I have Neurofibromatosis Type II .... AMA

Thanks for an interesting AMA. Do you feel bitter?

Not really. At one point, yes, but as of now I have come to terms with it.

I live by, "Never say that it can't get any worse". I know that there are countless people that have it much worse than I do, so I know that it can indeed "get worse".

Have you had any issues with cataracts thus far? I know you said that you are blind in one eye, but since its unilateral I would guess that that is due to papilledema from an ependymoma instead of juvenile cataracts.

Also, do you know if your case of NF2 is inherited or de novo? If it is inherited, do you know whether it is due to a frameshift/nonsense, missense, or point mutation? They each carry radically different prognoses if I remember correctly. Thank you for doing this AMA btw I find NF2 (and 1) to be fascinating, but rarely get the opportunity to speak with people who actually have them and get their perspective.

Indeed I have, I had a cataract removed from my good eye about 12 years ago.

My case of NF2 is inherited, we think my great grand mother and grand mother had it, my dad (RIP) did have it, and my brother (RIP) did have it.

[deleted]

Never have, likely never will.

If you read through, I have watched a number of family members and friends get addicted to drugs and hit rock bottom. I don't take any pain medicine on a daily basis, I may occasionally take a Tylenol and RARELY take any hard meds (think at the hospital)

I must ask for clarification. Do you mean they became addicted to cannabis? Or other drugs (possibly considering cannabis as a "gateway" drug)?

Also, from my extremely limited understanding, medical cannabis is different from 'regular' cannabis in that it is bred to contain less THC and more of ... other cannaboid compounds. Perhaps someone more knowledgeable can fill in/correct anything as needed.

Drugs in general

bilateral acoustic schwannomas?

I take it you have NF2 ...

i'm a doctor

ah, the tumors on my hearing nerves were Bilateral Acoustic Neuromas (sp?)

Is there a chance that more tumors might grow, and you'd need to have more surgeries? Also, I read about the drug Avastin helping to shrink tumors. Are you taking it or something similar to help curb tumor growth?

I'll answer this in steps.

"Is there a chance that more tumors might grow" - Definitely. Tumors are always growing, I have MRIs every 6 months or so to make sure that nothing is growing too quickly.

"Is there a chance you'd need to have more surgeries" - As much as it pains me to say, I can almost guarantee that I will have to have more surgeries down the road.

"I read about the drug Avastin helping to shrink tumors" - I have never heard of Avastin until I read your post, so I had to Google it. Avastin seems to be for Cancerous(sp?) tumors, I read that it has shown to help some people with NF2 but not everyone. I will not be taking any experimental drugs or procedures, I have had no luck with "It might work" up to this point.

Avastin is an anti vascular endothelial growth factor drug. It's indicated for treatment of metastatic colorectal cancer. It is used in conjunction with other therapies a lot of the time. It has been used off-label for many years for many ophthalmic conditions involving neovascularization. Just because something is not approved for use doesn't mean that it doesn't have validity for treatment. Before other drugs were approved/indicated for use for ophthalmic purpose in canada- it kept the sight of many patients (at least in the 8 years I was able to witness it). I just think sometimes stepping out of the box can do wonders, especially for quality of life.

Last time I stepped out of the box I woke blind in one, partially paralyzed on my left side and blind in one eye. I have a good reason for not trying new procedures

Now I'm not saying I am against, I am just saying that I would need good evidence that it has helped a number of people in my situation before I would try it

Fair to say. You're body your choice. I'm just saying what's "new or off label" in one instance may have been used in tha t way for multiple patients/years. Avastin ( or any antiveg-f helps to limit the vascular growth of tumors- who knows if it could help at all) everything in life carries a risk its yours to choose if the risk is too great for you. Was it brain swelling that caused the loss of vision through papillodema or visual cortex of the brain being affected, if I may ask?

The vision was caused by the nerve that controls that eye, it was affected in the surgery (not sure how).

A lot of us take senses like vision and hearing for granted. Were you always blind in one eye? Were you always deaf? Folks born without these sense have had them all of their life and live with them on a daily basis. Did these sense slowly deteriorate? If so, did you learn to read lips? Sorry for all the questions at once.

EDIT: My apologies. I misread "caused me to go deaf". Though the questions still apply.

"Were you always blind in one eye?" - No, complications from the brain surgeries I had in 2012 affected the nerve that controls my left eye and it is unable to focus :( my vision is 20/200 (I think thats right) in my left eye

"Were you always deaf?" - No. I lost hearing on the right side due to a surgery I had in 1999. The left slowly deteriorated from then up until about 2010-2011, it was around then that I noticed I had 0 hearing .. and that leads to your next question.

"did you learn to read lips?" - Yes, I can read lips quite well. I realized that I was completely deaf because people could be looking at me talking and I would respond as normal, but if they are behind me they got the cold shoulder .. LOL

Thank you for taking the time to answer my questions.

no problem, I thank you all for taking the time to ask.

Thanks for doing this AMA! How do you eat if your face is paralyzed?

Its a PITA. I do have muscle control in my jaw and tongue but I cannot voluntarily close my lips.

Yikes. How do you swallow without closing your lips? Do you sip from a cup or a straw?

Well when the paralysis first happened I had one heck of a time with drinking/eating but over the few years I have adapted to being able to. Originally I used my hands ALOT with eating/drinking but I am learning more on how to do these tasks easier.

Can you eat like, chips and salsa? They didn't put you on pureed foods, did they?

I can eat whatever I want, but the difficulty of eating varies

Have you ever considered doing psychedelic drugs?

No, I've watched far too many people hit rock bottom on drugs. I barely take anything, I deal with pain quite well .. If I say I need something my family/friends know that I am in a lot of pain

I respect your stance on drugs OP. But as I mentioned, I have Type 1 NF; you should really try cannabis for your pain. It's been like a miracle remedy for me and is the only thing keeping me out of a pain clinic and taking harder drugs. It is safe, effective, all natural, and literally impossible to kill yourself with. No one has ever died from the direct effects of cannabis in the history of mankind, ever.

I know all about it, a number of family members used to. I have just never even thought of doing any kind of drugs. I deal with pain quite well, to the point of it not even bothering me 29 of 31 days a month.

You seem uninformed on what he's asking.

"psychedelic drugs" - LSD, Acid, Shrooms, etc, etc

Which bothers you the most, the vision loss, deafness, or facial paralysis? Have you at least gained any super powers?

"What bothers me the most?" - Probably the deafness. I am quite the car junky and love going to races and such.

I miss being able to hear things like THIS and THIS

As for super powers, I have an absolutely amazing sense of smell and touch. Back to the cars thing, I can literally feel cylinder combustion through a gas pedal, this is quite irritating sometimes though because I'll think something is wrong with my car.

I don't know if this is your thing, but ever heard of Deaf Nascar Fans?

I have not. I am not a big fan of Nascar though, I prefer F1, LeMans and V8 SuperCars (aka non 'murica racing ... LOL)

Woah! I have NF1 (less serious for those unaware) thanks for doing this AMA.

I've always been a little surprised that there has never really been any public figures or celebrities that have come out with it.

Glad you're doing well.

edit. TIL a lot of redditors have NF1

"edit. TIL a lot of redditors have NF1" - THIS

I am extremely surprised by the amount of people that have replied to this link as well as the number of people who directly/indirectly dealing with NF

Off topic; 105 down votes? Really?

When did you discover you had NF2?

When I was about 8, I noticed I couldn't close one eye when I was taking a bath. And through appointments we figured it out

If stemcells would help you would you use them and if yes what is your opinion of people say stemcells are bad because doctors are playing god

Stemcell research is absolutely fascinating to me, I have been following it for years. If I thought it would help me i would love to do it, but as of currently I havent heard of anybody with NF2 doing anything with Stemcells

I also have NF type 1 though. But for any other redditor who has NF we have a small sub over at /r/neurofibromatosis

I was looking for a sub but didnt find anything

Can you blink your eyes? I know it's a stupid question, but I'm really curious.

Also, how do you stay positive about everything? People take so many things for granted.

I can not blink my eyes

I stay positive by knowing it could be worse

Are your eyes irritated?

Occasionally my eyes get really dry and they bother me and I have to put eye drops in them.

And they are extremely sensitive to light, to the point that I have to wear sunglasses in doors a lot and my car windows are BLACK (legal for me :P )

Was that a tough adaptation? If I don't blink my eyes burn after only seconds.

I think a lot of has to do with not feeling much of anything in my face, so often I cant tell they are dry until someone says "your eyes are super red"

I don't know much about anything but I hope the dryness doesn't cause premature vision loss.

I don't know if it would cause damage though.

I try to keep drops in both eyes through out the day, sometimes I forget though

and thanks for commenting, Captain Obvious :P

With today's technology at least you can express yourself through emoticons! ;)

Indeed, and picture memes

Wow. How would you go about sleeping? Do you use a sleeping mask?

I used to wear a sleep mask, now my room is completely dark at night (all lights off, power LEDs have tape over them, etc, etc)

Do you ever get pulled over because of your black windows, and how do you handle the interaction with the officer?

Edit to say thanks for doing this AMA. It's difficult for me to understand how someone in your situation can cope with everyday situations, and I think AMAs like this help me to understand how to interact with people better.

I used to get pulled over a lot, even though I have a medical tint exemption. I was fed up with about 6 months ago and went to my city police station and explained to the Captain (who ever was in charge) what was going on, and he pulled all of the officers in the station to his office and told them to stop harassing me and to let the other officers know .... I havent been pulled over for it since

Thank you so much for the AMA. You are a super cool guy to be so patient.

thanks

Thanks for doing this AMA. You certainly seem to have a great attitude! How has your neurofibromatosis affected the relationships in your life?

I'm not home so I'll answer this when I get back, it'll be lengthy reply

I am home now so I can use a keyboard and not my phone.

I hate to put blame on anything but NF2 has really hindered relationships with people, even with family.

Ive known Ive had NF2 since I was 8, so most of my school life I was "different". This caused many kids not to associate with me (you know how kids can be), I even lost a few friends when I had my first brain surgery (I don't need people in my life that are going to treat my like I have the Black Plague). After having my first brain surgeries I found it quite difficult to interact with "new people", I still had my close friends but it took a really special person to befriend me when I was younger. My first year of high school was without a doubt the worst year I had in K-12 (so many new kids that wanted to pick on me). My sophomore year though was MUCH better, I am/was extremely smart and excelled in normal classes, even in advanced classes I was going faster than everyone else, so my sophomore year I was in a number of Junior/Senior classes. Most of the kids that I hung out with in HS were Seniors (the older kids didnt really even notice my issues, and treated me as one of their own) so at that point I was in classes with my friends and not with the other kids my age. And with being in classes with the older kids, the younger kids started to notice that "Hey, he hangs out with the cool kids" and thus the majority of them started treating me better.

Now as far as personal relationships, those have been few and far between. I have always encountered girls that are materialistic, but as I am getting older I am encountering women who are no longer childish.

If I missed anything, feel free to ask

My doctor says I have NF-1 but he says it looks more like Legius Syndrome. Also about 3-4 years ago they discovered a spot on my brain during an MRI. I have to go to the MRI 2 times a year to make sure it doesn't develop into a tumor.

Definitely keep on top of it, NF1 can be a real PITA

Have you tried medical marijuana?

no.

Was going to ask about this, I have a friend who has type 2. He felt like travelling, so went to Vietnam, had a blast, took a lot of random drugs, came back and the docs told him the tumors has shrunk.

Would you ever be open to try Marijuana if there was a chance it would help?

It would take a whole lot to get me to try any type of drugs. I have watched a number of family members get addicted to drugs and spiral out of control.

My brother has NF2, but it wasn't detected until his late teens. He has a terrible quality of life and finds it frustrating to make others understand his dilemma. But it seems the worse the disease gets, the better his humor gets. It's the way he handles it. He's written a book, and I'm not suggesting anyone buy it, but tigersharkdude, you may find some comfort there. How to Surive the Stabbing Weasels...

He calls himself a "zombie". And it fits.

"But it seems the worse the disease gets, the better his humor gets."

This is so true, we deal with a lot and humor is a good way to stay positive.

I'll check the book out online

Hi, thanks for doing this AMA.

I just wanted to say, as I read all your answers, that you have an exemplar attitude towards your illness.

Keep it up man.

Gracias

I have type 1, luckily I have escaped with no symptoms other than birthmarks. Is daily life a struggle? or are you use to it?

I am pretty used to it. If it wasn't for my mom I couldn't imagine how hard my life would be, she helps with so much.

i've been thankful with my escape really! Can't imagine how hard it would be for you... Really feel for you bro

Thanks

Hi, thanks for doing this. My brother was diagnosed at birth, his case is very mild. He has fibromas all up his spine, alone with hundreds of surface fibromas.

Has anything helped you with pain other than meds? Have you ever gotten addicted to meds? If so, how did you get clean? Is there any advice you'd give to another sufferer?

Thanks for asking, tell your brother to keep his up and stay positive.

Nothing really held me with pain. I do not take any pain medicine for fear of addiction. Daily I take a Super-B complex vitamin and a Mens Multi-Vitamin

Sorry for the stupid question, but if you can't close your eyes, how do you sleep? It must be horribly uncomfortable. Do you cover them?

Not sure how I missed this.

I sleep in a very dark room (no lights anywhere) and occasionally where an eye mask

Hey, thanks for doing an AMA. NF runs in my family. My uncle had a 75 pound tumor that almost killed him when it tore away on the inside. My cousin has a tumor on her spine that they refuse to operate on because it'll paralyze her (but it will eventually). Her children have also been diagnosed, her oldest has a tumor on her heart they they won't remove as well. She lives in Northern Michigan, and the town where she lives has many people who have NF. Just an odd coincidence.

I have noticed through your pictures that your surgeries are mostly from the shoulders up. Do you have any tumors that are non surgical?

If NF2 runs in your family, be sure to keep yourself checked up.

So far all of my surgeries have been from waist up. I have countless tumors, my neurosurgeon is quite a good doctor and is usually up for taking anything off as long as the outcome should'nt leave me worse off than I was.

I've been checked a lot. I have a couple of cafeole (spellcheck?) spots, but nothing to be worried about. My uncle was the first in the family to be diagnosed, and his daughter was the second. Out of his 4 daughters, 3 have it, and out of his 6 grandchildren, 4 have it. So it looks like it's only from his genes maybe.

My uncle has trouble teaching people that NF is not Elephant man's disease. Have you ran into that problem at all?

do remember though that the gene can mutate at any time, that's why I say to stay checked up.

And yes, for the most part NF2 is passed on from a family member (AFAIK my great grandmother on my dads side was the originator in my family, she was not formally diagnosed with NF2 [disc. in 1985 I think] but she had alot of medical issues that point to it)

Have you decided yet if you'd have children? Godfather of my daughter's wife has NF2, wife of one of my closest friends of 20 years+. They made the decision to not pass along the gene and not have children. Breaks my heart since I know my buddy and her would have been great parents. She's also done a bit online to help others with it, these are her websites http://www.nf2nycsupport.org and http://www.nf2is.org

My wife and I also made an effort to at least master finger spelling in ASL, as she is pretty good lip reader and in ASL and sometimes just needs a little bit to understand what we're saying.

I would love to have a little human of my own, but I have decided that I don't want to pass NF2 on, when the time comes some for of adoption would likely be what I'd do.

And I think ASL should be taught in public schools, it comes in handy so much; talking in loud places, etc etc

This may be a dumb question. Do people ever look at you funny just because of your facial paralysis? If they do how does it make you feel? Whenever I see, in public someone who is paralyzed there are always people staring at them, and, I know it makes me very mad at those people staring at someone who can't help it.

Oh dear lawd, I deal with this daily and it PO's me to no end.

When little kids do it (happens daily) it irritates me, but when a grown man does (more often than you would believe) I want to go knock dudes teeth out.

I would highly recommend you visit this facial re-animation surgeon. Phenomenal physician.

http://www.methodistfacialparalysis.com/dr-michael-klebuc/?gclid=CLvQh62Ttr4CFUMF7AodtUAAzQ

My face is donezo, the nerves are completely dead (same thing with my hearing), like Cochlear Implants wouldn't do anything for me because the nerves are dead.

Hi, I'm Luca. I'm 17 and live in the UK, at the age of 6 I was diagnosed with NF1.

I don't have a question, but thanks for the interesting AMA, I haven't really met any people with NF2... But nice to meet you!

Thanks. I have only met one other person (besides my dad and brother [RIP Dad and Joe] that has NF2 (never met anybody with NF1)

serious question: have you tried edible marijuana as a pain reliever?

no.

I have some type of NFM, but it has not caused my any problems except for Cafe-ua-latte spots and I use to have small bumps on my chest.

update with your doctors annually

Thank you for doing this AMA!

thanks

Did you have to learn sign language?

I know a little bit of ASL, I am still learning. I am so used to English and its grammatical structure (read; Grammar Nazi) that I am having a terrible time with the syntax of ASL (it's not English, English words but the grammatical structure is completely different).

Considering NF2 is an autosomal dominant disease with pretty much 100% penetrance, has this in some way affected your thoughts about having kids in the future?

(In AD diseases, if a parent is affected the chance of the child being affected is 50% under the assumption that you're a heterozygote and not a homozygote)

Nf2 is not guaranteed to be passed down, my dad had a brother and sister that didn't have it, and I have a brother that doesn't.

I have very much taken having a child into thought, emif/when I want a mini human I will likely adopt, I wouldn't wish NF2 on my worst enemies

Have you learned any sign language as a result of your hearing loss?

yes, I have learned a lot of basic things (alphabet, numbers, common used words) and I am still learning more unique words and communicating solely with signs

Having gone through everything you've gone through, and facing all of the daily challenges you face...... can you tell us something that you feel most people take for granted?

The ability to easily communicate with those around them

What would you say is the greatest thing or trait, etc. that you have gained from being diagnosed with NF2?

Probably my ability to stay positive, so many people tell me that "I don't see how you stay positive".

Well I have to say it's really good to here you can stay positive even though you've had to face all the adversity. Your 100% right saying things could be worse because in the end your still here on earth

Indeed, that's the ultimate "It can be worse" ... when you leave Earth. I have had entirely too many family members leave too soon, and that's a good daily reminder that "it's not that bad, at least I'm still kicking" ... funny story about kicking, I once, involuntarily, kicked a nurse when they were trying to wake me up from anesthesia.

Type 1 checking in as well, mine was mutation originated. Overall lucky. Sorry bud

Hope you are doing good

My uncle had Van Recklinghausens...always had a spot he had to have removed it seemed like. I personally wondered about my odds, but other than a couple sebaceous cysts, so far so good.

Never heard of it, I'll have to check it out

Ahw dangit I'm doing a study on NF type I.

The best of luck to you though!

Good luck with your studies

Interesting. I have NF1.

TIL that a lot of Reddit users have NF1/NF2

I don't know about NF2, but about 1/2500 people have NF1 so that's somewhat accurate.

I think NF2 is 1/25,000

Correction 1 in 40,000

Hey man.

Doctors thought I have NF2 - and are still curious - because I have a single, slow growing acoustic neuroma. Luckily there's been no other signs so far (for about 12 years now) and so it just seems to be an oddity that's appeared in my head.

One of my friends has NF2 and is involved in this project: https://canyouhearus.co.uk/ Check it out, i'm sure they would love to hear from you.

All the best.

If you notice ANY hearing loss, especially sudden (think over night) get it checked out ASAP! I lost all hearing on the left in a period of 8 hours

Is there an advantage in getting it checked quickly? I.e. is there a way to prevent hearing loss if reported early enough?

Well if they find a tumor it can possibly be removed without damage, but if it goes too long it may take your hearing before they can remove it.

I have type 2 and have yet to have any surgery. I know it isn't to far off in the future for me. I know every case is different, but do you regret having any of the surgeries that you have had? I am really on the fence about surgery vs radiation treatments, or avastin. Thanks for sharing your story and making me realize just how many people are going through the same thing as me.

I do, I absolutely regret having the ABI surgery in 2012. One surgery turned into 4 and a huge list of complications (including loss of vision in the left eye, temporary partial paralysis on the left side which required about 7 months of PT, I now have a permanent shunt on my brain, had a PIC Line inserted for 4 months do to a blood clot ... Oh and I mention the ABI didn't work?)

That is why I am thinking of trying radiotherapy (still has a risk of hearing loss) , my mother has NF2 and has had 4 surgeries. She has significant hearing loss in both ears. She also has a lot of balance issues which made it so she couldn't work anymore. I know if though if I do nothing at all that eventually I will lose my hearing and probably much worse things will happen as well.

My brother did this when he was in his teens, it really messed with his mind, mentally he never really grew up. Up until he died he still acted similarly to a 15 year old

Oh man that is horrible. I'm sorry to hear that. So , there really are no "good" options for dealing with it.

Define "good" ... Lol

essentially the option is surgery when a tumor is large enough that it needs to be removed, and we all know there is no guarantee on outcome. My brother passed away because some egotistical, douchebag of a Dr at Vanderbilt INTENTIONALLY messed up because another Doctor told him how to do the surgery. We tried a malpractice suit but by the time we tried our time was up .... Can you believe this same dbag wanted to my last surgery? I told him real quick to "take that degree and shove it! I wouldn't let you operate on my dog"

Thank you do much for educating us with this AMA. Aside from surgery, what other types of treatment are there?

Surgery, that's it. NF2 was discovered in 1985 (IIRC) and with the lack of people even knowing about has caused research into treatment to be very small. Recently though places like Children's Tumor Foundation are spreading the word and helping raise funds for research.

Do you feel that people treat in a different way because of you're disability? And if they do how do you feel about it?

People definitely treat me differently. Something's don't bother me, such as when people write to me (I approve of this!) but irritates the crap out of me when someone treats me like I am mentally challenged because of my issues.

I was diagnosed with NF1 when I was 5. Just want to say I know all about PITA and I feel for you.

The struggle is real ....... LOL

If you have read through my replies you may have seen the "never say that it can't get worse", Im sure you know that too .... IT CAN ALWAYS GET WORSE

Oh, shit, OP. This really puts it into perspective. I have Type 1, and although I experience severe pain on a daily basis, I am lucky it is not worse. I always try to make the most of every day, but it's damn hard sometimes. Stay tough.

I really try not to think/act like it's that bad, I think this is why I can stay so positive. Just remember that "It can be worse" and know that you might not have been given a perfect life, but at least you are living and breathing.

It says you can't close your eyes, do you have to manually close them? Do they dry out?

yes, I have to manually close my eyes (uber failblog). and yes they do dry out, I keep refresh eye drops in stock like my bathroom is Walgreens ... LOL

Can you speak with facial paralysis? Or can you not move your lips? What about your tongue?

I can kind of speak. I can't move my lips at all, I can move my tongue. I can speak with the help of one of my hands, I have adapted this. For the most part people can understand me, if they are willing to be patient, but I encounter people a lot that will not even remotely try to understand me.

Do you use ASL?

I am decent with ASL (read: I can manage) but I am definitely not fluent, Im still learning

One thing that worked for me as I learned it was signing songs. I would learn all the signs I need to sign the lyrics to a song and then work up to speed.

"I know a little bit of ASL, I am still learning. I am so used to English and its grammatical structure (read; Grammar Nazi) that I am having a terrible time with the syntax of ASL (it's not English, English words but the grammatical structure is completely different)."

I am working on it, it's just taking me a while to "forget" the English syntax.

Yes! I had so much trouble with that.

It's pain trying to transition from English to ASL syntax, I hate how everyone is like "It's just signed English" ... no, that's SEE

Terrible grammar Nazi :)

I can be a Good Grammar Nazi, but if I am typing A LOT (answering a ton of questions) I tend to type quickly and throw the rules out the door.

It was more of a comment of your general grammar Nazi tendencies an frequency lol

oh, just a misunderstanding then

Have you ever contacted ALDA? The association for late deafened adults?

I'm a member of a local place called Bridges.

I'll check out ALDA

Its a good association, and definitely has a strong, strong NF2 cohort. My aunt (with NF2) was one of the founding members, and my father (also with NF2, RIP) was an active member as well. Good support network. They have an ALDACon each year for members to get together.

I sent them an email earlier asking if they had a group in my city, I didnt see anything online

Thanks tigersharkdude for doing this very interesting AMA. You have an incredibly handsome attitude towards life, which makes me appreciate what I have more.

My question is have you had genetic analysis done to see if it's something that runs in your family or arose de novo (out of the blue)?

You mentioned being a car aficionado, what is your opinion on the White House Beast?

Yes, NF2 runs in my family (coming from my dad's side [RIP Dad])

I had to google "White House Beast", are you referring the presidents limo? If so, I find that thing to be idiotic, especially after watching it get stuck coming out of a garage". The president needs something like an armored SUV, not a car

I saw that you mentioned you had a shunt placed to drain an excess of CFS off of your brain. Have the doctors put a name to the reason why you needed it? Is it a form of hydrocephalus? If so, what is the exact name that they gave it?

Also, do you know what brand shunt you have and the type?

Sorry for all these shunt questions, I've had one since birth and have 50+ revisions so far and I'm under 20yrs old!

I am not sure exactly why off hand, so much BS happened in a few months time that its all just a cluster*** of memories

In the pictures you write that you have an auditory brain stem implant. Did it ever work? How does it sound? Is there a chance of getting it to work (again)? Is there a distinction between left and right in auditory brain stem implants, or can you get only one?

It somewhat worked, it is now sitting in its box. It was beyond difficult to keep attached and when it was attached I experienced terrible headaches and my balance was off to the point that I stumbled around

Also have you ever been to one of the NF summercamps?

No I havent. As a kid I wasn't into camps and outdoors and such, but now I love those things

being deaf but not born deaf, can you still kind of speak at all?

I can, I speak a lot but it takes someone that is willing to be patient to understand me

Is it more frustrating for you to have to repeat and try repeatedly for you to be understood, or for someone to give up on trying? I feel like both would be so frustrating, but if you don't mind repeating yourself to be understood, I guess it's less of a big deal.

Definitely having to repeat myself. Remember that up until about 3 years ago I functioned, for the most part, normally and can speak normally ... going from that to not being able to speak normally is a horrible feeling, and then when you get people that are like "could you say that again .... huh .... what?" "JUST FORGET IT is my answer. I'll repeat myself once or twice, but Im not going to do it 5+ times, I have walked out of numerous restaurants because of waiters/waitresses doing this

Is it/would it be easier to communicate by writing things out? I'm sure I'd be apt to say "never mind" after repeating myself a few times. I've only been on the other end, and I personally get mad at myself for not being able to piece things together when someone is trying to say something (I am a caregiver and some clients have been difficult to understand for various reasons.) Do you consider that even an option for you, to write out what you'd like to say? Do you sign ASL?

I do usually have a white board with me, but even then people often act like they don't understand.

and yes, I usually will sign things while trying to speak

oh wow im sorry i didn't read the thing up top... what causes that? Also is that what Stephen Hawkings has? Also im sorry life took such a shit on you

Nf2 is a heritical neurological disorder, you either get from family or a gene mutates in your DNA.

Hawking has ALS (IIRC).

ok. um. what he hell is Neurofibromatosis Type II?

Google it. Its a rare neurological disorder that causes tumors to grow on nerve endings

I am the wife and mother of NF1 patients. I applaud you on your positive attitude, as my husbands family treats their string of NF family members like dirty little secrets. My daughter is only 2, and I worry everyday about what her future will be like, and I hope I can keep her as positive as you are.

"family members like dirty little secrets.", don't you just hate that crap? Luckily the majority of my family treat me no differently, but a handful of people treat me like that and I am like "-_____________-"

For your direct family dealing with NF1 tell them to "keep your heads up and remember that it could be worse".

you get that from holding your pee right?

WAT?