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Discussion in 'Medical Topics' started by denverpilot, Dec 14, 2019.
Just make sure it also floats so that it comes with.... a trolling..... motor....
Neuro symptoms eased today and other post-steroid symptoms were at the forefront.
My body has no idea whether to retain water, shed it, or store it in odd places like my entire abdomen after steroids for a while... steroids are like Superman for five days and a week of side effects afterward.
Started out super uncomfortable and ended with Karen’s holiday party that they always schedule after the holidays — the doc takes the staff and spouses to one of the best Greek restaurants in town — and by the end of the day comfortable again... no more bloating or strange joint and other pain from the steroid after effects.
The cod with olives, capers, stewed tomatoes, Greek vegetables and rice was divine. Karen had the lamb chops. And baklava for dessert with some Greek yogurt and honey. Mmmm.
No complaints ending a Saturday where I felt like I could barely wobble around from retaining water to start with, with such a nice dinner and company at the end.
Karen refuses to use the automation in the Subaru. She says she’s enjoying driving it too much. Heh. My kind of girl!
There’s an upscale hair salon near the Greek place that I’m sure is $100 a haircut. Name is “Scissors and Scotch”. Brilliant! Wonder if I walked in and asked for my usual buzz cut if they’d kick me out and tell me to go do it myself with a Miller Lite?
I haven’t been around here or Facebook as much lately. So I’ve completely missed this news. Damn, man. This sucks. But I can tell from your words that you’re handling it about as week as it can be handled.
Thanks for keeping us updated. And for being open about it. Hopefully somebody with symptoms may read this and might catch theirs early.
I’m pulling for you, my friend.
Good luck with the LP, Nate. They aren't half as bad as advertised... unless you get the low pressure headache afterward. In that case you report back ASAP for a blood patch. Much worse than the LP itself... but fortunately not common.
Lumbar puncture scheduled for the 31st...
No idea how long the entire battery of tests takes after that. We shall see...
Haven’t heard from the University docs yet on the second opinion or if they’ll want me to visit in person. They’ll probably want that after the LP results are back.
Physical therapist worked on hip muscles today. Oof. That’s work!
Puncture is supposed to be today. Hope you're doing ok Nate!
Spinal tap was surprisingly simple. Aided by the fact that the small of my back has been numb for months. Ha.
Doc doing the LP agreed after looking at my stuff that this is a hunt for something weird. He said it doesn’t look right to him for MS but sees why we’d be treating it as that or NMO so far. And that the CSF tests should give clues.
He took a lot of CSF. Said safe to take 30-40 ml , most docs take 8, he always takes 12, and for me with so many possible tests, 16. I got to see it in the vials. Totally clear and just looks like water. He said mine was extremely sluggish coming out. Of course. Because I always have to be weird.
Took a few minutes and if I’m guessing right he had to repoke me. He didn’t say. He just said he was “using all of his tricks”. LOL.
No signs of headache or leaks. He said leaks are far more common in teens and 20s, that or older people are asymptomatic with small leaks, they’re not truly sure.
Also no lying around for an hour afterward. He said protocol just changed on that six months ago. Some smart docs did a blind study of people who laid on their back for an hour and people who just got up and left while taking it easy, and no statistical difference in outcomes. Cool. Math.
He called the fluoroscopy “cheating” and the cool photos of the needle right near my spinal cord. Surprising amount of room in there actually even if I know it’s just millimeters.
Oh forgot. Only time a doc has ever said caffeine is good. Well if you get a leak headache that is. Told me to slam caffeine and call their special number.
Also learned that CSF turns over three to four times per day. I did not know this.
Oh and for those playing along at home, the lab said about eight days for initial results with the serum MS band test being shipped out to another lab so a few more days on that one.
I still think you need House.
If I get a cane and a vial that says Vicodin on it I think I can pull it off.
It's not lupus.
It could be, actually. LOL. But that’s hilarious.
Apparently House’s writers did have Transverse Myelitis in one of the show’s differential diagnosis sessions but it wasn’t what the patient had. Haha.
Which is extra funny because TM is rather obvious on an MRI. Oh look the spinal cord is twice it’s normal size. Better put that one on the whiteboard! LOL.
Here’s just one example of the insanity neurologists have to deal with when diagnosing this type of thing... just a summary paper of what to check for that presents like MS but isn’t MS...
I found a flowchart of this differential diagnosis tree once. It’s freaking enormous. Neuros are an interesting breed.
One example where a computer can help; but also hinder because it likes things in black and white and not everything is...
Good you pushed on the docs, Nate.....
Hope today is a comfortable one for you.
I have no idea why it attached my previous (a couple of days ago) image into my comment. I'm kinda curious if it will display in this reply.
Edit: I guess not.
Edit2: I tried to edit the post with the spurious image and I didn't see it.
Edit3: Oh, now I see I can remove it after all. I think I will and delete this post.
Edit4: Or not.
So far so good.
I appear to have a cold now, because ... hospitals... so I’ll have to keep an eye on that for respiratory infection... which also means I have a tiny headache that is NOT positional, but made me wonder when I woke up. Ha.
Light cough, sitting here enjoying my usual morning caffeine, er... coffee. LOL.
Really good sleep lately which is honestly somewhat odd for me, but I spent a week in the eastern time zone so that shoved the body clock backward nicely, I guess.
You know you’ve had an arm and hand tremor for a while when someone else points it out (the LP Doc) and you didn’t even notice it.
“I saw your forearm twitching.”
“Yeah it does that.”
Good to hear things are (mostly - colds suck!) okay. There was a thread where someone was asking for PC advice and someone mentioned Apple. You never responded with guns blazing so I thought maybe something was wrong. Heh!
Probably on the beach in Honduras (Roatan) or abusing my eardrums on our Rock music cruise. LOL.
Trip was great. Doc cleared me to go and prescribed heavy oral steroids if something went neurologically haywire along with an admonition to put my ass on an airplane back to the States if I had to start taking them.
Used a cane the entire time mostly for balance. Boats move. Ha. But it was used quite a bit to pound on the deck in lieu of applause too. Haha.
They made these warning signs just for me, I joked...
Had a good t-shirt for the space themed first night sail away show. LOL. Photo taken in the Uber on the way to the boat.
Last Monday. Didn’t suck.
The band Red Wanting Blue has a great song called “Finger in the Air”.
You won’t have to guess which finger with this photo. LOL. Not my photo, I’m back and to the right of the photographer. With the appropriate appendage held aloft...
Bah humbug. The headache is mild but definitely positional.
Morning caffeine and see what it does...
Because of course... I would statistically be an 18-30 year old female.
LOL. I’ve figured out why the stats are that way.
Nearly 50 year old guys are like, “I don’t want to go back to that damned hospital for a little headache...” haha.
I’m with ya, brother. Statistically I’m also female, age 15 - 40. (Autoimmune liver disease)
Yep, lots of possible confounders that can skew the stats.
I think I said the blood patch was worse than the puncture itself, but it still wasn't too bad. Worst thing was the hit to my pocketbook (20% co-insurance on basically everything, and of course the hospital charges at the highest rate).
Best to get 'er done...
Well we ended up paging the on call Doc around noon because they wanted to be notified of any worsening headache.
Same doc who did the procedure was on call. He asked about severity and said give it another day. If bad this morning later, call and they’d do the patch.
3AM. Can’t sleep since all I’ve done is nap all weekend (not much else to do lying on your back) and I get up and it’s gone.
So... I’ll be all better just in time for the weather to go from 75F daytime high to a predicted -1F nighttime low by Tues night. LOL.
A couple of the tests came back already. Only thing out of whack is the inflammation marker. Duh.
So far, useless info. Oh well. Wait and see what the rest of them show...
The headache was positional and moved mostly to my neck. Went away last night. Came back at around 11.
Comedy of errors trying to reach docs today. Doc wants to wait one more day if I can lie around since blood patch has some infection risk and I’m immunosuppressed.
Caffeine really does help. Wow.
Tired of laying around. Also lack of movement isn’t helping right leg any.
I love when a new doc calls who’s just seen my MRIs for the first time... “well I can’t say anything about whether those other symptoms are related since your entire electrical system is messed up, but here’s the two things that would worry me...”
LOL. Thanks doc. That’s all I needed to know. There’s no such thing as “normal” around here anymore so I don’t usually know either!
By the way it was:
- It’s been enough days if it stays very positional.. stand up bad, lay down good...
- Any sign of infection, fever, etc.
Yes to the former, no to the latter.
He said with the infection risk if I could stand lying around for one more evening and night to see if headache/neck ache stops on it’s own that’s the most conservative. Otherwise they’ll be happy to patch me up tomorrow.
Well hmm... got the annual email...
“Colorado Pilots Association - Membership Renewal”
That’s a tough one.
Have to ask yourself if it’s worth it when you’re dealing with a major medical issue...
Certainly no time for meetings and I really don’t need the roster or the newsletter...
As the meme says, “Change my mind.”
If being involved with the CPA people helps give you a good day or more, and keeps your mind off the health stuff for a while, then it’s worth it. As my wife’s health and capabilities have deteriorated, she stays in contact with those that give her support and enjoyment of the time in contact. Those that generated more friction than enjoyment, were slowly dropped from her communications.
Honestly I don’t really know that many local pilots because of, or through, CPA... other than a few good mountain CFIs I would already stay in touch with via other means.
The newsletter is/was mostly written by someone who’s here.
Have met far more people in person in CO via this site than CPA.
It’s really the mountain flying course that held the deepest value from that organization for me, and I want to support that as much as possible.
Will think about it some more.
I've started thinking about what these associations do for me. What am I buying? The money is no big deal, but if I'm not getting something of value with it, why bother? I've dropped one to which I was a member for decades.
Well chalk up another new experience... I gave up on the headache when I started noticing low end hearing loss in my left ear last night.
One ER visit and a blood patch later, no headache and the hearing came back overnight.
ER doc confirmed the neuro stuck me twice and probably the “trick” to get my sluggish CSF was a honking huge needle, so... leak.
Now I have to take it easy for a few days.
Funny part was when he told me to tell him when I felt “pressure” when he was putting my own blood back in me. “I rarely feel anything down there doc, but I’ll let ya know if I do!”
20cc ... ha. Didn’t even feel it. That’s a lot of blood.
ER anesthesiologist... he laughed that the neuros use fluoroscopy... “definitely cheating”.
“They use huge needles and then you end up visiting me for a blood patch!” Hahaha.
I also had an audience. A trainee nurse following another RN who had never seen a lumbar puncture. They were fascinated and talking the whole time. “Oh that’s soooo coooool!” Lol.
Always happy to help with training!
Blood Patch was my band name in high school.
LOL! Wouldn’t be a bad band name.
Sooooooo bored. Basically went from getting back from an awesome trip of daily multiple concerts and a couple of opportunities to hit a beach with perfect beach weather...
To lying around on my back at the house for days on end. LOL.
Stupid tests better find something! Karen and I were joking just this morning that after all this “drama” they probably won’t. Hahah.
Today is her day off so she’s been binging the PBS show “Poldark”. Not bad. I keep lying down to watch some stupid YouTube stuff and falling asleep in between catching part of her episode binge. Ha.
I said “stupid” YouTube stuff but I did run across this almost three hour long discussion by one of my favorite naval history guys and a historical aircraft expert about the Japanese Zero...
I would keep up the CPA membership, you aren't feeling well now, but hopefully when you are feeling better you can stop in and hang, if they do that. I joined an EAA chapter that's pretty active. Great mix of pilots, most fly, some don't but it's great to be around people with a common interest. Hopefully this will get sorted and you feel better in the near future.
Hi Nate! Glad to hear the headache is gone and the hearing has returned. Hope you can get back on your feet and less bored soon.