Which options do I have according to my AN size

[MiniPlant]

Hi all,

My AN is up to 3cm on the right. I have a bit hearing loss and tinitus.  Which options do I have according to my AN size?

Thanks a lot.

Mini

[Pooter]

Generally speaking, the upper size limit for radiation treatment is 3cm..  What's also really important in treatment choice is location of the tumor..  If there is no brainstem involvement, then at 3cm you MIGHT be a candidate for radiation if it's done soon.  If there is already brainstem involvement because of the known/expected swelling of the tumor size in radiation, doctors will shy away from radiation treatment...

Surgical options include the Translab, Retrosigmoid, Middle Fossa, and Endoscopic approaches...  Translab and Retrosigmoid have been around and surgical approaches of choice for many years..  Middle Fossa is gaining steam right behind them and Endoscopic approach is only done by one doctor (don't know doctor's name, but it's Skull Base Institute in Los Angeles, CA).

Doctors tend to favor the approach that they're comfortable with.  Not all doctors do all of the surgical approaches, so they'll "recommend" whatever approach they are comfortable with generally.  It's not uncommon for you to consult House Clinic in LA and be told the "middle fossa is the way to go" and from Skull Base Institute be told the "endoscopic is the way to go" and then get a 3rd and 4th opion that differs from those for Translab and Retrosigmoid..

The decision on treatment is very personal and should line up with your own goals for the surgical outcome, the preference of the doctor who's doing the surgery, and your own personal rapport with that doctor.  Many have said to let your "gut" guide you in making the decision.

With my 3cm tumor with already pretty severy brainstem involvement, I had little "choice" to make about treatments.  Like you, I had hearing loss and tinnitus that were my only "presenting" symptoms.

Regards,

Brian

[Jim Scott]

Mini ~

With the caveat that I'm not a physician and this is simply an opinion, my understanding is that 3 cm is the maximum size AN that will be considered for irradiation treatment, due to swelling issues.  The exact shape and location of the AN is also a factor in determining whether radiation is feasible.  At 'about' 3 cm, you may not be eligible for radiation treatment and will have to consider a surgical approach to deal with the tumor.  Both radiation and surgery carry inherent risks and only a trained, licensed physician can credibly explain your actual options, based on a review of your MRI scan and your medical history.  I know you have some bureaucratic limitations in the Canadian health care system but please make every attempt to locate a doctor well-acquainted with acoustic neuromas and the expertise to offer you realistic options.  Should the size (and location) of your AN preclude radiation, surgery is not the nightmare you may think.  Many of our members have undergone AN surgery with excellent results and they were able to resume normal activities within a few weeks or months, at most.  I'm one of them.  

Jim  

[leapyrtwins]

Mini -

I couldn't have said it any better than Brian (aka Pooter).  He covered just about everything that I would have said.

If you haven't contacted the ANA for their informational literature yet, please do so.  It will explain a lot of things - and in easy to understand words (no medical-speak) 

Jan

[MiniPlant]

Thank you all! I will see my doctor to see which approach he will recommend me.

[MiniPlant]

Hi all,

I saw one doctor and he asked me to do MRI 3 months later to compare. I am wondering with AN as my size, am I still good to be wait and watch?

-Mini

[Pooter]

Mini,

I'm surprised that the one doctor wanted to take a comparison MRI in 3 months to check for growth rate..  I don't think I've heard of anyone being on W&W at 3cm size of AN.  I'm not saying it's not possible, but I don't think I've heard of one.  Perhaps he's checking for growth rate to decide if radiosurgery is an option because if it's growing faster than the normal 1-2mm per year, then radiosurgery may be out of the question whereas if it's stable or very little growth then maybe it is an option..

I'd ask him to see what he's looking for and why..

Just my $0.02 worth.. 

Regards,
Brian

[schram]

hi everyone!
i am just wondering which option pooter chose and how was the outcome?  my father is 70 and i am not sure the size of his AN, but he was in the wait and watch, but now his tumor has grown and now he has a choice of the GK or surgery.  he is in good health, a former marathon runner, still working full time, still running, but has lost all hearing on the right side.  the tumor had not grown in three years, but now he has a decision to make and so many doctors with all different opinions!  he knows he has to do something.  if any of you have any suggestions or could recommend a dr in the san antonio area, that would be great!

[leapyrtwins]

Schram -

if you look at the bottom of Pooter's response, you'll see a brief summary of his outcome.

You'll also find a link to his blog, which is very well-written and informative.

Jan

[MiniPlant]

I saw a doctor and was told that because of my AN size, Translab will be used no matter that I only lost high frequency on my AN side and recognition is still very good.  I heard other patients with similar size AN is recommended with Retrosigmoid and can preserve some hearing. I want to hear any opinion on this?

Thank you, Mini

[Jim Scott]

I saw a doctor and was told that because of my AN size, Translab will be used no matter that I only lost high frequency on my AN side and recognition is still very good.  I heard other patients with similar size AN is recommended with Retrosigmoid and can preserve some hearing. I want to hear any opinion on this?

The doctor decides the most efficacious surgical procedure and that is usually predicated on the size and the location of the tumor.  I would question your doctor why only Translab can be used in your case.  There may be a very good reason for this decision but I would want the doctor to tell me what it is, so I suggest you make the inquiry.

Jim

[MiniPlant]

I was told that if the size is more than 1.5cm, translab will be chosen because facial nerve is more important and  it is hard to completely remove it with other options which might result in regrowth. However, I am in my thirties, one thing is I still have good hearing on my AN side, the other thing is I am afraid what if I have problem with my other ear later in my life? The surgery will be done in about 6 months. Is that too long?
-Mini

[opp2]

It's plenty of time to check your options. As for other opinions, see other doctors.

[leapyrtwins]

Mini -

my AN was 1.5 cm @ diagnosis and I had retrosigmoid.  When the docs "went in" they found that my AN had almost doubled, but they still did retrosigmoid.  I didn't have facial paralysis - other than a day or two post op and it was rectified with a single dose of steroids.  Although I was hoping to save my hearing (which was diminished) that didn't happen.  Nothing a BAHA couldn't help, though 

I'm not a doctor, but I don't understand why one wouldn't do retrosigmoid on an AN that's 1.5 cm.

Not all docs do all surgical approaches - for example, mine only does retrosig & translab; another doctor in his practice does mid-fossa.  It's kind of a "to each his own" thing. 

If you think you may want to do retrosigmoid you might want to consult with another doctor and see what he says.

Just a thought,

Jan