geekhack

geekhack Community => Off Topic => Topic started by: tigersharkdude on Mon, 08 February 2016, 15:21:22

Title: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Mon, 08 February 2016, 15:21:22
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

Im sure Ive missed a lot, if you have any questions feel free to ask.
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: fohat.digs on Mon, 08 February 2016, 16:09:48
That is quite a thing. I was not familiar with it previously. 1 out of 33,000 is pretty rare, at least.
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: jaffers on Mon, 08 February 2016, 16:12:31
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.
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: demik on Mon, 08 February 2016, 16:17:08
Do you think Richard Sherman will leave the shehawks now that lynch retired?
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Mon, 08 February 2016, 16:20:18
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.
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Mon, 08 February 2016, 16:23:26
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
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: sherryton on Mon, 08 February 2016, 16:27:49
Would there be any way to make it possible so that you can hear again? +1 for posting!
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: dgneo on Mon, 08 February 2016, 16:30:24
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?
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Mon, 08 February 2016, 16:32:16
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*
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: fohat.digs on Mon, 08 February 2016, 17:21:00

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 ....
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tp4tissue on Mon, 08 February 2016, 19:11:41
(http://i.imgur.com/l7cRf3W.gif)

Can you still play Video Games.. ??

CAN YOU STILL PLAY VIDEO GAMES ??
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Mon, 08 February 2016, 19:15:55
Show Image
(http://i.imgur.com/l7cRf3W.gif)


Can you still play Video Games.. ??

CAN YOU STILL PLAY VIDEO GAMES ??

Why wouldn't I be able to play video games?
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tp4tissue on Mon, 08 February 2016, 19:16:37
Show Image
(http://i.imgur.com/l7cRf3W.gif)


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 ?
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Mon, 08 February 2016, 19:17:35
Show Image
(http://i.imgur.com/l7cRf3W.gif)


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
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tp4tissue on Mon, 08 February 2016, 19:18:56
Show Image
(http://i.imgur.com/l7cRf3W.gif)


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.... 
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: FrostyToast on Mon, 08 February 2016, 19:20:05
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.
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: ANightOnCloudNine on Mon, 08 February 2016, 19:26:28
Holy crap dude props to you with putting up with this. My heart goes out to you.
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tp4tissue on Mon, 08 February 2016, 19:27:26
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..
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Mon, 08 February 2016, 19:27:44
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
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tp4tissue on Mon, 08 February 2016, 19:29:07
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, 
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Mon, 08 February 2016, 19:30:29
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
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tp4tissue on Mon, 08 February 2016, 19:32:00
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.
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Mon, 08 February 2016, 19:36:00
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
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: FrostyToast on Mon, 08 February 2016, 19:36:35
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.
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Mon, 08 February 2016, 19:39:06
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
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tp4tissue on Mon, 08 February 2016, 19:43:52
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.. 


Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tp4tissue on Mon, 08 February 2016, 19:46:54
I just tried to type one handed..  15wpm (looking at the keyboard)..  very hard to get a reference point for touch typing
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Mon, 08 February 2016, 19:47:22
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 ...
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: FLFisherman on Mon, 08 February 2016, 19:49:00
What is your current prognosis?
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: FrostyToast on Mon, 08 February 2016, 19:50:29
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.
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tp4tissue on Mon, 08 February 2016, 19:51:37


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
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tp4tissue on Mon, 08 February 2016, 19:54:35
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.
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: Glenmael on Mon, 08 February 2016, 20:08:43
Thank you for sharing this with us all and hats off to you for battling this rare condition, all the very best :)
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Mon, 08 February 2016, 20:13:12
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
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: njbair on Mon, 08 February 2016, 20:16:07
Keyboard related question: being deaf, how do you feel about clicky vs. tactile? Does it not matter or can you actually feel a difference?
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tp4tissue on Mon, 08 February 2016, 20:18:29
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.. (http://i.imgur.com/i1zDZzi.gif)
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: MOZ on Tue, 09 February 2016, 00:04:26
Heart goes out to you. You're one strong bugger.
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: baldgye on Tue, 09 February 2016, 07:37:47
Show Image
(http://i.imgur.com/l7cRf3W.gif)


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
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Tue, 09 February 2016, 09:11:38
Show Image
(http://i.imgur.com/l7cRf3W.gif)


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 :(
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: FLFisherman on Tue, 09 February 2016, 09:18:58
Show Image
(http://i.imgur.com/l7cRf3W.gif)


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?
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Tue, 09 February 2016, 09:56:21
^^the only treatment is tumor removal.
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: cmadrid on Tue, 09 February 2016, 10:41:07
Sorry you have to deal with all of that. I knew you were deaf, but never knew why!
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: baldgye on Tue, 09 February 2016, 10:44:05
Show Image
(http://i.imgur.com/l7cRf3W.gif)


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
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: Binge on Tue, 09 February 2016, 11:21:09
^^the only treatment is tumor removal.

I take it the surgeries would be expensive and frequent?
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Tue, 09 February 2016, 11:27:26
^^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.
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: Binge on Tue, 09 February 2016, 12:12:28
^^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.
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Tue, 09 February 2016, 12:45:56
^^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 ..
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: cmadrid on Tue, 09 February 2016, 12:55:05
And pray to the almighty Thor ;)
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tp4tissue on Tue, 09 February 2016, 19:44:06
^^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?
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Tue, 09 February 2016, 19:45:09
^^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
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: retrochick on Tue, 09 February 2016, 19:48:14
I don't wanna know what happened in that pool. I just wanna know how you rock at life. because you do. <3
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Tue, 09 February 2016, 19:54:35
I don't wanna know what happened in that pool. I just wanna know how you rock at life. because you do. <3

There was an assortment of Hookers and Blow
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: JaccoW on Mon, 15 February 2016, 18:37:34
My sister has type 1 (https://en.wikipedia.org/wiki/Neurofibromatosis_type_I) but it seems to be a random genetic mutation. All of us were tested and none of us seem to have it.
She was quite angry after she found out. I remember seeing people with much more severe cases like yours when we visited groups but at some point she stopped going. I guess she didn't want to be confronted with it.

She decided on eating as little meat as possible and probably never having kids since pregnancy (and related hormones) seem to have an adverse effect on it. Meaning that during large hormonal changes she suddenly gets more bumps on her skin.
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Mon, 15 February 2016, 19:37:13
^I'm with her, I'll never have kids.

As for the meat thing, I've never had any issue with it so I continue my carnivore lifestyle
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: iri on Tue, 16 February 2016, 04:28:46
Sure, tiger sharks can't be vegetarians!
Title: Re: I have Neurofibromatosis Type 2 - Ask away
Post by: tigersharkdude on Wed, 17 February 2016, 06:24:34
Sure, tiger sharks can't be vegetarians!

Do I look like a rabbit?