Skull Base Institute ???? Help! NF2 TESTING FOR CHILDREN

[barry Jones]

I am having some problems getting a straight answer about the techniqe used at the skull base institute in LA. It certainly seems to be the least evasive. My friend has nf2 and they have located two tumors in the ears (Actually one in each ear) He is healthy, no loss of hearing --Some ringing in the ear--But that is about all. In comparison to the alternative methods offered by other specialists the Skull base Institute seems the only way to go. I did call them and the doctor who performed the surgery said he would be glad to give me as many references as I wanted and said that jealousy had occured in the ranks of his field to cause the negative feedback that I had been hearing.
I hope some one can steer me straight--My friend is from New Zealand and is coming out next month to plan an attack of treatment. Also he wants to get his kids teste  for NF2--Does anybody know the cost and locations
Best Wishes Barry Jones
760-635-7785

[russ]

Hi
  A "straight answer about the technique"?   =s DON'T!! It is at best experimental and frought with the potential to bleed out if an artery is nicked. Shahinian went through some 'shinanigans' to become dept. head and I'm not sure if they're done paying for law suits for Tx failures and complications.
  The procedure has not been accepted by other major treating facilities. That says something!! Even the best, House Ear Institute, refuse to acknowledge it and you're talking eventually 2 risks?. Only about a 1000 totally endoscopic resections have been performed.
  Best bet with NF-2, go to HEI in LA ( Brackman, Friedman et al ), MGH ( Mia MacCallum ). Remotely consider FSR at John Hopkins radiosurgery ( Rigamonti et al)
  Russ  NF-2

[wanderer]

I saw 3 top level neurotologists and all three felt that the endoscopic approach was much to dangerous but that if I were wanting it that the best place in the world to try it is in Korea.

Bleed out is a major concern.   All the doctors said they could do it and do similar things on cadavers but that it was a totally different thing when dealing with live people.   The all stated there would be no way to open the skull fast enough if an artery was nicked.

[sonshine]

Hi,

I'm sorry but some of the above information is not correct and I should have a good idea as I have personally had surgery done by Dr.Shahinian.  Before you give out information you need to get the facts right.

Dr. Shahinian has done over 2000 surgeries.

Also there are several doctors in the U.S. that also do the same less-invasive approach as Dr. Shahinian.  He also has trained doctors on this type of surgery.

I personally have had it done twice.  Once to remove my tumor, another because I had complications from scar tissue from my tumor surgery.

This was my personal choice.  I feel it should be left up to each individual how they prefer to deal with their tumor, whether surgery, radiosurgery, gamma knife, radiation, whatever.

But please don't be saying things without having the facts. 

Thanks,

Sonshine