SKULL BASE INSTITUTE

[Patti UT]

HI There,
  I'm looking for anyone having treatment for an AN at the Skull Base Institute in LA.  And anyone having treatment for a recurring tumor as I was just diagnosed with regrowth, had mid fossa on 2cm 5 years ago, now have 10 mm doc wants to do translab. Looking at all my options.  Look forward to hearing your experiences with SBI

thanks
patti UT

[anissa]

Patti, it was great to talk to you, I'm sorry this is happening.  I hope you find answers regarding SBI and what to do about regrowth.  ((hugs))

[andrea in slc]

Hugs from here too, Patti. I can't believe this is happening! Hope you get some good info soon!! Call me if you need to chat, okay?

[Patti UT]

Thanks Andrea & Anissa,  good to talk to you too.

thanks Donnalynn for the PM about SBI,  interesting info.

[sharonov]

Hi Patti,
I started a thread on SBI about a week and a half ago under Microsurgical Options.  I spoke with "Boomer" on the phone and read her report here.  Ixta is another and there are a few more.  I am also considering them, though I'm over 65 and they don't take Medicare.  Everyone who's tried them has had a good experience, but it's a small sample.
Sharon

[Patti UT]

AFTER A FEW DAYS OF RESEARCH, I AM NOT COMFORTABLE AT ALL WITH WHAT I AM FINDING ABOUT SBI, I WOULD CAUTION ANYONE CONSIDERING THEM TO LOOK REALLY HARD INTO IT.  OF COURSE THE CONCEPT IS VERY INVITING,  A LESS INVASIVE PROCEDURE, WHO WOULDN'T WANT THAT.  BUT THE SAFEST WAY IS THE BEST WAY.

HEI will be reviewing my MRI and my original doc who is also an excellent AN surgeon, having studied and been partners with Dr House sr. will be more comfortable considerations. As well as looking into gk.

It's never easy, but I have to say, it's not as hard as the first diagnosis, at least the news didn't take me to the floor

Patti ut

[sharonov]

Patti, where did you find the negative info?  I looked and looked and couldn't find any.
Sharon

[mellowrama]

Hi Patti UT,

I'm also considering SBI and would appreciate any insight...thanks, melinda

[Patti UT]

You will need to spend lots of time searching the web, but in short there are malpractice suits pending www.healthgraes.com,  no details lsited jsut that there a suits. Many docs in the fiield and area have questioned/challenged  his experience, (article on a case filed against him @  thefreelibrary.com) he is after all a facial reconstructive plastic surgeon, not a neuro surgeon.  One of the sites I read he is a "self Proclaimed" neuro surgeon. (kind of bothersme)  Also, I received a PM offering another patients findings in their research, more bad marks from other docs that patient checked with in the field.  Now of course I had to ask myself, are the other docs against this guy because he has a "cutting edge" technology and is "competition" to them?  Or do they have valid concerns.  So I contacted several other places around the country doing Endoscopic Skull Based surgeries for tumors, and using this technique is not at all common for AN's, very popular for other types of tumors, esp pituitary tumors and some meningenomas, but rarely AN's.  There is a Dr Coimbra in Dallas TX doing endoscopic AN' removal who IS a neurosurgeon, I am looking into, but again, only small #'s of cases done for AN's
  I think the question here is what one is comfortable with.  How many AN's has SBI or any doctor for that mater actually treated this way, I have not been able to get SBI to give me a #. And with what kind of success rate.  IF this is indeed the cutting edge technology that will ultimately be a better way to remove these buggars, then why are there not more docs learning this technology? Maybe it's jsut oo new???   One thing we all have on our sides with a slow growing tumor, is time, and with time comes better technology.  SO while I'm not discounting this entirely,  I just didn't get warm fuzzies about SBI

Patti
 

[Jim Scott]

Patti ~

I just wanted to thank you for the voluminous research you've conducted and that you've chosen to share with our members.  Although the negative information regarding SBI is dismaying, it is valuable to have for those considering this procedure at that institute.  At the time of my diagnoses (2006) endoscopic surgery to remove acoustic neuromas was in it's infancy.  My neurosurgeon knew nothing about it and thought it was somewhat impracticable but, to his credit, asked me to give him whatever information I could find on it, which I did.  He was definitely intrigued and asked his colleagues about it but he reported back to me that none of the neurosurgeons he spoke to knew anything about it.  No one opposed it, they just pleaded ignorance of the procedure. That lack of information affirmed my decision to forget endoscopic surgery and go with good, old fashioned retrosigmoid microsurgery.  I've never regretted that decision. 

Like some others on this thread, I believe that endoscopic surgery for AN removals may well be the Next Big Thing.  That's fine with me as I want every AN patient to have a successful and less-stressful surgery with more good outcomes.  However, when its going to be you on the operating table, one tends to be a bit less enthusiastic about trying 'new' procedures.   

I wish you success with your continuing research and a treatment/surgery decision you'll feel confident with.  I'm grateful for the information you've contributed here.

Jim

[saralynn143]

There has also been some scuttlebug about SBI over on the HFS list. From what I remember there were some problems with exorbitant  charges for telephone consults. When I have some time I'll look back and report my findings.

Sara

[sharonov]

Dr. Friedman at House asked if I had been charged $700 to have Dr. Shahinian read my films.  Actually he didn't ask for my films, just my audiology report and the radiologists report on my MRI.  He talked with me at length on the phone and didn't charge anything.  He said he'd talk with me again if I'd like.

This is a guy that people seem to either like or hate.  Boomer, Ixta, and three others had him and loved him.  Ixta had quite a large tumor; he kept a blog which I read and was impressed.  He didn't want to go to SBI at first but did and is very happy he did.  I think it was Allegro17 (Eve?) who used SBI for a tumor that had regrown and was very difficult; Shahinian did it and did a wonderful job.  I checked on one of the websites (even paid my $12.50) and didn't find any sanctions.  So far the people who hate him all seem to be other doctors.

So, who knows?  Now that my TN has abated I can be more sanguine.
Sharon

[leapyrtwins]

Sharon -

although everyone looks for different things in a doctor, the most important factors for finding one to treat your AN are qualifications and experience.  IMO confidence in, and comfort level with, the doctor(s) who treat you are important factors also. 

So, if Dr. Shaninian has no sanctions, is qualified and experienced, plus you have confidence in, and are comfortable with, him you're almost there.

IMO you should now focus on whether or not you think endoscopic is the way to go.

As many of us have said, endoscopic is more the surgical exception these days, rather than the norm, but that's because it's not widely practiced  - yet.

AN treatment is a very personal decision and I'm confident you'll decide what is best for you. 

Jan

[sher]

Patti,
I was so sorry to hear of your regrowth... DANG!!! What did you find out? I am sorry it has taken me so long to reply. Please know that I am thinking of you and prayers are coming your way!!!

Sher

[Patti UT]

Thanks all, for your input.     
 Jim....I agree with you about Endoscope being the way of the furture for AN removal...Jut wish it was better perfected now.
I guess the most concerning to me about SBI is that the doc is not a neuro or ENT surgeon. And the fact I  have not found other docs around the country doing this in any numbers to be perfected.  Most docs doing skull based endoscopic procedures are not doing  AN's.   I asked how many AN's SBI's doc has done, after several attempts to get this info, I was given a number or over 1000.  The institution has only been around I think since 2004.  Thart would be 4+ AN removal surgeries a week.  Considering how many other treatments and locations to have treatments there are, and with 1 in 100,000 perple getting AN's, this number seemed pretty high. I too read about exorbitant charges, even for the phone consult.  I inquired about them and was told my inusrance would be billed, what they did not pay, I would be billed.  Also, they are out of network, and SBI will tell you up front they are not contracted with AANY insurance company sou would be out of network for ANY HMO's /PPO's .So doubt my insurance would pay anything.

Sher, I want to chat with you, sent you a PM.  Researching GK,CK,Novalis FSR,  very confusing.  Just when I think I feel the right answer for treatment, I read somthing that changes my mind. In the 18 days I've known about the new tumor, i
ve gone back & forth between radiosurgery and micro surgery several times.  And this includes 7 days I went to visit family and was away from the computer.  This is going to drive me nuts

Maybe I can just wait it out until endoscope surgery has been around a while.

Phyl,  this thread is probably in the wrong place (sorry) if you want to move it under micro surgery options section

Patti UT