Tongue and taste problems and AN swelling after GK

[Dee-dee]

Is anyone experiencing tingling of the tongue and a sour or bitter taste in the mouth  post gamma knife?  I am almost a year out after gamma knife and keep getting new symptoms.  Like everyone else here am freaked out over every new symptom.  Also, I 'd like to hear from folks whose AN has swelled up after GK.  How much did it swell and when, if ever, did the swelling go down? Thanks.

[mk]

Hi, the symptoms you are reporting sound like trigeminal-nerve related. While not extremely common, they are not unusual either. There might be some slight damage to the trigeminal nerve from the radiation, or the AN has swelled and is touching the nerve. Have you had your follow-up MRI post-GK? What does it show?
The swelling and timing of it are variable. It may happen from 3 months up to 24 months post radiation. The amount of swelling is also variable. The best way to know is by having an MRI and having your doctor compare it with the previous scans (preferrably the same doctor who interpreted your previous MRIs).

Marianna

[Dee-dee]

Yes, I had an MRI midway and it showed swelling and more pressure on the brain stem. At the time I did not have the tongue problem. I am waiting for another  follow up MRI in the fall. Thank you for responding.

[OTO]

I had taste and tongue problems for at least 6 mos after middle fossa surgery.   Eventually it went away.  I can't remember exactly how long it lasted.   First a metallic taste.  Then a salty spot on the side of my mouth.   Then for awhile my tongue felt like it was burnt.

[tx-anp]

I had taste issues for about 6 weeks.  Then everything just went back to normal.  Very strange.

[madison]

Hello.I had gk in 2008 but I didn't have any taste issues. I went through periods where the an was swelling and subsiding. This made me feel increased pressure or fullness and it seem to be affected by the weather.  I eventually had to get surgery ...3 wks ago in fact. And now I'm having tongue issues but I wish I could tell you more of what you are experiencing. It most likely will go away. I found that any symptoms I would get post gk were short lived.

[Anomar11]

Hi,  I had CK November 2008.  I had the taste issue you describe July 09.  It lasted a couple of months.  My one year MRI showed swelling and it stayed up for year 2.  Year 3 showed it coming down a bit.  I also had hemifacial spasms and a few good rounds of vertigo.  I had general wonky headedness for close to 2 years that I just learned to deal with.  Then it slowly started going away.  Now a little past 3.5 years, a few minor things crop up, but overall I'm doing well, and glad I had radiosurgery.  I think this taste thing you have will go away, and you're well within normal time range for swelling from what I understand.  Take Care.

[PaulW]

Taste is a pretty complicated thing and it actually comes from 3 different nerves.
Facial
Glossopharyngeal
Vagus
Your Facial Nerve is probably undergoing some stress as the tumour does its thing post Gamma Knife.
So your taste maybe a little weird with one facial nerve not working properly.
Thats the most likely cause.
Permanant facial nerve damage from GK or CK are rare, so one would hope your taste will return at some point.
If you have any doubts please see your doctor, I am a very poor substitute for medical advise.

[caryng1]

thanks for your comments. I had GK in Nov. and in January I began having balance and tongue and taste problems. I even scheduled an appt with my dentist, thinking perhaps it was an old silver filling or something causing this disgusting, annoying metallic which turned to a sickening sweet taste.  I keep trying to put something in my mouth to counteract the taste, I'll probably just blow up a few sizes. I keep trying to figure out if I don't have certain foods, perhaps it will not react. And food doesn't taste right. How long will this last? Will it subside?

[char1957]

Hi Dee-dee,
I did not have Gk for my AN, (I had cranny).  I am 3 years post op and I still have the tongue and taste symptoms you are experiencing.  Most of the time the right side of my mouth feels like salt is just pouring in.  The only thing that helps for me at all, is brushing my tongue with baking soda (using a soft toothbrush) several times a day.  Somedays it can be maddening, but hopefully in your situation, it will go away soon.  I wish you all the best!  Char

[Big Steve]

6+ weeks translab and I've had a metallic taste on the right side of my tongue since surgery.  Some foods trigger it more than others.  Red wine tasted weird the first 3 weeks after surgery, but I'm now enjoying it again, so I guess that means things are getting better.

Hope you all the best Dee Dee

[millie]

Hi all-Just want to add my experience...I had trans lab October 17th and about three weeks later I noticed something strange about my tongue and taste on the left side-the surgery side.  I agree that my tongue feels as if it has been burned and the taste sensation is just not the same...how to describe it escapes me...but the feeling of numbness after one has burns the tongue is right on.  Hoping it will pass.   I also have soreness still above left eye right under and over brow and left side of my nech going down-but only if I rub those areas.
Mil

[It is what it is]

I had a metallic taste in my mouth since middle fossa surgery in August.  It has transitioned to a strong sour taste.  Yuck.  But, I feel fortunate for the overall quality of my life now. 

Karen

[Bonnie B.]

I just started with the taste thing.  I am one year post GK and scheduled to have my one year post GK MRI on Tuesday.   I was fine for six months and then started with the left sided facial numbness, twitching and tearing of the left eye.   I also started with intermittent tinnitus.  I already had no hearing in the left ear prior to GK.   
I didn't even equate the taste thing with the AN so, at least now I know why I am having that.   

[millie]

It is sort of an annoying symptom..certainly tolerable...  I still taste food pretty and it has not made me lose my appetite! (unfortunately)...it is more of a sensation, I think......hoping it goes away some day.