Recently diagnosed with 1.5CM x 1CM in right ear

[RM]

Hi ...was recently diagnosed in early October.  After having a mini meltdown ok a major meltdown, I dove into research and met with doctors.  Finding the right doctor was really hard.  You have one maybe two meetings with a total stranger and then you need to decide to let them cut open your brain. The push and pull of radio surgery vs microsurgey, middle fossa vs retro, and then the folks who said that I dont have good enough hearing for preservation so I should just go the Tlab approach....just added to my dizzy feeling. I decided on RS and my surgery is scheduled for the 2nd week in December.  And everyday seems like an eternity. I am always wondering if I made the right choice.   And on most days I feel totally normal despite ringing in my ear, loss of hearing and balance issues and the thought of walking into a hospital for an intense surgey is making me feel like I am a crazy person. 

Most of the time I walk around talking about my condition to friends and family as though I were talking about a stranger.  And then it hits me that this is me, I HAVE A BRAIN TUMOR!!!   And then I fall down the meltdown zone.   Does anyone have any ideas on how to gain more certainty about selecting your doctors and the approach.  Also, I would love to know if anyone has had surgery in NY.  What MD"s performed the surgery?....I really want to be positive about what's ahead and chatting here seems to be a great way to get support and information.  Rita 

[kristin]

hi rita,
i'm pretty sure all of us who have had surgery know exactly what you're going through. the "oh my gosh...i have a BRAIN TUMOR and i'm having BRAIN SURGERY" is shocking for sure. somedays, even now..6 months post op i think "oh my gosh..i had a BRAIN TUMOR and i had BRAIN SURGERY!" i prayed harder, longer and more often in the days between setting a date for surgery and actually having surgery than i ever have in my life. that time was the worst for me...before i set the date it didn't seem real. i was just researching and learning about what an acoustic neuroma was. then once the surgery date was set...whoa! i'm having what?!

but the good news is...now you have a great conversation starter! you can tell everyone you're having brain surgery in december! believe me..they'll be interested!

you're not alone! we're here for you! vent! cry! whatever!

[Mark]

Hi Rita,

Well , if it helps from a semantics standpoint, you do NOT have a brain tumor. You have a skull based tumor of the 8th cranial nerve. While it may press on the brain if it gets large enough, it never invades the brain and is thus not a brain tumor. That may really confuse your friends, but what the heck 

I think any of us who have really researched both treatment options probably struggle with our decision right up to the time of treatment. I chose CK and was wrestling with whether I made the right decision up until the night before. I sometimes  think those that blindly follow the recommendation of the first surgeon the diagnosing ENT sends them to have the less stressful path. Their outcomes may not be great unfortunately but they don't worry about the decision. Having monitored this board for four years I've seen that scenario played out too many times.

Whichever option one takes they should go to a doc that has a LOT of experience with AN's , as in the hundreds. I could offer my opinions as to what options give the best odds for hearing or facial nerve preservation as many others could in this forum, but at the end of the day you have to feel confident that you are with a physcian that is the best skilled in either surgery or radiosurgery. The sense I get from your post is that you are not necessarily there yet and my advice would be to wait until your extremely sure on both counts. You were disgnosed in October and you are having surgery in December. A 1.5 cm AN is not going to change a whole lot in six months. Take your time and make sure you are comfortable. There is no need to rush from my perspective.

Mark

[cookiesecond]

Hi Rita,
I can relate. I didn't know what an acoustic neuroma was until I was diagnosed with one.The MRI report said possible cyst. I told the doctor cyst sounds so much better than tumor but he informed me it was indeed a tumor. I am 3 months post op and I still can't believe I had a brain tumor.I had the translab approach 8-2-05 and I am doing great.I had already lost most of my hearing.I can tell you waiting is the worst part.Take a deep breath,make preparations(I bought a handheld shower head, shower chair,and stocked up on soup...)and enlist the help of family and friends because a good support system makes all the difference.Hopefully you can find someone that has used the same team of doctors. I did and I really had confidence in my doctor. I had surgery in NC with Drs Cunnungham,Fukushima and McElveen they were awesome.
This forum is a great place for encouragement and inspiration. I know it really helped me.
I pray you will have peace and a great outcome. There are so many success stories!!
Take care and keep in touch,
Lynn

[sdinapoli]

Rita,
   I had a smaller tumor removed via trans-lab about 18 mos. ago and I'm doing pretty good these days. You have many options available just like I did and I know how scary this all can be. I also lost hearing prior to surgery including all speech recognition. It seemed to me that waiting and watching, radiation and surgery would have likely taken my hearing eventually or all at once. I had hearing loss, ear fullness and tinnitus prior to surgery and continue to have today. Actually the fullness is on very rare occasion and tinnitus is no worse but still there (some days better than others.) What bothered me a great deal and happened numerous times daily were those horrible stabbing pains that were actually staggering. They scared the heck out of me because I thought I was going to black out or something. I was scared not knowing what was going on in there which only fueled my "get this thing out of my head" feeling! It would just hit me out of nowhere!  Knowing that my hearing was on the brink and tinnitus would never go away I decided to have the surgery and hopefully relieve some symptoms and maintain my facial nerve since the tumor was relatively small. My family doctor who is very well respected within the community had the same surgery at the same hospital 10 years ago so I didn't feel so isolated anymore.  Folowing surgery I had full facial function, no more stabbing pains and I was told that the tumor was completely removed. I did pick up some incision pain and terrible neck discomfort which have both completely resolved many months ago. I never dealt with major headaches before and after surgery. I held up the before and after MRI a few weeks ago and did feel relieved it's over. Did I make the perfect decision?? I Have No Idea!!! Could I of had a better outcome with another form of treatment?? I Just Don't Know!! Do I get satisfaction knoing that it's gone?? Yes! Although, I do wish that the tumor would have been discovered years ago when I complained of milder symptoms during a visit with an ear specialist but these are the things we cannot change. Small tumors can cause big problems too. Some people get extreme vertigo with small tumors. I had the hearing loss so it all depends on the individual. This whole thing will be on your mind for a long time regardless of treatment choice. You will grow stronger everday and learn to cope. I used to wonder where all the other people form the older site are then I realize now why so many people move on from these boards and dont look back. Many patients move on and choose not to think about this endless ball of cunfusion so much because it's the healthier thing to do. This is where I am at these days. I check in once in a while then clear it from my mind because I feel good today and that's what counts. There was a post on this site maybe a week ago from a woman that had surgery 36 years ago..WOW!! I remember speaking to two others prior to surgery who had surgery many years ago and I remember thinking I wanna make it where they are many years after the fact. It did motivate my decision. Life is better and healthier when you stop looking back and wondering all the time and one day I hope you find that peace so in the meantime do your research and come to your own conclusion. This site is a great tool especially for the newly diagnosed. There are many wonderful people here. Believe me it wasnt this good only only two years ago. Take Care!      Steve D 

[RM]

Hi everyone

Thanks for your responses.  I have been nursing a horrible head cold and then Turkey day.  So forgive the slow turnaround. 
The surgery date is getting closer by the day.  I am scheduled for pre surgical testing this week which will no doubt send me into a tail spin but I am looking forward to putting this all behind me.  This site has been great.  It is amazing how many folks are willing to share stories and show support for others. 

[Boppie]

Hi, I was diagnosed in early October.  I will have a translab in Houston, December 15.  I have researched, worried, talked, calmed everybody else down and made my peace with my choice and decisions.  I go for pre-op tests Tuesday, and then it is wait until S day.  We can support each other.  We will be fine.

One of the best things has happened!  I got a phone call from a person in my own small city who had translab for an An just 5 weeks ago.  This person filled me in on lots of little silly and "important" details that I needed to know.  If I can help you out, you might want to ask questions, here.  I am sure others on this forum will answer any questions you have not gotten yet.  It just helps to talk to real people who are going through the same thing. 

It helps to think of the surgery as removal of a benign tumor from the auditory canal.  The brain will be just fine.

Lois White, 2 cm AN, rt. side, 63 yrs.

[RM]

Hi Lois -  I am also scheduled for pre surgical testing this Tuesday.  My surgery is Dec 13th.  Its great that you heard from someone in your own city.  I would love to know the important details they shared, no matter how silly.  What the prep is like, what to expect after surgery when I wake up, what I should bring to the hospital, what to have ready for when I return home.  Basically, anything you would be willing to share.

Thanks
Rita

[Boppie]

It me, Lois, did you get the note with the nitty gritty details about the prep, etc.?  My memory gets lost, so much thinking going on around here.  I will be thinking of you Rita.  Best of luck and I hope you are up and going in time for the holidays.   

[Labott]

Hi Rita:
  I was diagnosed with a 1.0 x 0.5 cm tumor on my right side in August.  I am writing to encourage you to consider the GK option.  I consulted two ENTs and a radiologist to get their opinions on treatment options.  All three encouraged me not to wait because of the position and orientation of my neuroma.  My tumor is located in a position that makes the translab approach the only surgical option. On Feb 2nd, I underwent stereotactic radiosurgery (16 Gy) at Emory University Hospital. I went in at 6:15 AM and was out by 1:00 PM that afternoon.  That evening I walked around the block.  Within 48 hrs my face looked like I went five rounds with a prizefighter, but the swelling went down within four days.  Hearing in my right ear was reduced for two weeks.  Signal transmission was significantly slowed on that side so I would hear echos.  This passed within three weeks.  My hearing now is identical to what it was prior to the radiosurgery. 
  I missed a total of 1.5 days of work.  The follow-up MRI (on 3/15) showed no change in tumor dimensions and, more importantly, no collateral damage to surrounding tissue.  I have occasional vertigo that I've learned to control by simply standing up and walking.  Within five to ten steps, my world is back to normal.
  If you haven't already made a decision, I encourage you to consider the stereotactic radiosurgical option for your tumor.