Hello, I'm new here

[Marianne]

Hi, I'm glad to have come upon this forum.

 My surgery for AN was 21 years ago. I was 40 years old. My tumor was 7 cm. I was in surgery for 15 and 1/2 hours. Within weeks, I had to have a second operation to correct a spinal fluid leak from my left nostril. I have a completely dry left eye, totally deaf left ear, some facial paralysis but I am able to close my left eye and the left corner of my mouth is nearly normal. I had an MRI twice yearly for one year then yearly for four more years and then no more, since there had been no regrowth. So I was declared totally cured and I put my AN experience behind me.

 Now, 21 years later, I feel like I did before my AN surgery: headachy, exhausted, slightly dizzy. The left side of my face is feeling numb again and my mouth is pulling more to the left, it looks more asymmetrical than before. I don't know whether I should ask my doctor for another MRI. I feel like I'm afraid to find out if it's back, as I feel like I could not stand to go through such a surgery again. I welcome your input.

[CHD63]

Hi Marianne .....

Welcome to this forum of caring and supportive friends.  I can only imagine the agony you are going through right now.  As one who experienced that rare regrowth situation, I can greatly empathize with your fears.

If I were you, I would definitely ask my doctor to order another MRI ..... mainly to put your mind at ease, if it is not AN related, but also to make sure something else is not causing these new symptoms.

From everything I have read and heard, the overwhelming majority of regrowths occur within 5 years of surgical removal ..... extremely rarely beyond 10 years.  Several presenting doctors at the last ANA symposium said that past 10 years, we are no more likely to experience regrowth than the general population is in growing an initial AN.

However, you need to find out why you are having facial issues again particularly.

Many thoughts and prayers ..... and call your doctor tomorrow.

Let us know what you find out.

Clarice

[KBL]

Hi Marianne,
I am sorry to hear you are having symptoms.  If it was me I would be scheduling another MRI.  I would need to know what is happening in there.  I am guessing if it is back you will have more options than you did 21 years ago.
I am finding the people in this group have much more strength than we ever thought we had.

Please keep us informed.
Karen

[Jim Scott]

Hi, Marianne ~

I'm sorry you're having this unpleasant experience and being stressed out by it (as anyone would be).  Although your fear of learning that you have another AN is quite understandable, you really do need to find out what is causing your symptoms.  As Clarice noted, re-growth after more than two decades is highly unlikely.  However, should re-growth have occurred, you would very likely be a viable candidate for some sort of radiation treatment, which would alleviate the need for the surgery you dread.  I urge you not to allow your fears to dominate your medical decisions.

Jim