Author Topic: What Options is the best option for my AN 2.0 ,2.0,2.3 CM  (Read 3771 times)

vinnu_e

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What Options is the best option for my AN 2.0 ,2.0,2.3 CM
« on: September 17, 2015, 02:48:26 pm »
Hi,

Recently I am diagnosed with AN (2.0,2.0,2.3 CM). I am 35 years old. I have 2 year old kid. I am really worried and confused to select an treatment option for my AN. What are the possible procedures that I can go for to preserve my facial nerve and balance? As of now my only symptom is loss of hearing in my left year. I can still hear from that ear but little low compared to other ear.

Please share your thoughts and experiences.

michellef08

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Re: What Options is the best option for my AN 2.0 ,2.0,2.3 CM
« Reply #1 on: September 22, 2015, 07:57:18 am »
Hi Vinnu_e,
I was 27 when I had my surgery 2.5 years ago. There are a few places that perform the most volume of AN surgeries - who perform free phone consults if you send your MRI.
I would recommend you start there to start researching your best options:
https://www.houseclinic.com/consultation/acousticneuroma  - I had my Middle Fossa surgery at House with Dr. Schwartz and Dr. Friedman (who has since moved to USC) and they were AMAZING! They preserved my hearing, and I had zero facial and balance issues. I cannot speak highly enough of the entire team at  House!
http://acousticneuroma.keckmedicine.org/  This is where Dr. Friedman is now.
- I believe they also do free phone consults at Stanford.

My other advice is to see/speak with as many specialists as you can, until you can make a decision that feels right for you. Good luck!
Diagnosed Dec 2012: AN right side 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!!

TR4guy

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Re: What Options is the best option for my AN 2.0 ,2.0,2.3 CM
« Reply #2 on: September 22, 2015, 06:05:39 pm »
If I recall .... the size of the tumor doesn't tell the whole story.  It's shape, its exact location... they play just as much of a role in what effects are to be had.

I'll type this again... I could be wrong... in which case I'm sure someone here will correct me.  (and I'll thank them for it)

An AN tumor is growing on the nerve that affects hearing and balance.  My guess is that if you are having some hearing loss already... there's a good chance that you are going to lose hearing in that ear if you get surgery.  (not guaranteed...but a good chance.)

Losing hearing and balance in one ear aren't the end of the world.  You compensate...  Most people don't even know that I'm SSD.   Like I said... in my opinion...not that big a deal. (for me at least)

The paralysis is due to damaging an adjacent nerve.  I THINK that this usually happens during surgery.  During removal of the tumor.   Whether the tumor is on the wrong side of that other nerve and they have to move it around to get to it... or maybe the tumor is "sticky" and just doesn't want to let go of the adjacent nerve... that's when it can be damaged.

Of course... then you have to worry about how aggressive your surgeon is going to be to try and remove every little bit of that tumor at all costs.
That might be good for him... if there is no tumor left.. then there is no chance of regrowth.  And he has done his job (by his definition)

If you have post surgery problems.... well... that's a problem for another doctor.  He isn't going to fix it by doing more surgery. (sorry...I"m being pretty snippy here)

Doctors with lots of experience with these may have more knowlege about when it is worth trying to remove it all and when it is okay to leave a little bit in there.

Remember.. this isn't cancer.  It isn't going to spread. 
If the blood supply is cut off to whatever little piece of tumor is left... then how is it going to grow?  Not likely.
and even if it does... in that remote chance... and I mean remote....wouldn't radiation be an option?

Michelle is right. 
Get as many experienced evaluations as you can.
Ask lots of questions.

That's the good thing about AN's...  there is usually no need to rush.  You can probably wait several months to decide what to do.





40 yr old single male
Alexandria, VA
3.5cm AN on right side diagnosed July 2010.

Significant unilateral hearing loss
tinnitus
fullness of ear (starting to hurt!)
Occasional headaches on one side
Some loss of balance when moving

Translab Surgery at House Clinic on Sept. 14th. (2010)
Doing GREAT!

vinnu_e

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Re: What Options is the best option for my AN 2.0 ,2.0,2.3 CM
« Reply #3 on: September 30, 2015, 09:51:21 am »
Thank you Michelle and TR4 for your comments.

dmay927

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Re: What Options is the best option for my AN 2.0 ,2.0,2.3 CM
« Reply #4 on: November 13, 2015, 06:19:44 pm »
Hi.
I am 45 and found I had 2cm AN on the left side,  on the brainstem, not in a good spot. My symptoms were terrible nausea and dizziness.
 I just finished a radiation therapy (SRS) plan that was 5 days a week fo 6 weeks.(26 treatments) done by a Linear Accelerator.
The treatments were only 15 to 20 minutes. The hard part was getting used to the mask
they have to put on you each time . It is extremely tight and a bit claustrophobic. I took a valium about 1 hour prior each time. I drove myself to and from each treatment and work every day with no problems at all.  It has been 3 weeks since my last treatment. The only complaint I have I  that the fatigue is kicking my butt. and I still have ringing in my ear. I go back in 3 months for my next MRI.
Like you I was scared and confused. There is light at the end of the tunnel. You just gotta have faith. I am not out of the woods yet per say, but if I feel this good after weeks
of radiation I hope and pray things will be ok.
I hope this helps a little...good luck to you....

v357139

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Re: What Options is the best option for my AN 2.0 ,2.0,2.3 CM
« Reply #5 on: January 14, 2016, 07:16:44 pm »
Vinnu,
Generally the options are microsurgery or radiosurgery or wait and watch.  People with smaller tumors also have the option of wait and watch.  When it gets past a certain size and is still growing, then wait and watch becomes less of an option.  These decisions should be made after consulting with some surgeons.  This site has lots of info on all three options.  I suggest do some research and then post your questions.  Best of luck and let us know what you are thinking.
Rich
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

 


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