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Possible AN Again

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Dealy:
Well I guess it was too good to be true. In my last MRI at 6 months the radiologist that read initial report indicated some enhancement on the left side where I had surgery 18 years ago. I e-mailed facility where I had my FSR radiation and mentioned this concern and they indicated it could be scar tissue from previous surgery and would look agasin at my yearly MRI in June. I wrote and send last three MRI's to surgeon who did my AN surgery 18 years ago (yes he is still in practice). Heard from hiim yesterday. Will not give my any input by letter-have to make a personal visit-figures. Anyway my symptoms are increasing by the day. I log all daily symptoms so I can keep track. Started out on January 3rd with my ear itching inside like crazy. Then it progressed to an occasional aching of the ear-and now last night my temple is tight like a vice is on it. My left eye itches alot. I was hoping this would be an ear infection but a little birdie tells me this is evidence of regrowth of my original tumor from 18 years ago. However my balance and hearing nerve were removed so the only nerve left on that side is the facial nerve. It bewilders me that I have had all these MRI's the past two years for my tumor on the right side and this would go totally undetected until now. We are going to see my ENT on the 30th of January. However this is the same guy who told me I did not have an AN on the right side 2 years ago. I would change ENT"s but we live in a rural area so they are not that abundant. The one we have in our hometown-what I have heard is even worse so I will stay away from him like the plaque. Most likely will travel to Kansas City this spring to see Doctor who did my orginial surgery and then see what they say. I already have my right side on my face and inside my mouth numb from the right sided AN. I just hate to think about one on the left. Has anyone out their-itf it is a facial neuroma-could radiation be used on this. The doctor in KC is a surgeon so I would bet he would opt for surgery. I pray that it is not regrowth but again my heart tells me that this is not so. Thanks-Ron.

Cheryl R:
    Hi Ron.   I just posted and after reading this post I would not say your present symptoms are facial neuroma for sure.               Mine showed up on the MRI and then the facial paralysis symptoms but I had no other symptoms.          I do well know that one can have all kind of weird things act up in spite of what doctors say.               Good luck in getting figured out what is going one with you.     
I also know well that some ENTs don't even have a clue about it all.     The very first one I ever saw in 2000 said I was just anxious when I asked if it could be a tumor.            A year and a day later I had a 8 hr surgery for my "anxiousness"!
                                 Cheryl R

ppearl214:
Ron,

I am so so sorry to hear you are enduring this... I know you have read here many times about obtaining as many dr opinions as you can get and understand that travel may be difficult  due to your current location.

As we all know... these things can regrow or redevelop.  Our hopes/wishes are that they don't and know that all AN patients will need to be monitored for the rest of our lives.

If you can get to KC, I think that is a wonderful idea.  Maybe to OKC to see Dr. Medbery?

I'm keeping my fingers crossed that it is not a redevelopment of an AN and will look for updates. Hang in there. I can imagine how frustrated you are, but you know... we're here for you and will look for further posts to see what is going on.

Hang tough Ron!
Phyl

Obita:
Dear Ron:

I have convinced myself at least a half dozen times in the last 2 years that I am having re-growth.  Every twitch, ache, wierd feeling etc...sends my anxiety through the roof.  I do hope that is what is going on with you.

I will be thinking of you and watching for and update. 

Good luck on the 30th.

Kathy

ppearl214:
Ron... update?  Thinking of you!

Phyl

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