New user and just diagnosed with an AN

[jlamborn]

Hi there; my name is Jean and I am near the Dallas, Texas area.  My problem started in March with tinnitus and slowly losing my hearing on the right side.  My ENT finally did an MRI after balance problems started to surface and found an AN on my right side (sorry, I don't know the size yet, other than he still classified it still generally small).  I found your forum while searching in desperation for any information on this and it's been really helpful with a lot of my questions.  We have chosen trans-lab since my hearing on that side is pretty shot and want to do everything possible to get all of it out and still preserve the facial nerve.  I'm still waiting to hear on a surgery date at this point.  It will be done at Southwest Medical Center in Dallas by Dr. Isaacson and Dr Madden.  I haven't read through all the posts yet, but does anyone have any experience with anyone here in Dallas?

Jean Lamborn
Grapevine, Texas

[nancyann]

Jean,

Didn't have surgery in Texas, so can't help you there;  just wanted to wish you all the best.   

Nancy

[Derek]

Hi Jean...

So sorry to learn about your unfortunate diagnosis but welcome to our great group who will willingly help you with any info and advice that you require based upon first hand practical experiences.

I just wondered what research you have carried out which has led you to an early decision to undergo microsurgery? If your AN is still of a small to moderate size you do of course under normal circumstances have other options available to you such as 'wait and watch' (see details in my signature) and radiosurgery / radiotherapy.

 There are of course attendant risks attached to all of the options and you should be aware that there is no guarantee that regrowth of the AN will not occur after either microsurgical excision or radiosurgery.

Whatever option you ultimately choose it will be the right one for you notwithstanding that you have reached your decision based upon thorough research and advice and we as a group would fully respect that decision.

Best of luck on your AN journey.

Regards

Derek

[vjharris]

Hi Jean,
I don't have any answers to your questions, but I know how I felt when I first found out about the whole scary AN scenario. The choices seem so big and the hard information you have seems so small.
It does get more manageable.
My best to you whatever treatment you choose.
vjh

[Sam Rush]

If you have a small AN, you will be fine. as I am 2 yrs. post-op  No experience in Texas. The world experts on this are at House Clinic in L.A. and will discuss your case on the phone. Good Luck. Remember, AN is a benign tumor.

[Obita]

Hello Jean and welcome:

I am a translaber (May of 04) and I am fine.  My AN was just touching the brainstem when I was diagnosed and my hearing was pretty much gone, so translab it was.   My face twitched and was a little numb for a few weeks but that was it.

Good luck to you and write to me if you have questions about surgery or recovery.

Kathy

[jlamborn]

Just answering Derek's question of why I'm already scheduling surgery if it's still small; if it was just the hearing, I could deal with it.  What has gotten much worse is the balance and dizziness where it is getting increasingly difficult to work and drive. 

[Gennysmom]

I'm not in Texas, but I had translab and I wish you all the best.  Keep researching and feel free to ask us questions!

Tigermaiden is in Texas, you might look her up and send her a message.  I don't remember who else is from that area.

Kathleen

[Sue]

Hi Jean,

Welcome to our world and I hope that everything goes smoothly for you.  I am one of the "lucky" ones in that I never did have severe balance issues.  Of course, if I did tell my ENT that I was experiencing dizziness, maybe I would have gotten my diagnosis sooner. Be sure to ask a lot of questions to your doctors.  It seems to be important to surgical patients around here that you make sure your team is experienced in doing AN surgery, which makes for the best outcome for you.  I just hope your doctor is not telling you that surgery will cure your balance issues immediately, because (in my opinion) I think it will still take some time for your body to adjust to having your balance nerve compromised. I hope the experienced surgical patients will offer their opinion on that, because I did go through that, but that's what I've learned after hanging around here since last March. So sorry you  had to get this crazy thing, but please know that this is a great group of people who are very willing to share their experience and knowledge with you.  It's also a good place to vent!!

Take care,

Sue in Vancouver

[Derek]

Hi again Jean...

One of the peculiar aspects applicable to the AN condition is that no two  persons tend to experience exactly the same symptoms irrespective of the size at diagnosis. In my situation I too experienced balance / vertigo problems both pre and post diagnosis but when I completely lost the ability to hear on my affected side, the balance nerve on the opposite side compensated and my balance completely rectified itself over the ensuing months hence I am now almost 5 years into the 'wait and watch' mode and enjoying an excellent quality lifestyle which I intend to maintain until such time that I have to consider another treatment option.

The ultimate choice of treatment option is of course a personal one based upon a number of factors such as age, state of health and whether invasive microsurgery is acceptable to you having regard to the fact that it is the option that carries the most risk of post treatment adverse side effects, etc.

Remember that the condition is benign and usually has a very slow rate of growth therefore you have the time to carry out maximum research in order that you can eventually settle on a treatment option that you are entirely comfortable with and one that you will not 'second guess'.

Best Regards

Derek

[Boppie]

Jean, You are in the hands of an experienced Neuro team in Dallas.  As I wrote, I met Dr. Isaacson as part of my team at Houston Methodist.  He helped vastly in putting me in a positive and well informed mode.  You should should be home lounging in front of the packages and tree for the best Christmas ever!  Good luck on the 19th!  I will check online here for any posts you might need to make (or have your family make them)  over the holidays following your surgery.

[jlamborn]

Thank you so much for your feedback on the Dallas doctors; it really helps me not be quite so scared. 

[Louzilla]

Jean, sorry to hear you got the news we all did.  Don't know about Dr.s in Texas but make sure you go to someone that has done a bunch of these, and find out their success rate.  If you need to travel...do it.   The decision to have surgery is a big one especially with a small tumor. Mine was very small only 4mm x 8mm and I decided surgery to save my hearing.  I had vertigo 5 years ago for about 6 months, and then the ringing started last year. I just got back from Stanford to my home in Reno and so far so good.  Good luck with your surgery and do what I did and use this site to get the info you need.  All the best and positive vibes being sent to you right now in Dallas.
Lou   

[jlamborn]

Hi folks!  I'm home from my surgery and doing very well.  I want to thank this site for all the information I accumulated in making my decision to have the tumor removed.  The surgery was Monday, Dec 18 and took approximately 7 hours with complete removal of the tumor.  Initial testing of facial nerve in recovery was excellent, with a little weakness right now from the swelling.  Loss complete hearing in my right ear, but I expected that, and balance issues continue to improve.  I walked a half mile around my neighborhood today with my husband starting, stopping, and turning like my PT said and the sun felt really great!  I'm so relieved that I could come home by Christmas.  Still a little queasy from all the medication, but that continues to improve, too, if I spread them out and don't take them all at once.  Again, thank everyone for this site and all the information it provides.

Jean

[Palace]

You are in my thoughts and wishes over the holiday.  We are all there for you.  I added you to the 06' list of TX people.  We are having a giant MEGA TOAST out for the end of the year.  (all the AN people on the list and especially the ones' treated this year, want to toast this 06' away)  Read the Mega Toast posts!



Take care,



Palace