SKULL BASE INSTITUTE

[MissMolly]

Hi Patti,
I did quite a bit of research on SBI as well.  Call me old fashioned, but I wanted a board certified neurosurgeon poking around inside my skull.  I've been happy with my results so far from Mass General.  Sorry that you have to go through all this again!!

Miss Molly

[Jim Scott]

Patti ~

As I stated in my previous post, while endoscopic surgery for AN removals may well be the standard of the future, not many people really want to be part of an 'experiment' that involves opening up your skull and excising a tumor.  I know I didn't.  The negative aspects associated with SBI - mostly insurance and experience issues - also make it a bit daunting as an option so I can understand your reluctance to jump into it at this point.  'Watch-and-Wait' may, indeed, be an option for you, assuming your AN co-operates and doesn't grow much in the next few years, as (hopefully) endoscopic surgery gains more acceptance with experience and SBI enters into affiliation with most major medical insurance companies.

I've taken your cue and moved this thread to the Microsurgical Options forum.

Jim

[Patti UT]

oops, sorry Jim,  been so long since I frequented this place, I forgot you were a grand poo bah too.  I think that happened just as I stopped coming on so much. Thanks for moving the thread.

patti ut

[Helga]

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.

Reply:

FYI: I was charged $760 for a phone consult with Dr. S., payable on the spot with credit card - or no consult.  I still liked talking to him although he does exaggerate the facts a little (describing the difficulty of operating on a post-GK or CK regrowth as trying to remove a burned hamburger patty from the grill). I seriously considered SBI, but in the end didn't want to re-mortgage our house for the $140,000 (half up front, half when you get there, cash or credit card, if insurance doesn't pay) and kept looking.  I also was discharged on the second day after surgery.

[Patti UT]

makes you wonder why SBI won't take insurance.  Seems a little taking advantage of people in a desperate situation.

[chopper]

makes you wonder why SBI won't take insurance.  Seems a little taking advantage of people in a desperate situation.

Unless something has changed, they do take insurance.  It becomes a matter of how much insurance will cover, if they're in network, etc.

Some folks here had minimal expenses after insurance covered things.  I was not one of those people unfortunatly, but my total expenses paid to Dr. S were still only around 20k out of pocket (and payment installments can be worked out directly with them..which means no interest).

[jerseygirl]

I echo Chopper - that has been exactly my experience. If one has no insurance and has to pay out of pocket then I doubt SBI will be more expensive than anyone else and, yes, we are talking about a sum of money that is over 100K. That includes doctors' fees, hospital fees, diagnostic tests, etc.

                 Eve

[chopper]

100k, dammmmmmn...you must have got off easy!  The bills I remember seeing were in the high 240k range, not sure if that was combined or just the hospital stay.  And to think, some people still wonder how medical expenses are one of, if not THE top reasons most normal folks end up filing for bankrupcy.

[Samjones]

I had my surgery with Dr. Shahinian at the Skull Base Institute and I know choosing Skull Base Institute was one decision in my life that i would never regret.  Dr. Shahinian was the only surgeon that would be able to resect my entire tumor and save my hearing...  If I had to do it again I wouldn't look anywhere else.  Dr. Shahinian is the only surgeon that performs minimally invasive fully endoscopic surgeries...  I did my homework!!!!!!!  I would recommend him to everyone he is the best    everywhere else I went and looked into seemed like they just started to perform Acoustic Neuroma surgeries and confussed me more then I was about what the outcome would be   when I had my phone consult with Dr. Shahinian, I knew that i would end up  choosing him, he was the only Doctor that gave me all the information with confidence and knew what he was doing.  They even gave me past patient numbers that I contacted and all of them were happy with their surgery with no complications, how recovery was short and how great they are doing now...  That was amazing and today I live to say the same story and give the same information to those of you that might have questions and concerns for the Skull Base Institute.   

[sharonov]

Dr. Jho in Pittsburgh also does endoscopic surgery, though as somebody said in a previous post, it may not be fully endoscopic.  I sent my MRI disc and all other info to his office; he reviews MRI's from people like me on Mondays.  I didn't get to talk with him, so that was a problem as when his assistant phoned he couldn't answer quite a few of my questions.  However, he did get back to me promptly with Dr. Jho's answers.  He has a website that is as impressive as SBI's, though I haven't talked with anyone who's chosen him.  I did ask if I could be assured that he would do 100% of the surgery, and was told that the only other surgeon they have is a fellow and would not be doing any of it.

In my case it's important because SBI doesn't take Medicare.  Dr. Jho does.  So if I ever have the surgery I'll probably look east to Pittsburgh.

[leapyrtwins]

Sharon -

are you the one who mentioned Dr. Chandler to me?

I had a chance to read his CV in the symposium booklet this weekend and it said something about him having an international reputation for endoscopic skull based surgery.  Does this mean he does surgery ala Dr. Jho and Dr. Shahinian?

I was actually in line to ask Dr. Chandler, but he was late for a presentation he was giving at another session, so he had to go and I never did catch up with him. 

Did I misunderstand his CV?  Do you know if he does endoscopic removal of ANs?

Thanks,

Jan

[ixta]

I was pleased with Shahinian at SBI, I have a bunch of threads on my experience here if you search and at  @ http://www.killkuato.com
My insurance Premera Blue cross got a benefit level exception and it was all paid for. I had to put 11k on the table in case they didn't and would have had to pay the rest up to but not past 25k.
INsurance came through and covered everything, surgeon fee of 50 something k and hospital stay of over 165k

but get this, almost 3 years has past since My surgery and I get a bill the other day for 3k from Dr. Ghodsian, a pulmonologist that has his practice with Shahinian.
My insurance had paid for it, but as out of network and had sent me a check for 650. Bills were not coming to my house since they had the address wrong.
Now I got a case manager battling it out for me and it should turn out good in the end (which I thought was 3 years ago ahha!)

Anyway, my main advice is to get case manager/social worker that you get along with inside your insurance company. Also, during the hospital intake and discharge, Ghodsian may be involved so make sure insurance knows. At least he was with me.

[sharonov]

Leapytwins,
I'm SO sorry I never got to meet you, Jan!  I was there--the tall lady with glasses and a big mess above her upper lip because she fell on her face Thursday night--I met Steve and Cheryl & Phyl, but not you.  I did try.
Anyhow, I did ask Dr. Chandler and he said he doesn't do endoscopy on AN's because it's a 2-dimensional view which is not good enough.  He said that he only retracts the brain a little bit for a little while during retro-sigmoid........who knows, but my trigeminal neuralgia has subsided SIGNIFICANTLY, which makes me very very happy and Dr. Chandler has again put me on Watch and Wait status. 

I asked at the general session if any of the docs had encountered people who stayed on W + W status like forever, and they all said a resounding yes.  So, maybe--just maybe--I'll never have surgery. 

By the way, one other doctor said that it's impossible to get to an AN without retracting the brain.  Since my knowledge of anatomy is limited, I couldn't contradict him.   
Sharon

[leapyrtwins]

Sharon -

I'm so sorry I missed you too.  Some of us were wondering at the banquet on Saturday night if you or Joyce (Jeepers) were in attendance.  We weren't sitting with Steve or Cheryl or Phyl, which is why I never realized that you'd come and gone.  We'll have to meet at a local meeting or something.

Thanks for clearing up my confusion on Dr. Chandler and endoscopic surgery; mystery solved.

I sat next to a woman at the banquet who has been watch and wait since the 80's.  She was from Modesto, CA and was wearing a thin white bonnet on her head - I believe she was Amish (?)  Anyway, aside from some hearing loss, she is doing great and her AN isn't growing.   Maybe your AN will follow her example 

Jan

[sharonov]

I talked with that lady also.  Her hearing is even worse than mine!  I think the little bonnet means Mennonite, but I'm not sure about that either.  Hope to see you at a local meeting.

I'm still wondering about the endoscopic guys and hope I never have to go through the decision making process again.
Sharon