ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: palvetty on February 04, 2014, 10:40:56 pm
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Hi. I just decided to join this forum in hopes of getting some feedback about what I should do next. I self-dianosed this tumor over the summer and went to a private lab to have an MRI. Brought home MRI and looked at it on my computer, really expecting to see nothing unusual because I had convinced myself it can't be an AN because I'm never dizzy! ...and there it was. My heart skipped a beat and I felt like I was on the edge panicking. But the more I have read, the less frightening it becomes. So, after a few weeks of intentionally staying busy with other things, and trying to forget it was there...I finally realized I needed to have the MRI read. I made an appointment with a local hopsital to have a neurologist read the MRI to determine the size. I was told "about 1cm". I wasn't impressed with this particular ENT because he had no personality and he had little to no experience with these so I went to a competing hospital system and that ENT told me the same MRI read 1 1/2 cm! I later learned I could call the House Clinic and get a free consult, so I forwarded all my info and MRI. Within a week, Dr. Goddard contacted me and explained to me, very kindly, that the MRI was not a very clear one (because it wasn't specific to the inner ear) and from what he could tell, it looked like it measured 2 cm! Good grief...it keeps getting bigger on the scan!! Since I live in SC, he suggested I contact MUSC. I did so and just met with Dr. Lambert and his staff yesterday. They ran another MRI and he said my AN is 2 1/2 cm! Now here are the pertinent facts: I'm 45 yo, in great health, have slight numbing sensation in my jaw area closer to my effected ear (I notice this now that I know it is a symptom, whereas I don't know that I would have noticed it before). I have a slight decrease in taste. Of course, I have ringing in the ear constantly. There have been stabbing pains rarely in that ear. I have only been dizzy once for a couple days over the summer when I got hot outside. Dr. Lambert said I could W & W and have another MRI in 3 months to see if it grows. He also said mine has a large cyst in it, so those tend to grow faster than more dense ANs. Has anyone heard of this? He also suggested Gamma Knife as an option. But I thought my tumor was too big for this from information I have been reading. I mentioned being concerned about the swelling with radiation and also the 20plus year unknowns. He also suggested the translab surgery approach. I just don't know what to do at this point. I have talked with two women who had surgeries for tumors smaller than mine and one lady who had a smaller tumor treated with radiation. All were younger than me by a couple of years. Does anyone have thoughts on which option you would lean toward? Sorry for all the details.... Thanks for any comments!
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Hi - This is the worst part of finding out - what to do about it! 2.5 cm is not small and I have heard the cut off size for any radiation treatment is 3.0 cm. Three months is not too long to wait but also not sure what kind of growth you may see in that time. No one can actually tell you what to do - everyone is different - you have to keep doing your research and find what is comfortable.
Good luck and keep us posted.
Sheryl
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Valpal ~
I'm sorry to learn of your AN diagnosis and of the stress caused by the increasingly larger tumor size the doctors give you. Even though they can lie dormant for years ANs are known to have sudden 'growth spurts'. Yours may be doing just that. Based on tumor size (2.5 cm) you still have the option of radiation but that window of opportunity may be getting narrower by the week which would indicate that a treatment decision will soon be necessary. Cystic ANs are not unknown and they can be more challenging for the surgeon but that is a medical issue best discussed with a physician.
Your anxiety is perfectly normal...we've all experienced it. The decision process is difficult. No one wants to make the 'wrong' choice. Focus on getting all the information you can (much is available here on the ANA website) then decide if surgery or radiation seems best for you. Although outcomes can never be guaranteed and of course every AN patient is unique, once you've made your treatment decision a lot of the stress disappears and you can look forward to recovery and getting past this experience. That was my attitude...and it worked. I wish you the same success.
Jim