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Skull Base Institute

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suzfarm:
Background:  I am a 46 year old who has had a diagnosed acoustic neuroma since 2001.  It has shown consistent growth over the last couple of years and I am looking to find as much information as possible as to how to proceed.

I am familiar with conventional surgical procedures and the potential for side effects, such as: partial facial paralysis, recurring headaches, CSF leakage, hydrocephalus and the long recovery period.  I am also aware, but less familiar with, the available radiation treatments for an acoustic neuroma.

I have been in touch with the Skull Based Institute in Los Angeles.  According to their literature, the lead doctor there has pioneered a minimally invasive procedure that reduces the risks and side effects of surgery and shortens the recovery period substantially.  I have been unable to find any other surgeons, hospitals or clinics that are familiar with or trained in his techniques.

I have questions, but would prefer that responders use these questions as a framework to provide me with any information they think I should have, prior to making a decision.

1.   Are the methods used by the Skull Based Institute known by surgical peers in the profession?

2.   Are the results known, and subject to any peer-review or commentary?

3.   Are there others pursuing similar techniques?  If so, who and where?

4.   If not, why not?  (It would seem if the technique is successful with less patient debilitation, others treating acoustic neuroma would be interested in learning of these practices and in communication with the source of the technique and tools.)

tony:
Radiation is an option depending on the size/location of the tumour
and yes many Hospitals offer the service in twp or three
formats.
I suggest you have a look at the AN patient archive - there are sure to be some
suggestions there
Best regards
Tony

jamie:
I had CyberKnife treatment, but was also interested in the endoscopic procedure at SBI, if for some small chance the CK didn't work, I would explore that option further....

1.   Are the methods used by the Skull Based Institute known by surgical peers in the profession?

It's endoscopic, many surgeries are done using that method although I believe it is new for skull base surgery in the US, I hear it is more common in S Korea.

2.   Are the results known, and subject to any peer-review or commentary?

I'd check with them about that....

3.   Are there others pursuing similar techniques?  If so, who and where?

Yes, Dr. Jho on the east coast..... http://drjho.com

4.   If not, why not?  (It would seem if the technique is successful with less patient debilitation, others treating acoustic neuroma would be interested in learning of these practices and in communication with the source of the technique and tools.)

Surgeons would require more, probably extensive training in the new procedure, financially they may not see the benefit, and hospitals stand to lose money in the fact that patients are discharged much quicker....I know many disagree with my jaded views that money is basis for such decisions and that's okay. :)

Other surgeons also say it is too dangerous because they may accidentally cut a vessel and not be able to repair it quick enough, although when I spoke with SBI about that they said that was incorrect and they've NEVER had a fatality....it's the least invasive treatment next to radiation and I think it's worth considering for sure, all patients I've heard from who had that procedure seemed very happy.

russ:
 Hello;

  To my knowledge there is only one other facility, and it's in CA as well, which performs the experimental minimally invasive procedure. Seems somewhat over 1000 have been performed is all.
  Of course they would report glowing successes and some they have had, but those are not even a fraction of the number of successes for traditional surgical methods or irradiation types combined.
  Posted on the old ANA online email support group was that Skull Base and procedure as 'pioneered' by Dr. Shaninian was visited by House Ear Institute and rejected as potentially dangerous because of the limited field of vision provided by the endoscope. Also, if an artery were nicked, the endoscopic view would be blurred and there may not be ample time to open the pt. to repair the bleeding.
  Dr Shahinian was not a neurosurgeon upon the program's conception and actually sued a licensed neurosurgeon to become Dept. Head.
  Personally; I don't care for Shaninian's shinanigans or the method, which for many, requires the same amount of recovery time as for tried and tested surgical procedures.
  Notice: The procedure has not caught on?
  Best wishes for your best choice. If you're going to CA or are there and want surgery, you may as well go to HEI with a reputation of many years.
  San Diego Gamma Knife center is good for GK surgery.
  It has been said by the GK specialist I see that the other irradiation types as CK, FSR, ST, Proton Beam, etc. are not better but designed to capture a market share. I had thought so before asking. Some might argue the point.

  Russ

nannettesea:
In general mainstream surgeons are not positive about this place.  Shahinian claims they are "jealous."  I've heard some good testimonials from his patients, but he supposedly had 2 fatalities and was kicked off as head neuro-surgeon at Cedars.  If he is a great doc and cares about people as much as money, why hasn't he spearheaded the technology/research, i.e. shared with other professionals?  That is an answer I don't know.

All the research on this technique stem from him...and I was told only one other person in the world, in Italy, performs the technique.

I was scared off, but maybe should have given him more consideration.  If you have a "difficult/large" tumor, don't know if I would choose him.

My opinion.
Nan

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