watching & waiting

[dixie]

Hi I was just wondering if there are any "watch & waiters" out there.  Would like to hear from you.  I have a 1.3cm AN for which I have decided to just monitor with MRI's for the time being since I have no significant symptoms other than mild tinnitus.
Sincerely,
Connie

[dpetty]

As for me I couldn't stand living with that hanging over my life, when my AN was discovered it was 2 cm Jan 2001, I had lost half my hearing overnight and vertigo just to name a few problems I was having. May 1,2001 I had it removed because I was bearly able to make it thur the day it had grown to 8cm x 4cm. My AN turned out to be the 2% they speak of as being aggressive but having God on my side I pulled thur a 12 hr operation in good shape, lost my hearing on the right side totally and had alot of neck pain but I joined a fitness club and worked out everyday and worked thur that pain. Now 3 yrs down the road I am in good shape considering all I went thur.

David

[Sheryl]

Connie - I am a "wait and watch" patient for the past 3-1/2 years.  My tumor is actually on the 9th cranial nerve (as opposed to acoustic on the 8th cranial nerve).  I have been followed by serial MRI's and, in this time frame, the growth has only increased by 2 to 3 mm, which can also be considered technical differences. It is now measured at 12 mm or 1.2 cm.  The only symptom I have noticed is tinnitus in that ear (right) which is bothersome only when I dwell on it.  The 9th cranial nerve controls swallowing and gag reflex and nothing has bothered me with regard to those two functions.  I have been told that where it is on the brainstem is difficult to get at surgically so, if and when the time comes, I will more than likely opt for cyberknife.  If I were younger (I am 58) and hadn't just gone through breast cancer and a husband who had removal of another benign type of brain tumor (meningioma), I would probably say, "get this thing out of here" - but my plate has been full and what I've been reading and finding out about cyberknife seems the way for me to go.  I probably shouldn't be writing tonight as tomorrow is both our follow-up MRI's - hopefully I'll have good news.

[paulb24]

My AN was diagnosed in February 2004. I had lost most of my speech perception in my right ear over a period of about 2 weeks. Previously I had fallen down a flight of steps on an Alaska ferry. I was able to brerak my fall by landing on my hands. In January 2004 I had a brief episode of vertigo. After diagnosis of my AN, my ENT sent me to get an MRI, which showed a very small AN, about 2mm. Then he gave me the names of several specialists. This list consisted of microsurgeons. I went to one and was told that lat my age of 80, it was too dangerous to operate on me. He had no suggestions of any radiation specialists. I thought that I should visit a place where I could talk to both microsurgeons and radiation specialists. I went to Johns Hopkins and interviewed Dr. Rigamonti and Dr. Kleinberg. They both said my AN was tiny and Dr. Rigamonti told me he would not operate on me because of the danger. He did give me some worthwhile information about the development of  the symptoms.

I have now had my third MRI with no appreciable increase in size.

[Sheryl]

Hi everyone - Follow-up to my post of yesterday.  Both my husband (meningioma removed last year) and myself (9th cranial nerve neuroma) got wonderful news.  His shows no re-growth - meningiomas tend to grow back even though benign and mine has stayed the same size not only from last MRI six months ago but also compared to the one done a year and a half ago!   We feel like a huge weight has been lifted and can finally think ahead to the future.