Skull Base Institute

[sharonov]

Whew!  Dr. Shahinian's staff person just phoned me, and in the first glow of talking with her I'm wondering why anybody would have anything other than endoscopic surgery!  According to her, he's been doing this for 13 years, and I'm virtually guaranteed to retain my hearing, facial nerve and balance, plus taking care of my trigeminal neuralgia!  It sounds as though this wasn't necessarily true in the beginning, but now he's got it nailed.     A dime-shaped hole just behind my ear and away he'd go.  One 65-yr-old patient was playing tennis three weeks after surgery! (Well that won't be me because I don't play tennis now.)                Hmmmmm...................

Thank you, whoever is reading this, for putting up with my rambles and indecisions.
Sharon

[CHD63]

Sharon .....

If you opt to go this route, I hope and pray you have the success described.  Not to throw a damper on your excitement, but please remember that most of these surgeons are very proud of their work and naturally feel that their method is the best (or they would not be doing it).  That being said, as many of us have said on this forum ..... after your research is complete, you have to trust your inner self (gut, if you will) and go with it ..... and do not look back.

My prayers for a safe journey the rest of the way.  And, hey, we listen to everyone else's rambles and indecisions    ..... that's what we're here for!!

Clarice

[leapyrtwins]

Sharon -

although those who've chosen this surgical approach to treat their AN are very happy with the results, it is still not the "norm" as far as AN surgery goes.  It's relatively new and cutting-edge and not performed by many doctors.  Although it may well become the way of the future, I'd put my money on conventional AN surgery at the present time.

However, that is just my opinion - and I'm sure there will be those who both agree and disagree with me.   

Jan

[sharonov]

Both of you are right.  And this doctor's clinic manager seemed to be unduly "selling" the SBI.  However, come to think of it,  Dr. Friedman "sold" his services, if that's what you can call extolling his expertise and all but promising me hearing, balance and facial nerve preservation (as well as getting rid of my Trigeminal Neuralgia).  As I mention in a previous post, under Choosing the Doc, Dr. Ganz of University of Iowa was an exception in that he not only didn't "sell" his services, he inadvertently discouraged me.

I'm curious to see what Dr. Battista will suggest and recommend.

I'm almost beginning to lean slightly toward my original neuro, who is an expert in skull base surgery and suggested retro-sigmoid during which he'd take care of the TN and only "de-bulk" the tumor to save the other nerves.  That's Dr. Chandler, one of the hosts of this years symposium.

[another NY postie]

I am newly diagnosed (2 weeks) but spoke with someone right away who had surgery in NYC and he told me he had flown out and consulted with both House and SBI.  His take was SBI is cutting edge and is probably the wave of the future.  He did not end up doing because his brother is a doctor and I guess, according to him, Dr. Shahinian is not a board certified neurologist.  He is a skull base surgeon.  I don't really know exactly what that means in terms of differences. But I googled Shaninian and read a lot on him.  He is getting great results but there was also a lot of contraversy over his hiring at SBI. I think he is a maverick and a good choice if you are a risk taker (and I don't mean that in terms of additional risks from surgery - I mean the type of person who can live with trying something that is being done that is fairly "new" in the AN world). The guy I spoke with NYC  said his NYC surgeon flew out and observed Shaninian and was impressed with his results.

[sharonov]

VERY interesting info.   Thanks.  I'm supposed to talk with him on Monday and will see if I can find accurate info on his success rates with my size tumor.  His clinic manager sounded a little too glowing.  There have to have been some problems, undoubtedly less as the year have progressed.  I like the 4 per week for 13 years.  Neuro or no, he has to have learned something!
Sharon

[Jeepers]

I've been a watch & wait patient of Dr. Battista for 6 yrs now and am finally scheduled for surgery in 2 weeks. Surprisingly, I'm finding his office staff to be pretty much on the ball these days. Six yrs or so back there was one gal there that was NEVER a pleasant person to deal with. Dr. B is a very low-key guy, but what I liked about him was that he calmly explained all options and I never felt he was trying to sway me one way or the other. As I mentioned, he has also started doing radiosurg with a team at Alexian Bros. so his eggs, so to speak, are not all in one basket.

After talking with Dr. Kazan (his neurosurg counterpart) I was also additionally reassured about Hinsdale Hospital. Kazan spoke of how supportive Hinsdale has been with their needs - providing them with whatever current equipment they asked for over the yrs as well as great staff support.

Good luck with your choices.

[boomer]

Hello again Sharon,

[boomer]

Sharon....I just talked to you on the phone a little while ago and forgot to mention I was scheduled at HEI for Translab when I found SBI only 3 weeks before.  So of course I cancelled HEI and told them the truth as to what I decided to do.  About 3 months after surgery the Dr. from House Ear called me and wanted to know if I went ahead with SBI and how things were going.  I told him in August I would be getting another MRI follow up and he requested I send him a copy also.    I thought that was interesting.

Keep in touch,

Boomer  (Vickie)

[leapyrtwins]

That's Dr. Chandler, one of the hosts of this years symposium.

Sharon -

Actually Dr. Chandler is one of the symposium organizers for this year.  Dr. Richard Wiet is the host.  I, myself, am an "angel" 

Jeepers' experience with Dr. Battista sounds much like mine.  He is a quiet, thoughtful man; extremely low key; not one to "push" his agenda; not one to sell himself.  In fact, I often tell him that he needs to "advertise" more, but that's just not his style.  He won't "sell" you anything - including his experience or his excellent skills - and he definitely believes in full disclosure - sometimes to the point of being scary; but to his credit, he wants patients to know exactly what they may encounter with surgery or radiation.   I'm not sure what Jeepers means when she says he's "started doing radiosurg" because he's been doing it for a while - it's not something new to him.

Adventist Hinsdale Hospital is a great place to have AN surgery and they are very committed to ear "issues" in general.  Dr. Wiet founded the Center for Hearing Restoration and Ear Research there approximately 30 years ago.   And they opened a pediatric version of this center (that I am proud to say I contribute money to) a couple of years ago; Dr. Battista is the director.  Earlier this year, he performed the center's first pediatric simultaneous bilateral cochlear implant surgery on a 19 month old toddler.

You have many great options and I'm confident whichever one you choose you will make the best decision for you - which is what is most important.

I do, however, want to caution you against any doctor, or office staff member, who "all but promises you hearing, balance, and facial nerve preservation".  IMO this should send up a huge red flag to you.  No one - doctors included - can guarantee you anything 100% when it comes to AN treatment - or any other type of treatment for that matter.  And any doctor worth his MD will tell you that. 

Jan

 

[sharonov]

Hi Jan,
Thanks for your response(s)--I really appreciate the time you take to answer mine, and many other people's questions.  Lots of people wouldn't take the trouble once their surgery was over, unless they were very unhappy about it and wanted to "dis" the doctor involved.

I don't think any MD I talked to claimed 100% success, just said that with my size tumor they had very good success.  Of course, I'm thinking that I could have the same experience as you and they'll get in and find a hidden monster!  You indeed had a very good outcome considering that the tumor was wrapped around a nerve.  And I definitely agree that living close to the treating hospital is a big advantage.   On that note, I've again scratched Dr. Chandler from my list, remembering that he didn't go over the risks of retro-sigmoid, which I had to get here and on other internet sites.  Plus I really really dislike his nurse and want to be done having to deal with her.

I'm seeing Dr. Battista on Monday and will give a full report!  However, I'm leaning even more strongly toward the SBI aftr talking with Vickie (Boomer) last night.  She's just a few years younger and has a tumor just a wee bit smaller than mine.  And her recovery has been so much more rapid than most stories I read!  I think I already wrote about my husband's experience with the "new wave" in prostate surgery--namely the robotic method--and have drawn some parallels.  His recovery time was waaay faster than it would have been had he had the traditional "open" method.  Oh...........plus Dr. Shahinian took care of her Trigeminal Neuralgia!  That hideous pain is what's taking me out of "Watch and Wait" mode and away from my original plans to go to Stanford & have the Cyberknife if needed.  In four years my AN has hardly grown, I'm 66, it's not touching the brainstem, so I might have escaped the necessity of doing anything at all.

Anyhow, I look forward to Monday and meeting your hero.  And..........I look forward even more to meeting you and the other wonderful people who have been supporting me on this site, when I go to convention!
Sharon

[Jim Scott]

Sharon ~

I've followed this thread and haven't responded to it until now because I thought others, especially Jan ('leapyrtwins') were offering you good information that I couldn't substantially add to. 

I'm pleased to see that you're exploring your options and having multiple consults, which we always recommend.  Jan's Dr. Battista is much like my neurosurgeon, who isn't in your area, unfortunately (I'm in Connecticut).  Dr. Issac Goodrich is a mature (60's) neurosurgeon with over 3 decades of experience performing AN removals.  Immediately following my AN diagnosis, I went looking for a neurosurgeon.  Fortunately, I found the 'right' doctor on my second consult.  He presented a clear plan to me and my wife (debulking surgery, then, FSR) and was quite unassuming, considering his excellent local reputation and very busy practice (the hospital nurses practically worshiped this doctor).  He was indifferent to his fee and on our first visit, when we asked about his fee, stated, emphatically, that he would accept whatever my insurance company paid and that I "shouldn't give another thought to his fee" but just concentrate on "getting well".  He meant it.  Blue Cross paid Dr. Goodrich and his female assistant (another neurosurgeon he is training to take over his practice) $28,000. for their serrvices, including pre and post-op office visits.  I never received a bill from his office.  I offer all this information only to (a) praise my neurosurgeon and, (b) let you know that there are many fine, experienced, compassionate doctors working with AN patients around the country.  I'm very pleased to learn that you're consulting with some of them in your area. 

That stated, I am appalled when I read of nurses and other medical personnel that are rude and generally insufferable to patients seeking help from a doctor.  I would consider writing a very civil, brief note to Dr. Chandler stating your displeasure with his nurse.  Just for the record.  He may approve of her tactics or be totally unaware of them.  With your note, he'll know.  Well, this is what  I would do, because I don't suffer rudeness or incompetence easily.  I may not 'make a scene' but I do make my displeasure known, in some manner.  A brief note can do that.  No demands or incivility, just a statement of your experience - and resulting displeasure.  Or, you can just forget the whole thing, which is sometimes easier.  I've done that, too.

I wish you much success with your upcoming consult.  Unfortunately, I won't be attending the upcoming ANA symposium in Chicago - but I'll be there in spirit! 

Jim

[leapyrtwins]

Good luck tomorrow, Sharon.

I know that whatever decision you make, it will be a well thought out, and well researched, one.

Please give my best to Dr. Battista; he truly is one of my heroes 

Jan

[sgerrard]

Hi Sharon,

I will toss in 2 cents worth on SBI. My impression is that when it works really well, it is better than regular surgery, and when it doesn't, it is no worse. There have been some cases of not having a fabulous recovery, but they are not terrible ones either, just not any different than regular surgery.

SBI and Shahinian are mavericks in the field, but his credentials are quite good, as are his results. Endocscopic surgery is making its way into neurosurgery; if you Google it, you will find that it is now used in major institutions in Chicago and New York, for instance. It has not made its way into acoustic neuroma mainstream surgery yet, other than with Shaninian and I think someone in Pittsburgh. I bet it will in time.

I think Laura (allegro17) did SBI in May, after completing the Boston Marathon. She was battling dizziness for a while afterwards, not just a few days, but otherwise has done well. I think she is planning to run again in August.

Steve

[nteeman]

Hi Sharon,

I will toss in 2 cents worth on SBI. My impression is that when it works really well, it is better than regular surgery, and when it doesn't, it is no worse. There have been some cases of not having a fabulous recovery, but they are not terrible ones either, just not any different than regular surgery....
Steve

Steve,

What does this mean? When conventional surgery works reallywell compared to endoscopic surgery working really well, what is the difference? I don't know what you are trying to imply--regular surgery doesn't work well and endoscopic sometimes does? I realize it is your 2 cents but for my 2 cents I think it might be a little misleading to someone trying to figure out what treatment path to take. The best is to get as much information from doctors you trust and make up your mind for yourself and not to bother picking up loose change.