Mouth waters

[Randy]

Hi, I had surgery about 8 1/2 months ago.  I am glad to say that things went well with my surgery.  I did loose my hearing on my right side.  I miss it very much for a number of reasons: (1) It's hard to follow along with conversations in a room full of people - like in a resturant. (2) I love music and now I have to enjoy it in mono.  (3) I have a difficult time telling where sound is coming from.  I work out of doors, many times near traffic, and it makes me nervous at times wondering where vehicles are coming from.  Or when someone behind me calls to me and I am looking all around, except behind me.  That's sometimes a little embarrassing. 

I still have a problem with my dizziness.  I have read some comments where some say they get back about 85% of it back.  I don't feel as tough I have reached that point yet.  I am wondering how long it has taken some to regain their fullest potential with their balance.  However, I am very active and I ride motorcycles and go backpacking. I am thankful that I am not too limited in the things I can do. 

I am also experiencing times where my mouth starts watering.  It is a little salty tasting and has somewhat of a metalic taste.  Has anyone else had a similiar experience?  If so does it ever go away?  There have been a few occasions where I have woken up choking because of it. 

I do have to say that, while life isn't quite what it used to be, I still have good health and life.  I have read some comments about some who have felt bitter about their experience and how their life is now.  Some have said that if they had known what life would be like after surger they would not have gone through with it. It doesn't help to look back at how things were before the surgery.  I look at how things are now.  The tumor is gone and I am otherwise healthy and I know I will continue to make adjustments.  If I hadn't had the surgery the tumor would have kept growing and all the problems associated with the tumor would have continued (facial nerve problems, lack of hearing, balance problems, and eventually death).  I'm glad I had the surgery.  Life is good. I hope it is for you too!

[Jeanlea]

Randy,

I'm nearly 4 months post surgery.  Don't know much about the mouth watering with the different tastes.  Mine seems to be normal in that respect. 
I did want to thank you for your post, especially the part about appreciating what we have after surgery.  I needed that today.  It's been a bad day for me.  I have left-side facial paralysis and have been having problems with my eye.  Now I have pink eye in both of them.  I walk into the eye doctor's office so often they know me by name.  lol  I look in the mirror, see both eyes red and a non-moving half of face.  Could be a monster movie in that.
I do know that things will get better.  I'm just not that patient today.  And I did spend most of the day cleaning my bedroom.  That's enough to make me unhappy all by itself.  My balance seemed to be off a little more today.  Maybe that's because I was moving in strange directions as I cleaned. 
I do feel lucky that I have not experienced any dizziness or lots of headaches since my surgery.  I'm able to exercise again.  Today was just a bad day.  Tomorrow will be better.

[Sanddollar]

I appreciate the perspective that each of you bring.  I have yet to have surgery, but am scheduled to do so, and need to understand all of the potential outcomes.  As I read the many posts on the site it is clear that AN is survivable, but we shouldn't expect life to be exactly as it was, or in some cases, at all like it was.  It grieves me to read about the facial paralysis that some are experiencing and the loss of dreams as a result of AN.  I may be right there, too, in a month, but one thing I have decided upfront is that I have to go on with whatever the new life is for me.  No looking back or second-guessing.

When I sat down with the surgeon to discuss my options, I gave him a list of priorities: 1) survival 2) enough balance to have some quality of life 3) preservation of facial function 4) preservation of hearing (not likely in my case anyway).  I feel if #1 happens, the rest will work out.  This and all of the loving support from friends and family will get me through and has brought me peace.

BTW - sorry this did nothing to help with the metallic taste question.  Hopefully someone will get this back on track!!!

Sanddollar

[Randy]

Sanddollar,
Thanks for your response to my watery mouth.  I'm sorry to hear that you have to have an operation.  I'm sure things will go well for you.  Before my surgery the doctor (Dr. Jackler at Stanford University Hospital) went through all the possible risks, procedures, and problems that may result.  I did a lot of research before I saw the doctors and so I was well informed.  This helped me understand what the doctor was telling me and I knew before hand the type of procedure I wanted to have done.  It also helped me in knowing what questions to ask.  My surgery lasted for 9.5 hours.  I have learned that there is nothing to fear about surgery....it's the waking up afterwards, that's when it hurts. 

Because you are about to have your surgery I thought you like to know how my recovery went.  Actually it progressed very well.  I kept a positive attitude through out it all.
While I was recovering I had an individual next to me that I must say was quite the complainer.  I don't think the nurse got more that 10 minutes of rest between his calls for help.  He moaned and groaned all the time.  He was not an AN patient.  Of course I don't like hospitals, but I really wanted to get away from this guy, so I guess it was an even bigger incentive for me to do what I needed to do in order to get released to go home as soon as possible.  I had the surgery on Wednesday morning.  I spent the next day in ICU and then Friday, Saturday and Sunday morning  in the hospital room with this other guy.  By Friday afternoon I was getting up from my bed and walking around the hall with the aid of the medicine holding tree.  It had four little wheels on it, but it was something to hang on to.  Each time I got up for a walk I went a little further each time.  I also did all the breathing exercises I could to build up my lungs and keep my oxygen level up.  One of the doctors that came in and saw me said I was doing amazingly well for someone who had just had brain surgery.  Sunday morning the nurse asked if I would like breakfast and I said no, I'd rather be realeased and eat on the road.  By 11:00 am I was on my way home.  My recovery continued well once I got home.  The only real problem I had was with my lower back hurting to a very high degree.  Pain pills did little to help.  It may have been a reaction from the anesthesia I don't know.  Anyway, I would walk around the neighborhood once or twice each day.  My next door neighbor got a kick out of watching me.  He said I looked like a drunk man walking down the street.  By the second week I thought I'd try riding a bike.  My wife thought that wasn't too wise, but I don't think it was any harder than trying to walk.  In fact I think it was even easier.  But, I wouldn't recommend that anyone else do it.  On the fourth week I decided to start driving my car.  By the eighth week from the day of my surgery I returned back to work.  I do Park maintenance and repairs for the City of Redding.  It can be quite a physical job at times.  After about two more weeks I decided to start riding my motorcycle to work.  I still cannot hear out of my right ear.  I'm sure I never will.  I sometimes feel a slight weakness in my right eye, but I can blink and get tears in my eye.  I continue to get a lot wetness in my mouth at times. However, it's not as frequent as it use to be.  I'm sure it has something to do with the salivary glands, as a result not all things taste quite the same.  I hope this has been a help to you. Best wishes on you up coming surgery.  I hope your recovery goes as well as mine did. 

[marcy]

Hi,
Just wnted to let you know I had surgery approx. 7 months ago and am also doing fine.Little problems here and there.  They are similiar to yours.  I don't have the watery mouth but I do have the funny taste in the mouth.  I was wondering how long this was going to last.  I am also thinking of having the BAHA implanted.  I will start looking into that.

Thanks,
Marcy

[nannettesea]

The mouth watering and metallic taste make me concerned for you.  Though it's late in the game, did you talk to your doctor about it?  Metallic taste can indicate a CSF leak, that's all I know.  Please check it out with your doc.
Nan

[nannettesea]

Hi,
I was misinformed.  Metallic taste is from manipulation of the facial nerve.  CSF leak would taste salty, not metallic. I have the metallic taste also.  Doc didn't say how long it would last.
Nan

[Randy]

nannettesea,

Thaks for the info.  I wondered what made that metallic taste in my mouth.  When I first noticed the watering mouth I was about four weeks post op.  I went back east to North Carolina to reover for a few weeks at my family's home.  When I started having a lot of fluid draining from my mouth I was very concernned.  I called my doctor back in California and he said that if I had head-aches along with it I should have it checked out.  He gave me a couple of referrals in North Carolina.  I didn't have head-aches so I didn't have it checked out while I was back there.  I did appreciate that the doctor was quite prompt in helping me find a place where I could go if I needed to.  When I got back I was due for a follow up visit with my doctor in Stanford.  He said it wasn't spinal fluid.  Now the fluid I get in my mouth happens much less frequently than when I was in NC.  There it happened about twice a day and would last from 1/2 hr to 1 hour.  It would drip about 1 drop per second.  So, it didn't take long for my mouth to get full.  Now it happens once a month or so.  Although, I do get the metallic taste in my mouth daily.  I read that someone else said salty things don't taste as good as they used to.  I agree.  One thing I used to like was to snack on is sunflower seeds.  I rarely eat them anymore.  Oh well, I'm sure they aren't too good for me anyway. 

[Kathleen_Mc]

Randy: I am 15 years post-op from my orginal surgery and I still have the metal taste sometimes and I drool as well, mostly while I sleep but sometimes while I'm awake....I don't take notice so much anymore though. I haven't looked to anything to help it but there are Atropine drops that dry the secretion in the mouth that may help, ask your doctor if this is something that is a great problem for you.
Kathleen

[Sanddollar]

Randy,

Thank you for sharing your post-surgical experiences and I am glad that you are progressing well.   I do hope that I get a better roommate than you did, but perhaps a bad one would motivate me like yours did!   

It will be interesting to see if I have the same reaction to salt.  I am a HUGE salt junkie.  I cannot imagine not liking it anymore, but it would probably be better for me if I didn't.

Best of health to you in 2006!

Sanddollar

[Boppie]

After reading these posts, I realize the taste I have is metallic, not salty.  How deceptive the tongue is when the nerves are weakened.