Hi..it's me again...

[LN]

Hi everyone

It's me again, the daughter of the mother with a  6 X 4mm  AN.  To recap, my mother is a 83 year old active, mentally alert woman with a positive attitude.  Her small AN has been giving her major symptoms such as balance issues, facial nerve twitches and a over all" lousy" feeling.  She is under the care of a ENT doctor at Jackson Memorial Hospital in Miami.  She has gone through physical therapy to help with her balance issues, but it did not help. Her AN has grow within one year from 3X4mm to its present size.  Considering the small size, it is definitely impacting her quality of life.  I have spoken to a Dr. De La Cruz at the House Clinic and after reading the reports I sent to him, his suggestion would be a Labrinthectomy, which he describes as a 45 minute out patient procedure  going in behind the ear, which completely removes the balance center including the tumor.  It will leave her totally deaf in that ear. 

I am always reading the post on this wonderful site and I have not read of anybody having this procedure.  The doctor At Jackson Memorial isn't recommending this surgery, maybe this surgery isn't his speciality, but I am not sure.     We are very confused on what to do, but we do know we must do something.  My mother does not like the idea of losing her hearing in that ear since she does have major hearing lose since childhood and unfortunately, this ear is her good hearing ear.  I do not want her to be deaf, but I know she can not continue with the symptoms she has now.

Thank you for listening.

ellen

[ppearl214]

Hi (me, again) Ellen!   Good to see you back. Thanks so much for your mom's update. I hope you enjoyed a wonderful Mother's Day together.

In all honesty, I do want to share that head MRI's have a margin of error of +/-2mm, so honestly, your mom is right on that line of margin of error (from 3mm x 4mm to 6mm x 4mm, but unsure what was the time difference between the 2 sets of films), thus, it could have grown very miminally, or not at all.   That is still a very small AN and, to me, I would really make sure you cover all bases, consult with many neurosurgeons (locally as well as HEI, which you have already done), as well as research some radio-surgery options, esp. on an AN that size and most importantly, speak to as many other patients as possible (the ANA does offer a Willing-to-Talk list of folks that volunteer time to speak on the phone with others).  My concern, to me, would be her age... there are some that report that the older you get, an AN may tend to slow in growth.  Yet, as we know, "individual results may vary".

I know, from what you share, mom is having a bit of a time, esp. with balance. As we know, regardless of which treatment option, AN's tend to affect the balance, so, there are ways to try to help counteract with meds and vestibular exercises.  Many An'ers that have had surgery... or have had radiosurgery, complain of balance issues. Please take a quick peek at the "Balance Issues" forum on the dicussion forum home page. There may be some helpful info there.

suggestion would be to contact the ANA office directly (go to the home page here -- www.anausa.org -- for info on how to contact them). They have a wealth of info... and maybe have up-to-date key info that you may find helpful. 

Please tell mom to hang in there... and you too!
Phyl

[leapyrtwins]

Ellen -

I couldn't agree more with Phyl's suggestions.

An AN the size of your mother's is not that large.  At her age watching and waiting, despite her symptoms, might be a good option.  And as Phyl said, there may be things she can do to help her symptions.  Radiation is most likely another good option.  Surgery, while not horrendous, is brain surgery and it takes time to recover from it.

I'm not at all suggesting that surgery is the wrong thing to do - I had surgery myself, but my AN was much larger than your mom's.  I would just make sure you research all the options available to your mom before you and she make the decision to have surgery.  The ANA would be a great place to start as far as information goes.

Good luck to both of you,

Jan

[LN]

Phyl

Thank you soo much for your response and the information you provided.  I will definitely call the ANA and hopefully speak to someone who has had a Labyrinthectomy.  

I failed to mention another option open to my mother and that is Gentamicin injections.  This could be our next non-surgical step.  

I know my mother's AN is very small but unfortunately she is having daily symptoms that are making her practically immobile. She has done the wait and watch now for almost a year.  Having radiation would stop it from growing, but not help the symptoms  she is dealing with. I really don't understand how such a small tumor can be causing so many symptoms.

Thanks again for your support.  It really made my day.

ellen

[Jim Scott]

Hi, Ellen:

I'm sorry to learn of your mothers AN symptoms that are making her life unpleasant.  Sometimes even small acoustic neuromas can cause imbalance, etc depending on their exact location.  I concur with Phyl and Jan.  At 83, surgery is problematic and many surgeons might demur but there are other options available, as you know.  I'm sure you'll be researching those options on behalf of your mother.

To the best of my knowledge (I'm not a physician) a Labrinthectomy is performed on patients suffering from Menieres disease.  Gentamicin injections are also utilized in cases of severe vertigo but, as with the Labrinthectomy, they do cause a total hearing loss in the affected ear, which, as you noted, would essentially leave your mother deaf, as the affected ear is her 'good' ear.  I can understand your hesitancy in going that route, but if your mother's overall quality of life is so negatively impacted by the AN, this may be the best option.  Unfortunately, if the AN is the root cause of her symptoms, even these procedures may not solve the problem, as the AN would remain.  This is where non-invasive radiation ('radiosurgery') might be considered.  It's clearly a tough decision that only your mother, you and her doctors can make.  Ellen, please know that folks here will support whatever is finally decided.  We'll also hope and pray for a positive outcome to the chosen procedure.

Jim

[cherrypiper]

how about the gamma knife procedure here. thats an electron - beam that they can use. its effective 60 % of the time they told me. non invasive might leave hearing .

now not every clinic has this technology so you'd have to look around. im lucky here in Houston we have all of them.

Steve W

[ppearl214]

how about the gamma knife procedure here. thats an electron - beam that they can use. its effective 60 % of the time they told me.

Hi Steve, good to see you. Actually, Gammaknife and Cyberknife both have higher rates of success.

Here is a link to the CKPatient Support board with wonderful input by docs that perform both.

http://www.cyberknifesupport.org/forum/default.aspx?f=16&m=2683

Hope it helps!


Phyl