Author Topic: Information Doctors at House Ear Inst  (Read 2847 times)

bpham

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Information Doctors at House Ear Inst
« on: August 31, 2007, 12:27:57 pm »
My AN is 6x10mm.  Apparently it seems to bother me a lot, especially with my left face nerve (where the AN) is.

I have appt. to see Dr. Friedman at HEI next week.  I've heard that he and Dr. Brackmann are the best, but Dr. Brackmann probably has practiced longer.  However, is there any out there that Dr. Friedman worked on before?

Even though my ENT recommended both Dr Brackmann and Dr. Friedman, but apparently Dr. Friedman will see me instead.

Let me know your experience with Dr. Friedman and what kind of questions should I prepare to ask.

Thanks a million.
1cm AN on the left side.  Surgery was on Oct 2007 at HEI.  Currently having issue with it, may be a CFS leak.  Not feeling too well.

mhs

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Re: Information Doctors at House Ear Inst
« Reply #1 on: August 31, 2007, 02:52:38 pm »
I will be very interested in hearing about your appointment with Dr. Friedman as I have one the end of Oct. the afternoon after I do a 6-month follow-up MRI and hearing test there.  I liked his professionalism and knowledge on the phone consult after I sent HEI my initial MRI.  I have been researching GK which he does and middle fossa on www.pubmed.gov. in preparation for my visit.  If you google him, you will find the video of a presentation he did not long ago.  I am 62 years old and currently have other undiagnosed health problems so am leaning toward radiosurgery rather than microsurgery.  Good luck.
mhs
4mm x 5mm left-sided AN diagnosed 4/07; currently watch and waiting as per Dr. Friedman at HEI

bpham

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Re: Information Doctors at House Ear Inst
« Reply #2 on: August 31, 2007, 10:07:15 pm »
MHS,

I surely will.  BTW, I'm also researching on CK treatment.  What have you found out about CK that you can share?  Things such as success rates overall and preservation of facial nerves and balance. 

Thanks.
1cm AN on the left side.  Surgery was on Oct 2007 at HEI.  Currently having issue with it, may be a CFS leak.  Not feeling too well.

IAHeel

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Re: Information Doctors at House Ear Inst
« Reply #3 on: September 01, 2007, 08:28:45 am »
You could not be in a better place. Friedman did my wife's surgery in January of this year. He is a terrific surgeon. As you probably know, he works in tandem with a neurosurgeon. Schwartz was his partner on my wife's surgery. He is also terrific.

Friedman and Schwartz both do GK. As you have probably seen, there is a serious debate about the efficacy of microsurgery v. radiosurgery. Experts who favor both approaches will cite studies supporting their viewpoint.

We seriously considered radiosurgery before making our final decision. As Schwartz said to us, both are reasonable options. What you have to decide is whether you are the kind of person who wants the tumor out or is comfortable with testing for years to come in the case of radiosurgery. In the best hands and that is where you will be, both options have very high rates of success, but nothing is risk-free.

Many people on this site will describe HEI as pro-microsurgery. I would not disagree with that statement in general terms, but it is more nuanced than that. I would say that Friedman is probably more pro-microsurgery than Schwartz. But both base their views on scholarly literature, including HEI research.

Your tumor is small, so take your time, read all that you can and make an informed decision. You may want to consult an expert who is more pro-radiosurgery. We did that and felt it was a good use of our time. One caveat is that if it's already bothering your face, Friedman might say that you have a shorter time horizon for a decision.

One final thought: Most of the research focuses on hearing preservation and facial nerve risk. Both of those are extremely important. There is less attention paid to headaches and cognitive function. Make sure you read the posts on this site associated with those topics and go to Medline and look for studies that focus on those risks.

Good luck!

Fred
« Last Edit: September 01, 2007, 08:33:27 am by IAHeel »

bpham

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Re: Information Doctors at House Ear Inst
« Reply #4 on: September 01, 2007, 01:18:09 pm »
Fred,

Thank you so much for a well informed reply.  My concerns right now is of course the outcome of the treatment with the least side effects.  And like you said, my facial nerve seems to bother me now which reduces my qualify of life.   I'm sending my MRI information to Dr. Chang at Stanford for his opinion as well.


1.  What swayed you and your wife to go with the microsurgery approach?  My family and friends have felt that it is best to remove the tumor completely with the microsurgery.  I'm beginning to feel that way since like I said with the CK, I believe that I still have to put up with the facial twitches and headache for a while (even more so after CK since the tumor may swell for a while?).

2.  I've known 3 people, one is my manager who had surgery done by Dr. Brackmann 9 years ago and he said he is 99% normal (of course with some minor issues shortly after the surgery).  How is your wife now?

Thanks for taking the time to answer my questions.
1cm AN on the left side.  Surgery was on Oct 2007 at HEI.  Currently having issue with it, may be a CFS leak.  Not feeling too well.

mhs

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Re: Information Doctors at House Ear Inst
« Reply #5 on: September 01, 2007, 03:01:57 pm »
bpham
Go to www.pubmed.gov, key in "CyberKnife for acoustic neuromas at Stanford University" and it will take you to an abstract of their research.  Interesting.
mhs
4mm x 5mm left-sided AN diagnosed 4/07; currently watch and waiting as per Dr. Friedman at HEI

IAHeel

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Re: Information Doctors at House Ear Inst
« Reply #6 on: September 01, 2007, 03:46:26 pm »
bp,

In the final analysis, Susan wanted final resolution of the issue. Of course, there are instances of tumor regrowth after microsurgery, but it's quite rare.

We looked at the numbers for both options and, if your microsurgery is done at House, they are very, very close. So, it really did boil down to what Schwartz said is the key question.

Having said that, it took us a long time to make up our minds.

Susan had a 1.9 cm AN. She elected translab because her hearing was quite diminished already and the tumor was situated such that middle fossa would have been very tricky. So, she lost her hearing. She has a BAHA and it works quite well. She does have trouble in very noisy places, but overall it is quite good. The BAHA costs $4K, and our plan covered it because the screw was installed at the time of surgery.

Susan's face was perfect right after surgery. The next day, she had delayed facial palsy. Studies indicate that this (delayed palsy) happens 5-15% of the time. When it's delayed, the prognosis is quite good. As they say, the face you wake up with is the one you will have. Over the last 8 months, her face has returned to just about normal. She still has has a very slight draw around her mouth. But, it's quite good. Her face came back slowly, so she had to be patient. But, she knew it was going to come back.

Sometimes she still has a little bit of an issue with balance, but overall it's not bad at all.

She has had some headaches and that is why I suggested you ask about that. Cranio-sacral therapy has been a live saver for her.

Still, we lead an extremely hectic lifestyle and she is able to do whatever she wants. She sings the praises of the folks at House.

If you would like to speak with her, just send me a private message. She would be happy to talk with you.

Fred

Edu

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Re: Information Doctors at House Ear Inst
« Reply #7 on: February 26, 2008, 09:21:02 pm »
HI I AM 41 YEARS OLD AND I HAVE BEEN DIAGNOSE WITH A 27MM AN. I LIVE IN MEXICO AND I´M VERY INTERSTED IN HEARING ABOUT HOUSE EAR CLINIC AND WHICH DOCTOR DO YOU RECOMMEND.

 


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