ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: laurajean on November 25, 2013, 06:05:02 pm
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Hi Everyone,
I have been having a weird tongue issue and I'm starting to wonder if its related to my AN. For about 2 weeks now I have had this sensation of a really sore burnt tongue. Similar to the feeling of a burn from hot chocolate. Of course, I never burned it to cause the current feeling. It looks normal. I have tried all sorts of things to heal the problem but nothing has worked thus far. As soon as it seems like its going away it returns. I've tried diet changes, vitamins, probiotic, mouth rinses and so on. I need to go to dr but with holidays, making settlement on a new house, and tending to my 3 and 5 yr old its hard to find time. Has anyone had this issue?
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My tongue started out like it was numb, my doctor at that time (sorry not now or ever again) he keep saying it was b12 deficient. Then after about 1.5 years my right cheek area began feeling like I had Novocain always. Same reaction from the doctor so I went to dentist thinking maybe dental problem. I was told right away this is not dental problem something with the nerves... He wrote a note to my doctor to do MRI. That is l when they found mine it by then it was really large even pushing on the brain stem. I was told after the surgery it was so large and wrapped around nerves I am lucky that if it wouldn't had been found when it was it would had not been long. So glad I am here thank God even with being deaf, blind on the right side and balance bad. To this day my tongue is somewhat weird feeling but it may be my face on the right side is partly paralyze.
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I have noticed the same burnt tongue feeling for a while, now. I think it started after I had CK. I am also aware of a constant "bad taste" which began before CK. I plan to ask my radiation oncologist about this next appointment.
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Yes, the burned tongue feeling is fairly common as are taste disturbances, and I had both before and after surgery. I have adjusted as time passed, most people grow accustomed to the changes. I don't notice it too much any more.
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The burned tongue feeling on one side only is definitely related to the AN. Specifically the tumor puts pressure on the trigeminal nerve (or cranial nerve V, which is responsible for feeling in the face, as well as parts of the tongue). It is more common with larger tumors, that start to impinge on the brain stem, at the root entry of the nerve.
It is usually the first symptom; afterwards the whole AN side of the face may be affected (i.e. the novocaine feeling), and often eye dryness, due to loss of sensation in the cornea may be another symptom.
The burned tongue was my first symptom, and my doctor really didn't have a lot to say. After a couple of months I started feeling numbness around my mouth, which then spread everywhere else. This is when my GP ordered the MRI, which diagnozed the AN.
Fortunately these symptoms are relatively mild, and usually one can learn to live with them. There is nothing that you can really do to alleviate them, even steroids don't work. In my case they only resolved when the tumor was removed.
Marianna
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Hi 'laurajean'...
Just wanted to extend a belated welcome to the Forum and wondered how long it is since your diagnosis and whether the dimensions of your AN may have a bearing on your present symptoms.
Regards
Derek
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Hi, Laurajean ~
I want to concur with Marianna's astute comments regarding a 'numb' spot on the tongue and relate my experience with this issue for whatever help it may be to you.
I was diagnosed with a large (4.5 cm) AN (in 2006) that was impacting my brain stem. I lost all sense of taste (and dropped over 30 pounds due to a corresponding loss of appetite). Immediately following my surgery, my sense of taste returned but I noticed a small 'numb' spot on the left (AN) side of my tongue. My neurosurgeon said it was likely connected to trigeminal nerve damage from the large tumor and might disappear in time. It never did but has diminished somewhat and today, seven years post surgery, I am barely aware of it. Fortunately, the 'numb' spot never impacted my sense of taste at all and so it was easy to adjust to.
Jim
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Thank you for the replies. I have an appointment on Tues with my family dr to get his opinion. I figured I would start there. Maybe/probably its unrelated to my AN. I hate to be a complainer. Its more not knowing what is causing something that drives me bonkers. My tumor is a very small 7mm. I was just diagnosed in Sept. I went to the dr because I noticed hearing loss in my left ear(for over a year) and I was beginning to have trouble hearing conversation when there is background noise. I figured I had some creepy weird thing like a dead cricket in my ear:) I also have a bit of balance issues which I thought was caused by lack of sleep(and still may very well be). I also wanted to say that I notice so many of you have been through so much, I'm grateful that you are taking the time to share your knowledge. Best wishes for a Happy and Healthy Thanksgiving to those of you that will be celebrating :)