THe Carnival ride stops soon....I hope

[leapyrtwins]

Jack Daniels distillery    I'm partial to Crown Royal, but I'm not picky.

Hmmm, just another reason to visit Lori.  I'll have to mark that down somewhere 

[Joef]

Did someone say "Jack Daniels" !!!    hmmmm ... (in my best Homor Simpsons voice) 

[yardtick]

Jan,

I'll get the Crown Royal at the dutty free.  Just let me the size, Texas Mickey just might do the trick!!

[Lainie181818]

Hi David,
I just read all 4 pages of your posts, It was like reading my own story word for word. I am 2 years post mid fossa and just wanted to let you know how much I enjoyed reading your posts. Like you the tastebuds were shot for about a year. The only thing I could taste was chocolate, and in spite of that, lost 20lbs. My eye started to blink after about 8 months, and now it is almost in sync with the good eye. I use drops very rarerly maybe every couple of months. Did you see Dr Michael Roberts at St Vincents? I really liked him. Anyway 2 years on, my balance is still iffy but I haven't let it stop me from living a relatively normal life. I am a cheap drunk now and only need one drink to feel hammered. I can taste everything and gained back the 20lbs. My biggest issue has been the facial stuff. Like you I was told Just 6 weeks, well maybe 3 months, OK a year. I still have diffuculty eating on my bad side and I am trying to retrain myself, it is hard but if you don't you can have bad dental problems. I had to have 3 dental implants put in [ $12.000] I still get facial twitching and the last couple of days I can see things are starting to happen to my smile. Maybe its wishful thinking, but it makes me feel good and I am all for that. A BAHA has helped a lot and as for the friend thing, yes some left, and some I left. I think that your priorities change after AN surgery and I really don't let life's small drama's get me down. I would not wish the AN surgery on anyone, but slowly and I mean very slowly I am starting to like the new me again. Well today anyway.
Unlike you I am not a writer, but can appreciate someone who is. Please keep up the posts.
Lainie.

[LADavid]

Hi Lainie

Thanks for the kind words.  I enjoyed writing the posts -- sort of a suspense thing that I knew the outcome -- so far.  I'd have to go back to read the last one but I believe it was since then then I develped some synkinesis -- one more thing to deal with -- I drool out of the side of my mouth when I drink and when I'm outside in the sun squinting, people I pass think I'm grinning at them.  It's making me believe that my acting career may be soon biting the dust if that doesn't improve.  This is like jugling a ball of issues to see which one takes priority.

Yes I am seeing Dr Michael Roberts.  He has a true concern for his patients and has actually been the one guiding me through most of this (beside the folks on this forum).  He was the one who actually tipped me off to the fact that I could be in this for the long haul.  I know you can appreciate the 6 weeks, well 3 months, well, you know this could take a year (Dr Stefan finally said it).  This has been my biggest frustration.  Had I know it could take a year, I would have made other plans for recovery.  Dr Roberts will be doing my eye weights once we work out a schedule for surgery.

Do you still have full palsy?  And did your balance come and go?  There are days when I'm pretty good.  Then there are days like yesterday when I was staggering down Third Street.  It makes me feel much better to hear you say you are starting to like the new you.  Some ANer somewhere said that the experience changed them from an extrovert into an introvert overnight.  I can easily relate and I don't necessarily feel comfortable in my skin lately.  I guess I need to get used to the post-AN me. It encourages me to know that there are others who share the feeling.

Again, thanks for writing.  My best to you and your recovery.  And I will keep up the posts.

David

[LADavid]

And as for the previous posts of Jan, Anne Marie, Lori and Joef....I know I liked you guys. But unlike Lainie -- I am not a cheap drunk -- and I'm a writer -- and I'm mostly Irish -- and I really can't taste anything anyway.  As long as it's 80 proof, a big booze works for me. 

[yardtick]

Your taste will come back.  I'm Hungarian and my husband is Italian now talk about a love affair with food.  It depressed to no end not being able to really taste what I was cook.  I'd have to call one of my sons or my husband to be the taste taster.  I too lost 18lbs but some how its found me!

I find vinegar is still a little hard to handle.  My husband is really an expert wine maker.  He makes several types of red, white and a zinfandel specially for me.  He also made a Demi-jon for my girlfriend.  I was so afraid I'd never be able to drink wine again.  It was scary!!!  Love pina coladas with coconut rum. 

Anne Marie

[Lainie181818]

Hi David, You are the first ANer I have talked to from LA, I live in Redondo Beach. Anyone else out there from the LA area?. I know what you mean about the synkinesis thing, I get it when I eat. My eye sometimes closes when I chew, [ god, I must look so attractive to fellow diners] Eating in Public is not on my list of favorite things. I think restaurants should supply us with a rubber cape and a tool kit. My friends have got used to telling me when I have food on my face. The balance thing comes and goes, sometimes it is great. I find if I am stressed or tired it really gets bad. i have a 2x4 6ft plank of wood that I use for balance that works out well, and it has proved great entertainment at parties after a few glasses of wine, OK in my case 1 glass [actually I can drink 2 now, while still remaining upright. And less of the "Cheap drunk" My husband and I go to the Santa Ynez valley a couple of times a year wine tasting. Unfortunately I have become the Designated driver. Dr Michael Roberts is the best, when you next see him could you give him a message from Elaine Adam "The English Patient'' with the husband who flies for Delta. Please tell him " Go Bruins ". He is a staunch USC fan and we used to tease each other about it. Like you said he has so much concern, I actually miss my visits to him. The Palsy thing again very much depends on stress and tiredness. I do have a crooked smile but I can show most of my teeth,  most of my friends say they don't notice it anymore.  I didn't think that I was vain until I lost my smile, I think I will always have a confidence problem with it. However it is getting better. I hate when I bump into people I haven't seen for years. I always feel compelled to tell them about " The Elephant in the living room" Its always priceless when you say the dreaded words Brain Tumor, I think we could all clear a room faster that shouting "fire". Anyway I have been Prattling long enough, I am leaving for England Tomorrow and I still need to pack. One last thing David as far as you giving up acting, I have one thing to say MARK RUFFALLO, I go and see all of his movies and you really can't tell he had an AN.
Lainie

[leapyrtwins]

I have one thing to say MARK RUFFALLO, I go and see all of his movies and you really can't tell he had an AN.
Lainie

Yes, but did you know he won't agree to speak at the ANA Symposium?  I still can't believe that one 

Jan

[Lainie181818]

Jan
I can't believe that. Think of all the good he could do by speaking up. Maybe he thinks he will be known for his AN and not his acting
Too bad.
Lainie.

[leapyrtwins]

Jan
I can't believe that. Think of all the good he could do by speaking up. Maybe he thinks he will be known for his AN and not his acting
Too bad.
Lainie.

Yeah, I couldn't believe it either - found it very disappointing 

I read it on another post.

Jan

[LADavid]

This is going to sound a bit mercenary -- but when I worked in corporate marketing -- particularly on cause marketing issues -- the causes had to be big, non-controversial, universal, and lacking in something that could be looked on as being undesirable -- particularly diseases.  World Peace fits.  Boys and Girls Clubs fit.  Big Brothers and Big Sisters fit.  Revlon knew it's market in Breast Cancer cure.  But my guess -- Mark R's handlers didn't think with 3 or 4000 cases a year AN was big enough to get behind and brain tumors do have a certain eeewww stigma.  And on the cynical side, maybe his publicity people want him to keep the AN for himself.  I know that sounds cynical and all -- but I do work in this business -- that's the way it works and it ain't pretty.

[leapyrtwins]

the causes had to be big, non-controversial, universal, and lacking in something that could be looked on as being undesirable -- particularly diseases. 

Hey wait a minute, are you saying that having an AN is looked upon as being undesirable - or as a disease!  I'm shocked 

I just thought we were all very privileged people 

Seriously, David thanks for the explanation.  I get it - but I am still kind of disappointed 

Jan

[lori67]

I guess we should have picked a more desirable ailment.   Malaria?  The Ebola virus?   

Lori