Author Topic: AN Diagnosis Received Yesterday  (Read 8203 times)

geriw

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AN Diagnosis Received Yesterday
« on: February 05, 2014, 12:01:16 pm »
I learned that I have a 2.6cm AN with significant mass effect on the pons and middle cerebellar penduncle.  I understand the AN but do not understand the impact of the "significant mass effect".  Where do I start?  I live in the SF Bay Area and am fortunate enough to have good insurance coverage.  I can go to either Stanford or UCSF.  Is one better than the other?  When I see the surgeon, what questions should I be asking?  The post-op posts are terrifying.  Is there a chance surgery will help?  What questions should I be asking?

CHD63

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Re: AN Diagnosis Received Yesterday
« Reply #1 on: February 05, 2014, 02:08:57 pm »
Hi geriw and welcome to this forum .....

None of us are trained medical professionals, but we collectively have many experiences that we can share with each other.

Since you live in California, you have many excellent medical facilities from which to choose, in close proximity.  Stanford has an excellent reputation for Cyberknife treatment of ANs.  House Ear Clinic and University of Southern California in Los Angeles have excellent reputations for surgical removal and/or radiation treatment.

It boils down to what is right for you.

The ANA has compiled lists of possible questions:

First, to yourself:  http://www.anausa.org/index.php/overview/questions-to-ask-yourself

and secondly to physicians:  http://www.anausa.org/index.php/overview/questions-for-treating-physician

I strongly suggest you look at these and then ask here on the forum about specific concerns.

Not to scare you, but I have had two surgeries to remove my acoustic neuroma and have virtually no ill effects from them (other than hearing loss), but I chose my physicians very carefully.  Because the AN (vestibular schwannoma) grows on the balance branch of the auditory nerve, most patients must readjust to functioning with only one vestibular nerve, but it can be done.  Many of us ultimately had to lose our hearing in the AN ear, but some do not.  And, technology is in our favor these days with wonderful hearing assistance (other than traditional hearing aids).

Many thoughts and prayers for the decision-making part of your journey.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

arizonajack

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Re: AN Diagnosis Received Yesterday
« Reply #2 on: February 05, 2014, 05:08:29 pm »
Not all post-ops are terrifying.

I had a smaller AN and had one-time Gamma Knife a year ago and have had no significant issues since then.

The size of your AN is still within the parameters for radiation as well as surgery.

Your doctor ought to be able to explain the medical terms to you. Don't hesitate to pin him down for it and ask him to show you a diagram.

And keep poking around this site. There are plenty of good resources available.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

geriw

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Re: AN Diagnosis Received Yesterday
« Reply #3 on: February 06, 2014, 11:28:26 am »
Thank you so much.  This website and the information provided have been wonderful.  I appreciate having someone to talk to so early on, it is a tremendous help.  A lot to digest!

v357139

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Re: AN Diagnosis Received Yesterday
« Reply #4 on: February 06, 2014, 07:51:50 pm »
Here is another good post op post.  I had 3.5cm removed at House in Los Angleles with no real permanent issues. I am doing great.  I recommend you at least send your MRI to them for the free phone consult, especially since you are in CA.  I think mass effect just means its pushing on brain.  I had mass effect also, and have seen that more than once on this site.

When mine was 2.7cm, most of the doctors recommended surgery over radiation.  But there was one very experienced and respected radiation doctor who proposed radiation.  So just keep im mind that not all doctors feel the same about when to use radiation.  They propose what they are most comfortable with.

For starters on the differences.  With surgery they usually (not always) start with trying to get it all out.  Radiation does not get rid of it.  Successful radiation stops it from growing, then the body sometimes absorbs it over time (years).  Radiation takes longer to know if it worked, than surgery.  Radiation does avoid or decrease some of the surgical complications like CSF leaks.  That is a main high level way to look at the difference.  Let us know if you have specific questions.
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!!

LakeErie

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Re: AN Diagnosis Received Yesterday
« Reply #5 on: February 06, 2014, 09:06:19 pm »
Mass refers to your tumor which is a "mass" on your cranial nerve. Effect means that is of size sufficient to affect your brain, intracranial pressure (ICP), and/or eggress of CFS ( cerebrospinal fluid.)
An example is my own. My tumor reached my brain stem and cerebellum. The pressure from the tumor displaced my brain's 4th ventrical preventing complete drainage of cerebrospinal fluid which increased my ICP. I was told this fact meant I needed surgery in 5 or 6 weeks. Symptoms of my increased ICP were elevated blood pressure and decreased heart rate.
Most AN's of size exert "mass effect" and it is not unusual. Some cases of mass effect do require
quicker treatment, but not all, or even most of them. I am sure your physician/s will advise you where you stand.
« Last Edit: February 06, 2014, 09:09:34 pm by LakeErie »
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

leapyrtwins

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Re: AN Diagnosis Received Yesterday
« Reply #6 on: February 07, 2014, 03:42:53 pm »
I don't think my post op posts were scary.  I had a great outcome and a very good experience (keeping in mind that I had brain surgery  :) )

Please take what you read on the Forum with a grain of salt.  Often people come here when they have post op problems they are trying to resolve. 

If I lived in your area I'd check out Dr. Chang @ Stanford.

Best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

newan1

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Re: AN Diagnosis Received Yesterday
« Reply #7 on: February 08, 2014, 12:23:54 am »
I noticed one thing. Doctors who do more radiotherapy will promote CK,GKor other radiotherapy. Doctors who are regular or good with surgery will promote that. So far I haven't seen one person who do 50% GK or CK and 50% surgery and has neutral views. Tough to decide 

kcarloy

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Re: AN Diagnosis Received Yesterday
« Reply #8 on: February 09, 2014, 10:03:37 pm »
Do not be afraid of surgery, within days you will be recovering and getting back to normal like. Most people do very well and go back to their jobs, hobbies and life! I am almost ready for my 2 month post op mark, and have been back to work fulltime for 2 wks, back to horseback riding, taking care of my life! Work on improving your health now, with walking daily to set yourself up for a good recovery!
Good luck! Karen

v357139

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Re: AN Diagnosis Received Yesterday
« Reply #9 on: February 10, 2014, 09:08:56 pm »
Newan1 you are right that different doctors will propose different things based on their own level of comfort.  Whichever way you go,  main thing is to pick someone with lots of experience, whether it be radiation or microsurgery - thaat experience gives you a great chance.
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!!

leapyrtwins

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Re: AN Diagnosis Received Yesterday
« Reply #10 on: February 16, 2014, 11:43:43 am »
I noticed one thing. Doctors who do more radiotherapy will promote CK,GKor other radiotherapy. Doctors who are regular or good with surgery will promote that. So far I haven't seen one person who do 50% GK or CK and 50% surgery and has neutral views. Tough to decide

This tends to be very true.  That's why its important to consult with a doctor who does both radiation and surgery.  My neurotologist does and he gave me the choice; flat out refused to decide for me as he strongly felt it was my decision. 

I know for a fact that he's told others - with different circumstances - what option would be best for them; but if there is no clear cut way to go he believes the patient should decision (after he tells them all the pros and cons of each procedure, obviously).

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

MikeW

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Re: AN Diagnosis Received Yesterday
« Reply #11 on: February 16, 2014, 12:02:55 pm »
We were also terrified when we first found out Mike had an AN and read some of the post op posts on the ANA Forum.  I had a good friend who pointed out that most people who have a good experience after surgery stop posting, so unfortunately, most of the posts are from those who are having post op issues.  Hundreds of people have had good experiences through surgery and radiation.  Mike had revision surgery 1-23-14 at the House Clinic on a 3.4cm AN and is feeling better than he has in 20 months.  3 weeks post op and he is back to work and feeling better everyday.  Because his tumor was so big and pressing on the brain stem, he was having all kinds of issues prior to surgery.  I think using the most experienced doctors is important.  We learned the hard way by using our local doctors in Omaha, NE for Mike's first surgery.  We feel Mike's wonderful outcome was due to lots of prayers and the best doctors.

Marilyn
7-18-12 MRI 2cm AN, 100% loss of useful hearing and some balance issues.
12-20-12 Translab only removed 10% of tumor, slow recovery of facial nerve
9 month post op MRI 2.6cm
1-23-14 Revision Translab on 3.4cm AN at House Clinic.  They removed 98% of tumor and facial nerve not damaged. We're thrilled

leapyrtwins

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Re: AN Diagnosis Received Yesterday
« Reply #12 on: February 16, 2014, 12:11:35 pm »
I had a good friend who pointed out that most people who have a good experience after surgery stop posting, so unfortunately, most of the posts are from those who are having post op issues. 

Absolutely true.  Lots of us with great outcomes tend to leave the Forum as time goes on.

Or, we leave for a while, and then return.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

leapyrtwins

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Re: AN Diagnosis Received Yesterday
« Reply #13 on: February 16, 2014, 12:16:36 pm »
I think using the most experienced doctors is important.  We learned the hard way by using our local doctors in Omaha, NE for Mike's first surgery. 

Also, absolutely true.  One of the things the ANA highly recommends is that you find a doctor with lots of experience in treating ANs; it makes all the difference in the world.  "Local doctors" aren't the issue - I had my surgery locally - the key is that they have the necessary experience (mine did).

Lots of great, experienced docs out there all over the country; the ANA has a listing on their main web page.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: AN Diagnosis Received Yesterday
« Reply #14 on: February 16, 2014, 02:39:25 pm »
Geri ~

In May, 2006 I was diagnosed with a large (4.5 cm) AN and found a 'local' neurosurgeon (in New Haven, CT) who had three decades of AN removal experience.  He said he could 'debulk' the tumor (peel off layers) then team with an excellent radiation oncologist to 'map' 26 FSR treatments intended to destroy the remaining tumor's ability to re-grow.  I agreed.  Because I was SSD going into the surgery retaining hearing in the affected ear wasn't an issue.

The 9-hour debulking surgery went very well and all my symptoms disappeared.  No facial nerve damage and a fairly quick recovery.  The follow-up radiation was uneventful but effective.  Subsequent MRI scans showed tumor necrosis and the beginnings of shrinkage.  Both doctor and patient were elated.

A few years later I referred an AN patient (with a small tumor) to this same neurosurgeon.  Because her tumor was small, he immediately walked her down to the radiation oncologist's office to set up a consult.  He was a neurosurgeon but did not automatically tell every AN patient they needed surgery.  He was also 'local' although well-respected and a part-time lecturer at Yale Medical School in New Haven, CT.  This courtly, mature neurosurgeon treated me like a VIP (I'm not).

There are doctors like this all over the country.  Finding them can be the challenge.  The AN website and Discussion Forums can help.  I consider myself extremely fortunate to have found 'my' neurosurgeon.  I only regret that I can no longer recommend him to other AN patients because he retired from his practice last year. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.