ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Patti UT on July 10, 2009, 03:10:29 pm
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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
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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))
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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?
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Thanks Andrea & Anissa, good to talk to you too.
thanks Donnalynn for the PM about SBI, interesting info.
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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
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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
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Patti, where did you find the negative info? I looked and looked and couldn't find any.
Sharon
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Hi Patti UT,
I'm also considering SBI and would appreciate any insight...thanks, melinda
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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.
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makes you wonder why SBI won't take insurance. Seems a little taking advantage of people in a desperate situation.
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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).
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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
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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.
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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 ;D 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. ;)
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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.
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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
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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 (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.
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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
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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
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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
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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.
correct... and a lovely couple they are... and yes, she is Mennonite Amish. I know she was researching a lot of radio treatments as well. I wasn't sure, in my conversations with them, about their research on endoscopic as I know she's been W&W for a while, with the intention of staying that way (as would be nice for us all....)
Phyl