need to know

[linny]

    I had a 3 cm  AN almost 3 yrs ago  and to this day I haven't felt right. Does anyone after 2 or 3 yrs still not feeling good , I mean just all around bad symptoms?  I still have balance issues and facial and eye, all the stuff that goes along with the surgery, but also weird things keep coming, now they either screwed up  and wiggled my brain to much or I'm crazy.   I had my surgery by DR. DELASHAW and DR.MENMENEMY, at OHSU in oregon.  I have had a lot of issues different from norm of this darn tumor. Please let me know. And Hi to everyone hope and pray everyone is doing better than me. Lin http://

[catlover]

Hi Linny,
Sorry to hear that you're not feeling ok. You should after so long time! Not that I know, I'm only 14 days post-op, but what do the doctors say? Are there still chances of improvement? I really hope there are.

All the best to you from Helene   

[moe]

Linny,
What kind of symptoms do you have? I am 3 years post this month and do not feel the same preop and never will.
Though I know with my severe tinnitus/deafness/facial nerve cut that these are going to affect my life forever so that's a big part of it.
I "plug" along, do things at a slower pace. Try to enjoy life, but CANNOT stand being in loud rooms/restaurants and be expected to carry on a conversation

My thought process isn't as whippy. I've always been a space. Now I'm just spacier
I try to keep a sense of humor through it all. Just blame it on the brain tumor.
 I have a hard time remembering things in a conversation:  if someone tells all these facts about something or another,
it goes in one ear and out the other. Very frustrating.
I'll ask the same question twice in a conversation.....
Stuff like that.
Ah well, it is the new me, and it's here to stay.
You can vent on the forum and it is great!
  Maureen

[TP]

Moe and Linny, I can totally relate to what you are experiencing. I've had a great attitude thru all of this but I've seen my personality change quit a bit. I have been an extreme extovert my whole life until I had my AN removed. Now I find that I don't really enjoy being in a large group of people at all. I don't wish to get in front of people like I use too (use to sing in the choir, use to do training and consulting for large groups of people) and I think my memory stinks, I can't remember many things, movies, books, people, names, experiences.

My face hurts quit a bit and when I am tired my eye that has had several surgeries looks goofy. My balance is fine and I can do almost anything that I did before physically (thank GOD-although I am now 50 and don't have as much energy as I once did) but my SSD is starting to get to me. When I go thru the drive thru at a fast food or pick up my prescription I can't hear (I have left SSD). I have to ask people to repeat stuff ALL the time (in particular my family who seems to mumble quit a bit). I changed churches because my church moved into a large gymnasium and the sound was horrible. I do not like going to big restaurants and recently my friends from my childhood we celebrated a 50 birthday party in a club. I totally was out of place and the noise level was horrible (of course I felt like an old person around a bunch of children).... 

When I want to feel sorry for myself I really can't because I can't cry (due to facial paralysis)....Then I do a reality check and think of our soldiers in the mid east and around the world who are away from their family or have come home and are disabled and suffering, I think of cancer victims and other related serious health issues and I find that I am so fortunate that the only problems for me are things that are just uncomfortable and sometimes very iritating. It does not take away that those of us who've had an AN don't have issues and we have even changed our lifestyles in many ways and our family/work life has been impacted by this tumor. I do believe that every situation we can learn from and influence others in a positive way. I have to remember this when I get ugly about my situation. 

Linny hang in there. Try to take time to do things you enjoy doing. Rest as much as you can, I find when I am able to do this I feel so much better. God bless!
 

[kenneth_k]

Hi Lin.

I'm sorry to hear you still have so much trouble from surgery. I think recovery takes place during the first year for most people. Obviously not in your case. Do you still have the possibility to talk to your doctor? He/she may have some comforting words.

Anyways, I'm sure there are people out there who had slow recoveries who can share their stories. I recommend you try to enjoy good things in life (family, friends, favourite foods, movies). If everything else fails, this could be a lot worse, just as TP wrote.

Best regards, Kenneth.

[linny]

Thank you guys and gals I guess misery loves company    But really My eye is still droopy and watery (left side ) and I have the snarl look in my mouth, and I look so ugly now. still have memory and balance troubles. But the weird thing is  I have had alot of being sick at my stomach, and then my back will hurt the ringing in my ear drives be bonkers and yes I cant stand loud places restaurants stores I get this weird sensation and have to leave, It just seems there's been one thing after another since I had this done. (2) surgeries for one tumor. I did have complications, and I still wonder if doters really know that much about the brain and how this surgery could effect some people (delicate stuff.) But we will never know.    I guess I shouldn't complain I'm still alive, but this has most humbled me. everything about it.  I pray we all get over this. And thank you for letting me vent.     GOD BLESS, you are all wonderful

[TP]

Linny your issues are real and painful. Please don't apologize. Folks who look at us will tell us we look the same or they can't tell if our face is different. But we know when we look and smile into the mirror that our face does look different. I know you are not ugly with your "snarl" you just look a little different. Our beauty and happiness will  show thru our "disabilities" even though it is particularly harder for us at times and your friends and family still love you the same. Your joy and happiness will shine thru you. God loves us no matter how we look. As far as your health issues, please check with your Dr. You stomach issues may be a result of medication you are taking. Please hang in there....My prayers are with you.

[moe]

TP and Linny, (Greg too!)
Yep, misery loves company. It is important to vent/complain and then to see that there are others in the exact same predicament!
Did TP and Linny have their face nerve cut? or compromised?

My biggest hindrance if I had to pick one, is the severe tinnitus. I know Greg has it too.

I've actually joined the Tinnitus Association, Greg, and will keep abreast of all medical breakthroughs on this debilitating condition.

Let me know if you find out anything. (oops should be a different thread).
Would love to hear more from TP and Linny.
I sent you two a PM!
Maureen