ANA Discussion Forum
Archive => Archives => Topic started by: Kate B on February 23, 2005, 07:05:21 pm
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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
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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
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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
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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 wayâ€â€but most of my interaction is “behind the scenesâ€?.  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...
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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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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
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I wish I could have gone to the House for mid fossa.ÂÂ
Becky
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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.
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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
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Has anyone had surgery performed by Drs. Luxford or Schwartz at House?
Thanks, Mike
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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
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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.ÂÂ
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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)
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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?
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Kristin-
Hey girl....good to see that you are doing so well!!
Karissa
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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.
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Contact information for House (taken directly from their website, www.houseearclinic.com (http://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
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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
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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
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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.
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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
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Hey girl...I was thinking about you the other day!! How is your hearing?? How is everything else...you sound like you are doing good!!
Keep in touch
Karissa Shields
karissashields@cox.net
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Hi,
I was recently diagnosed with AN and am trying to decide what to do about it. My doctor here in Cleveland Ohio said I should wait 6 months and have another MRI. I just heard from the House Ear Institute and they said that because my tumor is still very small and I still have fairly good hearing now is the time to have the surgery. I'm very interested in hearing from those who went to the House Institute and how they came to the decision to use HEI. This is not an easy decision to make.
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hello! i had a very small AN too (8 mm x 5 mm) and what the doc told you was what he told me. he (dr. brackmann) said that there is a chance of losing my hearing overnight because the tumor could cut off the blood supply to the acoustic nerve? or something like that. anyway, i didn't have any hearing loss prior to surgery and dr brackmann said that he was fairly certain if i had the surgery now rather than later i would be able to come out of surgery with no hearing loss and no facial paralysis. and guess what?!?! HE WAS RIGHT! yeah!! i was all about waiting until the end of the summer and he was even a little weary about that...i figured the guy is SUPER SMART and what do i know about acoustic neuromas? he does about 3-4 a week i bet.
deciding what type of treatment to have and where to go is a difficult decision...i'm 100% happy that i chose to go to House for my surgery. they are the best of the best (or..creme de la creme to quote my referring ENT)...can't get any better than that, right?
kristin
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Ditto what Kristin just said....expect I had my 4-5mm acoustic neuroma removed by the wonderful Dr. Rick Friedman and Dr. William Hitselberger from the House Ear Clinic in LA. I traveled there from Oklahoma city, OK. They were also able to save my hearing and facial nerve!!! Feel free to e-mail me if you have any more questions- karissashields@cox.net
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My name is Ludmila from SW Florida. I had a translab surgery for 1,8 cm tumor at the House Ear Clinic on July 28,2005. My doctors were Dr. William Slattery and William Hitselberger (I couldn't ask for a better doctors). I have no facial nerve demage ( my facial nerve was adherent to the tumor too). I can thank the excellent doctors for that. I lost my hearing in the left ear. Recently i developed a metallic taste in my mouth and have a dry eye. This is a small price to pay for removing my tumor.
Today, August 29th, one month after my surgery, i went back to work!
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if anyone is interested in information that dr. brackmann emailed to me regarding middle fossa please send me an email at krisnsyd@cyberport.net (it's a long email...so beware! :) )
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Hi Everyone, I had surgery at HEI on July 26, 2005 and just posted my story on the general discusson board. I have to agree with everyone, House is the place to go! One point that most people did not mention is that Acoustic Neuroma patients have their own ICU unit, that means that all the nurses are prepared for whatever might happen. Also, that St. Vincent's Hospital's sixth floor is reserved for only Acoustic Neuroma patients. To me that was pretty special! Again, this is just my opinion, you must feel comfortable with your decision and surgeron which ever type of procedure you chose. God Bless, Ann
HEI
July 26, 2005
Dr. Brackmann & Dr. Hitselberger
4mm x 8mm left AN
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I have a small (moving toward medium) AN and through research also found the House Clinic (I live in Atlanta). I am scheduled for surgery December 7th with the good Dr. House himself... Has anyone had Dr. House for the surgery? I have seen a lot of recommendations for Brackmann or Friedman (even Slattery), but none for Dr. House... Can anyone give me a view?
The Neurological Surgeon is now Dr. Schwartz - anyone had experience with him?
I've only lost only 5-6% of my hearing which is approximately 30 decibals, and am weighing my options between Translab and Middle Fossa. I'm terrified of facial nerve damage and would be interested in your perspective on going the Middle Fossa route. I own a professional consulting business and facilitate many meetings/sessions. Hearing AND appearance are critical, therefore I have a dilema.
I know I'm at the right place (and thankful that decision has been made), but deciding on which approach is keeping me up at night.. any help woud be appreciated. :-\
Thanks in advance!
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Hi Distressed,
That's a tough problem you have! But, if there's a bright side, you do have more than one option. My tumor, at 3cm, falls outside the middle fossa boundary, so I'm in for translab on 11/7. However, I've already lost nearly 100% of the hearing on my right side, and most likely all of the balance function as well.
I did a ton of research, and found a great piece on Middle Fossa outcomes done at (where else?) House! You can look at it here: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=97448831&dopt=Citation.
The translab guarantees you'll lose both hearing and balance function. Middle Fossa, while apparently not used as much, gives pretty good results. So, unless their are side affects from Middle Fossa that I don't know about, that sounds like a pretty good option, given the fact that you're hearing loss is relatively minor.
Also, I am wondering if you've looked into radiosurgery? House is undoubtedly the best surgery center in the world, but they tend to steer people away from radiosurgery. If you haven't investigated Cybernknife or Gamma Knife, you may want to. You will find arguments for and against both micro and radiosurgery, but there are a tremendous number of success stories for each treatment type. Your tumor size ought to make you a pretty ideal candidate for radiosurgery, which will lessen your recovery time and perhaps provide you with an even better outcome, hearing, facial nerve, and balance-wise.
Please don't take this as a personal endorsement for radiosurgery - remember, I'm going the microsurgery route myself. I just know that, for me, it was empowering to have researched every treatment method thoroughly. That way, I was able to make the best decision for me. I can only suggest and hope that you check out the radiosurgery option. (Plus, I'm sure there are radiosurgery centers much closer to Atlanta than LA, if that makes a difference!)
Sorry for rambling. I hope that everything goes as smoothly as possible for you, both pre- and post treatment. Please keep us posted!
Josh
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Thanks Josh and best of luck - I will say a special prayer for you on November 7th!
Radiosurgery had been explained to me by a Doc in Atlanta - but he wasn't a fan of it. Dr. House didn't even mention it as an option...not sure why...
As I understand the middle fossa approach, there is only a 50-60% chance of saving the hearing and increased liklihood of facial nerve damage. The Doc is recommending I go the Translab approach to avoid facial nerve damage, but guaranteed loss of hearing. Therefore the dilemma. All comments and suggestions would be greatly appreciated...
Again thanks!
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Hello again,
I think you're running into a situation many have faced: doctors will ALWAYS recommend treatment via their experience and skill level. Even my own father, who is a general surgeon, pushed surgery in our discussions.
To be blunt, I think you're being pushed too hard toward surgery. Again, I'm not saying radiosurgery is THE answer for you - but I really think you should talk to a specialist in that field, not a surgeon. House doesn't do radiosurgery, so they won't talk about it. Most neurosurgeons will advise microsurgery. No fault, it's just that's all they know.
Probably the best academic site is the University of Pittsburgh's page: http://www.acousticneuroma.neurosurgery.pitt.edu/
I live in Las Vegas, and have been to specialists in both radio and microsurgery. My ENT, a doctor I trust completely (besides helping me, he also operated on my two-year old daughter - I mean it when I say I trust him!), studied under one of Pitt's docs, and says he's one of the best. I believe him, but Pittsburgh not an option for me.
Check out that sight, and look at the 'Information on Physicians' section here. Please, find out more about radiosurgery - I don't think it's necessary that you lose your hearing and balance when both are still mostly intact.
If I can help find some more info for you, I'd be happy to. Keep us posted!
Josh
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Thanks again...now you really have me thinking!
The reason my original Doc rulled out gammaknife was due to the cancer factor in my family and the unknown aspects of radiation (still to early to know long-term effects). He also said that many hospitals and clinics made significant investments in the equipment and will recommend it as a treatment to justify the investment...at least that was his view.
I did look at the site you recommended..do you have any other thoughts on this? I'm wondering if I should do another opinion here in Atlanta before going through with the surgery??
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Hey Distressed,ÂÂ
(We have to get you less stressed, so you can pick a new screen name! ;D)
I'm glad I have you thinking! And yes, I would absolutely get some more opinions. Remember, it's your health, so even if you step on the toes of Dr. House, it doesn't really matter. Making the best and most informed decision does.
Your situation has really bothered me - not that I think surgery is a bad option, but that you've been pushed awfully hard toward one treatment option. (And, upon further reflection, I really disagree with the Translab approach - it just sounds like you'll sacrifice too much, and facial nerve preservation isn't a guarantee even with Translab.) And, because I took a day off from work, I've been able to do a little research. So, here goes:
Atlanta does have two Gamma Knife centers, at Piedmont and St. Joseph's. Wellstar Kennestone hospital has applied to get a Cyberknife, but is meeting some resistance from Piedmont. (Google 'Atlanta cyberknife' and you can read the article) Piedmont also has a Trilogy machine, which is similar to a Cyberknife. (And, oddly enough, has a live webcast at their website today at 5pm!)
The biggest differences between Gamma and Cyberknife are: 1) Gamma Knife uses Gamma radiation, Cyberknife and Trilogy use x-ray radiation and 2) Gamma Knife is done in one-shot (and requires a frame be bolted to your head to maintain perfect stillness), while Cyberknife is done over (usually) 3 to 5 days.
In reading the posts here, and doing lots of research, it seems that Cyberknife has some advantages. The lower radiation doses seem to lead to less complications, and really, who want a metal frame bolted to their head? Plus, gamma radiation is much more powerful than x-ray. (I teach Physics and Astronomy, so I'm pretty much a big-time science geek. I try to make up for it by running triathlons.) If x-ray works fine, then gamma may be overkill.
To quote Mark, a long-time ANA member, the "House Ear Clinic" of cyberknife centers is at Stanford University. However, there are a number of other sites, which you can check out here: http://www.accuray.com/contact/site_locations.htm.
Oddly enough, I have some experience at three of these hospitals: my brother is a surgeon at Jefferson in Philly, a fellow Las Vegan AN patient had Cyberknife at Barrow Neurological Institue in Phoenix, and my wife was born at Overlook hospital in Summit, New Jersey. I've been to all three hospitals, and they're all great institutions.ÂÂ
I did notice that there are number of Cyberknife sites within a few hundred miles of Atlanta. It might be a good idea to contact one of them and ask some questions.
I hope this helps. Again, I don't want to advocate - I just want you to be able to make the best decision for you, and have the best outcome.
Good luck, and keep posting!
Josh
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The reason my original Doc rulled out gammaknife was due to the cancer factor in my family and the unknown aspects of radiation (still to early to know long-term effects).
Hi DistressedDB,
I fully agree with josh. You should definitely at least consult a provider of radiosurgery before making any decisions. Radiosurgery has been used for these tumors for 30 years, and there has been no increased incidence of cancer among those treated with radiosurgery, than for those treated with surgery. I think we'd all be hard pressed to find somebody without a family history of some kind of cancer. Another thing many do not take into account are the snowballing advances in medicine, many medical proffesionals predict that in the not too distant future cancer will be nothing more than a relic. Think of it like this, the actual chances of radiation induced cancer is given as about 1 in 20,000. The chances of mortality from surgery are given as about 1 in 100. So even if you beat the incredible odds and developed cancer in 20 years from radiosurgery, there's a very good chance they will be able to cure it.
I chose CyberKnife radiosurgery because my tumor was only 2.3 cm, and I have no nerve symptoms whatsoever. My only symptom was earache, now almost a month and a half after my procedure, the earaches are still gone, and I feel better than I have in a long time, even before my earaches started. I went to Barrow Neurological Institute here in Phoenix. If you have good hearing and nerve function, you should definetly consult a radiosurgeon before jumping into surgery. It can't hurt and they can give you actual statistics and facts regarding your situation. There are neurosurgeons who perform both treatments, and would be a very unbiased source of real information on both.
He also said that many hospitals and clinics made significant investments in the equipment and will recommend it as a treatment to justify the investment...at least that was his view.
The same can be said about neurosurgeons who only practice surgery, they invested alot in their schooling, and will recommend their treatment for the same reason. It's just the world we live in I guess. So the ultimate decision lies in your hands, don't let anybody pressure you into anything. You must be completely comfortable you made the right choice.
I urge you to consult a physician who practices both treatments for the most unbiased opinion.
Here's one contact you might try, Dr. Rosenberg is a neurosurgeon, and he also practices CyberKnife radiosurgery:
William S. Rosenberg, MD
Medical Director, Menorah Medical Center CyberKnife
Midwest Neurosurgery Associates
6420 Prospect Street, Suite T411
Kansas City, MO 64132
(816) 363-2500
wsr@post.harvard.edu
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I, too agree with Josh! I have a 2cm an and still have almost all of my hearing. I do have a lot of dizziness, balance problems and I think some vision problems. I had no clue before the MRI, didn't even have a clue as to why my otologist would order it. The an was a big shock as I imagine it is for most of us. I didn't even get it when they called and wanted to see me the very next day! The nurse left messages on both my home phone and my cell and , dumb me, still had no clue that there could be any thing. When my Dr. told me that she would use the translab approach in surgery and I would loose all hearing in that ear, I just thought NO WAY and asked what else could be done. ( What is that medical saying " above all, do no harm? That kept running through my mind. ) I knew right then that I would try to get zapped! Everything I have read since has only served to reinforce my desire to get zapped. I have had a terrible time with my insurance as they have no participating providers of stereotactic radiation. I just found out Monday ( after trying since the end of June ) that they have approved my visit (for consultation )with doctors at Johns Hopkins. I will be seeing both a radiation oncologist and a neurosurgeon on Friday. :)
Susi
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Thanks to everyone (especially Josh) for all your comments and suggestions, and for making me open my eyes to see a larger picture. I think HEI is excellent, and for those who don't have another option, they are the best. ;D
In light of all the information I have received, I am now exploring radiosurgery as an option. I will keep you posted as to the outcome.
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hello distressed..i was reading over all these posts and was just wondering how old you are? i was scheduled for gamma knife at Mayo Clinic in MN when i got a call from an ENT who had been forwarded a letter from my initial neurosurgeon appt. the ENT told me that the chances of hearing loss/facial nerve damage was about the same percent w/ the gamma as it was with the surgery, but the long-term effects of GK have yet to be known...and because i'm only 29 that i (hopefully) will live long enough to see what long term effects are. he personally recommended dr. brackmann as did another physician (a neurolaryngologist) a couple days later.
i had no hearing loss on my AN side prior to surgery. i had middle fossa surgery on April 14th of this year. 6 months on saturday!!! holy cow! i just realized that!! i couldn't be happier with my decision. i have NO (that's ZERO) hearing loss and NO (also ZERO) facial paralysis. i have talked with 4 or 5 people since my surgery that have had middle fossa at House and have had the same results.
i'm not sure why Dr. House has suggested translab unless he felt you were so terrified of the facial paralysis that middle fossa was out of the question. i think i was thinking more on the hearing loss aspect until right up to the day of surgery. Dr. Brackmann said right away that middle fossa was the technique for me. if you want, he sent me four or five different articles about middle fossa. email me at krisnsyd@cyberport.net if you'd like me to send them to you.
if i were you i would talk with dr house again and tell him that i would prefer to keep both my hearing and my facial functions and that the translab approach doesn't suit what i want. maybe ask him if he's not sure that he can perform the middle fossa and save both functions if he can recommend dr brackmann or dr freidman instead. although i'm sure dr house is capable. (i'm just a little biased..i loved dr brackmann and think he did a great job!)
anyway...i know this is a tough time. i was so relieved when i made the appt for the surgery and was at peace. i'm sure you'll feel the same way when you make your decision.
kristin
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i was scheduled for gamma knife at Mayo Clinic in MN when i got a call from an ENT who had been forwarded a letter from my initial neurosurgeon appt. the ENT told me that the chances of hearing loss/facial nerve damage was about the same percent w/ the gamma as it was with the surgery, but the long-term effects of GK have yet to be known...and because i'm only 29 that i (hopefully) will live long enough to see what long term effects are.
My ENT told me at 28 that I was too young to have to experience brain surgery, and that he felt I was making the right choice with CyberKnife. Funny how inconsistent the medical community can be sometimes, lol. But the "long-term effects" concern seems a bit hollow, in my opinion, as GK radiosurgery has been performed for over 30 years. I wonder what effects they are referring to? Future cancer? By 30 years we would very likely have seen an increase in cancer among radiosurgery patients by now if there was going to be one. The concern of future cancer is based on old XRT (x-ray therapy) statistics in which large volumes of healthy tissue were irradiated, which is not the case with radiosurgery. Without any real data to back up that concern, which should be widely available by now, it's just speculation. I personally find that "concern" to be very disingenuous, and a baseless tool to promote one treatment over another. Funny how a neurosurgeon will shrug off a 1-2% chance of death due to surgery, but will express great concern over a far lesser chance of future malignancy with radiosurgery, the only issue is really figuring out how much less, the legal paperwork you must sign before treatment gives the chances of 1:1,000 to 1:20,000, even though there have been very few cases of cancer in patients who had radiosurgery, and it's never possible to tell for sure if radiosurgery was the cause. Even with the "long-term effects" that are well known with standard radiaton therapy, in which large volumes of healthy tissue are irradiated, the chances of future cancer is only raised by 7% over the regular population. ÂÂ
As for the hearing/facial nerve preservation rates:
Comparison of Radiosurgical & Microsurgical Treatment for Acoustic Neuromas
Procedure     Cure Control  Death  Hearing Preservation  Facial Nerve Preservation
GK Radiosurgery  94%       0%       Some/Most         All
Microsurgery     98%       1.5%      Some            Most
There are several factors, which influence the outcome of surgery. The most important is tumor size. Preservation of useful hearing and facial movement following open surgery is greatly limited by tumor dimensions. For example, useful hearing in the most experienced hands is unlikely in tumors over 2 cm in diameter. Other considerations include a 10 % to 20 % rate of minor complications and 2 to 4 % risk of severe complications following open surgery. This can be avoided by radiosurgery. Patients can be returned to work the day following radiosurgery!
http://www.sd-neurosurgeon.com/practice/gamma_knife.html
Those stats are for gamma knife, newer forms of fractionated radiosurgery like CyberKnife are producing even better hearing preservation.
Surgery and radiosurgery are equally viable treatment options, I sincerely hope DistressedDB will explore both options equally, and not be stonewalled into the surgery option without consulting a radiosurgery specialist first. Kristin's tumor was smaller than DistressedDB's, so one couldn't apply her good surgical outcome to DistressedDB's situation.
Here's a quote from Dr. Chang, a top neurosurgeon at Stanford who also practices CyberKnife, from the CyberKnife support website in which he was answering a patients inquiry:
patient:
I have been diagnosed with AN that is 2.1 cm. Is my tumor size too large for Cyberknife surgery? What are possible side effects?
Dr. Chang:
This size is still within the size limits for radiosurgery, which typically go up to 3 cm in diameter. Furthermore, a 3 cm diameter tumor is almost 3 times the volume of a 2 cm acoustic neuroma (on average).
I personally think that tumors in the 2 to 3 cm range are best treated with radiosurgery and not surgery. Surgical risks are lowest for the small tumors, particularly those that are less than 1 cm in size, but these risks increase dramatically for tumors that are your size. The radiosurgical risks are not substantially different for a 1 cm and a 2.1 cm tumor.
As far as the risks of open surgery for a tumor this size, there is a 50 to 75% chance of hearing loss, and around a 25% chance of facial nerve injury. With radiosurgery, the chance of decreased hearing may be on the order of 30 to 40% with less than 5% of patients suffering complete hearing loss as long as they come into treatment with useful hearing. As far as facial nerve injury, the data from radiosurgery shows a 1% or less rate of injury.
So the bottom line is that for a tumor your size, the risks are much lower, in my opinion, with radiosurgery than with open surgery.
http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=404
 ÂÂ
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Thanks again for all your input...I believe more data is more informed! As for my age, I turn 48 in January...so I have a good 20 years on many of you. :o I can tell you I don't feel my age, though!
I think it's true we will all get many opinions from the medical community and they will vary. One thing I have learned, is to gather all the information you can, trust what you see, check it by others who have experienced the same situation, and then make the best informed decision you can for you...
My son was diagnosed with Crohn's disease when he was 10 - he was very ill. I learned a lot about the medical community and how to trust what I saw and heard. I ended up "firing" his GI and "hiring" a new GI in the same practice. It was difficult, and she did not take it well, but it was the Best decision I ever made! He's doing well at 18, thanks to his new Doc.
So again, thanks to everyone...I'm now exploring Radiosurgery options...my an is small enough and caught early enough that I still have a little time to respond. Will keep you all posted!
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Hey Distressed,
Good on you! Glad to see you exploring all your options, and even if radiosurgery doesn't end up being the right choice, you know you'll have made the best-informed decision you can.
It's funny (not 'ha ha', but peculiar), I'm the same way about docs as you are, and for the just about the same reason. My son was developmentally delayed, wasn't walking or talking by 18 months. We went through every test in the book, but at the same time pushed for physical therapy. That got him walking, which was great, but we still couldn't track down the cause. We were almost relieved when he had his first seizure - it gave us a name to his struggles. After that, we ended up 'firing' his pediatrician (who was one of those docs who was great if your kid was healthy, but terrible if your kid was sick. USELESS!), and going out of state for a better diagnosis.
That experience has forged how I deal with the medical community - and I have three doctors in my family! I never settle for a first opinion on large issues.
I'm glad to hear you exploring more options, despite what the surgeons told you. Good luck, and please keep us posted!
Josh
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Hi
Just a note: I have read that conversion ot maligancy for NF-2 irradiated ANs is 6%. I wish I had the link.
Russ
i was scheduled for gamma knife at Mayo Clinic in MN when i got a call from an ENT who had been forwarded a letter from my initial neurosurgeon appt. the ENT told me that the chances of hearing loss/facial nerve damage was about the same percent w/ the gamma as it was with the surgery, but the long-term effects of GK have yet to be known...and because i'm only 29 that i (hopefully) will live long enough to see what long term effects are.
My ENT told me at 28 that I was too young to have to experience brain surgery, and that he felt I was making the right choice with CyberKnife. Funny how inconsistent the medical community can be sometimes, lol. But the "long-term effects" concern seems a bit hollow, in my opinion, as GK radiosurgery has been performed for over 30 years. I wonder what effects they are referring to? Future cancer? By 30 years we would very likely have seen an increase in cancer among radiosurgery patients by now if there was going to be one. The concern of future cancer is based on old XRT (x-ray therapy) statistics in which large volumes of healthy tissue were irradiated, which is not the case with radiosurgery. Without any real data to back up that concern, which should be widely available by now, it's just speculation. I personally find that "concern" to be very disingenuous, and a baseless tool to promote one treatment over another. Funny how a neurosurgeon will shrug off a 1-2% chance of death due to surgery, but will express great concern over a far lesser chance of future malignancy with radiosurgery, the only issue is really figuring out how much less, the legal paperwork you must sign before treatment gives the chances of 1:1,000 to 1:20,000, even though there have been very few cases of cancer in patients who had radiosurgery, and it's never possible to tell for sure if radiosurgery was the cause. Even with the "long-term effects" that are well known with standard radiaton therapy, in which large volumes of healthy tissue are irradiated, the chances of future cancer is only raised by 7% over the regular population. ÂÂ
As for the hearing/facial nerve preservation rates:
Comparison of Radiosurgical & Microsurgical Treatment for Acoustic Neuromas
Procedure     Cure Control  Death  Hearing Preservation  Facial Nerve Preservation
GK Radiosurgery  94%       0%       Some/Most         All
Microsurgery     98%       1.5%      Some            Most
There are several factors, which influence the outcome of surgery. The most important is tumor size. Preservation of useful hearing and facial movement following open surgery is greatly limited by tumor dimensions. For example, useful hearing in the most experienced hands is unlikely in tumors over 2 cm in diameter. Other considerations include a 10 % to 20 % rate of minor complications and 2 to 4 % risk of severe complications following open surgery. This can be avoided by radiosurgery. Patients can be returned to work the day following radiosurgery!
http://www.sd-neurosurgeon.com/practice/gamma_knife.html
Those stats are for gamma knife, newer forms of fractionated radiosurgery like CyberKnife are producing even better hearing preservation.
Surgery and radiosurgery are equally viable treatment options, I sincerely hope DistressedDB will explore both options equally, and not be stonewalled into the surgery option without consulting a radiosurgery specialist first. Kristin's tumor was smaller than DistressedDB's, so one couldn't apply her good surgical outcome to DistressedDB's situation.
Here's a quote from Dr. Chang, a top neurosurgeon at Stanford who also practices CyberKnife, from the CyberKnife support website in which he was answering a patients inquiry:
patient:
I have been diagnosed with AN that is 2.1 cm. Is my tumor size too large for Cyberknife surgery? What are possible side effects?
Dr. Chang:
This size is still within the size limits for radiosurgery, which typically go up to 3 cm in diameter. Furthermore, a 3 cm diameter tumor is almost 3 times the volume of a 2 cm acoustic neuroma (on average).
I personally think that tumors in the 2 to 3 cm range are best treated with radiosurgery and not surgery. Surgical risks are lowest for the small tumors, particularly those that are less than 1 cm in size, but these risks increase dramatically for tumors that are your size. The radiosurgical risks are not substantially different for a 1 cm and a 2.1 cm tumor.
As far as the risks of open surgery for a tumor this size, there is a 50 to 75% chance of hearing loss, and around a 25% chance of facial nerve injury. With radiosurgery, the chance of decreased hearing may be on the order of 30 to 40% with less than 5% of patients suffering complete hearing loss as long as they come into treatment with useful hearing. As far as facial nerve injury, the data from radiosurgery shows a 1% or less rate of injury.
So the bottom line is that for a tumor your size, the risks are much lower, in my opinion, with radiosurgery than with open surgery.
http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=404
 ÂÂ
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Hi
Just a note: I have read that conversion ot maligancy for NF-2 irradiated ANs is 6%. I wish I had the link.
Russ
I can't find any data supporting that, but I'm not an expert on NF-2, I know you are an NF-2 patient and I'm sure you are more knowledgable on that subject. However, the total number of malignant intracranial schwannomas, radiated, post-surgery, or spontaneous, has not been high enough to support what your source states. There have been very few to date. I know with NF-1, they have a much higher chance of developing spontaneous malignant schwannomas (neurofibrosarcomas), but not intracranially. If you can remember where that info came from, I'd be interested to see it though. :)
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Here's some info I was able to find on total numbers of malignant intracranial schwannomas....
Malignant peripheral nerve sheath tumours (MPNST) are uncommon primary malignant tumours of peripheral nerves. Intracranial examples are rare with only 7 documented cases including the present report1-5 MPNSTs arising in distal extracranial branches of the trigeminal nerve are slightly more common6.7, but differ significantly in their presentation and accessibility to surgical resection which impacts on their prognosis. Of several reported examples of malignant schwannomas in the sinonasal region, the case of Fernandez et al.8 is the only malignant epithelioid schwannoma (MES). We present the case of a 42 year old male who developed a MES in cranial nerves V and VII.
Only 7 cases have been reported in the literature including the present case (Table 1).
The trigeminal nerve was involved in five cases (one of which also involved cranial nerves 3,4 and 6) and the facial and acoustic nerves in two cases each.
http://path.upmc.edu/divisions/neuropath/bpath/cases/case15/dx.html
Granted, this info is from 1997, and I will try and find a more recent number if it's available.
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Here is my own story about my experience with HEI.ÂÂ
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.ÂÂ
Kindest Regards,
Kate
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Hi Kate,
My story is very similar to yours. With a very good outcome also. Seton Hall has just raised their prices to $50.00 a day, which is still very reasonable for L.A. I was out there in July for my one year checkup. The doctors out there are very experienced at what they do. I would recommend them to anyone with an Acoustic Neuroma. Ann
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Although there are many great facilities throughout the country, this thread is meant to be a place for those who have had surgery at HEI to post so that when people are looking for others experiences at House, they can find them en masse.
If you have had surgery at House, please post your story here.
Kate
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Hello everyone,
my sister is scheduled to have a retrosigmoid surgery to remove her hemangioblastoma tumor (she does not actually have an AN but they thought that's what it was due to it's location, same as AN's location) by Dr. De la Cruz, Schwartz and Lekovic at HEI/St VIncent's next month. Dr De La Cruz is the Dr. we have been in contact with, and although i've heard great things about him, i couldn't find any posts by people who were operated by him. Can anyone please give us any reference of him as a surgeon? (i'm sure he is great, we are just scared!) Same for Dr. Lekovic, please.
thank you and God bless you all.
sincerely,
shamalec
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Hi, Shamalec,
I live on the East Coast and had surgery (translab) at House this past January. I found it to be an amazing place. All the personnel at the House Clinic and St. Vincent's Hospital were professional, compassionate, and extremely competent. I felt that I was in excellent hands during my stay out there and I would do it all again in a heartbeat. That being said, there are many fantastic AN surgeons/radiosurgeons in the country and abroad, and the important thing is to have confidence in your decision.
Dr. De La Cruz was not one of my doctors, but I know that he's extremely well-respected; I'm sure I've seen his name mentioned on this forum, so perhaps one of his patients will respond. As you probably know, you can read all of the doctors' Curricula Vitae on the House website. Dr. Schwartz was my neurosurgeon and I thought he was just wonderful; he spent lots of time answering questions prior to surgery (as did all of the doctors). Dr. Lekovic is, I believe, a new staff member. I check out the House website from time to time and noticed his name for the first time not too long ago. His C.V. is impressive -- I believe he came to House from Barrows, which is an excellent place.
Best wishes to your sister (and all your family) as she approaches her treatment date. I can understand that you're all nervous (this is brain surgery, after all!), but I certainly hope that you'll get a sense of calm as the time draws near. Rest assured that she'll be in excellent hands and will receive the best of care.
Catherine (JerseyGirl2)
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I thought I'd bump this old post up. I would like to hear more recent stories.
Thank you
Mindy
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This thread has been very helpful for me as well. Even though it's more than10-years old, I felt it deserved a bump.
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Just looked at this thread. That's a lot of useful information to know. Some people had 5+cm AN treated at House successfully. Middle Fossa had been used for 2cm AN size. Dr. Hiselberger did 6000+ surgeries on AN patients.