what are some of the symptoms of AN effecting brainstem?

[yardtick]

Tumbleweed,

I appreciate at the moment you want amenity and I hope once you have recovered that you do come forward about your AN.  I feel there needs to be more discussion and information "out there".  I never heard of it until two years ago.  I have a facial neuroma which is even more rare than AN, but the treatment is very similar.  My journey has been a learning experience for my GP also.  I'm sure that many on this forum agree me.

I wish much success with your treatment.
Anne Marie 

[leapyrtwins]

Anne Marie -

I agree with you.  While I totally understand Tumbleweed's need to remain anonymous, and I certainly respect his wishes, I hope there comes a time when he will feel comfortable in "revealing" himself to us.

ANs are such rare things and IMO the public needs to be educated about them.  There are so many people who are initially misdiagnosed, or not diagnosed for years, that I think increased public awareness would be a great thing.  I'm still a little disappointed, although I understand it, by Mark Ruffalo's reluctance to become somewhat of a "AN spokesperson".  I'm not at all "bashing" Mark, I just wish he were more comfortable taking up "the cause" on behalf of all AN patients.

Jan

[lori67]

Tumbleweed -

As you can see, we are a curious bunch here!  So.... if we guess....will ya' tell us?   

Ah, darn it, I think we hi-jacked another thread....  here comes the ruler again!

Lori

[Lorenzo]

Tumbleweed,

I respect your decision. There are a lot of people that may or may not be famous on this forum and they keep their identity hidden. If it would damage your life as it is now, so be it. Of course it would be good to have some more awareness of this condition in the public (and I agree with the others abut that, exposure is good), but maybe it just won't be from you. My hope is that some day somebody will highlight the issue and become more active and outspoken about it. But, it's a personal choice, and not everybody feels willing to be a spoke person. It would be nice, but if not, it's your choice.

As for me, you're a fellow ANer, regardless of who or what you are. That's just fine with me. If one day you decide to take it further, you can count on my support, and other's too I'm sure.

anyway, all that is a bit beside the point right now. First of all, CK. Good luck with it, and do keep us informed on how you get on.

Ciao, Lorenzo

[Tumbleweed]

The problem is that, within days of announcing my identity, my livelihood would be completely destroyed. It would be small comfort to me and my family that I raised awareness if, in return, I lost the ability to work in my lifelong career. The monetary loss and the loss of self-identity and self-worth would be a crushing blow. It's one that I face if my condition ultimately deteriorates, but I'm hanging on to what I've still got for as long as I can.

If at some point I'm unable to do my job properly, I'll certainly come out and reveal myself. But as a matter of self-preservation, I must remain anonymous for now. I've already lost so much due to this disease. Losing the career I love so deeply and my ability to earn a living in the only industry I've ever worked in my entire adult life... that would be the final, crushing blow.

Sincerely,
Tumbleweed

[Lorenzo]

Quite right, remain Tumbleweed. And hopefully it won't come to any doom predictions like that and you can continue as always.
Ciao, Lorenzo

[Tumbleweed]

Thanks for your support, Lorenzo.

For now, my way of raising awareness must be limited to sharing my AN-related research with others on this board, which I've tried to do on a regular basis.

Best wishes,
Tumbleweed

[leapyrtwins]

Tumbleweed -

understand completely.  It's your life and you know what will and won't affect it.  Going public with a physical disability is fine for some well-known people - like Rush Limbaugh for example - but maybe not so fine for others.  You obviously know yourself and your life better than we do.

As Lorenzo said, you're one of us regardless of who you are and you have our full support. 

Jan

PS - Duck, Lori ! 

[lori67]

Ah, yes, for all you know, I could be famous too.  I am a legend in my own mind, afterall!   

Tumbleweed, as much as I'd love to know your "real" name, I'd prefer that you were healed and could carry on with your work.  If that means we never find out your name, that's okay.  It would be worth it.   

But, you can't blame us for trying!  We are rather bold after surviving brain surgery, you know!   

Good luck to you!
Lori (maybe... or maybe not..)

[Lorenzo]

and who says that photo is really me?  lol

[leapyrtwins]

and who says that photo is really me?  lol

I have to say Lorenzo, I was wondering that very same thing after your post about people keeping "their identity hidden".

BTW, as long as we're confessing things - I'm really Christie Brinkley, and Lori's Cindy Crawford - without the mole 

Jan (being bold after brain surgery)

[Lorenzo]

Who?

[leapyrtwins]

Lorenzo    Here we go again! 

I just get done explaining who Lucille Ball is to you on the "wine & whine" thread, and now I have to explain super models 

You're kidding me, right?

Jan

[lori67]

Unfortunately, I think I look more like Lucille Ball than Cindy Crawford...

[Lorenzo]

ah... you're getting to know me. yes, I was kidding.  lol  At least I was about Cindy Crawford.