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?
As always, if you don’t see a comment box just click on the title at the top of this post.
Just your upbeat attitude alone will make the recovery just fine. Ha ha.
Dang, just your luck with the very rare defects. Good luck on the surgery. Sounds like it was the best decision to get it done now.
I am deaf, but can hear pretty good with hearing aids. A couple times, doctors have told me to have some surgery around the ears for various reasons. There was a good risk of losing more hearing ability. I got 2nd opinions and basically they said don’t do it. So glad I got the 2nd opinions…
Maybe you can spend more time on Millionaire Money Mentor forums during your recovery!
Thanks for the good thoughts RE@54. I have never been a fan of elective surgery but in this case it looks to be the lesser of two evils.
steve, i wish you all the best with your surgical adventure. your post title is a great warren zevon song if you weren’t aware. i’ve noticed as i get into my 50’s these medical things popping up more frequently (as opposed to mostly zero for 50 years). i’m really loathe to get into the medical industrial complex and most of the problems have just resolved even with the medical attention. they never cure anything!
Freddy, I agree and I would avoid doing anything except the potential of getting some better stamina is a powerful incentive. Being gassed the whole time I’m playing tennis or running takes some of the fun out of it, plus it scares me sometimes. I just remember lovely Linda belting that song out, she was so beautiful and had serious pipes.
Wow! My very best wishes for a successful surgery and complete recovery! And hopefully no more episodes of TGA. I never heard of that before so thank you for sharing your experiences, I am glad to be aware of it.
Sue, Its so weird you will never cross its path most likely. Thanks for the good wishes. The good part of the surgery is they are only cutting skin and muscle, they won’t actually cut into any organs so that makes complications much less likely.
Good luck with the surgery dude, and like Freddy said kudos for the Warren Zevon. After your surgery you can resume being an excitable boy
Thanks Dave, I have no doubt I’ll be back at it in no time.
Godspeed, Steve.
Thanks Hobo!
All the best for a successful surgery and swift recovery.
Best make the most of being “poor poor pitiful me” while it lasts though, with all that extra stamina your chore quotient is bound to increase afterwards!
I’m a zen master of milking any infirmity. Thanks, Indeedably.
Sucks that you won (lost?) the genetic lottery two times. At least you will hopefully gain back some stamina post-surgery. Good luck Steve, looking forward to hearing you complain about your liquid diet.
Thanks Adam, a liquid diet would be great if it included some beer. But the week before no alcohol and the six weeks after no carbonation. Its diabolical!
Sorry about the need for surgery, but glad it’s treatable. Hope you have an uneventful (except for success) procedure and a swift and easy recovery.
Thanks fifo, I appreciate the good wishes. Today and tomorrow are my last two real food days for almost two months. So, tonight we are cooking lobster tails and tomorrow we’re having ribeye steak!
Sorry to hear about your medical issues…you really are a unicorn! I don’t have any rare conditions, but I have accumulated more than enough common ones (diabetes, congestive heart failure, chronic kidney disease and thyroid cancer) and it’s no fun. I hope your surgery goes well, you recuperate quickly, and you see that bump in your stamina so you can continue to enjoy retirement.
Thanks Gary, my issues are indeed small compared to yours. I wish health for both of us.
wow – weird on both counts!!! we’re all rooting for you and def. expect you to be here to regal us as you do 🙂
Yeah, I’ll be hanging around. Somebody has to wave the flag for us irrelevant boomers. Thanks J!
Best of luck Steve. Scary stuff on both counts. I’m sure you’ll do great, so warmest wishes on the recovery.
No known health issues on my front, but my wife learned in our first year of retirement, that she has a rare form of IPF (it’s a hereditary progressive lung disease). She’s three years into it and taking an experimental drug that seems to be helping her hold her ground at this time. She lost her mother to this at the age of 59, and we now believe her grandfather may have also been misdiagnosed and passed away from the same disease.
Everyday is precious and not guaranteed. I’m sure you will do great. Best of luck with the surgery and recovery!
Thom, I’m so sorry to hear that. Thank heavens the drug seems to be effective. Best wishes.
Best of health and luck Steve! I had meant to comment on this before. Thanks for reminder to appreciate every day as well.
Thanks Sam, I appreciate it. Steve
Thank you for sharing Steve. May I ask how you found out about the organs being misplaced?
I’m in the process of figuring out what’s wrong with my gut. I just know that something is wrong but we’re running through a lot of tests to see what’s going on. Believe it or not, it happens when I drink any amount of beverage (even water).
I feel bloated and feel an uncontrollable rage that the bloating is making me feel chained and tied down. I have no idea if this is even a diagnosable condition, we shall see.
AT the risk of TMI to all the commenters I emailed you everything I know about it. The good news is once they figure it out they can fix almost anything in the GI tract.
I’m sorry you have to go through this Steve. I hope the days of pre-op and recovery go quickly and as complication free as possible for you. I just had my second hernia surgery in 15th months. While not as rare or potentially dangerous as your conditions, the lead up to the surgery drove me crazy as I was contemplating my recovery process and the months it will take before I can get my activity levels back up. I had my surgery yesterday. The best part is being on the other side of the surgery, knowing at least now I’m in recovery mode. Hopefully by the time you read this, you’ll be there too. Best of luck. Steve
Thanks Steve, I’ve still got four days to go til surgery, including two days in the car driving to Denver. I’m uncharacteristically worried about it, I’ve only had very minor surgery in my past, nothing this invasive with as much potential for problems as this has. But when you don’t have any better options, might as well go for it. I appreciate your good wishes and hope your recovery goes extremely well.
Hey Steve,
Pop back in and give us a quick update after your surgery. I’ll be thinking about you and look forward to your next post.
I wanted to let you know that a few years ago when I was at my lowest after my wife died, your encouragement and kind words kept me from going over the brink.
I’m doing that right now! Came through three hours of surgery in pretty good shape. I’m walking around and feeling pretty good considering all the internal rearranging done on me!
I’m glad to hear that you came through okay before I knew you were going in because now I don’t feel badly about giggling at the juxtaposition of your previous post with this one! The most major surgery I’ve had was a wedge lung biopsy to try to figure out why my lungs couldn’t transport oxygen any more. It was a necessary but horrendous experience – at least the thoracic ward came with a million dollar view to soothe me. Sorry to hear about the dietary restrictions, but I hope you heal beautifully.
Hey thanks, Caro, any kind of lung surgery sounds painful and scary. I’m mending well, just really really really really bored without my normal hobbies.