ANA Discussion Forum
General Category => AN Issues => Topic started by: sharonov on May 30, 2008, 08:13:51 am
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I'm a watch-and-wait person with my AN less than 2 (1.3 x 1.4). I'm 65 and it hasn't grown in 5 years, so I've become a bit complacent and accustomed to the tinnitus and relative loss of hearing in my affected ear.
A few months ago I developed trigeminal neuralgia on the same side of the face as my AN. It is controlled by tegretol but I'm wondering if anyone else has had this happen. My neuroligist gave a vague answer, namely that it was "possible." I did a search on this board but didn't come up with much. So.....am I the only one? Should I even link the two?
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Sharonov,
No, you're aren't the only person with trigeminal pain. Neuralgia, (word) also incorporates "stabbing-pain."
Occasionally, I get stabbing pain in my AN ear. I frequently have one-half of my face in extreme pain. (AN side) It seems that the shape or movement of the AN tumor may go "on-and-off" the nerve, at times.
Many of us have the symptoms you described. So far, I'm pleased with the radiation choice.
Keep informed via AN newsletters (subscription) and perhaps, the radiation forum where you may communicate with doctors. (more feed-back and answers)
Palace
See below for information on Tegretol for those people who wish to contribute data to Sharonov!
http://www.betterhealth.vic.gov.au/bhcv2/bhcmed.nsf/pages/nvctgror/$File/nvctgror.pdf
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Sharnov -
there are several topics on trigeminal on this board; I just searched :)
Type the word trigeminal in the search box directly under your user information at the top lefthand side of your screen and click on the search button and you should find them.
Good luck,
Jan
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I can comment on my experience with TN.
About 2 years prior to the surgical removal of a 4cm AN, I began having symptoms on the affected side of my face.
It was painful and felt like there was a knot near the TMJ muscle. No, I don't have TMJ.
At that time, the pain was achy.
2 years later, I had the surgery and it was sticky b/c the facial nerve was involved with the AN. The surgery was long and I was lucky to not lose my facial nerve completely.
Now, I suffer though from more painful TN. I am coming off of an episode as I type.
For the past 18 months, imitrex has been a lifesaver.
Yesterday, it did not work.
The pain is more shooting and much more painful than past episodes.
I get about 1 -2 episodes per month which last 2-3 days.
They do happen near my period or ovulation.
I've been on topomax but it didn't help me except I lost 10 lbs which put me in size 2. I gained it all back within 2 months of going off it.
So, that's my story. I can tell you that the doctors don't have answers for this. I've gone to the Diamond Headache clinic and they put me on topomax.
I've recently starting using shots of B 12 once a week on myself. I am wondering if this is triggering anything more significant.
B 12 is supposed to help with Facial regeneration so who knows?
I wish you the best. Everyone is so different as well as each case.
Take care,
Mary
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Lifeisgood, has your neurologist suggested carbamazapine? That has worked wonders for me and made all the difference. However, I'm a member of the TN discussion board and there are people who are on 5 times my dosage and still don't have relief. Like any illness, everyone's severeity level is different.