I have Neurofibromatosis Type 2 - Ask away

[tigersharkdude]

Ive had a number of people here on Geekhack ask me about various health issues that I have, so without further ado heres a Geekhack Ask Me Anything Ask Away.

Here is an AMA I did on Reddit a while back
https://www.reddit.com/r/IAmA/comments/25uy6f/i_have_neurofibromatosis_type_ii_ama/

A few points

• In short, NF2 causes tumors to grow on nerve endings through out your body, primarily on the brain and brainstem but not limited to those areas
• I was diagnosed with it when I was 9. It is hereditary and was passed on from my father
• The first surgery(s) I had was when I was 10, it was to remove a single tumor from my right Cochlea, which left me deaf in that ear. It ended up being 3 tumors, and this caused complications so I ended up having 3 surgeries (not one surgery per tumor)
• I had another surgery in 2003 (IIRC) to remove 2 tumors from my spine. The surgery went well but a few years later my balance became awful and had to go through nearly a year of physical therapy to regain the ability to walk without assistance
• In 2010 I completely lost my hearing through a tumor "killing" the nerve in my left ear
• In 2010 I went through numerous surgeries (mostly due to complications) to remove the beforementioned tumor
• The above surgery in 2010 had a number of complications; It left me legally blind in my left eye, paralysis on the left side (had about 6 months of PT for this, still not normal though), it left my face nearly completely paralyzed (Cant close either eye, smile, talk normally ... general bs that would come from that)
• NF2 took my father in 2001, and a brother in 2003

Im sure Ive missed a lot, if you have any questions feel free to ask.

[fohat.digs]

That is quite a thing. I was not familiar with it previously. 1 out of 33,000 is pretty rare, at least.

[jaffers]

So you are completely deaf now? That's terrible. What is it like being deaf after you had your hearing? Is there any sound at all, like a ringing or hum or something or is it just quiet.

[demik]

Do you think Richard Sherman will leave the shehawks now that lynch retired?

[tigersharkdude]

That is quite a thing. I was not familiar with it previously. 1 out of 33,000 is pretty rare, at least.

I really find that number low. Minus immediate family I've only met one person with it.

So you are completely deaf now? That's terrible. What is it like being deaf after you had your hearing? Is there any sound at all, like a ringing or hum or something or is it just quiet.

It sucks. I used to be a huge music buff, and loved the sounds of cars (Mazda 787b anyone??).

There is constant ringing, it's actually 3 different pitches that ring together.

[tigersharkdude]

Do you think Richard Sherman will leave the shehawks now that lynch retired?

Its a fine possibility. They tended to play off of each other quite well. I see Sherman leaving the Seahawks and  going to play for the Panthers with a record breaking contract

[sherryton]

Would there be any way to make it possible so that you can hear again? +1 for posting!

[dgneo]

Ive had a number of people here on Geekhack ask me about various health issues that I have, so without further ado heres a Geekhack Ask Me Anything Ask Away.

Here is an AMA I did on Reddit a while back
https://www.reddit.com/r/IAmA/comments/25uy6f/i_have_neurofibromatosis_type_ii_ama/

A few points

• In short, NF2 causes tumors to grow on nerve endings through out your body, primarily on the brain and brainstem but not limited to those areas
• I was diagnosed with it when I was 9. It is hereditary and was passed on from my father
• The first surgery(s) I had was when I was 10, it was to remove a single tumor from my right Cochlea, which left me deaf in that ear. It ended up being 3 tumors, and this caused complications so I ended up having 3 surgeries (not one surgery per tumor)
• I had another surgery in 2003 (IIRC) to remove 2 tumors from my spine. The surgery went well but a few years later my balance became awful and had to go through nearly a year of physical therapy to regain the ability to walk without assistance
• In 2010 I completely lost my hearing through a tumor "killing" the nerve in my left ear
• In 2010 I went through numerous surgeries (mostly due to complications) to remove the beforementioned tumor
• The above surgery in 2010 had a number of complications; It left me legally blind in my left eye, paralysis on the left side (had about 6 months of PT for this, still not normal though), it left my face nearly completely paralyzed (Cant close either eye, smile, talk normally ... general bs that would come from that)
• NF2 took my father in 2001, and a brother in 2003

Im sure Ive missed a lot, if you have any questions feel free to ask.

Have you considered cochlear implants?

[tigersharkdude]

Ive had a number of people here on Geekhack ask me about various health issues that I have, so without further ado heres a Geekhack Ask Me Anything Ask Away.

Here is an AMA I did on Reddit a while back
https://www.reddit.com/r/IAmA/comments/25uy6f/i_have_neurofibromatosis_type_ii_ama/

A few points

• In short, NF2 causes tumors to grow on nerve endings through out your body, primarily on the brain and brainstem but not limited to those areas
• I was diagnosed with it when I was 9. It is hereditary and was passed on from my father
• The first surgery(s) I had was when I was 10, it was to remove a single tumor from my right Cochlea, which left me deaf in that ear. It ended up being 3 tumors, and this caused complications so I ended up having 3 surgeries (not one surgery per tumor)
• I had another surgery in 2003 (IIRC) to remove 2 tumors from my spine. The surgery went well but a few years later my balance became awful and had to go through nearly a year of physical therapy to regain the ability to walk without assistance
• In 2010 I completely lost my hearing through a tumor "killing" the nerve in my left ear
• In 2010 I went through numerous surgeries (mostly due to complications) to remove the beforementioned tumor
• The above surgery in 2010 had a number of complications; It left me legally blind in my left eye, paralysis on the left side (had about 6 months of PT for this, still not normal though), it left my face nearly completely paralyzed (Cant close either eye, smile, talk normally ... general bs that would come from that)
• NF2 took my father in 2001, and a brother in 2003

Im sure Ive missed a lot, if you have any questions feel free to ask.

Have you considered cochlear implants?

No Bueno for me. Both of my cochlea are dead.

I do have an Auditory Brainstem Implant but it didn't work worth a *poo*

[fohat.digs]

I really find that number low. Minus immediate family I've only met one person with it.

Well, it would be only 9,600 people in the entire US, and if they are clustered it is probably only a couple of thousand families.

I love music, too. That must be the worst ....

[tp4tissue]

Can you still play Video Games.. ??

CAN YOU STILL PLAY VIDEO GAMES ??

[tigersharkdude]

Show Image

Can you still play Video Games.. ??

CAN YOU STILL PLAY VIDEO GAMES ??

Why wouldn't I be able to play video games?

[tp4tissue]

Show Image

Why wouldn't I be able to play video games?

Can you still play Video Games.. ??

CAN YOU STILL PLAY VIDEO GAMES ??

Phew...... it's a good thing that we got video games...

Any thoughts on PROfessional  Hearthstone ?

[tigersharkdude]

Show Image

Why wouldn't I be able to play video games?

Can you still play Video Games.. ??

CAN YOU STILL PLAY VIDEO GAMES ??

Phew...... it's a good thing that we got video games...

Totally. Playing racing games really helped me regain muscle control in left hand

[tp4tissue]

Show Image

Why wouldn't I be able to play video games?

Can you still play Video Games.. ??

CAN YOU STILL PLAY VIDEO GAMES ??

Phew...... it's a good thing that we got video games...

Totally. Playing racing games really helped me regain muscle control in left hand

Professional Hearthstone.. what do you think.... 

[FrostyToast]

Is it possible for you to hear via bone conduction?
IIRC some people can be trained to hear through vibrations with their sense of touch like blind people see with sound.

[ANightOnCloudNine]

Holy crap dude props to you with putting up with this. My heart goes out to you.

[tp4tissue]

Is it possible for you to hear via bone conduction?
IIRC some people can be trained to hear through vibrations with their sense of touch like blind people see with sound.

Yea, but then it would only work well when tshardude is stationary ..

If he combined too much motion, he would need to train himself to post process out that stimuli then focus on the one he wants..

And it still wouldn't work for "music" since the music and relevant pitch changes is not designed for bone conduction..

ALTHOUGH... i suppose it could be adapted to fit the resonance potential of bone..  HRmmmmmmm


but what would be the point..


I would vote Tsharkdude become the greatest hearthstone player ever..

[tigersharkdude]

Is it possible for you to hear via bone conduction?
IIRC some people can be trained to hear through vibrations with their sense of touch like blind people see with sound.

Its possible, but I've wasted years of my life trying to change the inevitable. I'm now focusing on learning ASL

[tp4tissue]

Is it possible for you to hear via bone conduction?
IIRC some people can be trained to hear through vibrations with their sense of touch like blind people see with sound.

Its possible, but I've wasted years of my life trying to change the inevitable. I'm now focusing on learning ASL

how fast can you type with your condition TSD, 

[tigersharkdude]

Is it possible for you to hear via bone conduction?
IIRC some people can be trained to hear through vibrations with their sense of touch like blind people see with sound.

Its possible, but I've wasted years of my life trying to change the inevitable. I'm now focusing on learning ASL

how fast can you type with your condition TSD,

Not really sure, I haven't speed tested in a while. I cam type quickly on my phone (with just my right hand). But on desktop I make a decent amount of mistakes with my left hsnd

[tp4tissue]

Is it possible for you to hear via bone conduction?
IIRC some people can be trained to hear through vibrations with their sense of touch like blind people see with sound.

Its possible, but I've wasted years of my life trying to change the inevitable. I'm now focusing on learning ASL

how fast can you type with your condition TSD,

Not really sure, I haven't speed tested in a while. I cam type quickly on my phone (with just my right hand). But on desktop I make a decent amount of mistakes with my left hsnd

Do you think sign language communicates faster than mounting a small display on you some where..  you could become cyborgsharkdude.

[tigersharkdude]

Is it possible for you to hear via bone conduction?
IIRC some people can be trained to hear through vibrations with their sense of touch like blind people see with sound.

Its possible, but I've wasted years of my life trying to change the inevitable. I'm now focusing on learning ASL

how fast can you type with your condition TSD,

Not really sure, I haven't speed tested in a while. I cam type quickly on my phone (with just my right hand). But on desktop I make a decent amount of mistakes with my left hsnd

Do you think sign language communicates faster than mounting a small display on you some where..  you could become cyborgsharkdude.

Much faster. I've seen numerous ppl sign faster than talking

[FrostyToast]

Is it possible for you to hear via bone conduction?
IIRC some people can be trained to hear through vibrations with their sense of touch like blind people see with sound.

Its possible, but I've wasted years of my life trying to change the inevitable. I'm now focusing on learning ASL

how fast can you type with your condition TSD,

Not really sure, I haven't speed tested in a while. I cam type quickly on my phone (with just my right hand). But on desktop I make a decent amount of mistakes with my left hsnd

Do you think sign language communicates faster than mounting a small display on you some where..  you could become cyborgsharkdude.

That would, of course, be easier for translating ideas to others who do not know of ASL, but it wouldn't be helpful for understanding other deaf people using ASL.
He should learn how to communicate with others who are deaf since they should be the ones who understand him best!
And then he can carry around a notebook and pen for daily use.

[tigersharkdude]

Is it possible for you to hear via bone conduction?
IIRC some people can be trained to hear through vibrations with their sense of touch like blind people see with sound.

Its possible, but I've wasted years of my life trying to change the inevitable. I'm now focusing on learning ASL

how fast can you type with your condition TSD,

Not really sure, I haven't speed tested in a while. I cam type quickly on my phone (with just my right hand). But on desktop I make a decent amount of mistakes with my left hsnd

Do you think sign language communicates faster than mounting a small display on you some where..  you could become cyborgsharkdude.

That would, of course, be easier for translating ideas to others who do not know of ASL, but it wouldn't be helpful for understanding other deaf people using ASL.
He should learn how to communicate with others who are deaf since they should be the ones who understand him best!
And then he can carry around a notebook and pen for daily use.

^Android app Cardzilla

[tp4tissue]

Is it possible for you to hear via bone conduction?
IIRC some people can be trained to hear through vibrations with their sense of touch like blind people see with sound.

Its possible, but I've wasted years of my life trying to change the inevitable. I'm now focusing on learning ASL

how fast can you type with your condition TSD,

Not really sure, I haven't speed tested in a while. I cam type quickly on my phone (with just my right hand). But on desktop I make a decent amount of mistakes with my left hsnd

Do you think sign language communicates faster than mounting a small display on you some where..  you could become cyborgsharkdude.

Much faster. I've seen numerous ppl sign faster than talking

Hrrmm..  Here's what I'm wondering TSD

People who do not know Sign language control most of the world's resources..

So, to increase the odds of you yourself getting rich, you'd have to increase communication speed and potential with them.

It may be possible to communicate faster with other signers, but they will not give you access to as great a wealth potential.

So by optimizing for speed for a subset of adept physical communicators,  your Actual total-communication potential does not increase, in fact it narrows, because you would then be inclined to ONLY communicate with those who knew sign-language.  As the acclimation to ASL is a sunk cost, that you would fell dis-inclined to forgo using.. 

[tp4tissue]

I just tried to type one handed..  15wpm (looking at the keyboard)..  very hard to get a reference point for touch typing

[tigersharkdude]

Is it possible for you to hear via bone conduction?
IIRC some people can be trained to hear through vibrations with their sense of touch like blind people see with sound.

Its possible, but I've wasted years of my life trying to change the inevitable. I'm now focusing on learning ASL

how fast can you type with your condition TSD,

Not really sure, I haven't speed tested in a while. I cam type quickly on my phone (with just my right hand). But on desktop I make a decent amount of mistakes with my left hsnd

Do you think sign language communicates faster than mounting a small display on you some where..  you could become cyborgsharkdude.

Much faster. I've seen numerous ppl sign faster than talking

Hrrmm..  Here's what I'm wondering TSD

People who do not know Sign language control most of the world's resources..

So, to increase the odds of you yourself getting rich, you'd have to increase communication speed and potential with them.

It may be possible to communicate faster with other signers, but they will not give you access to as great a wealth potential.

So by optimizing for speed for a subset of adept physical communicators,  your Actual total-communication potential does not increase, in fact it narrows, because you would then be inclined to ONLY communicate with those who knew sign-language.  As the acclimation to ASL is a sunk cost, that you would fell dis-inclined to forgo using..

Why no both ...

[FLFisherman]

What is your current prognosis?

[FrostyToast]

Tp4 have you considered the purely social aspect of being able to communicate with someone who has the same ailment as you?
It's like the preference of geekhackers wanting to talk to fellow keyboard warriors with the same ailment of wallet hack.
It's some form of common ground that, though limited, is more vast than any community you could hope for.

[tp4tissue]

Hrrmm..  Here's what I'm wondering TSD

People who do not know Sign language control most of the world's resources..

So, to increase the odds of you yourself getting rich, you'd have to increase communication speed and potential with them.

It may be possible to communicate faster with other signers, but they will not give you access to as great a wealth potential.

So by optimizing for speed for a subset of adept physical communicators,  your Actual total-communication potential does not increase, in fact it narrows, because you would then be inclined to ONLY communicate with those who knew sign-language.  As the acclimation to ASL is a sunk cost, that you would fell dis-inclined to forgo using..

Why no both ...

not saying you could not.. you absolutely can..

The issue I'm seeing is the 1, time to mastery conflict,  and 2,  if you eventually felt it too cumbersome to do both, and picked the more direct route to communicate with signers

[tp4tissue]

Tp4 have you considered the purely social aspect of being able to communicate with someone who has the same ailment as you?
It's like the preference of geekhackers wanting to talk to fellow keyboard warriors with the same ailment of wallet hack.
It's some form of common ground that, though limited, is more vast than any community you could hope for.

So you're stance is that it's therapeutic to talk to folks who understand..


Yes, that is true.. My concern is, at what point would any such excursions conflict with Tigersharkdude getting rich by playing professional hearthstone.

[Glenmael]

Thank you for sharing this with us all and hats off to you for battling this rare condition, all the very best

[tigersharkdude]

Tp4 have you considered the purely social aspect of being able to communicate with someone who has the same ailment as you?
It's like the preference of geekhackers wanting to talk to fellow keyboard warriors with the same ailment of wallet hack.
It's some form of common ground that, though limited, is more vast than any community you could hope for.

So you're stance is that it's therapeutic to talk to folks who understand..


Yes, that is true.. My concern is, at what point would any such excursions conflict with Tigersharkdude getting rich by playing professional Destiny.

FTFY

[njbair]

Keyboard related question: being deaf, how do you feel about clicky vs. tactile? Does it not matter or can you actually feel a difference?

[tp4tissue]

Tp4 have you considered the purely social aspect of being able to communicate with someone who has the same ailment as you?
It's like the preference of geekhackers wanting to talk to fellow keyboard warriors with the same ailment of wallet hack.
It's some form of common ground that, though limited, is more vast than any community you could hope for.

So you're stance is that it's therapeutic to talk to folks who understand..


Yes, that is true.. My concern is, at what point would any such excursions conflict with Tigersharkdude getting rich by playing professional Destiny.

FTFY

TSD, I hadn't know there was a professional Destiny scene..  But.. here's my pitch for Hearthstone..

PROBABLY m0re geeky females play it than ANY other Vidya on the market..

[MOZ]

Heart goes out to you. You're one strong bugger.

[baldgye]

Show Image

Why wouldn't I be able to play video games?

Can you still play Video Games.. ??

CAN YOU STILL PLAY VIDEO GAMES ??

Phew...... it's a good thing that we got video games...

Totally. Playing racing games really helped me regain muscle control in left hand

What racing games do you play? I'm always looking for someone to chill with in Assetto Corsa and Project Cars

[tigersharkdude]

Show Image

Why wouldn't I be able to play video games?

Can you still play Video Games.. ??

CAN YOU STILL PLAY VIDEO GAMES ??

Phew...... it's a good thing that we got video games...

Totally. Playing racing games really helped me regain muscle control in left hand

What racing games do you play? I'm always looking for someone to chill with in Assetto Corsa and Project Cars

I don't have a graphics card in my pc :(

I play NFS on ps4 and am awaiting the new GT whenever that's supposed to come out

What is your current prognosis?

What is your current prognosis?

NF2 is terminal :(

[FLFisherman]

Show Image

Why wouldn't I be able to play video games?

Can you still play Video Games.. ??

CAN YOU STILL PLAY VIDEO GAMES ??

Phew...... it's a good thing that we got video games...

Totally. Playing racing games really helped me regain muscle control in left hand

What racing games do you play? I'm always looking for someone to chill with in Assetto Corsa and Project Cars

I don't have a graphics card in my pc :(

I play NFS on ps4 and am awaiting the new GT whenever that's supposed to come out

What is your current prognosis?

What is your current prognosis?

NF2 is terminal :(

I am sorry to hear that. :(

I didn't know much about this health issue until reading your post. You've been fighting it for a while though. Isn't there a chance it isn't terminal and can be treated/mitigated?

[tigersharkdude]

^^the only treatment is tumor removal.

[cmadrid]

Sorry you have to deal with all of that. I knew you were deaf, but never knew why!

[baldgye]

Show Image

Why wouldn't I be able to play video games?

Can you still play Video Games.. ??

CAN YOU STILL PLAY VIDEO GAMES ??

Phew...... it's a good thing that we got video games...

Totally. Playing racing games really helped me regain muscle control in left hand

What racing games do you play? I'm always looking for someone to chill with in Assetto Corsa and Project Cars

I don't have a graphics card in my pc :(

I play NFS on ps4 and am awaiting the new GT whenever that's supposed to come out

If you pick up PCars on ps4 let me know, i have it on there too

[Binge]

^^the only treatment is tumor removal.

I take it the surgeries would be expensive and frequent?

[tigersharkdude]

^^the only treatment is tumor removal.

I take it the surgeries would be expensive and frequent?

Expensive? Extremely

Frequent? Tumor removal is usually on the table when they have become large enough to cause issues. So far, Ive had a round of surgeries every 7 years or so.

[Binge]

^^the only treatment is tumor removal.

I take it the surgeries would be expensive and frequent?

Expensive? Extremely

Frequent? Tumor removal is usually on the table when they have become large enough to cause issues. So far, Ive had a round of surgeries every 7 years or so.

You sir, are a badass.

[tigersharkdude]

^^the only treatment is tumor removal.

I take it the surgeries would be expensive and frequent?

Expensive? Extremely

Frequent? Tumor removal is usually on the table when they have become large enough to cause issues. So far, Ive had a round of surgeries every 7 years or so.

You sir, are a badass.

Well I dis stay at a Holiday Inn last night ..

[cmadrid]

And pray to the almighty Thor

[tp4tissue]

^^the only treatment is tumor removal.

I take it the surgeries would be expensive and frequent?

Expensive? Extremely

Frequent? Tumor removal is usually on the table when they have become large enough to cause issues. So far, Ive had a round of surgeries every 7 years or so.

You sir, are a badass.

Well I dis stay at a Holiday Inn last night ..

Did you use their pool?

[tigersharkdude]

^^the only treatment is tumor removal.

I take it the surgeries would be expensive and frequent?

Expensive? Extremely

Frequent? Tumor removal is usually on the table when they have become large enough to cause issues. So far, Ive had a round of surgeries every 7 years or so.

You sir, are a badass.

Well I dis stay at a Holiday Inn last night ..

Did you use their pool?

Indeed I did