My mother was recently diagnosed & I'm freaking out

[mary_craig]

Hello,
 
My mother was diagnosed with an Acoustic Neuroma (Cystic Vestibular Schwannoma) in her left ear canal this past January.

Female | 67 yrs old | extracanalicular 2.5 x 1.9 x 1.8 cm | intracanalicular 1.0 x 0.4 x 0.5 cm | 20 x 18 mm in AP & transverse dimension

Current symptoms:
Ringing & hearing loss | Headaches | Dizziness | Vertigo | Off balance | Confusion | Memory loss | Facial & tongue numbness | Taste changes

In the middle Georgia area, she has seen her Primary Care Physician, a Neurologist and was recently referred by the Neurologist to see a Radiologist.

The Neurologist's impressions included:
20 x 18 mm in AP and transverse dimension | The left superior cerebellar artery courses along the superior margin of the left CP angle mass | Close to or pressing on brain stem | There is no evidence of significant intracranial stenosis and there is no evidence of intracranial aneurysm

Our current Neurologist said that her tumor is a 10 on a scale of 10 in size and surgery would result in complete hearing loss and facial movement on the left side of her face then referred us to a Radiologist to see if my mother would be a candidate. This information along with his terrible bed side manner is when I started freaking out.

We of course want to preserve as much as possible including her health, facial movement and hearing but being told by a Neurologist that radiology would be the only way to do so is very concerning.

This poses the question, Surgery or Radiology?

I've read some articles on Microsurgery, Cyber-knife, Gamma-knife, Endoscopy, etc. Please, any information, words of advice, referrals, physicians in the Atlanta (or wherever is best) are welcomed.

Regards,
Mary (for my Mom)

[CHD63]

Hi Mary .....

Hearing the diagnosis of having an AN can be very unnerving, to say the least.  If you have not already done so, send for the free informational materials from the ANA (see:  http://anausa.org/index.php/contact-us/free-ana-information-packet  ).  These materials will answer many of your questions and help you to sort out all of the information on treatment and outcomes.

Because ANs are relatively rare, this is one time when you want a physician with vast amounts of experience in treating specifically acoustic neuromas, not just any brain tumor.

There are several excellent medical facilities around the country that specialize in treating ANs that will give free evaluations if you send them a CD of your MRI and a brief explanation of symptoms and any hearing loss.  One such place is House Ear Clinic in Los Angeles (see:  http://www.houseearclinic.com/consultation/acousticneuroma ) or Stanford University or University of Pittsburgh Medical Center or several others.

Best thoughts and many prayers for successful treatment.

Clarice

[Cheryl R]

I am sure what the neurologist told you would scare you to death.   I disagree with him with some of what he said and sounds like he does not have the best knowledge of ANs.      Clarice gave you good advice and hopefully others will answer too as there have been some from Georgia who have had surgery in that area.                Her tumor size is in the medium size and one can not say how it has or has not involved the facial nerve untill one really has surgery and sees how it is affecting it.        Only if the facial nerve is cut is there for sure paralysis and frequently there is just some damage which can result in temporary paralysis and many have none at all.              We hope we can be of help to you both and all goes well in time.                        Cheryl R

[mary_craig]

Clarice & Cheryl,

I got a copy of my mother's MRI on CD and plan to reach out to all of the available resources. Thanks so much for the kind words and responses. Keep those prayers and positive thoughts coming!

Kind Regards,
Mary 

[Kathleen_Mc]

First off a terrible bedside manner in a neurosurgeon is not uncommon, try to put it aside.....the way I look at it is he does his best work with unconscious people .....look him up and see how other people view him.
My neurosurgeon (and for sure his secretary) are not personable people but the man is skilled and a pioneer in neurosurgery.....when someones dancing around in my head that's what I want.....I got my family to hold my hand!
In my experience surgeon's in general, I am a nurse, tend to be very blunt, to the point and can be rather cold.
He recommended  a radiologist , see what they have to say.
 I would think with your mother's age recovering from brain surgery would have great challenges and radiation would be the better way to go, if possible.
Keep us posted.
Kathleen

[Nannybee]

Mary, I also was fairly recently diagnosed with my AN (December). It is frightening at first, but I am coming to terms with it and with a little more time and some advice from a doctor you trust, you will too.

2 Neurosurgeons and 1 Neurotologist have all recommended Gamma-knife (goes by different names depending on the manufacturer, but radiation).

I'm not familiar with Georgia, but your Mom may have to travel to one of the major cities to find a neurosurgeon who has experience with ANs. you mentioned she saw a Neurologist, but see needs to consult with a Neurosurgeon. They will work as a team with a radiation specialist and a physicist to direct her Gamma Knife treatment if that's the way she decides to proceed.

Best Wishes

[Cheryl R]

Also seeing a neurotologist who does many ANs a year could be an option.         That is what my dr is at Univ of Iowa.          One also has to think what treatment would remove some of her symptoms.     Confusion is not usual unless she has other health issues.     Her age is still not too old as there have been many on here who did fine with surgery around that age.       I am now a retired nurse due to having NF2 and 3 tumors and retired prior to the last surgery.             Each person is individual in their health and how the AN affects it.
                                                                 Cheryl R       

[cindyj]

Hi, Mary...I will send you a pm later today (running out the door), but wanted to at least say "hi" and let you know that I'm in Atl. There are only a few docs in Atl who have significant AN experience - Mattox/Olson at Emory, Bhansali/Javed at Kennestone/Northside are the two teams I hear of most from patients I meet and talk with in GA.  Howard Chandler has just come to Atl (Piedmont Hosp) from Baptist in Jax, FL.  He is actually on the ANA's list of recommended docs (no other docs in Atl are on it). 

Anyway, I would be glad to talk with you further - I will send you my phone # so you can call me if you'd like and/or, we have a support group meeting coming up on Mar 16th on the north side of Atl...Know it's very overwhelming and scary for you and your mom.  We will all help you as much as possible.

Cindy

[chloes mema]

Hi Mary

My heart goes out to both you and your mother.  I was 65 when diagnosed with my AN, had Cyberknife radiation May 2012 and over all am doing very well.

My advice to you is remain as calm and level headed as possible, that will help your mom as much as anything.  I speak from experience since my daughter "freaked" out when I finally told her what I had.  So on top of dealing with my own AN panic I had to deal with calming her down and explaining what I had learned and telling her not to listen to her friends because the AN is benign.

You have gotten excellent advice on this form, also on the acoustic Neuroma Association site there is a list of doctors by state; this might help you.  If at all possible, I highly recommend that you go to the group meetings.  They're informative and were helpful to me.  It helps just to talk to others that have experienced what you are going through.  Also, on the website are resources for caregivers.

Keep reading and posting on the forum.

Karen  

[Jim Scott]

Hi, Mary ~

For what it's worth: I underwent both a 9-hour AN 'debulking' surgery and then, 5 weeks of fractionated radiation to deal with a large (4.5 cm) tumor when I was 63 years old.  I'm no athlete but was (and remain) in generally good health with no medical issues. I came through the surgery just fine - no complications - and the radiation was tedious but with no negative side effects.  My hearing in the affected ear had been lost (due to my foolish procrastination in seeing a doctor about my unilateral hearing loss) but I had no facial nerve problems and my recovery from surgery was relatively rapid.  That was almost seven years ago. 

Today, I'm doing great.  Although one person's outcome is not a template for every AN patient, as one who went through the AN surgery and radiation experience as a sexagenarian I wanted to add my experience to the thread and hope that it may be of some help to you and your mother as you both contemplate how she will chose to address the situation.

Jim

[james e]

I would disagree about your Mom being too old for surgery. It is not a difficult surgery to recover from. No one here should advise you how she should be treated. The doctor that treats her will have years and years of experience with ANs, and his advice should be listened to. We are veterans of AN treatment. We are not doctors, and we do not give you advice like that.

I was 60 when I had my surgery. It was an easy recovery. I have no idea if she would recovery like I did or not. There are many factors that determine that. Her doctor will help her make the right decision.

James

[mikechinnock]

Kathleen_Mc tells it like it is. After 20 years and 60 hours of surgery on my brain, my neurosurgeon still called me Mr. Chinnock. His nurse said neurosurgeons really do not want to get personable with their patients, as they lose too many. She said he was the finest neurosurgeon she had ever worked for, and his being chief of neurosurgery spoke loudly. I tended to agree and i was not there for his bedside manner.

Aside from the general health of the patient and his/her ability to withstand the surgery, the age of the patient and growth rate seem to me material, as well as the desires of the patient. AN tumors are generally slow growing. A large tumor can result in a lengthy surgical process, with a lot of neurological damage resulting. Radiating the tumor might kill it, or slow it down even further. Depending upon the health of the patient, the patient might die of old age before the tumor kills her.

I recall my surgeon telling me when I was pondering radiation treatment, 'Tumors grow, and this one will kill you unless we can stop it.' Rather blunt, but to the point.

I experienced 60 hours of neurosurgery in four crainiotomies with this surgeon. He got all the tumor and It has not shown any reoccurance. My family can hold my hand, but I picked the neurosurgeon to get rid of the tumor. He did so, but it took 60 hours of surgery and 4 operations. Can you mother tolerate such an experience ? It might be a possible situation she finds herself in. Advice from a neurosurgeon she has confidence in is my thought when dealing with a large entrenched AN.

I hope things go well for your mother and my prayers are with her.

[Tumbleweed]

Hi, Mary:

Based solely on what you've said here, I think radiation is probably your Mom's best option, for several reasons:

1. She is already experiencing symptoms of trigeminal nerve pathology (facial and tongue numbness and taste changes). The tumor is apparently pressing against or possibly wrapped around the trigeminal nerve. (The extracanalicular measurement along the cranio-caudal axis implies this). Surgical resection is far more likely to damage the trigeminal nerve further (sensory nerves are far more fragile than motor nerves), compared to radiation.

2. Given her age, and depending on her health and vigor, radiation will be easier for her. Regardless of age, radiation imposes a much shorter recovery time compared to surgery. CyberKnife and GammaKnife radiation have virtually the same success rates at controlling tumors as microsurgery.

3. Given the tumor's size along the cranio-caudal axis (from top to bottom), her facial nerve stands an exponentially better chance of having its function preserved with radiation treatment vs microsurgery.

4. Given your Mom's tumor size, it is virtually certain she would lose all hearing on her AN side if she had microsurgery. Her risk of complete hearing loss with radiation is also very high, but -- statistically speaking -- considerably lower than with microsurgery.

Contrary to what your doctor said, your Mom's tumor size is not a 10 on a scale of 1 to 10, so you can take comfort in that. Brain tumors can grow to be several times larger than your Mom's. That said, the size of her tumor puts her on a tight schedule for treatment if she wants to have radiation. Once the tumor begins to significantly push on the brainstem, most doctors will refuse to treat with radiation, leaving microsurgery as her only remaining option. I'm not saying you need to panic and rush her off to the hospital for treatment immediately, but you should not wait for more than a few months if you wish to preserve radiotherapy/radiosurgery as a treatment option. Also, the longer you wait, the more potential there is for her facial symptoms to increase and her hearing loss to escalate.

Here is a helpful link comparing radiation options with surgery (look for my post about 40% of the way down the page):
http://anausa.org/smf/index.php?topic=6670.0

Best wishes,
TW

[sidecar Kathy]

Hi Mary,  I wanted to say that I live in Middle GA area.  I saw the post from Cindy and she is a great person to talk to as I have talked with her and plan to meet her in ATL after my Pre-op on the 13th..  I am 53 and am having Trans Lab surgery on March 14th in Atlanta by Dr. Mattox and Dr. Jeffrey Olson.  I am hoping in the next few months after surgery to start up my own group here in Middle GA.  I was first diagnosed in 2007 and was a watching and waiting patient till 10-12 when my ENT in Macon said that my last MRI showed some growth and it was time to do something about it.  That was hard to hear as I really never thought I would have to do something about it.  Well after that a good friend found the AN website and now I have people to talk to that know what I am going through.  I'm a little nervous about surgery but I know I will be in good hands and that is all that counts.  I hope that we get a chance to meet in the future.  PM me if you would like and let me know where you are from and maybe we could meet. 
Good luck to you and your Mom.  I know she is one lucky lady to have you in her corner!!!
Kathy