denverpilot
Tied Down
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...
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...
Sorry about all the troubles. 
