Maybe it’s permanent. Grounding that is.

Well they’re chasing a theory, and it’s a wild one... but it showed enough signs of panning out that I’m having a procedure Monday to essentially biopsy a few mildly enlarged lymph nodes near my lungs.

Two pulmonary docs looked over the CT scan after talking to the neurologists first (and for some time) and said there’s enough of a hint there that it’s worth trying.

Especially because neurosurgery to get tissue samples is a hell of a lot more difficult and risky than poking a needle through my esophagus.

Oh and I’ve had a pulmonary function test, an ECG, and another blood test since we last chatted. Haha. Good lord.

Thorough is an understatement around here. ECG was making sure the heart isn’t affected, blood test was a simple one but it wasn’t done earlier and it was just to check again for any sign of infectious activity before sticking needles into my lungs. Kinda important to make sure. :)

Procedure is scheduled for Monday and Karen is coming out so there’s a “responsible adult” here... (finally?)... LOL. Then we see what they find. I suspect if they don’t get it they’ll still want neurosurgeons to go in and as fast as this place is, I bet it’s Thursday or Friday. Crazy.

When they get on a path they sure drive the theory all the way to ground at this place.

There was a tiny scheduling snafu with pulmonary and a thirty second chat with the coordinator fixed it. “Oh. It just won’t allow the appt without the function test. Walk over to that desk over there and see if they can do one today and we’ll get you in.”

Then after the consult it was “It’s Friday at 16:50 but I’m pretty sure I can get the blood test and ECG done so you can have the procedure on Monday. You’ll call the automated system Sunday night for your surgical time. Just wait a sec... okay done. Here’s your appointments and all instructions. Have a nice weekend!”

LOL. It’s insane. In a good way.
 
Half Fast said:
Good thing we have Basic Med now, because this would require one helluva SI.....
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I seriously doubt FAA will like me anymore after this but if it’s what they think it is, there’s at least a chance of significantly lowering the neuro symptoms.

Doc said initial treatment can take two years. But it’s generally effective. It involves an enormous (like s*** ton) of steroids and some steroid enhancer drug perhaps.

His description of it was...

The steroids you had? For the normal version of this we do much more than that. For the neuro version they triple it.
 
denverpilot said:
I seriously doubt FAA will like me anymore after this but if it’s what they think it is, there’s at least a chance of significantly lowering the neuro symptoms.

Doc said initial treatment can take two years. But it’s generally effective. It involves an enormous (like s*** ton) of steroids and some steroid enhancer drug perhaps.

His description of it was...

The steroids you had? For the normal version of this we do much more than that. For the neuro version they triple it.
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Does it mak you turn green and bust out of your, clothes, Mr. Hulk?
 
wsuffa said:
Does it mak you turn green and bust out of your, clothes, Mr. Hulk?
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I was thinking that. I’m waiting for Nate to turn into Hulk Hogan just talking a lot more. ;)
 
wsuffa said:
Does it mak you turn green and bust out of your, clothes, Mr. Hulk?
Click to expand...

Ted DuPuis said:
I was thinking that. I’m waiting for Nate to turn into Hulk Hogan just talking a lot more. ;)
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The other kind of steroids. The kind that gives you high blood sugar and Wilford Brimley “Diabeetus”! LOL.

Riddle me this Batman. A hotel with coin op laundry — with no change machine and a front desk that says they don’t have quarters “unless the manager guy stops by”. LOL.

Off to go wander the hinterlands of the global pandemic searching for silver colored currency, but at least my toilet paper is delivered! Hahaha.
 
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Laundry almost done. Just siting here contemplating my bruises. LOL.

8a780381d60b7b231a4cbfeef3175dde.jpg
 
denverpilot said:
So... if you ever feel unnoticed or unloved...

Just sneeze once in the breakfast room of your hotel these days!

:) :) :)
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As per my Dr "recommendation" at my annual checkup (and absolutely not related to COVID) I got the first of 2 shingles shots on Thursday. The pharmacist started by explaining the side effects...."Hm (I replied) sounds an awfully like COVID-19".
 
murphey said:
As per my Dr "recommendation" at my annual checkup (and absolutely not related to COVID) I got the first of 2 shingles shots on Thursday. The pharmacist started by explaining the side effects...."Hm (I replied) sounds an awfully like COVID-19".
Click to expand...
When I got the second shingles shot, the pharmacist confessed that he was afraid to get them! But I had already had the first shot, and the only reaction was a somewhat sore injection site for a few days. The second shot had even less effect.
 
I’ve had my 2 shingles shots. Same reaction to both: fever and no energy from about the 12 hour mark through 36ish hours. But I had chicken pox twice as a kid and my dr really encouraged me to get them. He claimed around 10% of his shingles patients would up with persistent neurological pain after.
 
It’s interesting what goes through your head when you know you’re immunosuppressed by a bad diagnosis in the modern worldwide fun.

It wavers from “Whatever” to, “This thing will probably kill me.” LOL. Out of my control at this point so, mostly “Whatever”.

Surgery tomorrow around noonish. They’re doing what’s essentially outpatient in the OR just to keep this immune suppressed neuro patient near the emergency folk. Can’t complain, they’re taking every precaution.

I’ll have a sore throat probably, since they’re going in through my throat, so a cough too. That’ll be fun. Scare the crap out of everybody. Then they’ll need more TP. :)

Doc on Friday cracked me up. “This surgery is easy because we already have a hole into your body where we need to go!” They all have been kinda excited about that. They really want to avoid a neurosurgery consult to get a tissue sample. It’s very risky and hard to do.

Kinda hoping they nailed the diagnosis AND it’s in the lymph nodes. Makes moving forward relatively straightforward.

Will let y’all know what they find or don’t.

If they don’t catch it, I’m sure the next discussion is with a neurosurgeon. Mentioning that gives the docs looking at imagery a concerned frown. I get the impression they’re not seeing a good place to snag tissue from that’s inflamed.

They have their first quarantined virus patient here. It has arrived. I’ll know things have really cranked up around here if the helicopter activity increases dramatically I suppose.

Patient visitation has been curtailed for the most part. They’ve decided to tell most visitors to stay away.
 
jsstevens said:
I’ve had my 2 shingles shots. Same reaction to both: fever and no energy from about the 12 hour mark through 36ish hours. But I had chicken pox twice as a kid and my dr really encouraged me to get them. He claimed around 10% of his shingles patients would up with persistent neurological pain after.
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My only reaction is the sore arm. I, too, had chicken pox as a kid. Happy to have the sore arm.
 
Nate,

Your attitude and humor is infectious. May you let it continue spreading...

Tim
 
murphey said:
As per my Dr "recommendation" at my annual checkup (and absolutely not related to COVID) I got the first of 2 shingles shots on Thursday. The pharmacist started by explaining the side effects...."Hm (I replied) sounds an awfully like COVID-19".
Click to expand...

The new Shingrix vaccine raises one hell of an immunological response. It's got recombinant-made viral antigen protein with a adjuvant that enhances your immune response. Boy, does it ever! For me the local reaction was quite large, red, swollen, and painful for a couple of days. That prolly means lots o' good antibodies. The second dose was a bit milder for me and my wife. Should provide lifetime protection, unlike the older Zostavax vaccine.
 
I was told that the second Shingrix shot is pharmaceutically identical to the first. But the reaction to shot #2 is less because you have some immunity from shot #1.

-Skip
 
Hope the recovery from the surgery is going smoothly.
 
Justin M said:
Hope the recovery from the surgery is going smoothly.
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Went fine.

Mayo isn’t taking chances. All pulmonary procedures are being done under general anesthesia, so patients don’t cough in the OR. Even outpatient.

So things were delayed but got er done.

I woke up giggling and loopy and convinced my car keys were missing. I was convincing enough the recovery nurse and Karen went to look for them. Ha.

They were in rye hotel room of course.

Due to delay I hadn’t eaten or drank anything for 24 hours before surgery. Bah. Eating no big deal but was thirsty.

Anyway been back at hotel a while and ordered in. Had a soft omelette and pancakes since throat is sore. They have me a mask so I can cough and not terrify people. LOL.

No pathology report yet. Neuro appt late morning tomorrow.

Surgery running late also meant we missed getting the overnight pulse ox test, so we’ll stay at least one more night.
 
Hoped to have a more official update for y’all tonight but pathology report hasn’t come back yet and might not for a bit. Hard to say.

Neurologist said today virtually everything else has been ruled out and most likely it’s Neurosarcoidosis. Ungodly rare. But as the pulmonary doc said... “Not around here. People come here to find it.”

Treatment is similar depending on if it’s found near lungs or not. Unholy amounts of oral steroids. And close monitoring of reaction by the nervous system. The previous high pulse steroids may also hide it from them.

Right now no direct sign in lung tissue only enlarged lymph nodes they hope have granulomas found via pathology. Either way, treatment starts at home. Plan for a bit of a rough ride on that much steroid. Six months likely, perhaps daily, perhaps every other day. Can last up to two years depending on imagery and how the body reacts to it.

Fairly good likelihood of significant drop in neuro symptoms throughout, with possibly of permanent damage. It’s a “treat and see” but I’ve had good but short positive neuro responses to previous high pulse steroids.

Neuro said it’s likely that pulmonary will take over treatment with neuro consulting. They’ll discuss after pathology goes one way or another. Pulmonary treatment is a slightly different protocol than neuro.

MS diagnosis and treatment was flat wrong. Unfortunately also common. I feel a little bad for my mostly MS doc but the neuro here’s direct words were, “she should have known better”. Tough. Medicine ain’t perfect. And she properly consulted with my other neuro and had said she needed CU to look at me. I hold no ill will to any of the team. Everybody does what they can.

The good news is there’s a treatment plan either way and an incredible number of possibilities were methodically squashed in a massive differential diagnosis work up. Not MS, not cancer, not a huge list of infections... if this diagnosis isn’t right, it’s not for any lack of testing and looking.

Overall, what a place! The bill will probably be impressive, but walking away with a full differential is a huge peace of mind.

Now we wait on pathology. It would strangely be nice to get a solid confirmation but they’re leaning toward not doing neurosurgery to get tissue. It’s just very high risk.

Last thing they want is night study for O2. Have the machine here ready for bedtime. Drop that off tomorrow and then final follow up with pulmonary.

Thanks to all who’ve sent well wishes, prayers, and good vibes. It’s been a hell of a week! Technically I’m still recovering from surgery, but doing fine. Tiny sore throat and was a bit sore last night down lower where they poke through the throat into the lymph nodes. Not sore tonight and no bleeding or problems.
 
overdrive148 said:
What do your flying prospects look like with this possible diagnosis?
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No idea. Probably depends on what the neuro symptoms do after treatment and what damage is done. Since there’s six months to two years ahead on that path... plus physical therapy probably... I’m not focusing on it right now.

@bbchien and our other docs here probably know the official answer but for the moment for me, doesn’t matter.
 
denverpilot said:
Overall, what a place! The bill will probably be impressive, but walking away with a full differential is a huge peace of mind.
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Mayo Clinic is unequaled. Close friend of mine visited several docs in Indiana, was given diagnosis of idiopathic pulmonary fibrosis, along with some very disagreeable medication. After struggling for months with that, and after several recommendations, he and his wife went to Mayo. Completely different outcome -- not a lung problem but a relative of Parkinson's he has, and more manageable at that. They corrected some of his other meds, as well.

You chose wisely. Good luck and my prayers for you added to the many.
 
Well poo. Pathology hasn’t come back and an online discussion with Docs here says it’s likely all outpatient is shutting down for eight weeks at Mayo starting the 23rd.

They may want additional testing after the biopsy but they probably won’t be allowed to see patients. So Doc and I agreed, go home on schedule tomorrow and we will manage additional tests and / or treatment remotely, if Denver facilities don’t follow suit and close.

Go to Mayo, start a pandemic... haha. Story of my life. LOL. :)

Head home, self quarantine. Wear nicotine patches and be a raging ass for a few weeks haha. Good time to kick the bad habit since it isn’t helping. ;)
 
Best wishes on the next step of your journey. Glad it sounds like you see some light. Go mighty-medicine go!

Safe travels!
 
denverpilot said:
No idea. Probably depends on what the neuro symptoms do after treatment and what damage is done. Since there’s six months to two years ahead on that path... plus physical therapy probably... I’m not focusing on it right now.

@bbchien and our other docs here probably know the official answer but for the moment for me, doesn’t matter.
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So far, at least, I don't think I've heard anything on the required SI list for Basic Med. And Sport is still an option. Just don't apply for a fresh 3rd class and risk a denial, and you might still get back in the air a year or two down the road.

I know it's not even on your priority radar at the moment (understandable), but if the thought of flying again helps keep your hopes up, don't write it off.
 
denverpilot said:
Head home, self quarantine. Wear nicotine patches and be a raging ass for a few weeks haha. Good time to kick the bad habit since it isn’t helping. ;)
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Watch the Top Gear segment on the Koenigsegg CCX (or CC2? I forget). Jeremy Clarkson was quitting smoking at the time and the references to it are hilarious.

It’s been a long road, Nate, but it’s very good to hear that a lot of things have been ruled out and you’re very close to a proper diagnosis and treatment!
 
Skip Miller said:
I was told that the second Shingrix shot is pharmaceutically identical to the first. But the reaction to shot #2 is less because you have some immunity from shot #1.

-Skip
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My reaction to shot #2 was identical to #1. Fatigue, feverish feeling, lasting about 24 hours.
 
Nate, good to hear you have a diagnosis and that it is something treatable (and not MS). Like others have said, I don't think there is anything you've been dx'd with that disqualifies you from Basic Med... once you're recovered and feeling up to it. Best of luck.
 
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