Just Diagnosed...

[SusanT]

I was just diagnosed with AN in February.  My ENT specialist/neurosurgeon has recommended the translab approach due to my "unserviceable" hearing on the AN side.  My AN is about 2cm.  I have daily headaches varying in severity from noticeable to unbearable.  I have scheduled the surgery for May (I work in the school district here and would have the summer off for recovery).  I am really quite unsure about which surgical approach is best for me.  Translab sounds like the one that would have the fewest complications but should I try to salvage what hearing I have left by going retrosigmoid?  Has anyone out there had surgery at the Medical College of Georgia?  Any advice would be appreciated.

[rebarman]

Welcome to our group. Sorry you are here, but you'll find the people here are great, and have a tremendous amont of information and support.

3 weks ago I had the translab. procedure done at Emory University in Atlanta under the care of Dr. Doug Mattox and Dr. Jeffery Olson. I know I am one of the "lucky" ones, but I have had no complications since I got out of surgery. I am back to work (I do work at home and that is easier) I have started driving some (no hwy yet) and have had no headaches since I got home. I had 70% hearing loss when I was diagnosed, so I didn't really lose much with the translab. approach.

Did you team of DR's offer any other methods of treatment? When I 1st met with Dr. Mattox, he spent a geat deal of time offering up 3 different approaches. Wait and see, Radiosurgery, and Microsurgery. I'd be interested in hearing if yours only offered up the surgery route. If you need (or want) a second opinion on your situation, I would say you can't go wrong by making the trip up to Atlanta.

Whatever you choose, we're here to support and help you . If you'd like, email me (see my profile for address) and we can talk more.

[Sam Rush]

IF YOUR HEARING IS NOT WORTH SAVING(TESTS WL TELL)   tHAN YOU ARE BETTER OFF W/ THE SIMPLER TRANSLAB, WHICH IS SHORTER AND LESS RISKY TO FACIAL NERVE DAMAGE.. i WAS BACK AT WORK IN MY MEDICAL OFFICE 2 WEEKS AFTER TRASNSLAB FOR A SMALL TUMOR.REMEMBER CHOOSE ONLY DRS AND TEAMS WITH LOTS OF EXPERIENCE, AS COMPLICATIONS IN INEXPERIENCED HANDS  COULD BE A NIGHTMARE INSTEAD OF THE EXCELENT RESULTS FROM EXPERIRNCED TEAMS.

GOOD LUCK!!!

[richard]

Susan
 I had a 1.0 cm X .7 cm X .3 cm AN

First Opinion:  My hearing was not worth saving per audiogram and translab was recomended.

Second Opinion:  My hearing was still pretty good per audiogram and Retro sigmoid was suggested.

In my opinion audiograms are if'y on the  science.

My personal feeling was that I was happy with the hearing I still had (about 70% good)

I had retro sigmoid with a very experience team on Jan 17, 07

Follow up audiogram showed no further loss of hearing.

I go back to work on Feb 20, 07 to an industrial environment at a power plant.

I wish you the best and will pray for you.

Richard

[SusanT]

Thanks for the info...Richard-I agree about the audigrams. For example, I can use a sound amp device during a church worship service and I can hear in my "unserviceable" AN ear. I'm glad to know that things are going well for you. Keep those prayers coming my way.

[Obita]

Hi Susan and welcome to the forum:

I had translab three years ago this May.  I chose translab for the same reasons.  I was told no usable hearing etc...  Can you still tell where sound is comming from?  I knew I would be deaf in my left ear.  What I did not know is that I would not be able to locate sounds.  That is what bothers me most about single sided deafness, especially at work.

Had I known that, I might have decided on a different approach to try and save what hearing I had.  Might have......?

Good luck to you,  Kathy

[Battyp]

Susan if you can hear with assisted listening devices then why go translab?  SSD is a lot harder to deal with that one might imagine.  Especially in the classroom.  I used to teach but since my treatment am having to pick a new career.  Unf. I had damage in my trigeminal nerve which has left me a speech problem so the doctors won't let me return to teaching.

You mentioned headaches and know quite a few of us were told AN's don't cause headaches..  BUNK!  Once I chose my surgeon I was put on decadron and was headache free before surgery.  I had had a constant migraine for almost a year.  You might want to ask about that to get some relief.

I opted for retro due to the size and placement of my tumor( it was my only choice)  I wanted to ability to try to preserve my hearing nerve in case new technology happened down the road which would enable me to hear again. 

All my best to you!
Michelle

[jenn]

I know this is probably a scary time for you but be comforted that the AN is still relatively small.  My AN was the same size and I had a translab in Dec. 06.  I was able to return to normal activities in six weeks even after two complications.  I think the TL is the "safer" choice.  No brain retraction.  My scar behind my ear is almost completely healed after 2 months.  You are doing the right thing by coming to this site to get the real deal on what is going on with your health.  You will find out with your research that no one can tell you exactly what is going to happen because each one of our cases and bodies are different.  You may just come out with flying colors and be good as new, minus hearing, or you may have all of the complications that you read about.  Just meet this head on and look into your mind's eye and see yourself recovering and getting better and it will happen!

[Sue]

Hi Susan,

Another Susan chiming in.  I had Gamma Knife on my 2 cm AN last April 18th.  I don't have much hearing in my left ear....I cannot hear anything on the phone, for example, and I have zero word recognition...I was never given a percentage of hearing loss, but as of last summer I was in the "severe" hearing loss catagory, rather than the "profound" hearing loss that my audiologist said many AN'ers were in.  It wouldn't surprise me, however if I tested in that catagory now.  My doctor is a neurosurgeon, and also does radiosurgery, so he advised me to go that route.  Sad to say that some neurosurgeons will pooh-pooh radiosurgery, because frankly they lose income by refering you to somebody else.  It's a nice idea, if you can, to talk to experts in both fields. 

I wish you all the best from one Susan to another...

Sue in Vancouver USA

[Jim Scott]

Susan:

Hi, and welcome to the discussion forum.   

I had the retrosigmoid approach AN surgery last year (as my signature shows) and it went very well.  However, my hearing was already lost in the AN-affected ear due to long-term nerve damage.  My neurosurgeon decided to use the retrosigmoid approach simply to gain better access to the tumor.  I had no headaches before or after the surgery.  However, I was under the care of a very experienced surgeon and his operating room team were all AN 'pros'.  Although my surgery was performed in a teaching hospital, no hospital residents or interns came anywhere near me during surgery, as my surgeon said this operation was no place for 'amateurs'.  I agreed. I assume they did have an opportunity to observe at least a part the almost 9-hour procedure.

With a 2 cm tumor, you're a possible candidate for radiation treatment as an alternative to microsurgery.  Unless you are personally opposed to radiation treatment, I would suggest you do some research on that procedure.  This site has such information, if you need it.

I wish you well and hope your headaches can be controlled or eliminated, soon.

Jim

[nancyann]

Hi Susan:

I had a 2cm AN removed retrosigmoid;
ended up with right sided facial paralysis.
My facial nerve was dead as soon as they hooked up the nerve monitor,
never came back.
It was a fluke, I am going for routine facial EMG's.

This doesn't happen to everyone (thank God),
but there is another option at the size your tumor is (radiation).
Look into your options, thoughts about surgical removal vs. radiation.

Wishing you all the best on your journey,    Nancy

[Boppie]

Susan, unserviceable hearing might still be better than deaf.  Deaf in one ear means one can no longer know where sound is coming from.  A small amount of hearing in one ear adds summation to the total volume and some pitches.  If a treatment other than Translab seems safe, ask your doctor why you wouldn't want to salvage some hearing in that AN side.

Before Translab I had 35% hearing in my AN side.  I miss that "poor" 35% now.  I use a TransEar now for my deaf side but I still don't know location like a stereo hearing person.

As I posted one time earlier.  Some hearing is better than no hearing.

[brasher]

I was just diagnosed with AN in February.  My ENT specialist/neurosurgeon has recommended the translab approach due to my "unserviceable" hearing on the AN side.  My AN is about 2cm.  I have daily headaches varying in severity from noticeable to unbearable.  I have scheduled the surgery for May (I work in the school district here and would have the summer off for recovery).  I am really quite unsure about which surgical approach is best for me.  Translab sounds like the one that would have the fewest complications but should I try to salvage what hearing I have left by going retrosigmoid?  Has anyone out there had surgery at the Medical College of Georgia?  Any advice would be appreciated.

hi susan,

my name is tony, i had a large tumor removed 1/23/07 by the translab procedure. i did have complications during the procedure, however, those complications were most likely a result of the size and nature of the mass i had in there. my point is.....i felt like the translab approach was the best option i had, since my hearing loss was severe, as well as the fact that it seems to give the surgeons "more room to work?", hearing is important, but being tumor free is better.  good luck and god bless.

tony

[Battyp]

YIKES Tony a 6.5CM tumor!  Ok, I'm so impressed with your recovery!  I only had a measly 2.5Cm and it took me 3 months to find my comptuer and my first few emails were garbly gook that no one could read but me in my mind )  Glad to see your posting so soon after such a big tumor.  Keep it up!

[brasher]

battyprincess,
thanks, i guess i am lucky. like jim scott said though, these things are tricky, i feel as though a lot of people who had smaller tumors are dealing with more than i am. recovery depends a lot upon the patient. i am only35, and i was in really good health going in to the surgery, so that has probably helped me.  not to mention i am very stubborn, i refuse to let this "situation" get the best of me.