regrowth???? so lost right now

[Patti UT]

HI Jo,
  Chiming in late here, so sorry you are having to deal with the shock of this all over again.  I was told in July I had regrowth after 5 years.  My AN was supposedly removed totally via Mid fossa, yet it decided to rear it's ugly head again anyway. I have been on an emotional rollercoaster ever since. I have had surgery scheduled 3x and changed it.  Just can't bring myself to going through with it yet.  I researched the CK,GK, and Novalis Would love to go that route and avoid surgery, but I have major balance issues and the surgeons feel  the removal of the hearing nerve and a little piece of the balance nerve left on the hearing nerve will likely improve my balance.   It's still small (5mm) so guess that's why I feel I can keep procrastinating.
  My heart goes out to you, as I feel your struggle.........  I have a trip planed for April, trying to decide if I should wait that long or not. if I do it before, I may not get to go if recovery takes as long as it did the first time.

Hang in there
Patti UT

[tenai98]

Anissa
MRI report states residual of 16mm or 1.6cm
JO

[suboo73]

Jo,

Have read this thread and am SO SORRY this is happening to you!
But, as others have said, your spirit and determination will see you through, along with ALL the prayers coming from the Forum.
Since i am not personally familiar AN surgery (other than what i read on the Forum), do the surgeons measure the piece they 'leave in' to preserve facial nerve, hearing, etc?  I am thinking they can only 'guess' at the amount left there, based on the way it is attached to the nerve.

I am thinking of you, and KNOW you will get through this. 
How is grandbaby doing?  We have had other recent health issues/situations in my family that supersedes the AN too. 

My prayers go out to you - Nov. 30th needs to come now!
Sincerely,
Sue

[leapyrtwins]

Jo -

best of luck on the 30th.

I'll be thinking about you and praying for good results.

Jan

[ghenier27]

Oddly enough, I met a woman from Georgia on November 17th st Shands Hosptial who after surgery - her tumor came back. She optioned to have surgery the second time. And she did wonderful. I had to get the whole story and it goes something like. She had the orginal AN removed 6 years ago. She did wonderful and really had no problems what so ever. After her first year anviersity of her MRI. They told her to come back in 2 years for another MRI and she did. It was clear too. The doctor then told to come back in 3 years and that is when they discover again AN on the same left side but not in the same location. And it was larger than the first AN was. I have to say, I was a little freaked. But after chatting with her for about an hour, I couldn't believe how well the women in her late 60's was! And I was thinking how she had gone threw what I did - twice. Lucky, by the time I saw Dr. Lewis, I asked him if I could get yearly MRI's, he told me that is what they do these days and after 6 years of cleared MRI's I would be considered cured.

[tchrlady]

I read your post and truly feel for you.  Right now I am torn about calling my neurosurgeon to have a checkup, as I suspect my acoustic neuroma may be growing back.  My surgery was in 1991. Except for deafness in my left ear, and very loud tinnitus, the surgery was very successful . . . until now.  For the past 6 months I have noticed balance problems, increased tinnitus, headaches, slight slurring of words, and very mild numbness on the left side of my tongue.  Reading your post, however, was enlightening since I had no idea that there were so many more options available now for the removal of neuromas.  It is inevitable that I must go and get this checked, as I cannot continue to "play ostrich."  I wish you luck in your quest to find the right treatment, and sincerely hope everything goes well for you.

[loose screws (tightened)]

I can't even imagine.
I'm wishing you the best of luck and every other good vibe I can find is pointed to you.

Mike

[NancyMc]

Jo,
Fingers crossed here.  Hoping it's a massive typo!!!!!
Nancy

[wcrimi]

Best of luck tomorrow. Wayne

[Adrienne]

Good luck tomorrow Jo!  Thinking of you, and hoping you get all the answers you need for clarity.

Adrienne

[cindyj]

We'll all be very anxious to know what your doc says tomorrow, Jo...hope like Nancy said, that it's some sort of bizarre mistake...

Cindy

[tenai98]

well today is the big day....didnt sleep well last night. so in roughly four hours I will have my answers...Here's hoping for the best!!!
JO

[NancyMc]

Fingers and toes crossed.
You were my pioneer, heading into the unknown the day before I did, so hate to see you hit a rough spot.

[nteeman]

And here are some more best wishes, crossed fingers and toes.

Neal

[Keri]

Hi Jo,
I hope you get good news too. Thanks for letting us know.
Keri