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An addendum to my last 12 months with the finest healthcare available.

T

trblmkr

DP Veteran
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S/E georgia. If you miss my house ain't another f
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Independent
Last year I posted about our experience with Mayo clinic in Jacksonville and a year trying to determine the cause of my wife's seizures. We spent our max out of pocket ($6,250) and the total billed by Mayo was like $36,000. They, being the wonderful providers they are accepted the BCBS maximums for everything and wrote off a bunch.
I will repeat here that they are, regardless of what I am about to say, first class in every way, and they treated us very well at every stage of the process. And we were exposed to every division of Mayo and the testing they could provide.
Here is the rub. They never could tell us why my wife was having what appeared to be epileptic seizures or what was causing them. And then, to top it off , they just went away. She hasn't has one in over a year.
A couple of months ago, I'm driving to work listening to NPR morning edition and they have a segment on a type of seizure that is often not diagnosed correctly. PNES. Psychogenic NonEpileptic seizures.
They are sort of like a PTSD thing. Brought on by stress and crisis type life events.
We had suffered such an event prior to the onset of the seizures.
My problem is, the Neurologist at Mayo is a very respected, highly awarded member of his profession. He absolutely had to know of this condition. But he made no mention of it and instead expressed his regret for not finding the cause of my wife's seizures. At the very least, he should have referred her to the appropriate person to diagnose PNES. If nothing else, to rule it out.
The best healthcare money can buy is not always the best healthcare. Sometimes it is on the radio at 6:45 in the morning.
 
trblmkr said:
Last year I posted about our experience with Mayo clinic in Jacksonville and a year trying to determine the cause of my wife's seizures. We spent our max out of pocket ($6,250) and the total billed by Mayo was like $36,000. They, being the wonderful providers they are accepted the BCBS maximums for everything and wrote off a bunch.
I will repeat here that they are, regardless of what I am about to say, first class in every way, and they treated us very well at every stage of the process. And we were exposed to every division of Mayo and the testing they could provide.
Here is the rub. They never could tell us why my wife was having what appeared to be epileptic seizures or what was causing them. And then, to top it off , they just went away. She hasn't has one in over a year.
A couple of months ago, I'm driving to work listening to NPR morning edition and they have a segment on a type of seizure that is often not diagnosed correctly. PNES. Psychogenic NonEpileptic seizures.
They are sort of like a PTSD thing. Brought on by stress and crisis type life events.
We had suffered such an event prior to the onset of the seizures.
My problem is, the Neurologist at Mayo is a very respected, highly awarded member of his profession. He absolutely had to know of this condition. But he made no mention of it and instead expressed his regret for not finding the cause of my wife's seizures. At the very least, he should have referred her to the appropriate person to diagnose PNES. If nothing else, to rule it out.
The best healthcare money can buy is not always the best healthcare. Sometimes it is on the radio at 6:45 in the morning.
Click to expand...


I love that!
 
trblmkr said:
Last year I posted about our experience with Mayo clinic in Jacksonville and a year trying to determine the cause of my wife's seizures. We spent our max out of pocket ($6,250) and the total billed by Mayo was like $36,000. They, being the wonderful providers they are accepted the BCBS maximums for everything and wrote off a bunch.
I will repeat here that they are, regardless of what I am about to say, first class in every way, and they treated us very well at every stage of the process. And we were exposed to every division of Mayo and the testing they could provide.
Here is the rub. They never could tell us why my wife was having what appeared to be epileptic seizures or what was causing them. And then, to top it off , they just went away. She hasn't has one in over a year.
A couple of months ago, I'm driving to work listening to NPR morning edition and they have a segment on a type of seizure that is often not diagnosed correctly. PNES. Psychogenic NonEpileptic seizures.
They are sort of like a PTSD thing. Brought on by stress and crisis type life events.
We had suffered such an event prior to the onset of the seizures.
My problem is, the Neurologist at Mayo is a very respected, highly awarded member of his profession. He absolutely had to know of this condition. But he made no mention of it and instead expressed his regret for not finding the cause of my wife's seizures. At the very least, he should have referred her to the appropriate person to diagnose PNES. If nothing else, to rule it out.
The best healthcare money can buy is not always the best healthcare. Sometimes it is on the radio at 6:45 in the morning.
Click to expand...

You hear about these sorts of things all the time which makes me wonder what the problem is.....is it:

1) the nature of medicine?

2) a failure of humans?

Maybe droid doctors are the way to go.



Note: Your story reminds me a tad of this story:
Woman who appeared on HGTV finds out she has cancer after a doctor watching spots a lump on her throat
Click to expand...
https://abcnews.go.com/US/News/woma...ancer-doctor-watching-spots/story?id=55640226
 
Last edited:
Hawkeye10 said:
You hear about these sorts of things all the time which makes me wonder what the problem is.....is it:

1) the nature of medicine?

2) a failure of humans?

Maybe droid doctors are the way to go.



Note: Your story reminds me a tad of this story:

https://abcnews.go.com/US/News/woma...ancer-doctor-watching-spots/story?id=55640226
Click to expand...

And that reminds me of a story in CA about cancer dogs. A crew was doing a story about dogs trained to detect skin cancer. One of the dogs alerted on the camera man's back. A later report said he had a melanoma on his lower back.
After humans, dogs may be nature's finest work.
No, wait, after dogs, humans may be nature's finest work.
 
These "It took 9 years and seven doctors and $100,000 worth of medical services to figure out what is wrong with me" stories drive me up a wall......
 
Hawkeye10 said:
These "It took 9 years and seven doctors and $100,000 worth of medical services to figure out what is wrong with me" stories drive me up a wall......
Click to expand...

I could drive a semi through that opening! How are ya, Hawk? :2wave:
 
Rexedgar said:
I could drive a semi through that opening! How are ya, Hawk? :2wave:
Click to expand...

I am on my second cup of coffee, getting my day started, feeling pretty good, next up is mowing the lawn. I see that I have over 25 quote notifications but those are going to have to wait, I just happened to notice this one.

Thanks for asking.
 
Hawkeye10 said:
I am on my second cup of coffee, getting my day started, feeling pretty good, next up is mowing the lawn. I see that I have over 25 quote notifications but those are going to have to wait, I just happened to notice this one.

Thanks for asking.
Click to expand...


Back to back beautiful days on the right coast! Trimmed hedges and cut the grass earlier.............
 
trblmkr said:
Last year I posted about our experience with Mayo clinic in Jacksonville and a year trying to determine the cause of my wife's seizures. We spent our max out of pocket ($6,250) and the total billed by Mayo was like $36,000. They, being the wonderful providers they are accepted the BCBS maximums for everything and wrote off a bunch.
I will repeat here that they are, regardless of what I am about to say, first class in every way, and they treated us very well at every stage of the process. And we were exposed to every division of Mayo and the testing they could provide.
Here is the rub. They never could tell us why my wife was having what appeared to be epileptic seizures or what was causing them. And then, to top it off , they just went away. She hasn't has one in over a year.
A couple of months ago, I'm driving to work listening to NPR morning edition and they have a segment on a type of seizure that is often not diagnosed correctly. PNES. Psychogenic NonEpileptic seizures.
They are sort of like a PTSD thing. Brought on by stress and crisis type life events.
We had suffered such an event prior to the onset of the seizures.
My problem is, the Neurologist at Mayo is a very respected, highly awarded member of his profession. He absolutely had to know of this condition. But he made no mention of it and instead expressed his regret for not finding the cause of my wife's seizures. At the very least, he should have referred her to the appropriate person to diagnose PNES. If nothing else, to rule it out.
The best healthcare money can buy is not always the best healthcare. Sometimes it is on the radio at 6:45 in the morning.
Click to expand...

This is what is known as a ‘diagnosis of exclusion’.

There isn’t really a way to test for or positively diagnose PNES, a video-EEG is necessary (and not always available), and even that isn’t definitively diagnostic.

In fact, my reference here says that sometimes it takes a decade or more to make this diagnosis. Since do many other uncommon things can precipitate seizures, PNES is a diagnosis that’s made only when virtually everything else has been ruled out.
 
trblmkr said:
Last year I posted about our experience with Mayo clinic in Jacksonville and a year trying to determine the cause of my wife's seizures. We spent our max out of pocket ($6,250) and the total billed by Mayo was like $36,000. They, being the wonderful providers they are accepted the BCBS maximums for everything and wrote off a bunch.
I will repeat here that they are, regardless of what I am about to say, first class in every way, and they treated us very well at every stage of the process. And we were exposed to every division of Mayo and the testing they could provide.
Here is the rub. They never could tell us why my wife was having what appeared to be epileptic seizures or what was causing them. And then, to top it off , they just went away. She hasn't has one in over a year.
A couple of months ago, I'm driving to work listening to NPR morning edition and they have a segment on a type of seizure that is often not diagnosed correctly. PNES. Psychogenic NonEpileptic seizures.
They are sort of like a PTSD thing. Brought on by stress and crisis type life events.
We had suffered such an event prior to the onset of the seizures.
My problem is, the Neurologist at Mayo is a very respected, highly awarded member of his profession. He absolutely had to know of this condition. But he made no mention of it and instead expressed his regret for not finding the cause of my wife's seizures. At the very least, he should have referred her to the appropriate person to diagnose PNES. If nothing else, to rule it out.
The best healthcare money can buy is not always the best healthcare. Sometimes it is on the radio at 6:45 in the morning.
Click to expand...

Actually you got the best in healthcare.

The diagnosis of psychogenic problems.. are generally diagnosis of exclusion. In other words.. when all other causes.. especially treatable ones are ruled out.

Now, you think you got "bad" healthcare? At the end of the day.. your wife is fine.

Now. .imagine that you lived in another country.. where the tests for different causes of epilepsy were regulated to reduce costs. And her physician said.. "you have psychogenic seizures"..

Then three years later after suffering seizures and being told its all in her head basically... one day the physician gets the okay to do some of the tests for seizures.. because she has had seizures so long and the criteria is met..

and you find out after the test... "oh yeah.. there is an organic cause.. and we can now treat it".

Awesome right?

Just saying that there is often a tradeoff when you reduce the cost of healthcare.
 
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