Recurring AN?

[Kathleen_Mc]

elenson: I was just re-reading your orginal post and I have a question for you....why are you taking pain killers still? I know the post-op headaches are painful but they are also never ending. If you don't want to be taking these drugs just stop (I myself did it and although it isn't easy I cope). The longer you take the stuff the higher your tolerance is going to be and then what? And if "mild narcotic's" don't help you what are they going to give you post-op if/when you get the regrowth out? Have you been tried on any of the other types of medications for preventing headaches that aren't narcotic's? (some anti-hypertensives and/or antidepressants do this when taken in very small doses and aren't addictive). Just wondering. I too was young when I first had surgery (23) and that was after 4-5 years of taking narcotic's to kill the pain caused by the tumor (although I was mis-diagnosed all those years....but that's another story all in it's self). Kathleen

[Jules]

I'd be curious what symptoms you experienced that caused the suspicion that the AN had returned.

[jcinma]

Jules-
I had already lost the hearing on my left side from the first sugery in 1996 so obviously hearing loss was not going to be a symptom as it was the first time.  Facial and tongue numbness was the major symptom for the reccurrence.
Jane

[Jules]

Jane,

That's good to know.  My surgery was in 1996 as well.  When did your AN recur?  Where did you have your surgery?

I have been having trouble for the last month or so but my ENT thinks it may be due to jaw clenching which is taking a toll on my weakened right side muscles.

[becknell]

Regarding the above discussion on the frequency of ANs - 1 in 100,000 vs 1 in 500. If you read the literature closely, you will see the AN occurence is described in many places as 1 in 100,000 people PER YEAR — not 1 in 100,000 over a LIFETIME. About 2,500 to 3,000 people are diagnosed with an AN in the United STatres each YEAR. So the actual occurrence may actually be 1 in 500 people have one at some point during their lifetime.

[Kathleen_Mc]

And in terms of occurance of AN's most studies look at people diagnosed with AN while living, I forget where but once I read that the incidence of AN's  is even higher when they include the number found in the dead whom didn't know they had them and AN wasn't the cause of  death.
Kathleen (I read that quiet a few years ago).

[thecakes]

   Thats right Kathleen.  So many dead people are found to have AN's and they did'nt know it.   I allso think that the dr thinks and says he has all the tumor but finds out later that he did'nt get it all.    My tumor was removed in 02, not one headace have I had yet!  No pain whatsoever, but I went into a coma for 4 weeks, had a stroke, and lots more}  I read too  many times that a tumor has come back and thats scary.

[matti]

I had my surgery in 1998 with total tumor removal, started having problems last November. My facial nerve had recovered to about 80% of normal within 18 months of surgery. In November the tight pony tail feeling that I had on the AN side of my head and face started to loosen up. The corner of my mouth did not feel as restricted. I also started experiencing heat and extreme sensitivity on the AN side of my head/face. I had an immediate MRI, as the doctors thought my tumor had returned, but it was negative.

Since then I have been to a couple more neurologists and no one seems to agree on a diagnosis. I have been told that my facial nerve could still be healing even 8 years later, or it could be neuritis.

matti