Grounded indefinitely

Discussion in 'Hangar Talk' started by denverpilot, Jul 14, 2019.

  1. denverpilot

    denverpilot Tied Down

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    Haven’t posted here in a long time for ... reasons... but realized there’s a few friends here who don’t do Facebook or any of the other places I hang out.

    This is the shortest version of this I can manage. Been posting some longer stuff on FB once I realized there was little concern about even being able to fly, let alone get a medical renewal.

    Yes, have been in contact with Bruce throughout the whole thing. He’s provided solid advice and even some predictions that were eerily accurate. It’s clear he knows his stuff and has been doing his profession for a long time.

    Been essentially grounded this entire year. Did fly one flight I think during a period where symptoms were very low and I thought improving. What’s going on...

    Sept last year, lower back issues. Diagnosed as possible slipped disc. Unknown if related to what’s going on now but was how I ended up tied at the hip to an orthopedic surgeon and his great physical therapy staff. Also found oddball liver numbers and other numbers. Later determined to be sensitivity to ibuprofen and NSAIDs. Never been a fan of drugs but the back thing had me taking max “safe” dosage for ibuprofen. For me, it wasn’t. All has gone back to normal there, since March.

    Christmas 2018: Started having odd small neurological symptoms in arms and hands. Burning sensation on top outside of arms, numbness, tingling, burning, and such in hands.

    MRI in late December showed moderate spinal stenosis in cervical spine mainly centered on C5-C6.

    Physical therapy starts back up. PT starts struggling wjth constantly changing neck, back, shoulder, and arm symptoms. Very frustrating for him as a good neck and back specialist.

    Along the way ortho starts talking about doing neck surgery but neuro symptoms start showing up in thighs and feet. Numbness to light touch sensors. Ortho wants to rule out peripheral neuropathy even though A1C and such don’t show diabetes. Neurologist referral and ECG/NCS tests. Strangely these come back negative indicating spine and central nervous system involvement.

    Eventually (with a little poke from Bruce who reminded me I would need to anyway) not long after I schedule to do a formal office visit with neurological diagnosis specialist who did the other tests. At this point ortho is starting to talk about a disc replacement with an artificial disc at C5-C6.

    Neurologist does an analysis and orders another MRI.

    MRI is on a Thursday. Friday morning I get a call asking if I can come over immediately to see the neurologist during his lunch hour the day before he leaves for vacation. Well crap, that can’t be good news.

    Meet with him and he says MRI shows a large spinal cord inflammation area and some possible damage from C2 down to nearly T1. The official starting diagnosis is “acute longitudinally extensive transverse myelitis”.

    He also orders an immediate round of mass IV corticosteroids which I learn later is a fairly mandatory initial treatment for some nasty possibilities with autoimmune diseases including things like MS. Basically it’s to smack down all inflammation in the body and stop the immune system cold from attacking your own cells, in this case, spinal cord nerve cells. The treatment also gives some time in case any of these sorts of disorders have a tendency to relapse quickly. This time is used for some other tests.

    Doc says, “You have something going on in your central nervous system and by the MRI imagery it’s not going to be any disease you’ve ever heard of. It’ll be similar to MS, but not Parkinsons or other common ones you know of.”

    He sets up a referral to the office’s MS and CNS specialist doc two weeks out and tells me to get the steroids done ASAP. That takes a few days, done.

    Meanwhile blood tests all come back negative including some for some really nasty stuff. I think this means I’m out of the woods for those. Still, I’m reading about all of them. None of them sound nice.

    Meet with second neuro. She’s really good. Started one of the major metro area MS clinics many years ago. She drops the whopper...

    Even though you tested negative for antibodies for Neuromyelitis Optica, there is an anti-body free version of it, especially during time periods between attacks... and because it’s so dangerous for paralysis and even death, we must treat you as if that was the cause of this attack because that’s the closest thing we have to your imagery. You’re being placed on an older MS drug by infusion every six months that keeps relapse attacks of NMO symptoms lower and can possibly even stop them. Your neurological symptoms are stable and if there’s any sign of change at this point you need to beeline it for an ER, tell them you’re an NMO patient, page the neurologist on call, and have them start you on IV steroids immediately and have them contact us. Your symptoms likely will not change much and if they do it will be slow. The pain symptoms now mean we talk about long term nerve pain management.”

    Anyway there’s more to this story, but the hand pain is the major “shouldn’t fly” symptom, along with the drugs they want to try all having various levels of FAA “no go” attached to them. (Some okay after not being on them for days, others worse.)

    Thumbs are not as affected as anything else in the hands. This makes typing this possible. Regular keyboards are torture at times. Drugs are managing that and after a couple of weeks of no work it was so bad, typing on a normal keyboard, I’m back to a solid five hour capacity for that, more if I push it, with pain meds done correctly at the right times of day and dosage. Driving kinda sucks when it’s bad, not awful at other times.

    There’s also leg involvement, feet, small of back, and buttocks, all of which is mostly numbness. And very minor bladder and bowel symptoms (not being helped by the pain meds).

    So... there’s the story. Unconfirmed anti-body free NMO, and a large area of transverse myelitis in the spinal cord in most of the neck, and a whole lot of waiting to see what changes. New MRI in 6-9 months.

    Possibilities include everything from “we don’t know, could have been viral or an infection and no more damage will occur” all the way to a massive NMO attack leading to paralysis or death.

    In *confirmed* NMO, it attacks females far worse than males, but everyone ranges from relatively major but non-life or mobility neurological symptoms like mine, to paralysis of all four limbs and eyesight loss in rapid timeframes. Also in confirmed NMO cases, some studies have shown the five year mortality rate to hit 40%. The vast majority of those, females.

    A fairly common change in diagnosis *if changes are seen in brain or spinal MRI* is finding additional lesions and receiving a solid MS diagnosis. But 60% of TM patients never get a cause.

    The downside of not knowing is the immune suppressant drug has to be administered for at least two years, you have to decide whether or not to continue it for another two-three years. Relapse of NMO can still occur for a lifetime.

    So there you have it. Not flying and mostly just concentrating on my own health first and lifestyle changes and adapting to the hand issues right now, which is going as good as can be expected with spinal cord damage. Way better than LOTS of people with TM or NMO diagnoses. WAY better.

    Airplane is still co-owned and being flown. No intention of bailing out for at least two years.

    Do miss flying a lot but also very happy I completed the lifelong dream of earning the CFI SE and ME. Really glad I didn’t save the CFI flying for “someday when I retire”. There’s no guarantees at this point that I’ll be flying again.

    Bruce has been wonderful throughout and almost seemingly clairvoyant in his e-mails predicting what the next likely event would be.

    If... it turns into a confirmed NMO case, there’s roughly only 1400 a year in the US, and 80% plus are females. I’d be in a group of males of less than 300 a year diagnosed with it.

    That’s all I’ve got for now. Ask any questions you feel like asking. I do appreciate tons of people who’ve reached out and said they’re sorry I’m going through it, etc. Always appreciated, but I’m honestly mentally in a pretty good place. This could have been so much worse.

    Honestly I was raised that nobody ever promised anyone a rose garden. And within this disorder spectrum I’m really doing great. This stuff kills people sometimes in two weeks from initial attack. It can be that wicked.

    Anyway. Love ya all, truly. Have been reading PoA while not posting and sneaking in a number of “likes”. And I want to admonish everyone... don’t put off anything you want to do for “someday”.

    Go do it.

    I had my wake up call when my dad passed away early of a brain stem stroke at 61. I got after the Commercial and CFI. I got them done before this major grounding.

    Truly I’m good. Very happy to be here and still upright, no wheelchair and not dead! We’ll take it a step at a time from here. Good docs.

    Oh guess I should mention. No cure for NMO. The same for MS but decent treatment options these days.

    And the 60% unknown? Who knows...
     
  2. 455 Bravo Uniform

    455 Bravo Uniform En-Route

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    Really glad to see you back here. You don’t need to fly to be welcome here! Missed you. Sorry to hear about all this, but you have a great attitude. Stay strong.
     
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  3. Velocity173

    Velocity173 Touchdown! Greaser!

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    Wow, sorry to hear Nate. Never even heard of NMO. Stay positive and hopefully the treatments will make the symptoms more manageable. Good luck to ya.
     
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  4. Sinistar

    Sinistar En-Route

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    Thanks for sharing Nate! Your health and family gotta come first.
     
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  5. Palmpilot

    Palmpilot Touchdown! Greaser!

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    Good to hear from you again. :) Sorry about all the troubles. :(
     
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  6. wayne

    wayne Cleared for Takeoff

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    Damn. Sorry to hear that. Best wishes going forward.



    Wayne
     
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  7. Ghery

    Ghery Final Approach

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    Like the others, I've never heard of NMO before. Obviously, health before flying. Keep up the good fight and don't be such a stranger around POA. We're all here for you.
     
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  8. AggieMike88

    AggieMike88 Touchdown! Greaser!

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    The original "I don't know it all" of aviation.
    Glad to see you active here!

    If there is anything I can do from my corner of Texas, let me know!
     
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  9. Pilawt

    Pilawt Final Approach PoA Supporter

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    Thanks for letting us know, Nate. Our prayers are with you.
     
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  10. GRG55

    GRG55 Final Approach

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    Oh my goodness Nate. We missed you, and we were hoping it was just a voluntary sabbatical that was keeping you away, and not something more serious.
    Good to know you've been working through this methodically, systematically and with good advice.
    We're glad to hear you didn't ignore the early symptoms and got on it aggressively right away.
    We are pulling for you man! And wishing the best for you and Karen, both.
     
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  11. Half Fast

    Half Fast En-Route

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    Thoughts and prayers, Nate. Sounds like you’re winning the attitude part of the battle, and that’s often the toughest part.

    What immunosuppressant are you on? When I was first diagnosed with my autoimmune disorder (liver) my doc immediately put me on prednisone. Over about nine months he transitioned me to azathioprene.

    Hang in there, brother. Glad to see you on the forum again. Hope you’ll stick around.
     
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  12. overdrive148

    overdrive148 En-Route

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    Of course the first post he makes back to the forum in a while is 7 pages long... :eek:

    Wishing you the best, Nate! You have been sorely missed and I hope things improve for you.
     
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  13. luvflyin

    luvflyin Final Approach

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    Oh, you had to do that with just your thumbs. I was wondering why it was so short;):D:). I’m having positive waves for you.
     
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  14. denverpilot

    denverpilot Tied Down

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    Not on it yet, but it’s rituximab, and they’re still in the process explaining to the insurance company that it’s a standard treatment for NMO. It’s off-label as they say, since there’s so few NMO patients, it’s VERY hard to get FDA approval for any drug, and yet I see that just last week, a drug WAS approved under the “orphan drug” rules.

    Insurance companies are confused by NMO specific prescriptions because they’ll ask questions like “What else has been tried for your MS?” when they see certain drugs. It’s apparently a very common problem for all sorts of rare diseases where drugs are used “off-label” as the best option anyone has yet found.

    Know all about prednisone though. Thats essentially the same corticosteroid I was given in mass quantity intravenously. Solu-medrol.

    You can do the math for your weight, but my dosage was 1 *gram* per kg. You can look up how that calculates into actual dosage, but it was huge. Apparently it’s difficult to get drugs into your spine so you get “soaked”. It was that dosage for three days straight.

    The side effects of that much steroid had me all sorts of panicked a few days later. Ha. One day I was insanely retaining water, then had chest tightness which turns out was actually muscular and common for cervical spine neuro patients (feels like someone wrapped a rope around you just above the belly and tightened it with a winch and won’t let it loose) and then drank more water and peed for nearly three hours straight.

    The next morning talking to Karen in the kitchen on her Wednesday day off, with fully tightened belt on the last notch, my pants fell off. Hahaha. Now I was dehydrated. Hilarious though. She asks, “Did you do that?” “Nope...” Hahaha.

    Anyway the call from the neurologist’s assistant was funny. Remember they had me come in over lunch and they didn’t have proper time to warm me about the side effects. She laughs and puts on her grandmotherly voice... “Ohhh honey. You poor dear. We’ll get you through this. Let me talk to the other doc about getting your pain meds started. Just hang in there for one more week. Here’s the stuff you’d go to the ER for... otherwise, we gave you a LOT of steroids!”

    So it’s had some pretty funny moments for something so serious. Plus you just have to laugh at yourself if your pants fall off in your own kitchen!
     
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  15. Skyrys62

    Skyrys62 En-Route

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    So sorry to hear of those troubles Nate. I wish you the best of care, and love from your friends and family.
    Even though you may not be PIC for a while, you can still get a ride to a fly-in or two and look at our motley mugs.

    And if you want a drink, we promise to help pour it down ;)

    (but you have to keep your pants on!)

    Well, cargo shorts in this case...
     
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  16. Stingray Don

    Stingray Don En-Route

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    Very sorry to hear that Nate. Your presence has been missed here. Thoughts and prayers for a positive outcome.
     
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  17. denverpilot

    denverpilot Tied Down

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    I think I’m supposed to avoid alcohol on one of the drugs I’m on. Which is not a big deal for me but once in a while you think “a beer would go good with this burger” and then decide that might not be a good idea with the already seen tendency for my sissy liver to get all distressed. Haha.

    (That was another slowdown in the process. We chased the path to see if it was gall stones/bladder and had a whole abdomen look at every major organ with an ultrasound machine... nothing found amiss...)

    For someone who never took drugs if I could avoid them for nearly anything, it’s weird to be in the land of multiple drugs and checking for interactions and such, even though I trust the pharmacy... a minor but important pain in the butt any time something new is mentioned.

    They wanted to offer a muscle relaxant for that squeeze sensation in the thighs and I was thinking, synthetic opioid plus muscle relaxant... hmmm... that sounds like it would pretty much turn me into a drooling idiot for a few hours. It would work but no thanks. Ha.
     
  18. Kenny Phillips

    Kenny Phillips En-Route

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    I will chip in ten bucks for suspenders, to prevent public embarrassment.
    I wish you well on your health, um, safari. I confess that reading these things makes me feel every ache, pain, and twinge twice as much.
     
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  19. Sac Arrow

    Sac Arrow Touchdown! Greaser!

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    Wow, sorry to hear about all of that. I hope things improve.
     
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  20. denverpilot

    denverpilot Tied Down

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    I think the monkey did it! LOL. :)
     
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  21. AggieMike88

    AggieMike88 Touchdown! Greaser!

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    Speaking of Monkey.... if you want him to keep you company, he's currently terrorizing my house.
     
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  22. PaulS

    PaulS Final Approach

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    Damn Nate, sorry for the issues, sounds like you are getting great care, I predict more flying (solo) in your future. Get better quickly.
     
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  23. denverpilot

    denverpilot Tied Down

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    That would be up to whoever’s flying him around these days. Ha. Then he’s stuck here until someone else comes and gets him. :)

    Never did manage to take him shooting... lol.
     
  24. PeterNSteinmetz

    PeterNSteinmetz Cleared for Takeoff

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    Sorry to hear of all these troubles. I read with great interest your posts on your training. Thanks for posting to remind us all to use every day well. Best wishes for your health and recovery.
     
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  25. RJM62

    RJM62 Touchdown! Greaser!

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    Welcome back.

    I'm glad you're in good spirits, even if less-than-perfect health. The mental and emotional aspects of this sort if thing can be as bad as the physical symptoms. I had to go through many of the tests you mentioned twice to rule out MS and other autoimmune sorts of things that might have been behind symptoms I was experiencing. Both times the results were negative, but waiting for the results was emotionally draining.

    Prayers and best wishes for a full recovery.

    Rich
     
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  26. benyflyguy

    benyflyguy Pattern Altitude

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    Wow. Tough to hear. God bless. Sage advice about “ getting it done”.
    Hope you got some buds to get you up in the right seat just to be up in the air- very therapeutic even if not pic.
    Sounds like you have a great med crew behind you.
     
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  27. AggieMike88

    AggieMike88 Touchdown! Greaser!

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    The original "I don't know it all" of aviation.
    As ammo or the target?
     
  28. Clip4

    Clip4 Final Approach

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    You might have really good MDs and they may have the diagnosis spot on. I am not suggesting you have an incorrect diagnosis, but I would investigate who the very best in the US are for your health issues and get a second opinion.
     
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  29. TCABM

    TCABM Cleared for Takeoff

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    I don’t know what to say, Nate. I’m glad your met your aviation goals, and even happier your taking care of your health.

    Whatever it is, kick it’s ass.
     
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  30. SkyDog58

    SkyDog58 Touchdown! Greaser! PoA Supporter

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    My thoughts are with you Nate. Best wishes.
     
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  31. jordane93

    jordane93 Final Approach

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    O man. I’m rooting for you! You got this. Welcome back!
     
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  32. 1RTK1

    1RTK1 Cleared for Takeoff

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    Missed reading your posts Nate, glad you are back, thoughts and prayers for ya. Hang in there.
     
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  33. Van Johnston

    Van Johnston Cleared for Takeoff

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    On the one hand, I did not enjoy reading this.

    On the other hand, it was very good to see and read your writing again Nate. I hope you will continue to let us share in your journey this way.
     
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  34. wsuffa

    wsuffa Touchdown! Greaser!

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    Ouch Nate. Wishing for the best. I have a friend that has MS. It is a nasty disease. This would classify as being "close enough" to be the same.
     
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  35. BrianNC

    BrianNC En-Route

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    Sorry to hear about this Nate. I'll be praying for you.

    You can still instruct without a medical (not sure if you still have it or not) though as long as not PIC or required crew member, correct?
     
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  36. asicer

    asicer Final Approach

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    Ouch. We really feel for you, missed you lots, grateful for the update and hope things go better for you!
     
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  37. Jumpmaster

    Jumpmaster Pre-takeoff checklist

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    Very sorry to hear about your medical issues. The fortunate aspect of this is that it sounds like you are getting excellent medical care and hopefully better days are ahead for you. Prayers to you and your family during this season of difficulties.
     
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  38. Arbiter419

    Arbiter419 Cleared for Takeoff

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    Dang Nate, really sorry to hear that. If you're able and willing and end up near south central PA/northern MD we can do some soaring if you're interested...if you're really lucky I could get in you in a work plane, PA46 or a PC12. Hoping for the best.
     
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  39. SToL

    SToL Line Up and Wait

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    So that's where you went... I've been wondering what happened to you.

    Prayers and well wishes coming at you, brace yourself. If you want to go fly sometime or just want to chat, I'm at Centennial and have a fairly easy schedule with work.

    PJ
     
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  40. idahoflier

    idahoflier Line Up and Wait

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    Sorry to hear, glad you're in good spirits and will see this through. Best wishes!
     
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