Author Topic: House Ear Institute  (Read 74047 times)

Kate B

  • Hero Member
  • *****
  • Posts: 743
    • AN World
Re: House Ear Institute
« Reply #15 on: April 22, 2005, 05:55:45 am »
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

Lauren,

It is normal to be confused during the investigation process. There is so much information out there that contradicts each other at times.  I put together a chart that includes data in order to sift through some of the contradictions I found in my own investigations. Write me if you'd like it.

My doctors were Dr. Brackmann and Dr. Hitselberger at House. They perform as a team.  Once there was a Discovery Medical Program filmed titled, Sherry's Story. It showed an operation at House by Dr.  Friedman and Dr. Day (I believe he has since left House).  In it they shared the rationale for having two doctors that paraphrased is something like this:  Each doctor can do both parts of the operation; however one requires fine delicate movement and one is larger movement.  During an operation, it means that one doctor can focus only on the delicate movements and one on the larger movement.

I traveled from Chicago to House.  There is absolutely no problems with flying.  As a matter of fact, if your trip is over three hours they highly recommend flying. 

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/

tumor mom

  • New Member
  • *
  • Posts: 14
Re: House Ear Institute
« Reply #16 on: April 22, 2005, 07:27:19 am »
Lauren,

We just got back last week from the House Institute.  My 19 year old daughter had surgery on 3/31/05 with Dr. Friedman and Dr. Schwartz.  She had the translab approach for a 5cm tumor,  the surgery went longer than expected but when she came out she had no facial paralysis which was a great sign for a tumor as large.  She is now 3 weeks post op and has a little facial weakness but we are told that should all go away once the swelling goes down.  She is doing great - she's just tired from the surgery but each day we see an improvement.

I cannot say enough about those two doctors and St Vincents Hospital.  The hospital usually has at least 6 of these surgeries a week and the doctors and nurses have seen it all.  No matter what questions we had they had an answer and like clockwork she would feel better when we were told it would happen.  Doctors Friedman and Schwartz were compassionate, straightforward, very knowledgeable and returned phone calls immediately.  If we had to do it again we would in a heartbeat.  We flew from Houston to LA and spent a total of two weeks there.  While we were there, there was a woman from Brazil, a patient from Israel, one from Idaho and a few Californians.

If you need any other info or would like to contact me here's my email dlsdms@earthlink.net.

We were all set to have suboccipital approach at The Texas Medical Center and we read the posts on this website and contacted a former patient from House and decided that our best option to save the facial nerve was to go to LA.

I wish you good luck in your decision - just remember to research all your options.

Donna

kristin

  • Full Member
  • ***
  • Posts: 172
Re: House Ear Institute
« Reply #17 on: April 23, 2005, 09:49:03 am »
hello all! just wanted to give my post surgery info now!  i had middle fossa on 4-14-05 w/ dr brackmann and hitselberger from HEC. everything went great! no hearing loss, no facial paralysis!! i actually only saw dr hitselberger one time after in ICU, and dr brackmann once on the floor. i had my surgery on a thursday, was in ICU until friday evening and then in room 608 until sunday afternoon. my parents met a lot of people in seton that were AN people too..i was amazed at how many there were.

 i felt really good (might have been helped along w/ meds!!) and actually went to an angels/mariners baseball game (w/ a lot of help from my sister!!) on monday and tuesday!! we went to hollywood and beverly hills and santa monica on wednesday too. i think that walking helped me a lot...

i'm now home to montana and so thankful!!! i do have pressure feeling in my head and feel like i have water in my ear..which my doc said was actually blood and will be gone in a few months..my left eye gets really dry and so i've been using a lot of eye drops, but it's pretty annoying. they did shave half my head, so that's going to be interesting too!!!

i thought everything went really well and HEC knows whats up w/ AN's for sure..

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

Mary 117

  • Full Member
  • ***
  • Posts: 100
Re: House Ear Institute
« Reply #18 on: April 26, 2005, 11:55:01 am »
Hi. Thank you everyon who takes time to post information It is so great to read all these letters. Dx 2 weeks ago with an AN and my Dr in Montana has put me in touch with Dr. Brackmann at the HEC. It's happening farirly quickly because they want to try and save my hearing (i'm a musician) and it's appears to be growing faster than normal.  I think it is the unknown aspect that scares me the most. Reading all of this helps me know what is going to happen. It sounds like flying to CA is the right thing to do.(I was hoping for Hawaii) I'm also a single Mom (with 2 great kids, of course) and am worried about how long I will be out of working order. Any and all thoughts, tips, experiences would be so helpful.

Thanks so much for sharing,
Mary
2cm x 1.5cm AN, Middle Fossa, Dr. Brackmann  05/24/05
Mild hearing loss, mild facial weakness, no balance issues

"well behaved women seldom make history"

kristin

  • Full Member
  • ***
  • Posts: 172
Re: House Ear Institute
« Reply #19 on: April 26, 2005, 12:42:19 pm »
hi mary! where in montana are you?! since AN's only effect 1 in 100,000 a year, we might be the only 2 in montana this year!! i'm in kalispell and just got back from surgery w/ dr brackmann. i was referred by dr von doerston in msla and dr chamberlain in kalispell. i'm also a single mother and have gotten a lot of help from my family and my daughter...although i think she's getting sick of getting me stuff! anyway, i hope to chat w/ ya later. if you want you can email me at krisnsyd@cyberport.net

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

Mary 117

  • Full Member
  • ***
  • Posts: 100
Re: House Ear Institute
« Reply #20 on: April 26, 2005, 02:32:57 pm »
Kristen, We may not be the only AN people in Montana but I bet we are the only single Moms with AN in Montana. I'm over in Billings. You know, that flat part of the state. Maybe being out the the flatland means I won't tip over so much after surgery.

It was so good to read your previous letters about the surgery and post-op. I have lots of little questions and a few big ones. Did you like Dr. Brackmann? How long did your surgery take?  What was the one thing  that you didn't expect? What was the one thing you need the most during your time in LA?  I'm just waiting to hear about scheduling the surgery. My email is mebcello@juno.com

Right now I'm just so tired. No hiking for a while. Not sure how long after surgery before I'll be able to go. Need to train the dogs to walk themselves.

Thanks again for the listening,
Mary
2cm x 1.5cm AN, Middle Fossa, Dr. Brackmann  05/24/05
Mild hearing loss, mild facial weakness, no balance issues

"well behaved women seldom make history"

DetSgt224

  • New Member
  • *
  • Posts: 19
Re: House Ear Institute
« Reply #21 on: May 04, 2005, 07:58:11 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

Hi Kristin....
I was reading through the posts and my eyes opened wide when I saw you are from Montana.  I live in Missoula and was recently diagnosed with an AN.  I was referred to Dr. Von Doersten at Rocky Mountain Ear Nose and Throat and am told he's the "go to guy" for AN Surgery in Montana.  My surgery is scheduled for June 6.  I am 40 years old and my tumor is 3cm.  I have almost no hearing in my left ear though have experienced no facial paralysis or balance problems.  The Doc wants to do a translab approach since preserving my hearing is not an option.  I'm curious as to where you're from and who did your diagnosis.  Since it's May I'm assuming that you've had your procedure.  I pray that it went well.  Anxious to hear from you.

Travis (DetSgt224)

kristin

  • Full Member
  • ***
  • Posts: 172
Re: House Ear Institute
« Reply #22 on: May 09, 2005, 03:14:47 pm »
hi travis! i was referred to dr von doersten from my local neurosurgeon in kalispell (dr hollis). i was a little wary however when i called the clinic and found that he only does about 4-10 AN's a year. after doing a lot of research online i decided to call him anyway just to get some sort of proffessional opinion. he was very nice and really easy to talk to. he admitted to me that although he does the translab and suboccipital approaches, he is not familiar w/ the middle fossa approach and thus referred me to dr brackmann at House.

i did have my surgery on april 14th and all is well. no facial paralysis or hearing loss (my AN ear hearing was actually better than my non-AN side before surgery). i started driving in town last thursday (3 weeks postop) and now am driving on the highway w/out any problems.

i would recommed calling dr brackmann at HEI just for a second opinion. he actually knows dr von doersten in person, so you might be able to get his opinion on what he thinks on you seeing him for surgery. i wish you the best and feel free to email me if you'd like at krisnsyd@cyberport.net if you have any more questions, ok?
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

Karissa

  • New Member
  • *
  • Posts: 18
Re: House Ear Institute
« Reply #23 on: May 09, 2005, 03:17:27 pm »
Kristin-
 Hey girl....good to see that you are doing so well!! 

Karissa

David Wrubel

  • New Member
  • *
  • Posts: 31
5+ cm AN removed at House 4/2000...5 years later still all good news:
« Reply #24 on: May 10, 2005, 04:08:46 pm »
Since many of you reading this are really scared, looking for information, and trying to make the best decision, let me start with the bottom line, for me:

If I had $5 million or so 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.
[/color]

Now, my particulars. 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 (it doesn't, one of the dozens of weird, counterintuitive things about this condition), 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, about 4.5 cm. 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. My head would explode, sort of. Thus began my quest for the best possible surgical outcome, starting locally, expanding to Yale nearby, Mass. General in Boston, Sloane Kettering and Mt. Sinai in NYC, and House in Los Angeles. 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.

This was what I had been looking for. From that point on, I never doubted that they'd do the best job possible for me.

Getting there, however, was not easy. Over the next two months, I submitted three formal appeals to my insurance company to allow me to go out of network to House. They were rejected, this after extensive medical research and documented statistics. 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 (or my attorney, cc'd on everyting) got his attention and I got my approval.

The good new was that I had only 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.

Because the tumor was so large (turned out to be over 5 cm.) 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 be repacked and reclosed, which Hitselberger thought from the outset might have to be done. He did it the next morning, and a few days later I was released.

Here's something you'll like to hear: There was very little pain, at least relative to what I expected. The nurses were fabulous, follow up care was amazing, and single rooms the norm. The food was decent, but I recommend the first floor cafeteria or some local restaurants for take out. Ask the doctors.

When I left Calfornia, Rick Friedman told me 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 there suspected anything unusual about me was just what the patient ordered!

It's now a little over 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, a seemingly endles walk down Venice  beach, certain things we bought in LA, and my wheelchair ride through LAX.

What are my deficits? 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.

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 others 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. The 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.
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.

Lisa Peele

  • Jr. Member
  • **
  • Posts: 57
Re: House Ear Institute
« Reply #25 on: May 13, 2005, 03:40:45 pm »
Contact information for House (taken directly from their website, www.houseearclinic.com)


COMPLIMENTARY ACOUSTIC NEUROMA CONSULTATIONS

 
If you, a family member, or someone you know has been diagnosed with an acoustic neuroma, you may consult with a doctor from the House Ear Clinic team. We will be happy to review the MRI scans and audiogram and speak with you by telephone (we must have a copy of the actual MRI film, reports are not sufficient by themselves).

Send the MRI scans by express delivery to:

House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057

You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or FAX a House Ear Clinic physician at:

Telephone: (213) 483-9930
FAX: (213) 484-5900

 
Lisa Peele, 38
Dublin, OH
4.3 cm X 3.3 cm (right)
Translab.
House Ear Clinic (Friedman and Hitselberger)
June 14, 2004

S@@@ndy

  • Newbie
  • *
  • Posts: 1
Re: House Ear Institute
« Reply #26 on: June 14, 2005, 03:59:04 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

cesar

  • Newbie
  • *
  • Posts: 1
Re: House Ear Institute
« Reply #27 on: July 06, 2005, 02:23:59 pm »
Hello everyone,

   My father was recently diagnosed with a 1.5 cm acoustic neuroma on his left ear. We live in Mexico and the physician here recomended the HEI. My father is determined to go there and have surgery done. By what I have been reading in this forum, it sounds like a very good option. I have some concerns though.... I would like to read about other centers just to have something to compare with and not feel like we did not look around for the best option. They told us there is a dr from Costa Rica at the HEI that works with Dr. Hitselberger. Everyone mentions Dr. Hitselberger, but I haven't heard a comment of this doctor from costa rica. Any comments on him?

   I have another concern, since we have to fly to LA for the consult and the surgery, I am interested in knowing how long the recovery is and what to expect in the near future. Knowing my dad, he will want to be working ASAP and back here in Mexico.}

Thanks

Cesar

Karissa

  • New Member
  • *
  • Posts: 18
Re: House Ear Institute
« Reply #28 on: July 06, 2005, 04:31:00 pm »
I had my surgery with Dr Friedman and Dr Hitselberger-I traveled from Oklahoma to California, because the physicians here didn't have as much experience with these type of tumors and they weren't very optimistic about being able to save my hearing and facial nerve. I had a small tumor and the House doctors were able to save my hearing and facial nerve!!
I believe the doctor from Costa Rica is Antonio De la Cruz, M.D.

We stayed in California for 2 weeks, probably could have left after 11 or 12 days, but we didn't want to pay to change our tickets.  I went back to work after 6 weeks.

kristin

  • Full Member
  • ***
  • Posts: 172
Re: House Ear Institute
« Reply #29 on: July 06, 2005, 08:40:01 pm »
hiya karissa! how are you girl? things are going good here in montana..nice 80 degree weather and all. feeling great and have been back to work for 6 weeks now. crazy how fast that went. i was off for six weeks post-surgery and now i've been working for just as long..nuts! life is good and i have about a whole inch of hair covering my incision!

later,
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

 


anything
anything