgery and a month of only a slightly less restricted diet afterwards. I also won’t be able to run or play tennis or pickleball for weeks. On the other hand, if it works out perfectly, I might get some of my endurance back, which is just a shadow of what it used to be. Even if I only get 5 or 10% more oxygen uptake that would be huge for me in both my running and tennis, so I’m very hopeful.
If I draw that 1% lottery ticket and don’t make it, well, its been fun knowing you folks. But I’ve generally been very lucky in the positive direction so I do not expect that to change this time. I’m virtually certain I’ll get to post some serious office boy whining about wasting away on soup and Crystal lite in the near future.
What about you, have you got any of those super rare medical defects that you don’t mind mentioning?
Have you ever had to consider elective surgery that has some risks of not working or of even making things worse?
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