my wife was diagnosed with an acoustic neuroma a few days ago...

[alfonso]

Hello all,

I'm new to this forum, looking for some opinions as to what steps my family should take to help treat my wife’s AN. 

We are a young couple with 2 children, 3 years and 1 month old.  My wife is 36 and was diagnosed here in NYC with a 2cm AN on her right side. 

Her symptoms are only numbness of the right side of her face, but no paralysis of any type.  Her hearing is pretty good as well, no balance problems and no headaches 

Today we will go and talk to our neurologist about what to do next.  Over the phone, he suggested surgery by a team of doctors at Cornell.  He told us that preserving the hearing would be unrealistic and that we should concentrate on saving the facial nerve function and feeling.

There is so much information out there that it makes it nearly impossible to determine one procedure over another.
Some say radiotherapy is best, others surgery, others a combination (debulking and then radiotherapy). 

Complications for both are not pretty.  Some say they will try to save the nerve and some like my neurologist say forget about it.

There are many institutions out there and all want to have good report cards, thus their statistical info is really hard to break down or even trust.

Can anybody here help me?

Treatment options for a 2cm tumor?
Side effects of those treatment options?
Institutions where these procedures are common place?
Doctor references?


I don't care if my wife can’t hear from one ear , and I don't care if she has facial palsy..i just want her safe and sound after it all..

Of course im heart broken to think she will be very uncomfortable with these result from surgery..
Are there any cases where facial palsy did not occur? Or where hearing was preserved long term?

Thank you in advance for all your input

Alfonso

[ombrerose4]

Hi Alphonso,
I am sorry to hear about your wife's diagnosis. The days of shock and information seeking are the hardest. You are right, there is so much info out there, it is hard to take it all in. My advice is to interview a few Dr. teams in different hospitals, listen and make notes and maybe contact HEI in California for another opinion. There are quite a few good teams in NY- NYU, Mt. Sinai, NY Eye and Ear Infirmary. I am sure other members will chip in and gic=ve you more feedback. I had my surgery at Mt. Sinai, with Dr. Bederson (neurologist) and Dr. Choe (neurotologist). Although I did lose my hearing and do have post op headaches, I was very pleased with them. They were caring and informative and they were able to remove the entire tumor. I don't have any facial paralysis, but do have a very dry, tearless eye. There are so many nerves involved in such a tiny space, that unfortunately there can be many possible issues. But if you listen to my fellow forumites, you will see that many have had successful surgery or radiation treatment with minor problems or none at all. We are all different and our bodies react differently, but you will see we are a tough bunch

Take your time, get lots of information and talk out the issues. Ask questions on the forum, check out the ANA main website for more information and choose a doctor that you feel comfortable with. It is a tough time but it will come together and you will both get through it. Many of us are also on the willing to talk list that ANA provides and we would be happy to hear from you. Let us know how it goes,
Lauren

[keithk]

Welcome to the forum. I am sorry to hear about you wife's diagnoses. There are a lot of wonderful and caring members here willing to help.

Do a lot of research on AN. The more informed you are on all the options will help you make the choice on her treatment.

[questions?586]

I would also look into Cyberknife.  You will find in most cases the doctors know most about their own course of treatment so you have to go to the doctors that do the other treatments to get the big picture.  I wish you well.  There are many options in the NY/New England area.

[CHD63]

Alfonso .....

Adding my welcome to this forum of caring, supportive friends.  You have already received good advice.  Just wanted to add that if you have not already done so, I would urge you to send for the free ANA materials:  http://anausa.org/sc/apps/forms/forms.cgi  They are very informative and reassuring.  On the ANA USA home page you can also find information about doctors, local support group meetings, and Willing to Talk patients ..... please check it out.

Ask any and all questions you may have and have your wife join us, as well.  It is a scary time and treatment is such an important decision.

Size of tumor is only one factor in treatment options ..... the exact location and symptoms are very important, as well.  With numbness in her face, she needs to seek expert opinions from medical personnel who have treated many ANs, not just a few in the course of their experience.  In my opinion, the greater the successful experiences of the doctor, the greater the successful outcome.

Many thoughts and prayers.

Clarice

[sunfish]

I'm not a doctor, and there may be good reasons your doctor told you what they did, but I wouldn't take just one opinion that hearing preservation isn't possible.  Lots of good advice so far from everyone.  The good news is that this is no longer a life-threatening tumor, due to modern technology.  Read every shred of information you can find on this forum and elsewhere, and get opinions from docs that do both traditional surgery and radiosurgery.

[Mark241]

You came to the right place! Everyone here is so helpfull. Sorry you had to find us, but hope is here. I had a right AN 3.5cm removed retrosigmode. My surgeon's were Dr Bambakidas and Dr. Weisskoph (ENT) at Barrow's neurological Institute in Phoenix AZ 2006. I had temporary facial paralysis (3 weeks) but that went away and my smile is straight as it was before. It is still amazing that I have about 30% hearing in my ear. I have had some CSF leaking issues but I'm confident that it is going to be resolved here in a few weeks.  I made a mistake and had 2 surgeries to correct that at another Hospital that was closer to where I live, for monetary reasons. Not ever going repeat that mistake again. I suggest you get other opinions, not just from a neurologist, my experience is that they don't understand the surgical approach. find a ENT that's certified in neurotology, most hospitals that have a specialty in AN surgery approach the AN as a team, with the ENT assisting the neurosurgeon. Having undergone 4 neurosurgery's, I can tell you the level of training that the nurses and other staff have, is just as important.         

[Tisha]

I'm so sorry about your wife.  When I found out about mine 2 years ago, my husband did as much research as I did.  I don't know what I would have done if I hadn't had him to lean on. 

This website is the one that helped me make my informed decision.  I personally think it's THE best one out there.  I'm sure you are already, but please look thru all the archived posts.

That is crazy what he said about hearing preservation, especially since your wife isn't having any now.  What I did was have copies made of my MRI and sent them to Stanford, Beth Israel and John Hopkins.  I decided on the cyberknife treatment due to the statistics of 98-99% tumor control, no facial paralysis and 75% hearing preservation.  That doesn't mean 25% go deaf completely, it just means that there is some loss of hearing (which could include deafness, also). 

Dr. Chang at STanford University does both...surgery and Cyberknife (about 50-50), so you will get an unbiased opinion from him.  He will call you after he reads your MRI and is very accessible.  I believe a 2cm AN is still in the boundaries of having CK done.

I have to go, but please keep reading all these posts...you will get invaluable information!  Tisha

[JLR]

Hi Alphonso, Here is my suggestion; I initially saw Dr. Christopher Linstrom, at the Eye and Ear Hospital on 14th Street, 212-979-4200 He is a surgeon in the ENT dept. The director.  He is a very very smart man.  After looking at my MRI and my hearing tests and after he conducted a balance test on me..he concluded that surgery was out! This is a surgeon who specializes in AN..he told me since my hearing is so good, that in order to preserve it, the best bet for me would be Cyberknife! He referred me to Dr. Jonathan Haas at Winthrop University Hospital in Mineola,NY
 516-742-5576. He is the Chief of Radiology Oncology. He looked at the MRI and the hearing tests as well and said I was a good candidate for Cyberknife. It is a process. But I am on a 3 day treatment plan and just completed 2 days. They have a wonderful Cybercenter made up of amazing professionals.  I "graduate" tomorrow.  On this site you will get lots of great information and names and numbers to research.  In NYC we have so many doctors and hospitals to research.  I found it  easier to go with the referrals ( which I of course checked each and every one out) I was very pleased with my decision. (I did see several doctors before making my decision, but, it all stopped when I met Dr. Haas.)  Good luck, stay in touch, Joan (oh and my AN 2.3 x 2.0 x 1.9 cm right side)

[Jim Scott]

Hi, Alfanso ~

I can't add to the mounds of good advice you've already received and I don't want to repeat it all but I do want to offer you my welcome and my empathy for you and your wife.  The days following an AN diagnosis are some of the hardest, I know.  The unknown can be intimidating and no one wants to make the 'wrong' treatment decision or forget to consider any possible option.  This is where your research will help as it not only will give you the information you need but having that information will make both you and your wife better equipped to reach the decisions necessary in the days and weeks to come.  It's a form of empowerment that benefits everyone involved.  I know you realize that the coming weeks will involve a lot of doctor visits, demand patience - and some schedule juggling, I'm sure.  You and your wife will probably see more doctor's offices, labs and hospitals than you ever wanted to see, but remember that all the hassle is both necessary and, thankfully, temporary.  Eventually, you'll make a treatment decision and follow through with it.  Yes, whatever approach your wife chooses to take to deal with her tumor will carry some element of risk, that can't be avoided.  However, these days, many of the risks formally associated with acoustic neuroma surgery and/or radiation have been diminished or removed from the equation.  The majority of AN patients do quite well.  I'm one of them   At age 63 I underwent both surgery and radiation (in a planned, 2-step process) for my large (4.5 cm) acoustic neuroma, and enjoyed complete success and an excellent recovery...and I'm hardly an anomaly.  Many of our members have similar stories to tell, and they will, I'm sure, in an effort to encourage you and your wife as you begin the process of moving forward with treating her AN.  Fortunately, you're located in New York City and enjoy a plethora of doctors and facilities that treat acoustic neuroma patients.  I know that our members are eager to help and support you and your wife in whatever way we can so please allow us to do so.  Thank you.

Jim

[JAndrews]

My son was 2 and my daughter was 8 weeks old when I was diagnosed. I know what you and your wife are going thru. I spent 3 months and alot of money researching my options. I consulted with many physicians who do this surgery. The fact is this...the approach into the brain is extremely important when it comes to the possiblity of life long side effects, such as headaches, facial paralysis. Your wife is young, (I was 38 when I had my surgery in 2/2009). I had the translab approach at The House ear Institute with Dr. Brackmann and Dr. Marc Schwartz. I have single sided deafness, (it takes getting used to), tinnitus constantly (you get used to it). No other side effects. The last headache I had was after my surgery. Dr. Brackmann will consult on the phone and the office will set up surgery without having to go to LA for a face to face consult. The problem with radiosurgery is that if it doesn't work or doesn't shrink enough and surgery is needed at some point, the surgery becomes harder. Send the MRI CD to House/Dr. Brackmann, he will call you. It will be the best call you will ever make:) After the surgery and a little over a year later I was still dealing with depression/anxiety from the whole "brain tumor" experience. I am really good now! My children are now 26 months and 4 1/2 years and I am thankful every day that I wake up to spend another day with them..healthy and happy! Please tell your wife she will be ok. I know how horrified she must be. I walked in her shoes...Please have her contact me if she wants to, I will be happy to speak with her via telephone or internet. Send me an email to my yahoo account which is on my profile

[alfonso]

thank you all for all of your words of encouragement, it's all very helpful.  It is very nice to know there is such a forum with such strong people.  I will for sure take all of your advice and information.  Don't be surprised if i use the phone numbers given in the future.  For now our neurologist has advised to spend the holidays with family since there is no rush with such a slow growing tumor.  I'll be back in January with more questions probably.  In the meantime i will start sending the MRI results to several options we have and investigate the ones you mentioned.  I will try to get my wife to join this forum as i'm sure it will make fell much better.

thank you so much again, good luck with everything and have a great holiday with your loved ones.

Alfonso

[moe]

Hi Alfonso,
Good advice from your neurologist to spend time with the family, and try and enjoy the holidays. The tumor isn't going anywhere and most likely isn't going to go through a rapid growth spurt!
Not the best news to get in december, but at least you know it is there, and it will be dealt with one way or another. Lots of time on your side.
Hope to hear more from you in the new year. Tell your wife it will ALL work out. It's like a puzzle, putting all the info and options together, and when you come to that decision, it will be a great relief, the puzzle will be complete (so I've heard anyway )
Maureen

[mandy721]

It is never good to read about another person diagnosed with an acoustic neuroma, but this discussion group and information from the ANA are probably the best resources around to learn about acoustic nueromas, treatment options and most of all connecting with the wonderful people here.  Our collective wisdom is incredible!  That said, having gone through this with my husband 14 months ago, my first suggestion is to take the time you need to research treatment options and arrange consults.  It is hard to push this to the back of your mind, but enjoying the holidays is the best suggestion. For us the eight weeks from diagnosis to surgery was pretty calm; the anxiety kicked in after surgery.

We are also located in New York.  My husband's tumor was large and we were told it had to come out by the teams we consulted with.  In your wife's case she should consult with surgeons who do micro and radiosurgery.  Drs. John Golfinos at NYU and Michael Sisti at Columbia do both. 

Ken's symptoms were much like your wife's - tingling and a bit of numbness in his lip and tongue  and a slight hearing loss in the ear.  When he went for a hearing test, he thought he needed a hearing aid and ended up having brain surgery.  The hearing was still pretty good in the ear and his surgeon thought he might be able to save the hearing. Ken lost the hearing in the ear; since then we have read that the number of people who retain hearing with the retrosigmoid approach is very low. 

Take your time and ask all the questions you can think of.  Peace - Miranda

[leapyrtwins]

Alfonso -

sorry to hear about your wife's AN.  While it's scary to be diagnosed, speaking from experience, I can truthfully say that one day this will all just be a distant memory.

Although the docs @ House are very good, there is no reason for you to travel all the way to Los Angeles when you have some stellar doctors right in your own backyard.  Drs. Roland & Golfinos come to mind.  So do Drs. Sisti and Selesnick. 

Not everyone can or wants to travel out of state for surgery or radiation and if you can't or choose not to you shouldn't feel bad about that. 

I had surgery less than 20 minutes from my house, here in Illinois, and I had the best outcome I could have asked for.

Enjoy the holidays and then investigate the options out there.

Best,

Jan