Author Topic: Skull Base Institute Consultation  (Read 9022 times)

acabitz

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Skull Base Institute Consultation
« on: March 31, 2009, 04:33:41 pm »
Hello to all.  I just wanted to get back with everyone like I said I would.  My wife and I flew back to Atlanta last night from Los Angeles.  We consulted with Dr. Shahinian at his office, 1170 West Tower, at Cedars.  Dr. Shahinian is both polite and professional.  We spent about 30 minutes going over what exactly would happen at the S.B. Institute.  Basically, Dr. Shahinian is performing an Acoustic Neuroma removal using endoscopic tools.  It's less invasive, faster, less chance for complications, and faster recovery time.  One of the statistics that stood out was that he said in a traditional TRANSLAB approach, it would take a neuro team about 4-5 hours just to drill out a hole in the skull big enough to perform their procedure.  At SBI, Dr. Shahinian is at the tumor site within 15-30 minutes! 
I know many of you folks in the forum have had some of the more traditional approaches and I have nothing against these procedures.  I just feel that at this day and age, with the kind of tools and technology we have, this is the standard for where our neurosurgical teams should be.  To be able to perform this surgery safely, with minimum risk to the patient, to have much better statistics for recovery and a faster recovery period. 
SBI has performed over a thousand Acoustic Neuroma removals. My main concern is going to be facial nerve paralysis.  Dr. Shahinian told me he has never had a single patient that had permanent facial paralysis.  I'm going to wrap this up.  There are others on this site that have nothing but positive things to say about SBI.  During my research, I haven't found any problems in regards to surgery aspects performed here.  I'm personally leaning on having my surgery done here, it feels like the best option for me.  And that's what this is all about.  Going with a surgery that feels best for you.
I hope this entry helped some people in the forum.  I'm not the best communicator when it comes to putting thoughts down via computer.  I'm sure I missed some important points so feel free to ask me anything if you want to.  I'm beat.  Be well.

EJTampa

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Re: Skull Base Institute Consultation
« Reply #1 on: March 31, 2009, 04:49:11 pm »
Acabitz,
 
Congratulations on chosing your method and physician.  Barring any rare complications, you've just completed the hardest part of the AN journey.  Researching options and becoming comfortable with just one was the most taxing part for me.  Waiting for the day to come was probably the second hardest part :).
 
I'm surprised it takes 4 to 5 hours to drill a hole for translab, but I had retrosigmoid, and the entire surgery was only 4 hours :).
 
Now that you have made the decision, do you have a date set yet?
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

microsoftfree

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Re: Skull Base Institute Consultation
« Reply #2 on: March 31, 2009, 04:51:51 pm »
Awesome! If I have one and am able to wait for surgery, we all might be amazed at what the docs can do. Will be anxious to follow your journey. You must feel a little relief having made yet another decision.

Becky

allegro17

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Re: Skull Base Institute Consultation
« Reply #3 on: April 01, 2009, 09:30:02 am »
acabitz,

I am so glad to hear your consultation went well!  And it is nice for me to hear you had a good experience at SBI and meeting Dr. S.  The more positive things I hear keep reinforcing my decision to have my surgery there, so I have to thank you for doing ME a huge service by posting this! :)
My head was so foggy and cluttered during the 2.5 months it took me to make a decision.  Now that it is made, I can support all those who have already said that going with what feels right for you is the best thing you can do, especially in this difficult scenario where there are no right or wrong answers! There are many great surgeons of all sorts for ANs, and each has something unique to bring to the table.  The decision is personal and it sounds like you know what is important to you!  I am amazed at your ability to sort through things as quickly and clearly as you are.  That's HUGE!
I chose SBI for the very reasons you discussed in your OP.  In the end it's what I felt fit "me" the most.  I hope you will keep posting as you move forward!

All the best,

Laura

TOM101

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Re: Skull Base Institute Consultation
« Reply #4 on: April 10, 2009, 05:50:16 pm »
Thanks for your coments. I live in the L A area and I just read a post about the S. B. institute last week. I am a watch and wait but I am going to make a definate decision by september after the symposium in Chicago. I was determined to go Gk or Ck but this is beginning to sound much better. I like the idea of no AN. I am not too sure about waiting 6 mo or more to find out after radiation that I am going to start having nerve or balance problems.
I'm also looking into the Da Vinci Robotic Surgery System which would be the net step from S.B. and even safer.

leapyrtwins

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Re: Skull Base Institute Consultation
« Reply #5 on: April 11, 2009, 02:45:15 pm »
I know many of you folks in the forum have had some of the more traditional approaches and I have nothing against these procedures.  I just feel that at this day and age, with the kind of tools and technology we have, this is the standard for where our neurosurgical teams should be.  To be able to perform this surgery safely, with minimum risk to the patient, to have much better statistics for recovery and a faster recovery period. 

Acabitz -

thanks for your thoughts on SBI - those on the forum who had their surgery there definitely have great things to say about Dr. Shahinian and the endoscopic approach. 

I am one of those who had a "more traditional approach" and had an excellent outcome - including no permanent facial paralysis - so I can't really say I would have chosen the SBI approach if I had the choice.

I can't agree that endoscopic AN surgery "is the standard for where our neurosurgical teams should be" because it's still a relatively new surgical technique for ANs.  But I think that with time, and more of these procedures being done - by more docs than just Shahinian, endoscopic AN surgery definitely has a great chance of becoming the norm.

Tom -

lots of us will be in attendance at the symposium.  I'd be interested to see what some of the docs think about endoscopic surgery both today and in the future.  If there is any time for "open questions", please ask about endoscopic AN removal.

Thanks,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: Skull Base Institute Consultation
« Reply #6 on: April 11, 2009, 03:30:39 pm »
Acabitz ~

Thanks for the update on your recent consultation with Dr. Shahinian at the Skull Base Institute.  You were obviously very impressed and for good reason.  I agree with Jan that endoscopic AN removal surgery is extremely promising but not quite yet "the standard for where our neurosurgical teams should be".  Just as irradiation procedures needed years of use and thousands of successful patient outcomes to be accepted by the AMA and the public, in general, so does endoscopic AN removal surgery.  I believe it is very promising and will very likely be the new 'standard' for acoustic neuroma removal, in time, but that will take awhile as the professional medical community is always slow to accept new procedures and so are the public.  No one wants to be a 'test subject'  for this kind of serious, delicate surgery that can sometimes have negative ramifications.   I believe that Dr. Shahinian and his colleagues are definitely pioneers in applying endoscopic procedures to AN removal surgery.  If SBI can keep producing success stories, endoscopic AN removal may well become the 'standard' - and the future - of AN removal surgery. 

Meanwhile, understanding that Dr. Shahinian was promoting his facility and his services and naturally was highly positive and optimistic, I believe he was being honest with you.  I congratulate you on your decision and I not only hope but will pray that your endoscopic AN removal surgery is completely successful.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Tumbleweed

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Re: Skull Base Institute Consultation
« Reply #7 on: April 11, 2009, 10:01:40 pm »
Acabitz:

Congratulations on making your decision and best wishes for a successful operation and fast recovery. I'm always grateful and eager to hear about endoscopic surgery at SBI. I agree this is an intriguing approach that brings fresh hope to all people with ANs.

I was surprised to hear that Dr. Shahinian has removed over 1,000 ANs. Seeing as endoscopic surgery is fairly new, I wonder if all 1,000 removals were done using this technique or if some were done using earlier technologies.

TOM: what is the Da Vinci Robotic Surgery System??? I've never heard of that before.

Best wishes to all,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

leapyrtwins

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Re: Skull Base Institute Consultation
« Reply #8 on: April 12, 2009, 09:18:14 am »

TOM: what is the Da Vinci Robotic Surgery System??? I've never heard of that before.

I have.  They just got one in some hospital near me - I can't recall which one.

I didn't know it was being used for AN surgeries though.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: Skull Base Institute Consultation
« Reply #9 on: April 12, 2009, 01:46:09 pm »
FYI:

Here is the da Vinci website link: http://www.davincisurgery.com/index.aspx.

They carefully note:  "While clinical studies support the effectiveness of the da Vinci® System when used in minimally invasive surgery, individual results may vary. Surgery with the da Vinci Surgical System may not be appropriate for every individual. Always ask your doctor about all treatment options, as well as their risks and benefits". 

Maybe I'm just old school but I'm not sure if I want a robotic arm cutting into my skull and manipulating my brainstem, even if it is guided by a surgeon.   

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: Skull Base Institute Consultation
« Reply #10 on: April 12, 2009, 09:18:31 pm »

Maybe I'm just old school but I'm not sure if I want a robotic arm cutting into my skull and manipulating my brainstem, even if it is guided by a surgeon.   

I second that emotion  ;D  Old school, or not.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

ixta

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Re: Skull Base Institute Consultation
« Reply #11 on: May 04, 2009, 09:08:30 pm »
Hey Acabitz, I am an old Shahinian Veteran. I agree with you , and ya had to deal with the old school surgeons telling me to be wary of it. "what if you get a bleeder, etc. I believe if most people could choose between endo heart surgery or chest spreader "old school", they would choose endo if they get the same results. endo is the future.

I have a video of my actual surgery from November 2006, ask Shahinian to save images and the movie on a disc for you.

Excuse the context of the film, I have dark humor around my tumor issue and dealt with it in my own way knowing I was going to lose my hearing.

I made a blog about my dx and  recovery and the film can be viewed here.http://www.killkuato.com/blog/?page_id=880

There are images also of the procedure on the site.  Feel free to browse around.
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« Last Edit: May 04, 2009, 09:28:52 pm by ixta »
5cm left AN from IAC to cerebellum/brainstem.
Zapped out by Shahinian @ SBI over the course of 6.5 hrs on Monday 11/27 2006.
thestatus.com   h   biologyfly06

MissMolly

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Re: Skull Base Institute Consultation
« Reply #12 on: May 08, 2009, 12:18:30 pm »
I agree with Jim's comment about newer procedures requiring time to be perfected.  I had lengthy discussions about Skull Base and endoscopic surgery for ANs with both my GP and neurologist.  GP likened it to the early days of laporoscopic surgery for gall bladder removal.  Although now it is quite a common procedure, she recalled numerous patients of hers in the 'early days' having multiple complications.  So, I hear you there, Jim. 

Another aspect of the endoscopic procedure that the neurologist made me aware of, that I hadn't considered, was that the endoscopy is a two dimensional image of the tumor, its position and attachment.  Traditional surgery would provide a better 3D view (looking above, below, moving things for a better perspective) of the tumor, allowing better decision making by the surgical team when it is being removed.  For me, that was key information as I am still hoping to have a chance of preserving at least some hearing in that ear after surgery. 

So, while I've been making my decisions regarding surgery, I feel like I have the pros and cons of both types of surgery.  The endoscopy is certainly an appealing choice as it definitely less invasive and recovery is speedier, but the cons as well as the pros must be fully explored.

Also, with every surgeon, it's important to check their credentials and do your research on them.  I firmly believe that, for me, I want someone with an excessive and impeccable background in neurosurgery poking around in my head.  :-) 

Miss Molly
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.

jerseygirl

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Re: Skull Base Institute Consultation
« Reply #13 on: May 08, 2009, 01:31:38 pm »
Hi, Miss Molly,

You definitely got the right point here: moving things for better perspective. The only problem with it is that it's your BRAIN that the neurosurgeon has to move to get a better perspective. Brains don't like to be even touched, let alone moved, and they often go into shock afterwards for months before they start working again. That is why sometimes people complain about poor memory and attention as well as mood swings after AN surgery when the neurosurgeon tells them that the area operated on is nowhere near where attention, memory and moods lie. Also, in order to move the brain out of the way, the surgical opening  has to be larger which can create chronic pain, increased risk of infection and other long-term problems.

I have been through a monstrous, long traditional surgery at 25 and endoscopic one at 44. There is absolutely no comparison between the two. After the second one, which was in my case painless, my memory was unchanged, I could maintain attention, and , despite the fact that my mother was dying in hospice, I did not suffer from mood swings and managed without Prozac. I woke up on time, could read, watch TV, process any information, be it spoken or written, paid bills on time, remembered everything I had to do, etc.. After the first one I did suffer from forgetfulness, poor attention and mood swings. I don't think I would have survived without Prozac. Funny, I had plenty of moral support at that time but not so after the second surgery. So, please think about this "moving around for better perspective" when you consider pros and cons of traditional vs. endoscopic surgery.

Another advantage to endoscopic surgery is that  the endoscope can go anywhere, any distance and any hard-to -reach space because it is a long instrument. That means less chance of regrowth because the tumor pieces were not noticed during the surgery or impossible to get to. I obviously suffered a regrowth and when it was officially pronounced one, my original neurosurgeon told me that he left a piece there because "it was hard to reach". Endoscopic surgery lessens that chance, if not eliminates it altogether. It is not so much an issue for you because your tumor is small but my tumor was long and irregularly shaped and access was an issue. Some neurosurgeons did not even want to operate. Needless to say, I am very pleased with the outcome and the whole endoscopic route I took.

           Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

MissMolly

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Re: Skull Base Institute Consultation
« Reply #14 on: May 08, 2009, 05:09:59 pm »
Hi Eve,

I am very glad to hear from a "been there, done that" ANner who has experienced both types of surgery!  The retrosignoid surgery was a pretty creepy proposal to me when I read about the surgeons having to push the brain to one side.  I have spoken with several people who have had these procedures and most have done all right.  One or two have residual effects from the surgery to this day.  Of course, this concerns me, which is why I contacted the SBI.  I haven't had a consultation with them at this point, but am still considering them.

Glad to hear that your endoscopy went well.

Miss Molly
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.