TO ANYONE NEWLY DIAGNOSED - PLEASE READ!

[MikeSmith]

My name is G. Michael Smith and I live near Gatlinburg Tennessee.  If you are reading this note it's because you have either been recently diagnosed with an Acoustic Neuroma  OR  you have been dealing with one (or the effects of one) for a while now.   I know your scared and that you have a lot of questions....  if you will induldge me, I will attempt to ease your mind a bit...  if interested, please read on.....


Like I said, my name is Mike and I live in Tennessee.  About a year ago I decided to quit playing dumb and stop ignoreing the numbness in my face and ringing in my right ear.  You see I had been telling myself "Oh.. it's just a little dental work gone bad!  ITS NO BIG DEAL".  Well... I had an MRI done and after an hour of laying in this tube listening to a "JACK HAMMER" pound around my head I was told... " Ok... we're done!  Here is a disc for your records".  I asked them what it was and what could I do with it?   They said " Its the same thing that the Radiologist is going to look at but he's out of town for the next two weeks".  So I took it home and put it into my computer. 

Up popped a black and white image of my head (shot from the top looking down) and as I scrolled through the images (its like little slices working their way down to your neck) I saw the top of my head, then the top of my brain, then I could see my sinus, then my eyes... and then...................... BOOM!  There was this white walnut on the right side of my brain, even with my ears and pressing on my brain stem.  There was not one on the left!!  What is this thing?

I sat there and looked at this walnut looking thing for about 2 hours.  During that time my entire life re-played over and over.  I just knew that I had a {{{{BRAIN TUMOR}}} and that my life was about to end.  I finally decided to call by brother who is a Speech Pathologist at MD Anderson in Houston Texas (how fortunate is that?) and I told him " Hey man I'm emailing you a picture right now.... did you get it?"  He answered " Yep.. just got it.... OH MAN!  Who is this"?   I said " Its me man".  The phone got real quiet for a few minutes and then he said.... " I'll call you back"!

When we got off the phone I got on the internet!  I didn't know what to look for?  I just entered.... WHITE BRAIN TUMORS?    WHITE SPOTS ON BRAIN!!   As luck would have it I happened across this site.  On it I found stories and pictures that matched my own!  This site is where I found out that an Acoustic Neuroma existed!  This site is where I found out how rare they are.  This site is where I found out that although they are typically non-cancerous... they are still nasty little things.

So when he called me back he told me " Ive been in conference with my buddies (the Neurosurgeons at MD Anderson) and we all agree that you have an......"  and I said "Acoustic Neuroma"?  He said "Yes..... and you have a nasty little one".

So to make a very very long story short... I started the whole Doctor process.  I went to this doctor and that and was told one horrifying thing after another.  I was told that due to my tumors size and position that I would loose all function on the right side of my face.  I was told that my tongue would quit working and that I would not be able to eat.  I was told that I would no longer be able to walk without a walker.  I was told that I would not be able to speak.  I was told that they could take the nerve from my tongue and connect it to my face so when I THINK I'm moving my tongue my face would move a little!!! 
 
My ears were filled with  YOUR NEVER GONNA BE THE SAME AGAIN!!! Over and over and over!! It was more than I could handle.

Well..........  I am not sure what your spiritual lives are like.  Me?  I am a Christian.  I'm not a Bible pounder or an every Sunday morning kinda guy.  Ive spent countless hours outside in the rain shaking my fist at God about one thing or another!  Don't think for a minute that this was any exception!  Man Im telling you that I REALLY LET GOD HAVE IT!!    "HOW COULD YOU DO THIS TO ME"?  "WHY ME"?  "WHAT DID I DO"??  ")###(@@!*@&_@)$#* YOU GOD"!!   you know that after all the times that I have done that.... after all the times that I shook my fist at God for letting this happen to me.  After all the times I cursed at God in a rage of self pity He looked at me and said... " Are you finished"?  "Do you feel better now"??   "Good !  Let's get to work".  Just like everytime in the past, God waited for me to get through with my temper fit and then wrapped His arms around me and said " I love you... let's walk through this together".

So what am I supposed to do now?  I had a really good MAD worked up and as God usually does... He took it from me and replaced it with peace!  So......  I began to research.  I spent days and days on the internet (much of it on this site) researching diagnoses, procedures, doctors, hospitals.. you name it.  Finally the pressing question on my mind was simple...

"If and Acoustic Neuroma is so rare? How many does your average Doctor do in any given year"?  They answer I found out was "NOT MANY"!  Everyone I called tried to tell me about the Hospital's statistics and "Not to worry about it"... but  I WANTED TO KNOW HOW MANY HAS THE DUDE THAT WAS GOING TO BE INSIDE MY HEAD DONE!!!???     I got back   " 3 a year"  " 7 a year"   the most I heard was at MD Anderson "15 a year".    Now do not get me wrong!! PLEASE!!   I am not saying that these doctors are not fine surgeons.  I am not saying that at all.  However, as with anything else do you really want a mechanic working on your car when he may have only worked on 3 prior to yours?  OR would you rather have a mechanic who works on not only cars but your make, your model, your color and with your exact problem EVERYDAY ALL DAY LONG?  Sure you would.

My concerns were not that these doctors did not know what they were doing... no!  It was that I have always been the one that " If its gonna happen it's gonna happen to me!"  so what would be the chances of these doctors getting in there and saying "Hummm  never seen that before"!  So thats why I decided to to the research and found the House Ear Institute in Los Angeles.  The late Dr. John House is the one who pioneered many of the procedures that most other doctors use today.  HEI does about 500 to 700 AN procedures per year!  Not 5 or 10!  So guess where I went?  HEI BABY!!!

Well I am going to shorten the story even more as I am running out of time... but suffice it to say the prognosis was still quite grim once I arrived at HEI.  My Doctor was Dr. Derald Brackman.  Yall... he is the best in the world.   GOOGLE HIM!   Well... I went to surgery and it lasted longer than they expected because my tumor was quite comfortable where it was and was not excited about being removed!  As a result they were afraid that the grim prognosis was going to come to pass.  They also did the BAHA implant procedure at the same time.   When I woke up I saw a bunch of faces looking at me.  They were wanting to see if I could move my face......  I gave them a big TWO SIDED smile !!  and they all high fived and were very happy.   I CURRENTLY HAVE NONE OF THE THINGS THAT I WAS TOLD I WOULD HAVE.  The only thing different is that I have SSD (single sided deafness)on my right side because they did a Trans Lab approach.  A Trans Lab approach is where the hearing is determined to be so poor that it is not worth saving.  The benefit to this procedure is that they have the best view of the tumor and the best chance to get it all.  It also decreases the possibility of chronic headaches post op.

So.... here I am a year later and to those who do not know me they cannot tell that I have ever had anything done.  To those who do, they tell me that they forget about the procedure because I show no signs of it.   

I am not telling you all this to make lite of any of your concerns.  I know what you are going through and it's scary as hell!  I can offer you this advice.

FIRST.....  Give the thing to God.  When you do it becomes His problem to deal with not yours.  You will be surprised at the peace you gain from this.  It will not take away your fear entirely....  but when something is no longer your problem... it eases the pain a little.

SECOND....  ASK QUESTIONS!!!   How many have YOU YOURSELF performed?  What was the outcome?  How many has the hospital seen?  What about a BAHA (Bone Anchord Hearing Aid) Am I a candidate?   What procedure do you want to use and why? Retrosigmoid, Middle Fossia and Trans Labarynthian  <---- have to check the spelling !!   What about GAMMA KNIFE?    ASK QUESTIONS!!

DONT LET ANYONE SKIRT YOUR QUESTIONS!!!  YOU HAVE A RIGHT TO KNOW!!   If you are currently "on the fence" PLEASE PLEASE!!!  CALL the House Ear Institute in LA.  Ask for Dr. Brackman or email him  at dbrackmann@hei.org

I obtained permission to video tape my entire process.  From my getting on the plane to the consultations, hearing tests, pre-op, operating room, procedure itself and recovery!!   Why?   to share it with anyone that is coming after me who is scared to death.

If your interested or if I can be of any service to you...


(edited as personal info, such as phone numbers, should not be posted for security purposes.  Please PM the original poster here on this site for further info. Phyl)

[ppearl214]

Hello Mike and welcome. I see you are posting this info around the site to share your experiences with all those that read and participate here.  I'm glad that all worked out for you at HEI... and many here are also first-hand experiencing wonderful microsurgical outcomes at other facilities in the States, Canada and the UK (and yes, Laz... even in the land of Oz!) as well as terrific radiation/radiosurgery all around.  We know that each person makes their final decision for their own personal reasons and situations...as well as "individual results may vary"..... and we are more than happy to support everyone in their final decisions... Thank you for sharing your experiences.... and again, welcome

Phyl

(P.S. Please note that personal info should not be posted in your public posts. If you care to share private info about yourself in PM/emails, that is perfectly fine, but we like to keep personal info out of the posts, ok?  Thanks for understanding)

[marg]

Nice job Mike.  Thanks for sharing.  So glad that you had such a good outcome.
Marg

[Jim Scott]

Hi, Mike:

Thanks for your positive contribution to this site/forum.  We need more positive accounts when they are available and so, yours is welcomed.   

I also gave my AN to God and trusted Him to deal with it.  The result: a very successful surgery, later equally-successful FSR treatment and now, some 20 months post-op, normalcy.  No facial paralysis, eye-closing or swallowing problems.  My balance is good and my walk is quite normal.  I pretty much came out of surgery like that and just kept improving.  I was driving - with my surgeon's permission - two weeks after I was discharged from the hospital.  Many prayers were said for me and I had 4 church Elders join me in prayer in the minutes before I was wheeled out for my surgery.  Although it probably makes a few folks uncomfortable, I gladly give the praise to God, as did my surgeon, who, just a few weeks after my surgery, said I was in the top five percent of any recovering AN patients he ever had, and this fine doctor has been removing AN tumors since the 1970's.

You pose some excellent points for newly diagnosed AN patients to consider, especially the experience of any surgeon, relating to acoustic neuroma surgery.  My doctor had performed thousands of such operations (he had 30+ years experience) and was very highly recommended by every medical professional I talked to about my choice of surgeons.  I considered myself fortunate to have him.  He was very modest and wasn't even concerned about his fee, as he accepted pretty much whatever the insurance (Blue Cross, in my case) paid.    However, had I not been referred to this doctor, I was prepared to fly across the country to have my surgery performed at the House clinic in Los Angeles.  I believe that the House clinic is always a safe and sensible recommendation for the AN patient considering surgery.

Thanks again for your useful information and advice as well as your offer of further communication, if desired.  That kind of attitude of sharing your experience and helping others is what drives this site and these forums. 

Jim    

[Kate B]

Mike,

I concur. Dr. Brackman is outstanding.  When I was doing my own research originally, I thought I would find a research hospital in Chicago and at first I ignored HEI.  Then I kept reading about all the people who were satisfied with their results at HEI...(I am not denying that it is surgery..it is). I made the personal choice to go to HEI in November 2001. Dr. Brackman and Dr. Hitselberger were my team.

Another tidbit: It is not often that we get to know our doctors, but in my pre-consultation with Dr. Hitse in LA prior to my surgery, I found out that he is a fan and his hobby is to read and learn about presidents. His favorite: Honest Abe.

Kindest Regards,
Kate