Post Translab Taste Problems

[milhaus]

I just had a 3.8 cm tumor removed on July 30. The operation ended up taking over 18 hours and recovery has not been very fun for me. The doctors had to leave a pretty large piece of the tumor to save my facial nerve so I am going to have to do radiation soon but so far I have no problems with my facial nerve function. My dizziness is still pretty bad but I think I am making good progress recovering. One effect I have noticed from surgery however that I wasn't expecting and haven't heard much about it a serious problem tasting food. Almost all food tastes off, or doesn't have much taste. My mouth is constantly dry no matter how much I drink. Has anyone else had problems like this? Did you recover? It is a normal effect of the surgery or does it signify some kind of nerve damage? I really hope I can get over this. Can anyone help me?

[LakeErie]

Yes, taste disturbances are a result of the surgery affecting your cranial nerves. I had taste disturbances both before and after surgery. The problem has improved since my surgery, but it is probably just getting used to the changes as much as nerve regeneration.
It sometimes takes 18 to 24 months for cranial nerves to normalize. Some people are quicker to get better than others. You are are very early in recovery, so you will need more time to know if the problems you are experiencing will improve.
I have no dry mouth so I cannot speak to that. Maybe a call to your dentist may give you some ideas on helping with that. Things do get better, but on your own pace. Good luck.

[Tod]

These things happen, and happen differently to patients. I lost the inability to taste sugars for a couple of years, and then about the time I had gotten 60%-70% of those tastes back, 28 sessions of FSR zapped it back to almost zero. A year later, i'm back to about that 60%-70% range.

Dry mouth is also not uncommon. Biotene products can help. You are early in the healing process, so give yourself time. 

-Tod

[milhaus]

Thank you for the replies. I am learning that it seems only half of my tongue is affected, and the way I eat can change the way things taste depending on how I move the food through my mouth. Salty foods seem to be the biggest problem. Maybe even if I never completely regain function I can learn to adapt.

[kmr1969]

Hey milhaus,

My situation is similar to yours.  I had translab back in November 2012 and have taste buds that only seem to work on the non-AN side of my mouth.  I also have significantly more numbness on my face and particularly in my mouth than I did before surgery.  I am hopeful that over time the numbness will lessen and the taste buds will improve.

I guess were only going to have to learn to be patient.  I was (probably naively) hoping that by my 1 year anniversary, I would be back to normal with the exception of the lost hearing in my AN ear, but I may have to have more patience than that.

Stay positive and I hope that things improve for you over the coming weeks and months.

Ken

[Rob85616]

Milhaus - I also have similar symptoms post surgery 1.5 yr later.  Still have a weird taste in my mouth, feels like my tongue is burnt, metallic taste, numbness,  etc.  I have about 1.5 CM left of my tumor so facial nerves would be saved.  I wonder sometime if tumor that is left is still bothering my nerve.  The symptoms seem almost worse post surgery..  but I keep hoping it will still improve with time.  It seems like everyone heals differently!

[milhaus]

I got to talk to my neurosurgeon today and ask him about this issue and I received a very illuminating answer which will probably be useful to everyone else too. There is a nerve between the vestibulocochlear nerve and facial nerve called the nervus intermedius. This nerve controls taste, salivary glands, and tear ducts for the side of head it is on. I have been noticing problems with all three of these. The tumor also sits between these nerves but at some point in its path from the face to the brain it moves from being right up against the facial nerve to being right up against the vestibulocochlear nerve.

Where this move occurs is different in everyone and in some people it is closer to the face, and in some it is in the middle, and in some it is closer to the brain. Where this crossover occurs in relation to the tumor determines whether there will be damage to it because they can't monitor that nerve the same way they can monitor the facial nerve. So it the crossover occurs right at the tumor then that means that the nerve will likely be destroyed when the tumor is removed but if the crossover happens after the tumor so the nervus intermedius stays right up against the facial nerve through the tumor then it is more likely to be saved. He drew pictures while he explained it which really did make it easier to understand.

He also said that if it gets destroyed then one of the ways the body manages to repair itself is that nerves from the side of the tongue that works simply start to grow over toward the side that doesn't work. In a way this is bad news because I was really hoping that these problems were just an effect of anesthesia or a little inflammation after surgery and that they would go away in a few weeks but it sounds like recovery will really end up taking quite a bit longer. It is good to know more what to expect though.

[neetze1]

Interesting.  I am 5 months post translab and have a terrible taste in my mouth.  First a part of my tongue was numb.  Then, I had the burnt feeling (like you burnt it on something hot) and metallic taste.  Now it just tastes real bad and it seems to be around the upper teeth on the AN side.   I went to a dentist to see if I had an abscess or something.  He said everything looked fine.  After a few more weeks, I went to my family doctor thinking I might have a sinus infection since my sinus on the surgical side is always blocked and nasty when I blow my nose.  He put me on a round of antibiotics.  While I do see an improvement in my sinus, my mouth still has a terrible taste all of the time.  I seem to be able to taste food okay.  But this nasty taste is most annoying! 

[phantagrae]

Was the doctor talking about the Trigeminal nerve?

In my case, my tumor is apparently pressing on my trigeminal nerve.  When I first started noticing odd things in my mouth--scalded tongue, numbness in my lips, cheek, etc., I mentioned it to my dentist as I thought it had something to do with some dental work I'd had, though that was years ago.

He immediately mentioned the mandibular branch of the trigeminal nerve and thought I should see a neurologist.  By the time my neurologist appointment came around, the numbness had spread up the whole side of my face.  It's not severe numbness, but it involves my mouth (scalded tongue, "off" taste, numb palate and gums, inside/outside of my cheek), my nostril, my eye, my forehead and my scalp all on my AN side.

The trigeminal nerve covers sensation to those parts of the face--the mouth, the cheek and eye and the forehead and scalp--while the facial nerve has to do with motor control of the face.  That's the way I understand it, anyway.

So, if your AN is or was touching the trigeminal nerve, that would account for such sensations (or lack of sensation, as the case may be.)
In my case, I'm having radiation treatments, so the tumor will still be sitting in there, and may still press against that nerve, and it may or may not shrink at all.  My doctor said that it's likely that the numbness will continue indefinitely, even after treatment.

Fortunately for me, it doesn't really interfere with my every day life, except that my eye tends to feel dry, so I put drops in it each morning and most nights.  Otherwise, I'm used to the odd sensations, I guess.

[mk]

Apparently both the trigeminal and facial/nervus intermedius nerves are responsible for taste on certain parts of the tongue. So depending on which nerve is affected, different parts of the tongue may be affected.

I have experienced both types of symptoms: The scalded tongue/numbness feeling that phantagrae is talking about are attributed to compression on the trigeminal nerve. As long as the tumor is there, the symptoms continue. I had this upon diagnosis, after GK and up to my surgery. Another very common symptom is dry eye, because of reduced cornea sensation. In my case all these symptoms resolved after the tumor was removed.

The odd taste that people commonly experience after surgery is due to damage to the less commonly known nervus intermedius. Milhaus described that nerve very well, so I am not going to repeat the explanation. Apparently because of its location it does get damaged during surgery, even when there is no additional damage to the facial nerve itself. The odd taste usually resolves. I remember that everything tasted like ash after my surgery, especially liquids, even water. This resolved after a few weeks.  Lacrimation/salivation is also controlled by this nerve, and this is why so many of us experience dry eye, without having any other apparent signs of facial weakness.

Marianna

[lifeisgood]

I lost taste on the AN side post surgery completely. The only reason I knew this is I had a lollipop in my mouth and lost taste on the right side.
I am 10 years out almost. It has been the least significant part of my recovery.
I also lost hearing. I also have facial issues (Getting better but still there).
I have experienced pain too which nobody can address specifically in my face/teeth.

[bgaard9]

My son had a long trans lab surgery on 2-12-13 for AN and had only one impact on taste, he said that honey tasted like vegetable oil and had no sweetness, regular sugar did not lose flavor. This went away in a couple of months.

0n 8-2-2013 I had a different surgery that monkeyed around with the facial nerves at a different spot, (a parotidectomy for a benign Warthin's tumor) and I have gained 20 lb since surgery because I have difficulty eating anything with much flavor and have become hooked on tapioca pudding.

[terisandler]

I'm glad this topic came up again. I had CK in May and am noticing increased symptoms now, which is normal.  I am very aware of the burning sensation in my tongue, dry mouth, bad taste.  In hindsight, I realize that the bad taste & dry mouth have been around quite a long time.  Also dry eyes.  Makes sense since I was told my AN has probably been growing over the past 20 years.