Author Topic: House Ear Institute  (Read 73509 times)

Kate B

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House Ear Institute
« on: February 23, 2005, 07:05:21 pm »
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
« Last Edit: May 28, 2005, 11:28:52 am by Kate Besserman »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

kristin

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Re: House Ear Institute
« Reply #1 on: February 23, 2005, 10:09:08 pm »
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
8 x 5 mm Left Acoustic Neuroma
Middle Fossa
House Ear Clinic
Dr. Derald Brackmann, Dr. William Hitselberger
April 14, 2005

"I have told you these things, so that in me you may have peace. In this world you will have troubles. But take heart! I have overcome the world." John 16:33

Jeff

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Re: House Ear Institute
« Reply #2 on: February 23, 2005, 11:20:24 pm »
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
NF2
multiple AN surgeries
last surgery June 08

Lisa Peele

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Re: House Ear Institute
« Reply #3 on: February 24, 2005, 04:58:26 pm »
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...

« Last Edit: June 27, 2006, 07:17:04 am by Lisa Peele »
Lisa Peele, 38
Dublin, OH
4.3 cm X 3.3 cm (right)
Translab.
House Ear Clinic (Friedman and Hitselberger)
June 14, 2004

jcc

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Re: House Ear Institute
« Reply #4 on: February 25, 2005, 11:26:26 am »
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.

Kate B

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Re: House Ear Institute
« Reply #5 on: February 28, 2005, 07:10:54 pm »
Here is my own story about my experience with HEI. 

I think the *term* brain surgery can be frightening. It doesn't have to be.
I must admit that when reading the posts in the old format called a guestbook and on the
listserv, people were extremely satisfied with House. I believe that if you
go to an institution like House for surgery, you will get the best possible
outcome.

I had Middle Fossa Surgery for a 1.5 cm right sided AN on November 29, 2001 with Dr.
Brackmann and Dr. Hitselberger.  The staff there is very professional and
used to handling acoustic patients. As a matter of fact, House takes up the
whole sixth floor of St. Vincent's Hospital.

My surgery was 4-41/2 hours. You complete several tests the day before
surgery  including a hearing test, a meeting with the surgeons, bloodwork
etc..

The day of surgery is interesting.  They typically start the operations in
the late morning/early afternoon. You check into the hospital about 9 am and
you go to the sixth floor and wait in a private hospital room until surgery.
When it is time, you are wheeled down a corridor toward surgery. It seems
funny to remember this, but I remember the sunlight streaming in through all
of the windows. Then you are taken  to a room where you meet with the
anesthesiologist.  The doctor confirms the correct side of the AN and marks
your ear.  I remember the anesthesiologist asking me what I was most afraid
of prior to surgery.  I remember answering her and her reassuring me.  Then
I was out and before you know it they are waking you up and asking you to
wrinkle your nose and smile. These are actually informal observations that
they use to determine your facial nerve outcome.

You are kept in ICU 24 hours and then discharged to your own room. All of
the rooms are individual (private) by design. The first 24 hours were the
hardest for me because I was dizzy.  But before you know it, you are
returning to the sixth floor.    My surgery was Thursday, I was in ICU until
Friday night and discharged to Seton Hall on Monday. (Seton Hall is adjacent
to the hospital and is a facility where you recover). It is like a Holiday
Inn and the charge is a nominal $35.00 per night (2001) making the stay affordable.

By the following week,  I went to a restaurant in Hancock Park
and the waiter was in disbelief to learn that I had brain surgery the week
before. I must admit, I was tired afterward and that trip tired me out...I
set goals and stuck to them. I  just worked to get better.  I was 45 when
diagnosed and 46 when I had the surgery. I was *determined* to get back into
my routine ASAP without overdoing my recovery. I followed the doctor's
orders during my 5 week recovery time before my return to work.

The doctors  want you to stay in CA for two weeks.  I ran a low grade fever
for a few days about 5 days afterward.  Dr. Stephen (the internist that you
see out there) was not worried because of the low gradedness of it and no
headache associated with it. Fatigue was the biggest culprit the first few
weeks. I took daily naps. My facial nerve was preserved, my eye closed all
the way and I retained much hearing. (note: I had 100% hearing prior to the
surgery in that ear.  Now I have 50% low frequencies and ~80% high
frequencies and 84% word discrimination.)  Each day I grew stronger.  The
first day in my hospital room, I made a goal to walk around the floor once
per hour. The next day my goal was three times per hour.

We stayed at Seton Hall the
entire two weeks.  Some chose to move into a hotel after surgery.

The most important thing no matter which treatment you choose is to look at
the physicians and their experience.  On the listserv, people generally say
that the doctor should have more than 100 treatments under his/her belt.
Check out their statistics relative to patient outcomes for your specific type of treatment. 

Kindest Regards,
Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Becky

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Re: House Ear Institute
« Reply #6 on: February 28, 2005, 07:34:18 pm »
I wish I could have gone to the House for mid fossa. 

Becky
« Last Edit: March 12, 2005, 07:24:03 am by Becky »

David Wrubel

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5+ cm AN removed at House 4/2000....here's my story:
« Reply #7 on: March 11, 2005, 11:04:31 am »
I had almost no symptoms until I felt strange and dizzy going up and down a ladder. My Connecticutl Otologist (who ironically had been a fellow at House 30 years ago) sent me for an MRI to "eliminate" the possibility of a tumor, which I instantly knew I had. Thinking that the absence of symptoms correlated with the size of the tumor, within two days I was  ready to go down to Johns Hopkins or the Cleveland Clinic for radiosurgery. Then the MRI scans came back.

The AN was huge. Radiosurgery was out, he explained, because the tumor was so large that there was no room for swelling and that the pressure on my brain stem, already significant, would increase to the point where I could die. Thus began my quest for the best possible surgical outcome, starting locally, expanding to Mass. General, Yale, Sloane Kettering, Mt. Sinai, and House. All but House were relatively close, and all but Yale were out of network, according to my insurance company. But that's another story.

Discussions with doctors at these institutions revealed significant differences. Their personalities were a factor, their surgical approaches varied, and with the exception of House their prognoses were guarded and far less than I was looking for. Some estimated 14-16 hours under anesthesia, and a couple of the surgeons told me in no uncertain terms they would have to sever the facial nerve. One said I'd likely need two surgeries. I sent my scans to House, and the next day Drs. Rick Friedman and Bill Hitselberger called me. Basically, they said, I needed to have this thing out quickly, felt strongly that they could do it without severing the facial nerve, and expressed confidence that my outcome would be quite good. Surgery would take five to six hours, an entire floor of St. Vincent's hospital across the street for the Clinic was devoted to their surgical patients, and the medical staff - not just the surgeons -  had seen every complication and was accustomed to handling any situation.

Over the next two months, I submitted three formal appeals to my insurance company to allow me to go out of network and have the surgery performed at House. All three were rejected, this after extensive medical research and documented statistics, courtesy of access to the University of Connecticut Medical School Library via my good friend and cardiologist. The people at House were outstanding, sending letters on my behalf and agreeing to be reimbursed by my insurance comapny as if it were a California HMO. But the key was my wife, who out of frustration called the Medical Director of the insurance company and told him that she thought I was going to die. While that wasn't the case, it go his attetion and I got my approval. I had about four days to actually worry about the surgery.

My experience as a patient was outstanding. I believe that my absolute faith in Friedman and Hitselberger helped enormously. Not only did I never once think I might actually die, but I had no doubt that I would be able to resume my life with very few residual effects of the surgery, aside from losing the hearing on my right side. That, I figured, was a small price to pay.

There was very little pain, at least relative to what I expected. Because the tumor was so large and the surgery so long (6 hours, which for House is a long procedure), I was in ICU for three days, then in a room for another five days. I was released, but developed a very small CSF leak that only required that the incision (hole in my head!) be repacked and reclosed, which Hitselberger thought from the outset might have to be done. A few days later I was released, and my recovery began.

Rick Friedman told me when I left Calfornia that mine was the largest AN they had removed to that point where the outcome resulted in such a high degree of facial mobility, lack of headaches, almost no balance issues, and no eye problems. Hitselberger wanted to take me to a LA Dodgers game toward the end of my stay, but they were out of town!

The flight home was uneventful, and though I was much more tired than usual for the next three months or so, things were remarkably normal from the beginning. I started driving again two weeks after my return, and a month later attended my first business meeting in New York. That nobody present suspected anything unusual about me at this meeting was the result I was looking for.

It's now almost exactly five years since the surgery, and I can still tell you what I had for breakfast the day after I was released. As if it were yesterday, I remember my first post-hospital bath, certain things we bought in LA, and my wheelchair ride through LAX. There is some residual numbness in part of the right side of my face, sort of like permanent mild novocaine. I can't kayak (takes an amazing amount of coordination and balance), my basketball career is over (then again, at 50 yrs. old it was anyway), and I do shy away from concerts and really loud clubs, since I only have one ear left. Which brings me to the biggest problem I have....I miss hearing in stereo. Following conversations in noisy restaurants is difficult, and strategic seating in such places is a must. Again, a small price to pay for what might have been a far less satisfactory outcome.

If I had $10 million of spare change, I'd give a lot of it to House. They didn't just save my life...they preserved it. For those of you now facing all the decisions that are part of the AN process, this should be your goal: A Great Outcome. Let nothing, not distance, not cost, not even insurance companies, get in your way. Particularly if you have a large tumor, in my opinion 2 cm or larger, House is the best place to go. There is more individual and institutional experience in this very specialiozed form of brain surgery at House than there is anywnere else in the US.

Please, feel free to contact me with any questions or concerns. I have been in touch with lots of people over the past five years, including some other people on this forum. When I get an AN message on my machine, it's the first one I respond to. Same with emails. Talk to you soon.

Good luck....DW


Update 4/23/05: Recent MRI showed no tumor regrowth. Fourth year in a row. Radiologist who reads my scans can't get over the quality of the work. He calls the surgery a work of art every time he transmits the results to my internist.
« Last Edit: April 27, 2005, 04:58:35 pm by David Wrubel »
Regards....DW

5+ cm right side AN removed at House Clinic, Drs. Friedman & Hitselberger 4/13/2000, age 47.  Facial nerve intact. No eye problems, headaches, or balance issues. Drove 6 weeks later. 1st biz trip 8 weeks later. Huge tumor....great outcome.

sreda

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Re: House Ear Institute
« Reply #8 on: March 11, 2005, 03:33:28 pm »
Hey, y'all (I'm from the southern US):
Replyling to Kate and Kristin aobut House. I had my tumor removed late last summer at House, by Drs. Hitselberger and Brackmann.
My experience before, during and after was as good as I could have hoped... better, actually. I have highest regard for the docs, House, St. Vincent's hospital, Seton Hall recovery/lodge, nursing staff, attending internist Dr. Stefan. They ALL "knew their stuff" thoroughly, and were compassionate, straightforward and thorough. I'd go back there for the same reason if I ever have to... but I hope I won't.

Sis

   
Sis
Left side 4mm AN removed middle fossa 8/2004 at House by Drs. Brackmann and Hitselberger. 48 yrs. old

micbendz

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Re: House Ear Institute
« Reply #9 on: March 11, 2005, 08:33:17 pm »
Has anyone had surgery  performed by Drs. Luxford or Schwartz at House?

Thanks, Mike

TKPatel

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Re: House Ear Institute
« Reply #10 on: March 13, 2005, 03:12:18 pm »

 Hello Mike:
                 My husband had surgery at the House on Sept 30th. He is 37 and his tumor was 1.7 cm and compressing the brain stem. Dr Schwartz performed the surgery along with Dr Luxford. He had no symptoms prior to surgery and we discovered it by accident. We were told that he would lose his hearing in the left ear and there might be some damage to the facial nerve. We opted for Retrosigmoid. Dr Schwartz advised us that he was a good candidate for this surgery. His surgery took longer than expected and he had trouble swallowing for 2 weeks. I am very pleased to say that my husband has recovered a 100%. No dizziness, damage to the facial nerve or hearing loss. This was the most amazing team of Doctors. My husband's brother is a doctor and he had consulted many of his colleagues prior to choosing the House. We did a lot of research and experience won over proximity. The doctors went out of their way to make us feel comfortable. Looking at my husband you could never tell he had brain surgery. I hope this helps. Good luck.

 T Patel

islandgirl175

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Re: House Ear Institute
« Reply #11 on: March 15, 2005, 02:59:18 pm »
My doctor refered me to Dr. William Slattery at House Ear Institute.  My ENT told me he was the best.  I posted on the old web site to find out information about him.  I received several very good recommendations.  The best advise was for me to call him.  I called and left a message and he called me back the same day.  We talked about the different ways to treat my tumor.  He is a surgeon but he told me he is working on medications to treat these tumors.  I sent my MRI films to him and he called me back the day he got them.  He also had me talk to several patients that had tumors my size with my hearing.  I am still not sure what I will do.  He is a surgeon, but he also said he does radiosurgery.  He only does radiosurgery on tumors that grow. 

Karissa

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Re: House Ear Institute
« Reply #12 on: March 23, 2005, 10:00:00 pm »
I had my 4mm AN removed by Dr. Friedman and Dr. Hitselberger in December 2004. I am doing great.

 I went for my 3 month follow up hearing test today (I had my AN removed via middle fossa) and the news is very good.  My hearing is still within normal limits, that is, 25 decibels or less in both ears.  My left ear (AN side) was a little worse in hearing high frequencies than before surgery, but it is still within normal limits.  Great News!!! My hearing was saved!! Yea!! And so was my facial nerve!!

Karissa Shields

LBM

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Re: House Ear Institute
« Reply #13 on: April 13, 2005, 01:07:23 pm »
Hi,
I am a 30 year old female living outside of Manhattan. I was recently diagnosed with a 3 cm acoustic neuroma with 3 mm extention into the internal auditory canal. I went to Cornell and Mount Siani in NYC and was told they do different approaches. The are both the chairmans of their neurosurgical departments. The dr. at Cornell said he needs to do the surgery with a neuro-otologisist and the docotr at Mount Siani said since the tumor is more on the pons, it is more of a neurosurgical procedure and would not necessarily use a neuro-otologist unless he needed to . This left me very confused. I have been reading about House Institiute in LA and am now considering it. Is it worth the travel to go there? I have been speaking with a neuro-otologis there, Dr. Friedman who thinks I should come out to him and he would do the surgery with a neurosurgeon. When you went which neurosurgeon and neuro-otologist did you use and do you think it was worth it?
I would appreciate any advise you could give.
Thank you,
Lauren

Karissa

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Re: House Ear Institute
« Reply #14 on: April 13, 2005, 03:53:54 pm »
Lauren-
 I used Dr. Friedman at the House-he is wonderful!!!!!  The neurosurgeon I used was Dr. Hitselberger who has done over 6000 acoustic neuroma removals.  Please e-mail me at karissashields@cox.net if you have more questions.

I traveled from Oklahoma to Los Angeles for the surgery, and I think that I definitely made the right decision.

Karissa