Maybe it’s permanent. Grounding that is.

denverpilot said:
Thanks. Good to know. :)

I don’t much care if it looks industrial but the Mrs might appreciate that. :)
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This is undoubtedly way down in the noise, but, here’s some pictures of the stuff I installed in our MIL suite. Every piece is grab bar rated when properly installed (which I did). Other than the fact that oiled bronze finish is now out of date, they look pretty good.
DCBF438E-015E-4F4D-9760-3992E0A02FB4.jpeg
44E0EAA0-F0C4-423A-8D79-EC080B78E979.jpeg
D3DE7000-06FF-4B94-B73A-D708401E76C1.jpeg
 
PeterNSteinmetz said:
Glad you are able to get in with some of the world experts. This is what I always advise people with serious diagnostic conundrums. If they can afford it, find the world experts for what it appears to be and go to them. Don't spend time messing around.
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That can make a big difference. I have a niece who was born in Charleston, SC. She was born without a sternum. This gives no protection to the heart, and death is likely within just a few days without surgery. At that time (2001), there were only something like 75 documented cases of that defect in the entire world. There was one surgeon who had performed something like 50 or 60 surgeries to correct it. He just happened to be based at the medical university in Charleston at that time. Talk about right time, right place.

He created her a sternum out of cartilage from some other part of her body at only 1 or 2 days of age. She is in college now, and to my knowledge has never had any complications.

There are some who are pretty good at what they do, and then there are others who are outstanding at what they do.
 
denverpilot said:
I decided to call Mayo today to start the process of asking general questions and seeing how far out appointments run, etc.
....
Minnesota in winter on a cane. Yay! LOL. At least the long term forecast looks decent for the time of year. And I’ll probably be riding more imaging tubes anyway, indoors. :)
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Mayo is the place, without a doubt. You shouldn't need a cane, anyway. They have the whole thing laid out so that you if you got one of the connected hotels, you never have to step outside even for meals. And there are nice people that will roll you around if you need it.
 
Nate, really happy to hear that you're getting seen by the foremost experts in the field. As already said, this sort of thing makes a big difference in outcomes. Let us know how it goes, and we'll be here for your entertainment while you're in the waiting room! :)
 
Well here we go. Doc says very unlikely it’s MS. Doesn’t look right.

Blood work, full spine MRI, chest X-ray (ruling out sarcoidosis), and yay... another lumbar puncture.

Doc says she has a theory but not fair to say until ruling other stuff out or the theory in.

Also says high chance I’m staying into next week and neurosurgery to get tissue samples.

Won’t know until earliest, Thursday PM. Scheduling conflict may mean next Tuesday AM.
 
So Nate, does that mean you're likely staying at Mayo for a week or more?
 
Ted DuPuis said:
So Nate, does that mean you're likely staying at Mayo for a week or more?
Click to expand...

Well they wanted five biz days starting today (normal for travelers), so I was already planning to be here through Mon night, but now we wait and see if it gets extended.

Those initial tests will be done late Thursday evening by the current schedule, but a scheduling conflict for the Doc may mean a wait for a follow up on them until Tuesday AM.

They’re figuring it out now. Could turn into a colleague reviews the results and kicks me out on Friday with video follow up. They’re not sure yet. They are going to call me this afternoon.

If they want neurosurgery to consult, that’d be an initial visit with that Doc on Friday and probably surgery next week, I assume.

Of course they change course rapidly if any test indicates something here, so... pretty early to be guessing. X-ray is done, blood work tomorrow morning, and then more... unless someone says “We found something.”

Then it all changes. :)

That’s just how they do it here, I’ve heard. Chase paths unless something hits and then change plans. Pretty cool. It’d take weeks just for the specialty appts and imagery trips back home. (The previous MRIs took about a week to schedule and the lumbar puncture, two.)

Pretty amazing IT system behind it all. As soon as all the orders are in, assistants go to work scheduling all of it and give you a printout of where and when to be places. Also populates the phone app. Can review documents and sign there also, eCheckin at appts, sign disclosures, etc. They even have you go get a photo so they know it’s you they’re talking to.

Research system is also integrated with it, and I met with a research coordinator about providing various stuff to research, which has the added “bonus” I guess you could call it, of you getting notified about anything they find in the research dept — example, anything genetic. Not specifically a genetic test ordered but can be helpful if they see something in it.

Oh, and they’re apparently an HP shop. Haven’t seen a non-HP IT device yet. :)
 
denverpilot said:
Well they wanted five biz days starting today (normal for travelers), so I was already planning to be here through Mon night, but now we wait and see if it gets extended.

Those initial tests will be done late Thursday evening by the current schedule, but a scheduling conflict for the Doc may mean a wait for a follow up on them until Tuesday AM.

They’re figuring it out now. Could turn into a colleague reviews the results and kicks me out on Friday with video follow up. They’re not sure yet. They are going to call me this afternoon.

If they want neurosurgery to consult, that’d be an initial visit with that Doc on Friday and probably surgery next week, I assume.

Of course they change course rapidly if any test indicates something here, so... pretty early to be guessing. X-ray is done, blood work tomorrow morning, and then more... unless someone says “We found something.”

Then it all changes. :)

That’s just how they do it here, I’ve heard. Chase paths unless something hits and then change plans. Pretty cool. It’d take weeks just for the specialty appts and imagery trips back home. (The previous MRIs took about a week to schedule and the lumbar puncture, two.)

Pretty amazing IT system behind it all. As soon as all the orders are in, assistants go to work scheduling all of it and give you a printout of where and when to be places. Also populates the phone app. Can review documents and sign there also, eCheckin at appts, sign disclosures, etc. They even have you go get a photo so they know it’s you they’re talking to.

Research system is also integrated with it, and I met with a research coordinator about providing various stuff to research, which has the added “bonus” I guess you could call it, of you getting notified about anything they find in the research dept — example, anything genetic. Not specifically a genetic test ordered but can be helpful if they see something in it.

Oh, and they’re apparently an HP shop. Haven’t seen a non-HP IT device yet. :)
Click to expand...


That is very cool! An agile approach to medicine where it can really, really help.
 
I've learned that neurosurgeons are particularly sensitive to "brain surgery" jokes.

Bryan may know something different...
 
jsstevens said:
That is very cool! An agile approach to medicine where it can really, really help.
Click to expand...

There’s a really good Ken Burns documentary on the place on PBS streaming if you have that.

They pioneered a lot of things.

I’ve heard one example is labs physically close to ORs. If they’re in there and see something odd, Doc can pick a chunk out and have biopsy results back before they’re stitching you up in some cases. (Probably not neuro. But who knows.)

Wasn’t even the reason they went in there necessarily, but they can have an oncologist notified while you’re still in the OR and see if they want to pull the tumor material or whatever they found, out.

Of course nothing is perfect, but pretty impressive overall.

X-ray has a little dressing chamber with outside and inside door. Outside is the main entrance and exit hallway. Like a car wash. LOL.

Take clothes off as directed, put on paper gown, tech locks the door where your stuff is and hands you the key, you walk another five steps to the device room, click, done. Back into the car wash backward and toss clothes back on and you’re out.

The entire thing is physically designed around getting in and out quick. Like someone actually thought about it. Maybe horse race or dog race starting chutes is a better visual. Ha.

Be interesting to see how they do the tube rides. Not too many ways to speed those up. But clearly they’ve spent real time thinking about how to speed up the time the techs spend.

That said, techs and the doc have already spent more total minutes talking and listening than all the visits back home. Speeding up the menial stuff seems to give them more time for difficult stuff.

Doc saw something on the MRI that nobody else mentioned. “See this here? That’s blood leakage around the problem area. It shouldn’t be there.” It was subtle. But that was her looking at the previous MRIs.

Oh yeah. That’s the other thing. You show up with discs or film or reports from all other docs, they have high speed scanners and DVD readers to suck in all of that into your records. They do however eschew USB sticks which is a bummer since I made a fat one for them. Security problem I suppose. Actually caused a small problem for me since one item I had to log on to another portal to show the doc.
 
denverpilot said:
There’s a really good Ken Burns documentary on the place on PBS streaming if you have that.

They pioneered a lot of things.

I’ve heard one example is labs physically close to ORs. If they’re in there and see something odd, Doc can pick a chunk out and have biopsy results back before they’re stitching you up in some cases. (Probably not neuro. But who knows.)

Wasn’t even the reason they went in there necessarily, but they can have an oncologist notified while you’re still in the OR and see if they want to pull the tumor material or whatever they found, out.

Of course nothing is perfect, but pretty impressive overall.

X-ray has a little dressing chamber with outside and inside door. Outside is the main entrance and exit hallway. Like a car wash. LOL.

Take clothes off as directed, put on paper gown, tech locks the door where your stuff is and hands you the key, you walk another five steps to the device room, click, done. Back into the car wash backward and toss clothes back on and you’re out.

The entire thing is physically designed around getting in and out quick. Like someone actually thought about it. Maybe horse race or dog race starting chutes is a better visual. Ha.

Be interesting to see how they do the tube rides. Not too many ways to speed those up. But clearly they’ve spent real time thinking about how to speed up the time the techs spend.

That said, techs and the doc have already spent more total minutes talking and listening than all the visits back home. Speeding up the menial stuff seems to give them more time for difficult stuff.

Doc saw something on the MRI that nobody else mentioned. “See this here? That’s blood leakage around the problem area. It shouldn’t be there.” It was subtle. But that was her looking at the previous MRIs.

Oh yeah. That’s the other thing. You show up with discs or film or reports from all other docs, they have high speed scanners and DVD readers to suck in all of that into your records. They do however eschew USB sticks which is a bummer since I made a fat one for them. Security problem I suppose. Actually caused a small problem for me since one item I had to log on to another portal to show the doc.
Click to expand...

That just sounds so smart. Very impressive. (And yeah, the USB sticks are a real problem. Since USB lets them load their own drivers-as I'm sure you know in spades-they're a bad risk.)
 
denverpilot said:
Well here we go. Doc says very unlikely it’s MS. Doesn’t look right.

Blood work, full spine MRI, chest X-ray (ruling out sarcoidosis), and yay... another lumbar puncture.

Doc says she has a theory but not fair to say until ruling other stuff out or the theory in.

Also says high chance I’m staying into next week and neurosurgery to get tissue samples.

Won’t know until earliest, Thursday PM. Scheduling conflict may mean next Tuesday AM.
Click to expand...



I hope that the theory is you're suffering from insufficient exposure to high altitude and the problem can be solved by flying more!

Hang in there, Nate.
 
Brad W said:
so for future reference, how would they most likely prefer to receive the files then?
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CD/DVD they import at check in or image uploaded through the patient portal. (Bunch are ok. PDF, TIFF, PNG, etc) through “Message your care team”...

The DVD is interesting considering it’s unfriendly too, but it’s the way most folks show up with imagery I suppose. Sneaker net still rules the day. Just not sticks. LOL. They must trust their anti-virus for discs but not USB sticks.

My pain in the butt was one hospital only offers html and a huge linked zip. So I went to the lab results on my laptop and printed those pages to PDF. Guess what I spent the last half hour doing. LOL. Stupid.

Doc even complained that their import broke all the links to MRI imagery... “That’s why I brought the disc, Doc!” :)

It was listed lab results that got lost in that html to image process. Go figure. :) It’s text.

One place only offered XML. Good lord. I know developers who can’t read those files properly and definitely no imagery attached. Ha.

Medicine needs a standard file type. Not gonna happen, but one can dream. ;)

SOME hospital systems can direct import to Mayo. Mine wasn’t on the list.
 
Great...............now I can’t read this thread without picturing Nate in a paper gown. :)

Hope the all the poking and prodding isn’t too bad and not only do they find something out, but more importantly can fix you up. Good luck!
 
Dave Theisen said:
Great...............now I can’t read this thread without picturing Nate in a paper gown. :)

!
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I honestly almost did a selfie in the mirror just to document the Mayo experience, not to share...

But I seriously looked ridiculous. Like I had one of those toilet seat covers over my head with my pants still on! LOL!
 
denverpilot said:
I honestly almost did a selfie in the mirror just to document the Mayo experience, not to share...

But I seriously looked ridiculous. Like I had one of those toilet seat covers over my head with my pants still on! LOL!
Click to expand...

lmao. the visual. ugh. where is the eye bleach!

Tim
 
21 vials of blood drawn before morning coffee. That should be a crime or something. :)

Slammed buy water bottle and coffee afterward.

Next up, suck out more spinal fluid and probably give me a headache.

As long as I don’t have another CSF leak. Haaaaated that.

Place is amazing. I counted over 150 chairs in the waiting room for phlebotomists. Half full at 7:10 AM. Waited a whopping five minutes.
 
Hope you at least got a nice snack with the coffee. Give you back some energy.
 
Craploads of tests. Nothing conclusive yet. But I know a ton of things I don’t have!

Currently awaiting a CT scan. Started the day with a new full spine MRI.

I always wonder which 80s video game all those noises sound the most like.

Last night after 5 was another brain MRI.

A good friend of mine has dubbed me the “glow in the dark pincushion”. LOL.

Not Leukemia, not HIV (ha), not TB, another negative partial MS result...

Don’t turn on notifications if you’re getting this many tests. Ha. Amazing tech system though. All HP shop.
 
Just to give an idea how fast stuff is. I hit send on the above as they called me in and I’m back in the lobby. CT without contrast, done. LOL.
 
denverpilot said:
Not Leukemia, not HIV (ha), not TB, another negative partial MS result...
Click to expand...

Reminds me of my trip to Costa Rica recently. I checked the CDC website to make sure there weren't any vaccines I should be catching up on before going. This struck me as particularly humorously worded:

CDC Website said:
You can get hepatitis B through sexual contact, contaminated needles, and blood products, so CDC recommends this vaccine if you might have sex with a new partner, get a tattoo or piercing, or have any medical procedures.
Click to expand...

Translation from politically correct to English: If you're going to Costa Rica on a sex vacation, get a Hep B vaccine first.

The real irony there being that I'm pretty sure nobody who would go on such a vacation would check the CDC website to see what they should get vaccinated for ahead of time.
 
Ted DuPuis said:
Translation from politically correct to English: If you're going to Costa Rica on a sex vacation, get a Hep B vaccine first.

The real irony there being that I'm pretty sure nobody who would go on such a vacation would check the CDC website to see what they should get vaccinated for ahead of time.
Click to expand...

LOL. They checked me for Hep B & C again, too. Haha.

I should go count how many tests... :)
 
24 separate test results. And many of those are panels with multiple things inside. Doesn’t include the CT results yet of course.

They also sucked at least four visits to the other neuro in, just gathering history. I can see them as line items but a friend tells me some stuff stays hidden until the follow up visit.

Then you can even look at imagery on your phone if you’re that bored. He says the image viewer user interface may even be better on the phone than desktop.

And for follow up care, any doc can get a login and you can authorize them to pull whatever they want.
 
PaulS said:
Man, fingers crossed it's something stupid that can be easily fixed. Praying for you.
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Even “idiopathic” after proof it’s not something relapsing/remitting or continuously progressing would be okay at this point.

Today we’re consulting with pulmonary to rule out sarcoidosis.

The long list of stuff it isn’t, is helpful!

MRI showed the first sign of improvement of the cord lesion in over a year, so I’ll take it!

I’m not fast but I walked two miles round trip last night and grabbed a walleye sandwich, since it’s Minnesota after all... :)

Weather for here has been excellent. Cold but decent.
 
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