Recently diagnosed - very large AN

[rvb755]

Hi,
I am new to the forum and already have greatly appreciated what I have learned in just a few days.  I had an MRI earlier in July after having a hearing test due to hearing loss on the left side.  The MRI revealed an Acoustic Neuroma which really didn't mean much to me at that point.  My ENT gave me a referral to Dr. Daniels in GR and my wife and I met with Dr. Daniels on Fri. 7/29.  At this consultation I learned the tumor measures 3.2cm by 5.0cm x 3.3 cm (about the size of a large egg).  I have been really stressed ever since finding out the size of my AN.

I have sent a copy of the MRI to HEI and have been told they have received it and Dr. Friedman will be looking at it on Tue. 8/2 and will be calling.  I really liked Dr. Daniels here locally and have heard good things but I am strongly considering going to HEI to have the surgery.  Dr. Daniels has told me he would get me in for surgery by the end of August and would basically debulk the tumor now and do a 2nd surgery in approx. 1 year for the remainder.  I am really anxious to speak with Dr Friedman and get his opinion.  At this point I just want this thing out of my head.

The only symptoms I have had are hearing loss and occasional headaches.  I have been mountain biking and road biking all summer long so balance has not been a problem.  I already am grateful for the things I have learned here, and would appreciate thoughts and prayers from any of you who read this.

Thanks,
Rick

[Tod]

Hi Rick, welcome to our select community, especially the Golf-Ball-Sized Tumor club (although yours sounds more of an ovoid or egg). You've done the right thing by seeking multiple opinions. What helped me was when the docs at HEI said the same things as my local docs at the med school. Both estimated a 14-18 hour surgery and the possibility of both some facial paralysis and difficulty swallowing post-surgery, combined with single-side deafness (which was fine - I was functionally deaf on that side already).

What neither group could anticipate was the stickiness of the tumor. It had a very happy blood supply and was deep down and wrapped around various nerves. So the surgery ended being quite a bit longer. (Don't worry - I am an exceptionally odd case, your experience will likely be different.)  I was also in ICU longer than anyone anticipated and this led to a few other challenges, but nothing that couldn't be handled.

17 months later life is very, very good.

Take a deep breath and keep doing the research. I'm sorry that you had to find us, but glad that you did.

-Tod

[rvb755]

Tod, thanks so much for the encouraging words.  I am really praying for such a positive outcome.  I am ready to have the surgery and begin the recovery process.  I have already come to grips with losing the hearing on the left side, but like everyone else would like to keep the facial nerve function and hope for as little balance problems as possible.

[CHD63]

Rick .....

Just wanting to add that Dr. Friedman is top-notch and will give you his honest opinion of what he would recommend for your case.  He and Dr. Schwartz did my second AN surgery 2 1/2 months ago (a regrowth situation, which is very unusual) and I have had an excellent outcome and recovery.

In my mind, going to House Ear Clinic was the best decision I could have made on this AN journey.  The doctors at HEI are extremely experienced in dealing with all kinds of acoustic neuromas, but especially with large ones like yours, with potentially more complications.  You would be in the best of hands to go there.

Many thoughts and prayers.

Clarice

[ksiwek]

Hi there!

I am echoing Clarice's comments.  Dr Friedman did my AN surgery 14 months ago.  I had a 4+cm tumor and was pregnant.  I could go on and on about my positive experience with Drs Friedman and Schwartz.  I had a couple of consults before I was put in direct contact with HEI.  Both programs said I would need 2 surgeries or surgery and guaranteed radiation.  Dr Friedman removed 99.9% of my tumor, saved my facial nerve, saved my sanity and God willing helped me avoid having radiation and a second surgery.  I would make the same decision to fly to LA in a heartbeat.  There are many skilled docs out there treating ANs with fantastic results, but you have a large tumor and I think that that in itself needs to be taken into consideration.  I am sorry for making such bold statements, but I am very passionate about my experience with HEI    PM me if you would like to talk about anything!  Most importantly, find someone who you feel comfortable with...when you find him or her you will know.  Best of luck to you! 

Kris

[rvb755]

Thanks Clarice and Kris.  It's good to hear positive comments about Dr. Friedman.  I was very comfortable with Dr. Daniels here locally, but I did not meet either of the neurosurgeons he works with.  I have reservations about the experience with AN surgery of the two local neurosurgeons.  Dr. Daniels was going to show them the MRI and let them decide if they even wanted to do the surgery or refer me somewhere else.  His prediction was one of the surgeons would say to refer me elsewhere and that the younger surgeon would say no problem we can do it here.  I am feeling like I need a very experienced team, even if it is across the country.

Rick

[Cheryl R]

I am taking it that you are in MI and the GR is Grand Rapids.    There have been several MI people on here.     Denise S is in Ludington and others over the state.      Several have went to Michigan ear.    Ann Arbor has  surgeons who have spoke at our AN symposiums.         If you do not want to go to LA you might look into other MI places as they do do ANs on a larger scale.    There was a younger guy Darin who did his at Grand Rapids a couple years ago.           I am in Iowa and we have Univ of Iowa which does them on a larger amt also.       I know you are a ways from there as I am in central Iowa and it is 572 mi to our daughter in Lansing!   LOL!      Just make sure you do go somewhere that you are comfortable with the drs and they do ANs on a frequent basis!
                                                      Cheryl R

[rvb755]

Cheryl, I am in Michigan near Grand Rapids.  I have an appointment with Dr. Figueroa, a neurosurgeon, this afternoon.  It looks like he is chief of neurology at Spectrum in GR.  If anyone has used Dr. Daniels and Dr. Figueroa in Michigan I would love to hear your thoughts.  I did receive a call from Dr. Friedman at HEI, but have not spoken to him yet.  He left a message and in the message he urged me to come out to LA due to the size of the Tumor.

Rick

[Jim Scott]

Hi, Rick ~

First, welcome to the ANA discussion forums.  I'm glad they've been helpful to you as you begin your research into addressing your AN.  I was diagnosed with a very large AN - 4.5 cm (actually, more like 5 cm once exposed during surgery) that was successfully debulked and later radiated in a comprehensive plan of attack, as it were.  I won't attempt to 'medically' advise you at this point because I'm not a doctor.  However, your concern regarding the neurosurgeons experience with acoustic neuroma extraction is well founded.  The ANA strongly advises AN patients considering surgery to choose a doctor with extensive experience in AN removal.  I was very fortunate to find a local doctor that had such experience.  He was even a member of the ANA (for decades).  He did a splendid job (with his protégé, also a neurosurgeon) and worked closely with the brilliant radiation oncologist that oversaw my FSR treatments a few months later.  However, had I not found this doctor, I was anticipating calling HEI and, based on their sterling reputation, scheduling my surgery with them.  That wasn't necessary - but I mention it because I concur with your reservations about 'going local' and understand your sense of confidence in HEI.  However, I hope you'll give the 'local' doctor(s) a chance.  I've always maintained that, as good as the doctors are at HEI, there are many 'local' surgeons that are fully capable of performing successful AN surgery.  You just have to seek them out.  The surgery follow-up is obviously easier with a local doctor, although most HEI patients don't mention follow-up as an issue.   Whatever doctor/facility you choose, Rick, we'll support you and give you all the help/ advice/ information we can.

Jim

[Desilu]

Hi Rick,

I would like to just add a thought or two. You have already been given very good advice. I would like to add to what Jim said about followup visits if your decide to go to HEI. My local doctor, Dr. Wiet, in Chicago, just happen to be a friend of Dr. Brackmann. After my surgery, Dr. Brackmann wrote Dr. Wiet a letter asking him to do follow up care on me, should I need it. It was well received, and I went for a one month hearing check up after my surgery. His services were not needed after that. If you can find a local doctor that works for you, that is wonderful. But if you decide to travel, ask your local doctor if he would do your follow up care, just in case you need it. I wish you the best on your decision. Ann

[rvb755]

Thanks everyone for the advice, I am trying to take it all in to make a wise decision.  I was really stressed out this morning, but felt reassured after meeting with Dr Figueroa in Grand Rapids.  I know AN surgery is not normally considered emergency, but because of the size of my tumor, I would like to make a decision by the end of the week on where to have the surgery performed.  I have had contact with HEI, and they are my first choice if they can fit me in the schedule soon.  I could use some feed back on whether I am moving to fast in making a decision.  I was able to see my MRI for the first time this afternoon, and the tumor does indeed look large.  Fortunately, the neurosurgeon said he did not see any sign of swelling.

[JAndrews]

I would definitely go to HEI. I disagree with all of the people who say you should go with the surgeon you are comfortable with. Being comfortable with a surgeon is a great thing...but realistically..sounds ridiculous. This is brain surgery. Experts, real experts would be the only ones operating on my head. A good bedside manner is important...but the skill of the surgeon is number one in my book. This surgery can have life long side effects depending on the route you choose. I have never read or met anyone who went to HEI with Friedman or Brackmann that has life long side effects other than SSD and some minor balance issues, if any. Best wishes to you!

[Kate B]

If you are considering microsurgery, I'd like to express my satisfaction with House Ear Institute.

After all my reading, I learned that the treatment choice depends on the
size of the tumor, its location, and your hearing level mostly. It  took me
until September  (and I was diagnosed in May2001 and my treatment was at
the end of November2001) to know what I really wanted to do and where to go.
I considered each treatment option seriously and oftentimes felt overwhelmed
with all of the information.

My right sided growth was 1.5 cm. After reflecting over my experience, I
want to *emphasize* one thing: the experience, expertise and passion of the
doctor you select for treatment means everything no matter which treatment.
Most agree that they need experience with more than 100 cases. I went with House and Dr. Brackmann because I wanted to be the typical patient. IMHO, the more complicated the case (size, location, etc), the more expert the doctor one needs.

Through my reading, I also learned about potential side effects and about
the many excellent facilities throughout the country. One of the first
decisions I made was that this was unique enough of a condition that it
warranted going where the expertise works even if it was outside of my local
area. I looked for patterns in the posts on the listserv related to
treatments and doctors. House makes it easy for out of town patients by housing patients at Seton Hall for a nominal fee per night.  There is no problem flying after the surgery and is the preferred mode of transportation if you are more than three hours from home.  I flew from LA to Chicago 12 days after surgery. Like Ann (Desilu), I follow up with Dr. Wiet in Chicago.

All the best,
Kate

[ksiwek]

Rick,
If you decide on HEI,  I know they would prioritize your case due to size.  They did for me.  Dr Friedman will get it worked out!  My surgery was a moving date because of my pregnancy.  When I couldn't go on any longer, they got my surgery booked on a Friday mid morning and he and Dr Schwartz worked on me until 11pm that night...

To give you line of sight as to how many HEI does...I was wheeled back to the OR the same time as 2 other patients.  The hospital staff is well trained on AN patient needs!

Have you talked to Dr Friedman over the phone yet?

[CHD63]

Rick .....

I agree with Kris and Kate.  HEI will work you in quickly.  Mine was a non-emergent situation and I still was in surgery within six weeks of the decision to go there.

If your experience is anything like mine, you will never regret the decision to go there.

I, as well, flew from LA to D.C. to home 12 days after surgery with no ill effects.  The OT/PT team will give you instructions about walking in the plane every 30 minutes but that is to prevent blood clots in your legs (for which any airplane flyer is at risk) and it was an easy thing to do.  No pressure issues nor headaches on the flights.

Many thoughts and prayers.

Clarice