Newly Diagnosed in Sept

[Gus]

I've recently been diagnosed with a 7 mm AN in Sept.  Came about due to my tinnitus (dentist, TMJ, ENT, then brain scan).
Anyway, my original MRI was a 0.7 Telsa, no contrast; Drs. now requiring a 1.5 T with contrast.
If it is growing, I'll probably opt for surgery at the House Ear Institute or Gamma Knife somewhere.
If not, Tinnitus is very annoying and taking Xanax to sleep, deal with it during the day.

Questions:
Surgery-Do they always have to cut the balance nerve?
I've heard of a endoscopic surgery at the Base Skull Institute where the don't cut it; anyone had it done there?

Radiation-I've been told Xray is the only radiation treatment for tumors, but Proton can be used for those >15mm.
Does anyone have an idea of how much radiation your dosed with?
Also, I've heard that I'll loose my hearing in the AN side of my head, is this true.

Also, do you every loose the Tinnitus?
Thanks, Gus

[Adrienne]

Hi Gus,

Welcome.  Sorry to hear about your diagnosis.  I can't answer all of your questions, but I can tackle a few.

You won't necessarily lose your hearing on the AN side.  It depends on treatment, skill of your surgeon (if applicable), placement of your tumour, and luck.  I had retrosigmoid surgery and was lucky enough to keep about 1/2 of mine (even though the specialists said there was a 75% chance of losing it).

You won't lose the Tinnitus.  I actually *got* tinnitus from surgery.  I didn't have it prior.  Sorry.  Hard to hear, but true.  It may get worse.  May stay the same, but won't go away.

I'm with you on the dentist visit before finding out about your AN.  Mine thought I needed orthodontic work to fix my bite (I complained of shocking pain in my jaw......turns out it was the tumour pressing on my Trigeminal nerve).

Welcome.  You'll get lots of answers here......

Adrienne

[Jim Scott]

Hi, Gus - and welcome to the ANA website discussion forums ~

Due the relatively small size of your AN, you have options.  Surgery and radiation being the obvious, although should the tumor remain 'stable' (no growth) observation ('watch-and-wait') remains a third option.  To attempt to answer your questions:

The balance nerve usually has to be cut but this is actually a benefit because if the AN has impacted the nerve, which it almost always does, your balance will be negatively affected.  Once the nerve is inoperative, the brain will adjust to receiving balance-related input from your 'good' side.  Because the damaged balance nerve has probably been sending sporadic signals to the brain, negatively affecting your ability to maintain your normal equilibrium, your ability to maintain your balance will improve.  

As Adrienne stated in her post, losing hearing in the AN-affected ear is situational.  It will depend on the damage the tumor has already done, your choice of treatment and a little bit of luck.  Some surgical procedures (Translab) require severing the nerve, making unilateral hearing loss inevitable.  Other surgical procedures don't require cutting the nerve but still have a risk of hearing loss.  Radiation tends to avoid hearing loss but does not improve it, either.  

Endoscopic surgery has been successfully used in the recent past but it is limited and a bit controversial. Here is a link to the Skull Base Institute - the premier practitioner of endoscopic surgery on ANs.  http://www.skullbaseinstitute.com/  For patient stories from this website, just type in 'endoscopic' in the Search bar (upper left corner of the screen).  Some of our members have had good results at SBI.  

I underwent 26 FSR treatments in 2006 to destroy the DNA of a 'debulked' AN.  I received approximately 27 GY.  The treatments were both uneventful (no problems) and successful.

As Adrienne stated, the tinnitus will very likely remain, no matter what your choice of treatment.  By the way, House Ear Institute is renowned for their expertise in removing acoustic neuromas.  

I trust this response (and the others you'll soon be receiving) prove useful.  We know what you're dealing with and understand your concerns.  Please keep us informed as to what your latest MRI scan reveals.  Thanks.

Jim

[Gus]

Thanks very much for your responses, it helps.  By the way, my primary Dr. prescribed me Gabapetin on me to see if it would help with the Tinnitus.  Didn't do anything for me, but made me very sleepy; thought I'd mention it, since he felt it might do something.  Regarding the big T, I'm trying to view my self as the Energizer Bunny (not pink though), and God's just given me batteries that are a little too strong. 

Jim: is there a way to relate the amount of radiation your given in lay terms.  Still trying to figure out my options, and radiation still concerns me a bit.

I'll keep you all posted. 

Gus

[Jim Scott]

Gus ~

Gy is the acronym for 'Gray', which is a measurement of radiation that replaced 'rads'.  For perspective, the average radiation dose from an abdominal x-ray is 1.4 Gy, from an abdominal CT scan, 8.0 Gy, from a pelvic CT scan, 25 Gy and from a selective CT scan of the abdomen and the pelvis, approximately 30 Gy.  (Thanks to Wikipedia for that information...you didn't think I knew those numbers off the top of my head, did you?) 

My 'dose', received over 26 days (approximately 1.1 Gy per day) had no ill effects at all.  No nausea, dizziness or even any loss of hair.  However, the debulked AN suffered necrosis (cell death).

Jim

[suboo73]

Hi Gus,

Stopping by to say hello and WELCOME to the Forum!

WONDERFUL FOLKS HERE!

It's interesting how people end up here and with an AN diagnosis...  I am here because of my sister's diagnosis!

Hope you find the answers you need as you do your research.  As they say, it is slow growing, so take your time.


Sue

[PaulW]

Gus ~

Gy is the acronym for 'Gray', which is a measurement of radiation that replaced 'rads'.  For perspective, the average radiation dose from an abdominal x-ray is 1.4 Gy, from an abdominal CT scan, 8.0 Gy, from a pelvic CT scan, 25 Gy and from a selective CT scan of the abdomen and the pelvis, approximately 30 Gy.  (Thanks to Wikipedia for that information...you didn't think I knew those numbers off the top of my head, did you?) 

My 'dose', received over 26 days (approximately 1.1 Gy per day) had no ill effects at all.  No nausea, dizziness or even any loss of hair.  However, the debulked AN suffered necrosis (cell death).

Jim

I think we are talking milligray here mGy