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Kate B:
Hi all,

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.

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 of $40.00 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.

I thought that this might be the place for others having microsurgery at House to post their experience. It is one of the foremost surgical institutions operating on AN's. Read about them at http://www.houseearclinic.com/acousticneuroma.htm  Note:  This doesn't minimize other great institutions performing surgery elsewhere. It will just give HEI patients a place to post.

I look forward to hearing about your AN experiences at House.

Kindest Regards,
Kate

kristin:
hi kate!
just thought i'd reply to your House post here! i have not had surgery yet, but am scheduled w/ dr brackmann and dr hitselberger in april 05. i was dx'd in late december 04 and wrestled w/ all my options until 2 local otolaryngologists and one local neurotologist all personaly recommended dr brackmann and the House Ear Clinic. i live in Montana, so my options are very limited around here..figured since i had to fly somewhere anyway..i might as well fly to LA and get the best treatment available! i'm at peace w/ my decision..and i'm excited to hear (ha!..get it?!) other people who went to House tell of their experiences there..
kristin

Jeff:
Hello,

I have had 2 AN surgeries, one to debulk a very large tumor (2.5 cm with a 5 cm cyst attached), and the other to remove the residual tumor. At the time of my diagnosis, my tumor was large enough to be life threatening, yet my hearing was perfect. I talked to Dr. Rick Friedman and Dr. Williiam Hitselberger at House Ear Institute and their recommendation was surgery via translab. I also talked to Dr. Robert Spetzler at Barrow Neurosurgical Institute in Phoenix, AZ. He recommended  retrosigmoid in an attempt to preserve my hearing.  Either way, I had to make a decision quickly, because I needed surgery right away.

I chose Dr. Spetzler at Barrow who said I had a 50/50 chance of preserving some hearing. When I went to my preop appointment with the neurotologist he works with, he laughed when I told him that Dr. Spetzler thought he could save my hearing. He thought there was a 1% chance.  Well, I lost my hearing and they left a good portion of the tumor in my head. Don't get me wrong. They saved my life -- I was not well. But in retrospect, I think that because the doctors at House see so many of these tumors, they knew there was no point to taking the retrosigmoid approach.

Less than 2 years later, an MRI showed that my residual tumor had grown and was now 2.6 cm. I had decided that when I needed surgery again I would go to HEI. I had  surgery via translab performed by Dr. Friedman and Dr. Hitselberge in Dec. of 2003. The entire tumor was removed with no facial nerve damage whatsoever. The only problem I have is a dry eye, which had been helped greatly by a punctum plug.

My experience at HEI was fantastic. The doctors are skilled, kind, and compassionate. I maintained contact with Dr. Friedman for 1 1/2 years before my surgery. He is an awesome guy. Dr. Friedman is very accessible. He has always answered my emails in less than 24 hours. He often telephones me in response to my emaiils.  In my experience, the House doctors have very defiinite opinions , and will be glad to share them with you if you ask. They do not, however, pressure you to choose what they recommend. They have plenty of work as it is.

I continue to work with Dr. Friedman because I have NF2. My AN on the other side was 3.3 cm at last MRI (Aug 04). I am awiating results from an MRI I had on 2/21/05. I may be back in LA soon.

The arrangements for family are very nice. Seton Hall is on the hospital complex -- very convenient for patients and families. LA is what it is -- urban. Coming form Wyoming, I didn't care for LA particularly, but I will gladly go there again when I need to.

One of the things that I have learned from all of this is to seek out al of your available options, research them carefully, talk to your potential doctors, look carefully at what you want out of life, and choose the doctor and tretment that you want. You have to live with your choice, so be sure you understand them. I have chosen to be treated t HEI, and have never regretted it.

Please understand that these are my personal experiences and opinions. Others will vary. I would be glad to share with anyone or answer any questions you have about my experiences.

Best wishes,

Jeff

Lisa Peele:
I was 34 when I was diagnosed with a 4.3 cm X 3.3 cm AN (compressing the brainstem).   I had noticed that I was having trouble hearing out of my right ear (everything sounded garbled).  After appointments with my family doctor and an ENT were inconclusive as to the source of my hearing difficulties, I went in for the MRI.  It showed a huge tumor that had to be removed quickly.  I went through all the emotions--shock, terror, sadness, and then a lump-in-the-throat, pit-in-the-stomach reality.  I did not have the options of radiation or watch and wait, which did simplify things to some degree.  My husband and I met with a local (highly regarded) neurosurgeon.  Estimate:  8-18 hours to remove the AN, 5 days - 2 weeks in the hospital most likely followed by months of physical therapy.  Complications likely due to the size and location of the tumor.  She sees 10-12 ANs per year.  We began to realize the gravity of my situation and knew we needed to find specialists.

After much research, my husband (who was doing all the research) decided on the expertise of the doctors at the House Ear Clinic in Los Angeles where they do over 300 surgeries a year, with about 50 on tumors the size of mine or bigger.  Once the decision was made to travel for treatment, a huge weight came off our shoulders.  Just as an experienced painter is likely to paint the straightest lines, a surgeon who does this every day will be the most likely to get rid of the tumor with the fewest complications and the best possible outcome.  We chose Dr. Rick Friedman and Dr. William Hitselberger (immensely talented and absolutley dedicated...accessible, honest, compassionate, and humble men).  You get the sense immediately when you meet them that each case is important and you are going to get their best effort.  I know this was the right choice for me.  We didn't want to wonder if we'd made the right decision regarding treatment--the consequences were just too huge.

Two weeks after my diagnosis, I had the translab. at St. Vincent Medical Center, with complete resection of the tumor in 3 1/2 hours (no complications).  I was home in 2 weeks, able to smile and walk in high heels :).  It's been 8 months since my surgery, and I am completely recovered and back to life as I knew it pre-AN.  What a gift!

As a part of my recovery, I promised myself that I would never forget this experience, that I would be grateful for each day, and that I would continue to help others facing the same situation.   Please email me (lpeele@columbus.rr.com) if you'd like to know more about my experience.  I'm happy to share information!

Update (May 10, 2005):  My one year MRI came back clear.  According to the radiologist, there is no evidence of regrowth of the tumor.  It is completely gone, and I am profoundly grateful.

Two-Year Update (June 14, 2006):  It’s been two years to the day since my surgery.  I am happy and healthy and am expecting my fifth child in August.  I’ve read so many stories from others who have been treated and are dealing with the after-effects of surgery or radiation, and I wish I could wave a magic wand and make their troubles go away.  I know we are all unique--as are our tumors, and therefore also are the situations we find ourselves in regarding treatment and recovery.  There just aren't enough good stories told--I know there are lots, but for some reason you don't find them when you get on-line.  I stay active on this board to give hope and encouragement to others facing treatment.  I'm on the board almost daily to see if there are others I can help in any way—but most of my interaction is “behind the scenes�.   I’ve made many friends through this board, and I cherish those relationships.  We are all lucky to have the concern and support of so many...

jcc:
I had a pleasant stay at Seton Hall when I had my 1.8 cm left size tumor removed by Dr. Brackmann and Dr. Hitselberger in Nov of 2003. The rooms were large and the price was right. Also, it was part of the hospital complex.

One bit of info. It's the Neurosurgeon that actually removes the tumor. In my case, it was Dr. Hitselberger. If you are using a team that includes Dr. Hitselberger, it's pretty certain that he's the one that will be debaulking the tumor. The other Dr. will help remove the bone around the auditory canal to open access for the neurosurgeon. Your hearing and facial nerve outcome will greatly depend on his skill that day.

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