I was diagnosed as having A/N

[ziko_72]

Hi all,

My name is Boaz, and I was diagnosed about 10 days ago as having Acoustic Neuroma in the size of 2.8x3.0 cm (1.18x1.10 inches)
I'm 33 years old, and been told that due to my young age and the size of the tumor, Radiosurgery is not recommended for me.

When I asked the radiosurgen about FSR he told me he is very skeptic about it and he really discouraged me from doing it. He said we still don't know the long-term outcomes of it.

Here in Israel we have few surgens, and I also heard about the INI center in Hanover, Germany, and about the House Ear Clinic in LA.
Does anyone know how can I get statistics regarding those 2 centers? In the House Ear Clinic who is the doctor that will perform it? whats his experience?

Regarding FSR I heard about Doctor Gil Ledderman in NY, does anyone has some info about him?

My biggest fear is to have Facial nerve problems. 
And ofcourse long-term affects like brain cancer 

Any other ideas and suggestions are most welcome...

Thanks,
Boaz.

[ziko_72]

I just wanted to add that my hearing in that ear stands on 76%, and I have no other symptoms.

[Russ]

Hi Boaz
  HEI is probably the premeir treating facility for surgical removal of AN in the USA. Maybe email Dr Brackman with your story at this informational address hecinfo@hei.org and ask it be forwarded to him. Of course there are other very excellent surgeons there.
  I cannot in good conscious recommend Dr. Gilbert Lederman at SIUH for FSR Tx. Actually, considering your borderline tumor size of 3 cm. many other centers would not recommend FSR. Even our John Hopkins Hospital in Baltimore, MA. would not generally tackle 3 cm. tumors. Much, however, depends upon exact tumor location.
  Re: The German facility; I've heard of such but do not have contact info. They are surgically oriented if I understand correctly.
  If you opt for surgery in Israel, remember, the more experience, the better chance for a positive outcome with few to no surgical complications. A Dr. should have a record of removing at the minimum of a couple ANs per week, and, of the approach they intend to use.
  Best wishes to you!
  Russ

[Raydean]

I gathered the folLowing information off of the old ANA site.  Perhaps this will aid in your search.  Doing a Goggle search for Dr. M. Samii will yield additional information.       

Germany
International Neuroscience Institute, Hannover. For detailed info see http://www.ini-hannover.de/en/contact.htm which has detailed information about the Institute and how to contact them. Secretary Prof. Dr. M. Samii is Director of Neurosurgery and Radio Surgery (Gamma Knife).
ISRAEL


Belinson Hospital, Rabin Medical Center, Petach Tikwa, Israel. Dr. Nachman Einan, Deputy Head of Neurosurgery. Ph. 03-9376401/2/6

Hadassah University Medical Center. Prof. Felix Umansky (Chief of Surgery), may be contacted through their website http://www.hadassah.org.il/english, by phone at +972-2-6777091, or at his email umansky@hadassah.org.il,

Both  The House Ear Clinic and Dr Samii  are premier centers of excellence.
 The House and INI  (Dr Brackmann, Dr Samii) have treated  thousands of AN's.
Treatment of AN by persons with extensive experience is critical to your best chance for a successful outcome.  Especially important for those with larger tumors.

Best to all
Raydean

[RamAir]

  I cannot in good conscious recommend Dr. Gilbert Doctor at SIUH for FSR Tx. Actually, considering your borderline tumor size of 3 cm. many other centers would not recommend FSR. Even our John Hopkins Hospital in Baltimore, MA. would not generally tackle 3 cm. tumors.

Hey Russ...curious...what are you basing this on?  I'm not an expert, but having been treated by Dr. Lederman (not sure why you call him Dr. Gilbert Doctor),  I'm curious to know why you feel so negative about his treament.  Additionally, a 3cm tumor is not too large for FSR.  In all honesty,  recent trends have slowly increased what they believed was considered too large for FSR treatment. 

[Mark]

Just to clarify, I believe the doctor that Russ is referring to is not Dr. Gilbert , but Dr. Gil Lederman at Staten Island. He was an early promoter of the FSR process ( and it seemed himself). In researching treatment for my AN, I seemed to come across more bad outcomes posted by patients of his as opposed to the more academically proven centers such as Johns Hopkins, Pittsburgh and Stanford. Some posts that I read suggested this was due to his treating larger AN's that perhaps exceeded what was proven to be accepted. I certainly have no experience with him, but that was the sense of what I read. He is probably better known for treating George Harrision in his last days and shaming himself by asking him to autograph one of his guitars. He was removed as head of the radiosurgery department at SIUH last I heard and I have no idea what he is doing today.

[Mark]

For some reason the last name of the doctor at SIUH didn't show up in my previuos post, it is Lederman

[Mark]

Well, apparently this board won't let you post the guy's name, it keeps deleting it- strange

[ziko_72]

Happened to me too... When writing the name of the FSR guy from Cabrini, it replace it with the word "Doctor"

[Russ]

L-e-d-e-r-m-a-n.

[Russ]

  G-i-l L-e-d-e-r-m-a-n from SIUH does not report his treatment failures but always amazing outcomes some of which are just stoppage of growth for a time and soon dumps a pt. if a failure occurs.
I've learned this from emailing privately with other pts., doing web research and participating in the old ANA email support group.

  3 cm. is the maximum size most treating facilities utilizing Linear Accelerators will treat; To include John Hopkins Radiosurgery.
  Russ

[RamAir]

Thanks Russ...I was unaware of the "issues" following him during the past couple of years.  I will admit that he is socially odd, but, he is an absolute brilliant doctor.  I just hope his guitar episode does not put a stain on the LINAC option for people.  For me, at least, it worked flawlessly...no disabilities at all...five years post-op!   And, for people who were given no chance of surviving, LINAC/GK have extended their lives months/years.  Who are we to fault a Dr. for trying.  Especially if the patient is informed that the treament may or may not work, but could extend their time they have left.  In that case, I say keep up the good work Dr. Gil...

[Russ]

Hi Ramair
 Yes; I'm sure Mr. L has had several hundred positive outcomes and is brilliant in his field. I think the late Dr Williams of JHH may have been a bit ahead of Mr. L Some, as I, feel him a bit radical for Tx attempts on ANs larger than 3.0 cm. There have been some pretty bad outcomes not reported and also some deaths. He actually has fan clubs in Europe?? The "AN doctor".
  Seems Mr. L, however, may have become more of a liability than asset to the dept. at SIUH, having just settled a 5.4 million dollar lawsuit previous to the Gearge Harrison affair.
  Glad to read your Tx was a success!!
  Russ