SBI and what is endoscpic surgery?

[hruss]

Hi all,

yesterday I came across with the abbreviation SBI (as far as I remeberit stands for skull based institute, right?) and endoscopic surgery which both are new to me. Can anyone explain to me what they refer to? Is there anyone who has experience with this procedure? is it suitable for large ANs (I guess that mine continues growing, though it was debulked in January 2008 but not treated after that!)

any input will be highly appreciated!

thank you!

[Jim Scott]

Hruss:

Endoscopic AN surgery is a minimally invasive technique, creating a dime-sized incision behind the ear. A miniature fiberoptic videocamera is snaked in through the hole so the tumor site can be viewed on a screen.

The consensus among neurosurgeons is that this approach is too risky.  If the surgeon inadvertently cut a blood vessel, you could bleed to death before they could get your skull open to fix it.  However, The Skull Base Institute located in Los Angeles, California promotes this procedure as quite safe and effective.  http://www.skullbaseinstitute.com/

My very experienced neurosurgeon said he is unfamiliar with it and seemed less than enthused when I asked him about it. 

Jim

[jerseygirl]

Jim,

Your very experienced neurosurgeon refused to operate on me presumably because he could not save my facial nerve. I shopped around further and ended up at SBI. The result is that my facial nerve was saved while the tumor is seemingly gone. After we meet face to face, I hope to shake hands with you and smile widely and symmetrically. I am really happy for you and I rejoice myself after everything I have been through.

Hrissy,

I had a huge tumor removed when I was 25.  Unfortunately, not all of it was gone after surgery and the remainder grew back. Sounds familiar? I had another surgery last year at SBI, my facial nerve was saved and tumor is gone based on the MRI results. I would love to answer your questions but am not sure what exactly you want to know; I am just afraid to be patronizing and repetitive. I have to say your attitude is wonderful; it is something to be envied. You also have the support of your family and friends ; it is crucial to your recovery.

              Eve

[Jim Scott]

Jim,

Your very experienced neurosurgeon refused to operate on me presumably because he could not save my facial nerve. I shopped around further and ended up at SBI. The result is that my facial nerve was saved while the tumor is seemingly gone. After we meet face to face, I hope to shake hands with you and smile widely and symmetrically. I am really happy for you and I rejoice myself after everything I have been through.

Let me get this clear:  You consulted with Dr. Issac Goodrich of New Haven, Connecticut and he refused to operate on you because he concluded that he could not save your facial nerve?  Dr. Goodrich is very conservative so I can't dismiss this as beyond possibility but he does have over thirty years of experience removing Acoustic Neuromas and I consider him very compassionate.  He certainly was a Godsend to me, as you apparently know.  For reference, here is his practice's website address: http://www.ct-neurosurg.com/ - just to confirm we're discussing the same neurosurgeon. 

I'm always pleased when another AN patient has a good outcome and I certainly won't debate the pros and cons of endoscopic surgery because I'm not a neurosurgeon, don't know much about this procedure and really don't wish to engage in debates here.  If it worked well for you, I'm delighted.  I simply posted what was stated by others.  Actually, it sounds very interesting.  Who wouldn't want this minimally invasive surgery as opposed to the usual very invasive surgery almost all neurosurgeons use?  However, Dr. Goodrich is not the kind of surgeon who won't consider new methods, which is why he used debulking surgery and radiation, combined, to treat my large AN without risking facial nerve damage.  I'm a bit dismayed that you claim he flatly refused to operate on you due to the risk of facial nerve damage, although I won't argue the fact.  I wasn't there and don't know what may have transpired.  That you found an alternative surgical protocol that was efficacious for you is good news and I applaud your success and your wide, symmetrical smile, which is always a good sign for post-op AN patients.  I trust this procedure will become better known in the near future and possibly offer AN patients a better althernative to what we have now.  Thanks for the information. 

Jim

[jerseygirl]

Yes, Jim, we are talking about the same neurosurgeon.  After I read from your posts about his experience, compassion and your high opinion of him, I consulted him. He happened to be in my network, so insurance would have paid for surgery. Another consideration for me was that I live in New Jersey and Connecticut is far easier and less expensive to travel to than California. At that time I was not thinking about SBI or HEI and wanted to stay close to home. Unfortunately for me, he is not the only neurosurgeon who refused to operate, so that is how I ended up in California. Regardless of where we had our treatments, we were both fortunate to have really good outcomes.

             Eve

[Jim Scott]

Eve:

Thanks for the verification.  I'm still a bit surprised.  However, as you might expect, my opinion of Dr. Goodrich has not changed one iota.  He has vast experience, much success and is very compassionate.  I wish I had known you were going to see him.  Not that this would affect his conclusion, but I might have facilitated your consult in some way as I've done for other AN patients, even though Dr. Goodrich ultimately referred them to a radiation oncologist due to their small AN's that, in his opinion, didn't require surgery.  Dr. Goodrich's integrity and professional expertise is unassailable in my opinion and while not nationally known, he is very highly regarded in the New Haven area. 

In any case, this apparently worked out very well for you, Eve, and I'm pleased.  As I previously stated, I would love to see endoscopic surgery on acoustic neuromas become widely accepted if it is as successful with AN patients as it seems to have been with you.  I think that will take some time as the medical profession moves slowly and I still believe there are real risks involved that could present serious, malpractice lawsuit problems for surgeons when things don't go as smoothly as your surgery apparently did.  I guess 'time will tell' on this issue.  The imperative is that you did great with it, had no complications and proved the experts wrong.  I hope more AN patients  explore the feasibility of endoscopic surgery in the future.  You really should 'spread the word' on your success with this new procedure.  Once again, thanks for the information.

Jim

[sgerrard]

I wonder if the reluctance of Dr. Goodrich and others has more to do with it being a regrowth and second surgery, than with the prospects for the facial nerve. It can be tough for a surgeon to try to pick up where someone else has left off, so to speak.

But all's well that ends well. I too hope that endoscopic surgery develops into a successful new method for treating ANs.

Steve

[Jim Scott]

I wonder if the reluctance of Dr. Goodrich and others has more to do with it being a regrowth and second surgery, than with the prospects for the facial nerve. It can be tough for a surgeon to try to pick up where someone else has left off, so to speak.

Good point, Steve.

I made it crystal clear to my neurosurgeon that I was very concerned about the potential for the facial paralysis often associated with this surgery.  Dr. Goodrich looked me in the eye and said, in effect, that he couldn't guarantee that wouldn't happen but that he and his 'hand-picked' surgical team (no interns or residents) would do everything humanly possible to prevent it while debulking and later, radiating the AN.  He added that this two-step approach had been very successful with large tumors, like mine.  He cited data from Boston and his own experience.  As you know, the surgery and radiation were a resounding success. 

The reality is that no surgeon can promise or guarantee the exact outcome of a procedure and, all together now:  each patient is different.  Dr. Goodrich is not only compassionate and experienced, he is very conservative in his approach to surgery.  That being the case, I can understand his apparent reluctance to operate on Eve under the circumstances she presented (regrowth).  Actually, she seems to have been better off with the endoscopic procedure she had at SBI.  I guess it all comes down to risk and how much the doctor and patient are willing to gamble.  Dr. Goodrich is very busy and doesn't accept every case that is presented to him and he doesn't perform surgery if radiation is indicated.  He isn't 'cut-happy' as some surgeons are.  A man with 40 years of AN surgeries on his resume and many grateful patients - including this one - can be selective on the patients he accepts and feels he can help without drastically altering their quality of life. Doctor Goodrich expressed his concern for my quality of life, post-op, more than once.  This is why I respect and admire this particular neurosurgeon and would recommend him to anyone without hesitation or caveat. What happens after that I cannot control but I trust that, as occurred in Eve's case, the situation would work out for the best.

Jim

[leapyrtwins]

Jim -

just wanted to say that not all doctors are for all patients.

While I absolutely love my neurotologist, everyone looks for different things in a doctor.  I know a few other AN patients who consulted with my doctor and then chose someone else.  He just wasn't for them for one reason or another.  What can I say except "to each his own". 

I find it wonderful that Dr. Goodrich was the best choice for you.  And I also find it wonderul that Dr. Battista was the best choice for me.  Others will obviously find that their best choice was someone else.

Bottomline, we both did good 

Jan

[jerseygirl]

Steve,

You are absolutely right (as usual!). I was told my case was "a challenge" no matter what I did - surgery or GK. It is not the endoscopic approach that helped me but rather a skill of my surgeon. Not every surgeon, I learned, is up to the challenge to operate in a difficult situation which, in turn, leads him to not acquiring this skill. I was refused by both traditional and endoscopic surgeons. Regrowth is liike an old construction - nobody wants to do it, except when it comes to the head, I could not level everything off and start from scratch. Realistically,  I had a choice between two surgeons: one traditionalist in NYC which was very close to home and SBI which was in California and which performed an endoscopic method. I chose the latter and did not regret it. I think my facial  nerve had a very high chance of being saved by either surgeon but the traditionalist had to take my existing scar apart and I was afraid to be in pain again. After the first surgery I had monstrous headaches for 10 years so that was my big concern in addition to everything else. Endoscopic removal promised to be pain-free and therefore, had the potential for higher quality of life. It ended up being just that. Both surgeons that wanted my case, incidentally, dealt with big tumors, prided themselves on getting people out of difficult and challenging situations and simply did not refuse anybody who turned to them for help. Thank God for them and their surgical talents, otherwise, I would not stand a chance. 

Hrissy started this thread and has a situation similar to mine. I  am simply telling her where not to go because I have been there and what to look for in a surgeon she interviews. She made it clear that she does not want radiation so Jim's treatment plan is not a role model for her. I am not trying to change Jim's opinion of his neurosurgeon but I think Jim has to realize that if Hrissy's goals are complete tumor removal after previous failure, no radiation and facial nerve preservation, Dr. Goodrich is probably is not the best surgeon to consult. This is a perfect example of what works for one person does not work for another. After all, Hrissy came to this board for information and support.

               Eve

[Jim Scott]

Eve: 

I certainly won't argue with you or Jan (or anyone else) about the premise that every surgeon is not a perfect fit for every AN patient.  Neither is every treatment equally efficacious for every patient, as the myriad experiences on these forums attest. 

Hrissy asked a question about endoscopic surgery and the SBI and I responded with the information she requested and a bit of editorializing from other sources as well as my own experience when I asked my surgeon about this procedure.  Admittedly, I put a negative spin on it because from what I've read, endoscopic surgery is clearly not the panacea some may assume.  I wish it were.  I did not advise or suggest that Hrissy follow the same procedures I underwent.  I have my faults but I've never been that presumptuous.  I'm not a physician and always state that a treatment decision should be based on a patients doctor's advice, their 'gut' feeling and their own research.  I do not attempt to make those decision for others.  I offer my experience as a beacon of hope for the newly diagnosed but I understand that my surgery/radiation protocol was designed for my particular case by my neurosurgeon and radiation oncologist.  It is not interchangeable for every other AN patient and I don't believe I've ever inferred that.

As my previous posts in this thread have demonstrated, I'm not against endoscopic surgery.  It sounds great.  I'm just not convinced it's automatically the alternative to traditional surgery and I'm a bit skeptical as to why it hasn't exploded in popularity and why folks with good outcomes from it aren't shouting it's praises everywhere.  It should be front-page news, so to speak, at least in the AN community - and it isn't.  That raises doubts.  As for Dr. Goodrich, he clearly was not the doctor for you and, as I've stated numerous times, I'm pleased that your endoscopic procedure worked out so well.  I'm sure Dr. Goodrich would be equally pleased. 

I think we can all agree that just because an AN patient has a good experience with a specific procedure and/or a doctor, that doesn't guarantee that another AN patient can or should choose the same doctor or procedure.  Naturally, we'll tend to praise a doctor we feel did a good job on us and of course we'll be favorable to a procedure that worked well for us, as with your endoscopic surgery and my debulking/radiation procedure.  That is evidenced all over these various forums by a wide variety of AN patients.  Some 'newbies' actually use the doctors others praise and are just as pleased with them.  Others, not so much.  That doesn't make anyone right or wrong, just different people.  I believe that we can all attest that when we have a good outcome, we want to tell others - as we've both done.  This is the essence of the message boards: sharing information and supporting each other, as needed.  Opinions are part of the mix.  Even the humor is welcomed, whether everyone 'gets it' - or not.  So it goes on a public message board and you know what?  I wouldn't have it any other way. 

Jim   

[leapyrtwins]

As my previous posts in this thread have demonstrated, I'm not against endoscopic surgery.  It sounds great.  I'm just not convinced it's automatically the alternative to traditional surgery and I'm a bit skeptical as to why it hasn't exploded in popularity and why folks with good outcomes from it aren't shouting it's praises everywhere.  It should be front-page news, so to speak, at least in the AN community - and it isn't.  That raises doubts.

Very well said, Jim.  I, too, am skeptical of endoscopic surgery to treat ANs.  As you say, there just isn't enough being said about it in the AN community to make me believe it's a viable treatment option.  While I'm glad that Eve had such a positive outcome, I think the jury's still out on this one.

Jan

[HeadCase2]

  As has been said many times on this forum, every AN patient's situation is different.  From the differences in the AN itself, to personal situational needs.  Thankfully, there are several effective treatment options.  This perhaps makes it more difficult to chose a treatment option, but thankfully multuple options are there for us.
  I have great respect for any doctor who says that they are not the person to treat me for what ever affliction I might have.  In a perverse way, I might have greater respect for that doctor than one that has an ego big enough that they think they are the best person to perfom treatment in any situtaion.  Kind of like the old joke where a Neurosurgeon was asked who the three best Neurosugeons in the world are, and he couldn't remember the other two.

Hruss,
  Do your research on the endoscopic option, as well as it's doctors. just llike you have been for the surgical option, and the radiosurgical option.  You can search for SBI (from the forum's top level) to see posts from several forum members who have been treated there.
Regards,
  Rob

[jerseygirl]

Rob,
I also respect the surgeons who spent time with me but said they could not remove the tumor without compromising the facial nerve.It shows self-awareness of limitation of their surgical skill. Nevertheless they provided their valuable insight into the nature of my problem and, of course, difficulty of my situation. Each one, therefore, contributed to my knowledge and allowed me make a decision that worked out at the end.

Jim and Jan,

Every form of treatment can be called a panacea and advertised as such. 20 years ago, when  I had my first surgery, microsurgery was the only option. There was no radiation. While I was having a regrowth, I watched radiation come up. Now we know that it is a viable option but not for everybody and every case. Back then, however, many radiation specialists advertised it as a panacea and wanted to radiate every single tumor regardless of its size, location and nature. They wanted to "save people from the experience of undergoing open brain surgery". Great argument but it did not always work. Even HEI, who was always pro-surgery, last year acquired GK machine and started doing radiation. There are people who say that CK is too new to consider and there is no long-term data but plenty of people on this board had wonderful outcomes. Same thing with endoscopic version: it is not a panacea, and not for everybody, but it is a viable option. The fact that so few people who had endoscopic resection are on the board is actually good: they had great outcomes, need no support and moved on with their lives.

I am not pro- any form of treatment. I am pro-patient and pro-choice; it is whatever works. I want everybody to have a symmetric smile, small or no scar and keep their hearing. I want everybody walk straight, be pain-free and have minimum interruption to his/her life.   
Endoscopy is front-page news. Here is an article on its development and its effect on every single surgical specialty:
http://nymag.com/bestdoctors/articles/02/kindestcut/ Every week I read in the news new developments in surgery and they are always in minimally invasive/endoscopic area. Here is an example that I already posted: http://www.sciencedaily.com/releases/2008/05/080519092213.htm

Hrissy,
Endoscopic version is just like microsurgery in terms of its risks but much easier to go through. If everything goes OK, you spend 2-3 days in a hospital and a tiny sliver of hair is shaved. There is no bonnet after surgery, just some tape. You can also wash your hair right after the hospital. I almost felt guilty doing so! The incision is tiny - 8 or 9 stitches. For me, there was no pain as Dr. Shahinian went through the metal. No bone to drill, therefore, no pain. The surgery is half as short as traditional and there is no heavy anesthesia. In other words, it is fast and easy. You can fly right after surgery but probably should not. SBI is the only endoscopic facility in the USA who gave me a good prognosis and they do big tumors.

HEI is also excellent but they do traditional surgeries. They also have experience with big tumors and recurrences - very important for you.

There is another brilliant surgeon in NYC I was impressed with - Dr .Sen. Here is the info: http://www.docnet.org/physicians/phys_bios.aspx?phys_id=1606

I am sure there are other doctors in the US who do recurrences and big tumors but I cannot help you there.

             Eve

[hruss]

Thank you for the readiness to chime in, my virtual friends!!

Rob, i used the search box on the top and found out a thread of members called ixta and chopper, who later on chose endoscopic surgery, thank you for the suggestion.

Jerseygirl, it is wonderful that you posted after my question - i am glad that you are so happy with your choice. what kind of surgery approach did you have in your first time? mine two surgeries so far have been done through retosigmoid approach and i wonder if i am suitable for an endoscopic surgery once the incision is larger.

You had your surgery in LA, CA, right with Dr Shahinian?! have you heard of other doctors like Hae-Dong Jho, who operates in Pensylvania. here is the link to the site of the doctor and the clinic in Pittsburg

 http://drjho.com/index.htm

or Dr  Christopher Linstrom M.D who is NY Ear and Eye institute. this is his link

http://www.nyee.edu/physlocate.html?phys_no=327&print=

What is your opinion for them? any information for them when you did your research? does anyone know about these institutions and how reputable they are?

Can you supply me with costs of money you had to pay for your surgery in SBI? i don't have an American medical insurance ad i have to pay every dollar on my own. I was thinking of going to HEI, LA, CA and i am still considering this idea too and again I have to pay everything on my own. One thing is sure - it is very very expensive!
How expensive was it for you in SBI?

Thank you pals for your input so far - it really matters - it gives me strengths that people despite on the other part of the world show consideration.

Best wishes and have an energizing last day of the week!

Hrissy