Why don't other surgeons explain the difference between endoscopic and open?

[jazzdancer]

I am so angry with my doctors here in the Midwest!  I have had this thing in me for about 2 years now and these dumb doctors just tell me to wait and lets watch this thing.  I have done nothing but read on so many different websites that these are slow growing tumors and that they damage hearing.

So why would I want to wait to see if it damages my hearing more! WTF!!

I am just sick and tired of it... it seems like games!!!  I went to my neurosurgeons office on Monday and I told him that I want to have surgery, I alrady have some balance problems and ringing in my right ear.  I am so interested in having the endoscopic treatment done!!!  He said NOOOOOOO, it can not be removed endoscopically, I said yes it can, he said NOoooooo it can't, I said yes it can, so I showed him on the internet this place that does it completely endoscopic and their patients are only in the hospital for 2 days! he said that this is a gimmic!  I told him can he call there and find out more for me and he said Noooooo!  WTF is that!

I'm so frustrated!  I finally got the guts to call this place in California that I saw on the internet and their videos of taking out the tumors and reading all about what they do.  And I just wanna go to California and have this taken care of... All the information is so overwhelming and my Doctor doesn't want to help me at all.  My tumor now measures 2.4x3.7cm in the CPA (something about the pontine angle) and he wants to do gamma knife on me before having the surgery.  My doctor said that if he is going to push me to surgery then gamma knife will shrink it.  Well when I spoioke to Dr. Shahanian at the Skull Base in LA, I told him about all of this and he said that he sees this ALL the time!!! He told me that he could take out my tumor and I would only be in the hospital for 2 days and then I would be able to fly back home 48hours after leaving the hospital.  He said that he would be able to preserve whatever hearing I have left and that my ringing may get better and that my balance would def improve.... plus I won't be in alot of pain!! that is what I'm most scared about. I have never had surgery before!  Dr. Shahhanian said that he would be more than happy to answer any questions I have and if I wanna talk to him again just call his office, he said that he wanted me to make a wise decision and that he was sorry that I was going thru this !

HOw can this BE??!?!?!?!  Why are others going thru this LIKE ME!!!!!!!  I am just so angry.  I have looked at House, Loyola, Cleveland Clinic, and a few other places and they don't have the same ideas.. None of them offer the same and they all contrast and contradict eacother...

There has got to be a way we can come together and make these doctors change their behavior.  I am going to meet with my neurosurgeon tomorrow and tell him that I did have a phone consultation with Dr. Shahanian and see what he says...... You know I just don't understand why if I can really have this taken out and done with less pain and trauma then why can't he help me!!

So now, I'm just gonna pray... relax and hope that I figure out what to do...

[Cheryl R]

Jazzdancer,  Did you check out Univ of Iowa as Dr Bruce Gantz is ususally pretty big on trying mid fossa to save hearing.     Only problem there is no guarantees and the drs may be for the W&W to keep the hearing as long as possible in case it is lost with a surgery.      No easy choices with any of this.          Good luck with your decison and no easy answers with any of this and esp from any dr.                                                       Cheryl R

[Jim Scott]

Jazzdancer ~

Welcome to our site and the forum.  I'm sorry you're so upset with what seems like a runaround by your doctor.  You have to realize that as ethical as a doctor might be, he (or she) has their own ideas and will usually resist a patient - not only disputing those ideas - but opting to go elsewhere for what a surgeon might well consider a risky procedure.

Endoscopic surgery is relatively new and many doctors are not familiar or comfortable with it.  My neurosurgeon had never heard of it (in 2006) and said that he didn't see how the surgeon could see the tumor well enough to excise it efficiently.  You also have to keep in mind that Dr. Shahanian at SBI is promoting his distinct surgical method (endoscopic) and his organization and cannot be completely objective.  If you are no longer satisfied with the doctors you've consulted and reject their opinions, it is your right to have surgery with whatever doctor you wish.  You are not bound by one doctor's opinion.  Unfortunately, when you dispute a doctor's medical opinion, he is not likely to support whatever decision you make that opposes his.  You have to remember that, in his eyes, he is advising you as to what he thinks is best for you in your current situation, which is a growing acoustic neuroma that has to be removed, soon.  Watching and waiting is becoming an untenable option.  

Based on your obvious frustration, I would suggest that you seriously consider going with SBI and Dr. Shahanian, understanding that there is no 'magic bullet' and that even with endoscopic surgery, which may be the wave of the future for AN removals, there will always be risks.  I hope you can resolve this dilemma soon - and I hope we can help in some small way.  Just ask.

Jim

[opp2]

Hi JazzDancer,

I'm sorry you're going through this too. We have all been a little angry at times. I looked at SBI and asked my doctors about it. They were very logical in stating the following:

The surgery leave little room to get in and resolve a brain bleed should one occur during the process of inserting the stretching device (there is a scientific name for it but I forgot), The surgeon has not been published, and declines to publish his successes and failures within the surgical community he is working, there is very little published information regarding this surgery, and the surgeon is not schooled or trained in neurosurgery, but in cosmetic surgery. These are the negatives they provided. I feel it is because he is new and unchallenged that it is difficult for them to accept his techniques and his claims on face value. We are talking scientists really. These men and women have studied for years under their mentors, they are all researchers looking for better ways to serve us.

I haven't had any of them call him a quack however, they have been very cautious about him.

Check and see on line, you will not find a single negative review or story about him. Don't you think you would? I did. I really really wanted to hear supportive things as well but I didn't, so I have to trust my instincts. Until this surgeon has the support of at least some in the neuro community, for ME it was better to steer clear.

[Patti UT]

I too researched SBI and felt uncomfortable with the findings. As stated in the previous post, Dr S. is not a trained neuro surgeon or ENT surgeon, the ares they need to go into is ery small and the endoscope perhaps is rather large for this area.  Also, as stated you really can't find anything on him other than his own posted boasts, and the numbers his office gave me just didn't;t add up claiming he has done over 1000 acoustic neuromas. His clinic opened in 2006, so 3+ years,  do the math.   only 1 in 100,000 get the tumor, and a large portion of them go with radiation, and some watch & wait, and there are many locations around the country doing treatment for this. so how can this one doctor be doing such a high number of these surgeries? I was unable to find anyone else around the country doing them this way, in any numbers. I found several docs using endoscope for other Skull Based tumors (thus DrS. clinic name)  but not for acoustic neuromas.  For me I was just uncomfortable with the findings.   I really wanted it to be a possibility of treatment for me as I proceed with what to do with acoustic neuroma #2.  Endoscope sounded like a dream come true, and perhaps it will be the way they take care of these in the future. But for now, it is too much of an unknown. 

It is very frustrating and confusing as you weed through the colflicting information you find out there. And as Jim said, each doctor that specializes in this  have their own opinions and way of dealing with them.  The key is to nfind a doc that has done many many of these and has the expertise in surgically removing them if surgery is your choice of treatment.  I am surprised however that your doctor would ahve you watch & wait for 2 years with it being so big already.  Watching under 1cm is certainly somthing to considere, but once they strat getting to the 2cm arena, you really need to start thinking about what to do for treatment. and at an average of 1mm of growth a year, yours must have been at least 2cm before you watched and waited for the last 2 years.

Take a deep breath. it's a tough place to be. You will get some great help on this forum. we all know what your going through, ask lots of questions.

Hugs to you

patti ut

[wendysig]

Hi Jazzdancer and welcome,

I understand your frustration and fear. Like everyone else, I'm sorry to hear your doc is giving you the runaround.   As Jim pointed out. you are not bound to him and should feel free to seek other opinions, in fact, in my opinion, you should.  Don't let your neurosurgeon bully you inot having GK if you don't want it.  You should do research, talk to people here, seek other medical  opinions and  have the treatment that YOU are most comfortable having.  Not what someone else wants you to do.  A couple of people in the forum have been treated by Dr. S, jerseygirl comes to mind and I would suggest that you PM her. There were also a couple of others, although I can't think of who they are.  Hopefully, they will chime in.  Please keep us posted.

Best wishes,
Wendy

[leapyrtwins]

Jazzdancer -

I can understand your frustrations, but it sounds like you are seeing the wrong doctors.

Watching and waiting is an option up to a point, but when your AN starts to cause symptoms - like hearing loss - that get worse, the watching and waiting should stop.  Also, watching and waiting is a choice - it's not mandatory.

You note that you are from the midwest and that you have consulted with Loyola.  Have you consulted with the docs @ the Ear Institute of Chicago?  (www.chicagoear.com)  They do both radiation (GK) and surgery and my experience with them was wonderful.  They are affiliated with Northwestern University Medical School (they teach there).  I never looked into Loyola, but in the AN world in Illinois - Chicago Ear outranks them.  If you'd like to know more about my doc there and my surgical experience, please feel free to PM or email me.  You'll also find my phone number on the ANA's WTT (willing to talk) list.

Endoscopic surgery is still on the forefront on "new" medicine, which is why most docs don't tell you about it - it's also why most doc don't do it.  There are places like SBI and doctors like Dr. Shananian who do endoscopic, but those are the exceptions rather than the rules.  Some day in the future, that will probably change and many more places and many more docs will probably do endoscopic AN removal, but at the moment it's more cutting edge.  Those forumites who have had endoscopic AN surgery are very happy with their outcome.

You need to take the bull by the horns, be assertive and find a doctor who will listen to you.  I can help, if you let me.

Jan

[EJTampa]

Like Jan, I have not heard of any forumites here who have had a "bad" experience with SBI.  My decision was rather easy because I had a top notch neuro-surgeon practically in my back yard.
 
If the hospital stay is what concerns you, understand that everyone is different in that regard.  I had conventional surgery on March 5th and was home the evening of March 6th.  I got up and walked around the morning of March 6th, assisted at first, and pushed myself to recover quickly.  Others who have spent 3 to 5 days in the hospital have recovered just as fully and with no regrets, so it really doesn't matter how long the stay is.
 
Making the treatment type decision was the hardest part of this whole journey for me, so you once you come to a decision that you are at peace with, you will find the rest gets a bit easier .
 
Also - NO doctor can tell you that they WILL preserve what hearing you have left.  In many cases, it can't be done without leaving part of the tumor behind.  I was given a 60 percent chance (pretty standard number) of saving my hearing, but it did not work out.  I have adjusted very well to being SSD. 
 
The last thing that concerned me was the suggestion of having GK first to "shrink" the tumor, then surgery.  From my understanding, there will first be swelling due to the radiation, which can last a year or two, then the tumor (usually) dies and begins to shrink.  I don't understand why one would have GK and then surgery unless the radiation failed to kill the tumor, which is one of the risks.  On the other hand, I have heard of instances where a surgeon will leave part of the tumor behind to try to preserve facial function and hearing, then treat the remaining part of the tumor with GK/CK to kill what was left behind.  Hope that wasn't too much information all at once.
 
Ernie

[suboo73]

Hi Jazzdancer,

Sorry you have to be part of this crazy club, but SO GLAD you have joined this Forum!
Being frustrated - i know many folks here can relate to that. 
Recently, i expressed frustration to by GP doc regarding one of my specialists (not AN) - he said, '...then you need to go find another doctor.'
I believe the doctor is a not a 'bad' doctor; rather i want to seek other medical opinions instead of accepting one person's point of view as the only choice of treatment.  Does this make sense?

I agree with others - you need to find a doctor you can talk with, one that will listen to your concerns.  If hearing preservation is at the top of your list, then that is important to you and should be considered in your treatment options.
One more point - i live in Virginia, near DC with many specialists close at hand.  But, as i approach my 1st 1 year MRI, i can tell you i am not done with my research.
Interestingly enough, my sister is here too - she has been to one doctor, and that's it.

I hope you can funnel all that energy you are feeling and find a doctor/facility that is right for you.
My thoughts and prayers are with you during your AN journey.

Sincerely,
Sue

[gingerbread6]

Hi Jazz Dancer,

I feel bad that you are so frustrated and going through a hard time. I would consider all of your options and go for second, and third opinion until you feel comfortable with the drs. and what they have to say. I personally went for two opinions until I came to my decision. Look into House in California, that have a great reputation for an's and lots of people that post here can attest to that. I'm on the east coast in MA. and am having my surgery in December with Dr. Peter Black a neurosurgeon at Brigham and Women's hospital in Boston. He is the best choice for me. Research him on the internet. He has done over 5000 brain surgeries and is world renowed in his field. Make sure you are comfortable with these drs. and I wish you all of the best.

Gingerbread6

[ppearl214]

So now, I'm just gonna pray... relax and hope that I figure out what to do...

Hi jazzdancer and welcome... best game plan is what you noted.... continue to do your homework.... challenge the medical community as you have.... and to answer your question (why don't other surgeons explain the difference between endoscopic and open?).... possibly, because they don't know enough about it to educate their patients properly.  Yep, sounds good to me.

again, welcome... and hang in there.
Phyl

[leapyrtwins]

Jazzdancer -

are you still with us???

Jan

[Patti UT]

Wondering what happend to jazzdancer?  did she go to SBI???


patti ut

[Jim Scott]

Wondering what happend to jazzdancer?  did she go to SBI?

We may never know.

Unfortunately, a fair amount of AN patients that discover this website register and post, seek answers and then, having made a decision, never post here again, although a few have posted months after their surgery or radiation.  Some have poor outcomes and only post to vent their disappointment.  Some do well, often after a struggle, and post to update their recovery. 

This 'post-and-run' pattern seems to be inherent in support sites.  Some visitors only lurk and never post at all, some post infrequently, some post incessantly (Jim raises his hand)  but all are welcome.  Of course we would like to know what 'jazzdancer' decided to do and if she did choose endoscopic surgery, how it went for her.  Let's hope she returns to tell us.

Jim

[Patti UT]

I PM'd her as I'd like to keep an eye on SBI to see how endoscope proceeds over the next couple years

P.