House Ear Institute

[Karissa]

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

[Jeanlr]

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.

[kristin]

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

[Karissa]

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

[ludmila]

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!

[kristin]

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! )

[Desilu]

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

[DistressedDB]

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!

[JHager]

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

[DistressedDB]

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!

[JHager]

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

[DistressedDB]

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??

[JHager]

Hey Distressed, 

(We have to get you less stressed, so you can pick a new screen name!  )

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. 

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

[jamie]

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

[viejita]

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