Seeking Input - Altered ability to taste foods & dry mouth

[DZ]

Hi all -

I am 5 weeks post op and was wondering whether others had/have these issues and whether they resolved.  One issue is that my ability to taste foods seems to be altered. I can taste some sweet foods - like jellies, sugar, fruit and some spices/oils but most foods taste very bland or have no real taste.  I know the nerve (s) supplying the tongue were impacted during surgery. I also dont have much of an appetite anymore. I have gone from being hungry all the time (preop) to making sure I eat an adequate amount of food daily. The second issue has to do with the amount of saliva I am producing when I eat. I find breads and other dry foods stick to the inside of my mouth and I need to drink a lot in order to eat and swallow some foods.  Did/Does anyone have these issues? And did they resolve to your satisfaction? How long did it take? Thanks in advance!!  DZ

[donjehle]

Hi DZ!  Thank you for posting your experience on the forums!

I hope you will also share the rest of your story and your post op recovery with us.  I would love to hear your full story.

I have not had surgery, so I cannot tell you about that part.  However, my initial symptom was burning tongue syndrom (which is not typical for acoustic neuromas, by the way).  The taste of food changed completely.  Most of it was very bland.  I lost my appetite and went from being hungry all the time to trying to take in enough nutrition to survive.  During that time, I lost over 20 lbs. (which was great -- but I wouldn't recommend it for anyone).  So, even though I have not had surgery, our experiences have had some similarities. 

Over time, it seems that the taste of most foods have returned.  So, that might be your experience.  I don't know.  I would love to hear if the taste of some of your foods return in another six months or so.

I haven't had any experience with a lessening of my saliva, so someone else might need to address that.

Again, thank you for posting your experience, DZ.  There are many more people who read the forums than post on them.  So, someone may gain from you sharing your journey as they go through something similar to what you have. 

Best wishes on your continued recovery!
Don

[DZ]

Hi Don -

Thanks for the reply! What full story, information do you think I should share? I dont want to bore people so helpful if you can guide me on the information that you believe would be useful!

I am surprised to hear that although you have not had surgery that the taste of food has changed for you and also lost your appetite. I thought it was completely related to the surgical manipulation of the site.  I know what you mean about the positive aspects of losing weight but agree would not recommend our methods to do so!! 

Its good to hear the foods tastes have returned for you - I wonder why - the physiological/biological reason for you if you are at the wait and watch stage and the tumor may or may not be growing.  Perhaps it is shrinking and thus the reason for the change?? Have you asked your MD?

Thank you again for your great communications!! Look forward to hearing from you and others!

Donna

[donjehle]

Greetings, Donna!

I have talked it over with my neurosurgeon, and he had never had a patient with that problem, so he doesn't know what to say.  However, he did say there was a certain nerve which controlled taste on the tongue (I have forgotten the name of the nerve).  He said that if the nerve is nicked during surgery, it is possible that it could cause the kind of problem I was having.  But it would usually be on one side of the tongue (Mine was more on the tip of my tongue).  He also said that it could happen if the acoustic neuroma was pressing upon that nerve, but that mine was too small and not located in the right place to do that.  So, I am puzzled (as he seemed to be).

I don't think my taste for food has ever returned completely to normal, and I find that I need to salt my food a lot more than I used to.  I don't have high blood pressure so adding more salt so far does not seem like it is harming me.

What was your surgery like?  What were your emotions both before and after your surgery?  What was your recovery like, both in the first 24-48 hours, and afterwards?  Did you have any side effects?  If so, what were they?  How long has it taken you to go to work or to do your normal activities?  I think your answers to these types of questions can be helpful to those who read the forums, and they are thinking about the possibility of having surgery, but they are not sure.  Since I haven't had any treatment for my AN, I can only imagine what you have experienced in the last 5 weeks or so.

[DZ]

Hi Don -

Im sorry you are having taste issues and your tasting has not returned to normal but that salting helps.  And too bad both you and your surgeon are puzzled. There seems to be so many/multiple unique symptoms and side effects to this tumor, treatment and non-treatment (watch & wait) that it can be frustrating. I agree this site is helpful so we can hear from others.

Thank you for the questions!!
DZ

[schomiczewski]

I had retro surgery on November 2 and a CSF leak repair surgery on November 7. I ended up with oral thrush and I asked why this was happening and they explained that the facial nerve that was impacted is one that produces saliva and so I have what’s called dry mouth. I don’t know if this will get better with time. But there is some thing called Biotene that I’ve been using - a liquid rinse. and also on Amazon you can find dry mouth drops to suck on. I think they help a little bit. My biggest postop issue is extreme nausea and no one can figure out why I have it. It’s now three weeks after the second surgery and it almost feels worse than it has any other day.  I also have quite altered taste and I don’t know if that’s due to the dry mouth or due to the nausea. I know your post is a couple months old but in case you were wondering if anyone else experienced the same I wanted to share that I am experiencing it.

[Greece Lover]

I had tast disruptions after surgery for several months. It slowly resolved and is fine.

As to salivation, I have the opposite problem.  Sometimes foods trigger excessive salivation on the AN side and I pour saliva like Niagara Falls for a couple of hours.  it's pretty gross!

[DZ]

Thanks schomiczewski & Greece Lover for the feedback.  Its be a while since I have been on the site and really appreciate sharing your experiences.  I had translab on 8/18 and still have significant taste alterations and dry mouth. I have been using Biotene too at night before bed but I found that sugar free hard candies (carmel flavor) are best for me during the day as the Biotene doesnt seem to last very long, I pop them in my mouth all day.  I dont have any nausea and so very sorry you are experiencing - and that that they cant find the cause.  There must be a physiological reason.  Can you see a GI specialist? Any change in the nausea - I think its been about a month since your last post.  Again thanks for your replies.

[schomiczewski]

Hello, no change in nausea for me sadly. This week my PCP is ordering MRI just to make sure nothing is going on related to the surgery. I have actually started a new thread about my issue. I will definitely update that thread with any new updates. Thank you for inquiring. (I also continue to have altered taste - I no longer can drink coffee which I love😞.) Suzanne

[DZ]

Will check out your new thread for an update on your MRI. It must be very difficult to feel nauseous all the time - you also must be losing weight.  Thinking positive thoughts for you.  Donna

[donjehle]

I lost 20 lbs. when food didn't taste right, but as my taste buds slowly improved, I also, unfortunately, slowly gained my weight back.