Author Topic: SKull Base Possibility  (Read 50512 times)

ixta

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SKull Base Possibility
« on: November 07, 2006, 09:36:24 pm »
I am aimimg for SBI, but am totally turned off by patient care there.
Roxy seems so busy, Matt seems so doing other stuff that I believe I am a hindrance to them.

One feels guilty asking about prices, such a "oh well we have people from all over the world that come here" attitude, that one feels like soo out of style and too poor to even try.

I feel as if I need to get my poodle to the groomer in Beverly hills right away after talking to them.

Any experiences and how to get a straight answer?

I have thoroughly read the posts that eron and chopper have put up and even talked via phone with one of them.

I am about to send real film xrays to Dr. Jho to get an opinion, or throw in the towell and get the traditional chopjob.

I even asked the ceo of this site on the phone about Endo, and she said "No comment", but I can comment on radiosurgery"

I had a free consult with top endo neurosurgeon at ucla already and it was free.

My consult with SBI was pricey and he was on his cell phone on the way to the airport.

Endo work is done in Korea, Canada, Cuba, but here? wtf is going on? :'(
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

Battyp

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Re: SKull Base Possibility
« Reply #1 on: November 08, 2006, 07:50:10 am »
I know chopper had great results but..will tell you from experience.  If you are not comfortable with the staff and treatment you better look elsewhere.  My first consult kept me in the dark..what was routine for them was not for me.  I did ask price and got a vague answer which upset me more than the surgery.  I'm a single mom who was trying to plan what I needed to do. They neuro guy was too busy to do my phone consult, just expected me to show up on Fri for pre op and surgery on Monday.  I walked away and went elsewhere.  I have since heard from others who went the first route I was going and did not do well.  Which convinces me I made the right choice.

How big is your AN?  Endo is less favorable as if there are complications they can not get you opended fast enough to fix it.  I'm not that big of a risk taker  ;)  I know Chopper did great, he's back to work in his brrr cold place.  I'm sure if you email him directly if he can he'll answer you.  You deserve to get the answers you seek without attitude, and to get treated like you matter and are royalty!  After all it's not a minor surgery.

All my best,
M

eronrabun

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Re: SKull Base Possibility
« Reply #2 on: November 08, 2006, 11:32:20 am »
You may try the "California attitude" - Tell them exactly what you said in the previous post.  Tell them you have questions & need assistance.  We did not have problems getting any answers from them (a year ago), but we were probably a little pushy/desperate.  As you have read, we too, were broke (college kids with no real material possessions) but when we considered that it was my husband's life on the line, cost was no longer an issue.  I completely understand the money issue...luckily our insurance finally came through for us.  We fought them long and hard.  Again, that was just our experience.  Please don't do anything you dont feel comfortable with.  Just a tip... you may ask them what would be the total cost if insurance pays nothing.  The price difference was huge for us & helped us make up our mind - although prices may have changed now.

Best wishes!! 
-3cm acoustic neuroma "size of an egg"
-pressing on the brain stem
-50/50 chance of severe side effect with "traditional surgery"
-chose "endoscopic procedure" by Dr Shahinian in Los Angeles, CA instead of traditional one
-wouldn't change ANYTHING!
-results are amazing!!!

ixta

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Re: SKull Base Possibility
« Reply #3 on: November 09, 2006, 12:09:01 am »
My ENT said the MRI measured 3.0, Dr. Mangham at seattle ear states larger.

Dr. Shahinian at SBI said a "grade 4" large tumor.

Dr. Jho asked me to get film and I looked at them and bout S#@$ my pants. It looks huge on film.

I set up a site like Enron did

http://www.thestatus.com/index.cfm?fa=patient_login&sid=0

h

biologyfly06


I have a tentative date for 11/27.
I guess according to Matt, the Main assistant, they stopped using Cedar Sinai as a operation place due to problems with sterilization.
They now use the Brotman center in culver city. Chopper, did you have your s taken out at the Brotman?

http://www.brotmanmedicalcenter.com/

I did a search for Shahinian and found.

RE: Hrayr K. Shahinian, M.D.


To Whom It May Concern,

Membership to the Medical Staff of Brotman Medical Center is contingent upon compliance with the Bylaws, Rules and Regulations of the medical staff and satisfactory participation in duties and responsibilities of the medical staff as assigned.

Please note the following information concerning the below referenced practitioner:

Physician
   

Hrayr K. Shahinian, M.D.

Specialty
   

Skull Base Surgery

Appointment Date
   

01/25/06

Inactive Date
   

Staff Category
   

Provisional

We are not aware of any information that would preclude recommending this practitioner for appointment/reappointment in your organization. This practitioner has not been the subject of a disciplinary review, has not had his license suspended and we have not filed and 805 reports with the Medical Board of California or adverse reports to the National Practitioner Data Bank. We are not aware of this practitioner having any health/mental condition, which limits or impairs his clinical competence. All members of the Medical Staff are evaluated through established criteria-based medical staff monitoring activities.

Sincerely,

Medical Staff Services

His whole resume is on Cedar Sinais site.

I am sure he is great in person.
It is just Clinic staff is a turn off,
I was angry once and made it known directly by hanging up. I was renewed with a major PR repair phonecall from thier top staff.  It was due to, Their secretary, (the one that answers now) had me on hold for five minutes listening to elevator music... I work at an office too, I was able to put the music on the speaker phone while I used another phone to call them. HA!
WHAM ANSWER< SBI may I help you? Hey, you guys have me on the line listening to music, is The nurse there, "Oh just a minute here she is, she's on her cell phone"--Hi Mr. How can I be of assistance"?

Just the other day, I called down, and again, felt like I was being a hindrance because the person I needed- expressed having to leave an important meeting to talk with me, as if I were a bum on the street.




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

chopper

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Re: SKull Base Possibility
« Reply #4 on: November 09, 2006, 08:52:26 am »
I did have mine done at Brotman, which is a good thing since they are in my old insurance network.  An older facility, but not bad overall.

I agree with your concerns on the part regarding the staff.  They are indeed busy as hell, this I saw first hand.  Before going out there, I had to hound them a little bit to get answers in order to make flight plans, hotel arrangements, etc.   They did come thorough though, it just took a little pressure, and a little longer than I liked.  From what I saw though, the office staff are minimal, and work hard with a lot of other duties aside from answering the phones.  Still though, simple solution would be to get more staff in there.

After talking with the Dr., as well as the staff in person, what you see as an attitude I saw a little different.  The doc is extremely proud of his work, and very confident in what he does.  No doubt about that.  Once you're in the process of getting things done, the paitent care, aftercare and his bedside manner are exceptional.  He's confident and firm in getting what is right for you.  Hell, he even *****ed at me for not sleeping as elevated as I should have, and explained why in a frim but "hey, I actually give a damn about you" tone.

Food for thought in regards to the initial vibe you got:

I initially made an appt at Johns Hopkins..and they were worse!  It took them weeks to get back to me to schedule an appt just for a consult, even after calling multiple times to get answrs.  Good thing I had time to burn.  Even after canceling the surgery date, I continued to get paperwork and letters from the docs on how they looked forward to cutting me...er....working with me.  For a top rated hospital neuro unit, wow....just...wow.  You'd think they'd have their stuff together a little more.

Most importantly, don't give up!  Do what you know will be best for you, and it will take time.  Took me well over a year to settle on a doc and make plans.  You will thank yourself in the end for all your hard work.
« Last Edit: November 09, 2006, 08:54:40 am by chopper »
3+cm AN, hit the chopping block 5 Sep 06 at the Skull Base Institute

Was 4.5cm at it's largest point, completely removed.  All motor functions normal.  Only complaint is SSD on the left side, which was expected anyway.

ixta

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Re: SKull Base Possibility
« Reply #5 on: November 09, 2006, 01:59:07 pm »
Christ I am trembling.

not more than five minutes ago I was on the phone with them trying to get some concrete information about the transfer of the 11, grand, bank account info, pre op surgery clearance, etc, and RACHEL said, "roxy will be in tomorrow", I pleasantly voiced my concern about being given the run around, no phone calls and stated that it seems I am a hindrance to the work of SBI. Rachel seemed upset that I had already gotten pre op onfo driectly from Roxy, and I told her that I just had my blood work done. It seems that I have been ahead of the game by networking directly with Roxy.
 She pleasantly said curt and sweet, "it looks like then, for now on our manager will be taking care of your case" AND THEN HUNG UP ON ME!!!!!!!!!!!!!!!!!!!!!!!! :'(
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

ixta

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Re: SKull Base Possibility
« Reply #6 on: November 09, 2006, 02:16:18 pm »
ya I am jumping out of the loop on this one.
as far as I am concerned, bridges are burned with two specific staff there.

I'm going deer hunting to get my mind off "things" for a couple days.

We were looking at staying at places near the brotman, and venice beach is close which is cool.

I can go to the beach and hear the ocean for the first time with one ear. what a thrill :-[

Chop, where did you stay ?
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

ixta

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Re: SKull Base Possibility
« Reply #7 on: November 09, 2006, 04:21:14 pm »
BOOM, 30 mins ag0-damage control PR phone call from Shahinian's right hand who was in DC spent a good 30 mins with me patching things up.
She is personaly taking over my case.
Apparently mine is a priority case since most people schedule these removals 6-7 mos in advacE?!
and they are juggling schedules.

Will keep you updated as info comes.. :D
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

chopper

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Re: SKull Base Possibility
« Reply #8 on: November 10, 2006, 12:48:39 pm »
I want to say it was an Extended Stay suite in the Manhattan Beach/El Segundo area.  It was a bit of a drive to the SBI office, but close to Brotman, which is what really counted.  Awesome Japanese restaraunt nearby named Taiko, grocery store and whatnot very close also.

If soft beds are your thing...that place is perfect.  Unfortunately, they gave me the worst back pain of my life.
3+cm AN, hit the chopping block 5 Sep 06 at the Skull Base Institute

Was 4.5cm at it's largest point, completely removed.  All motor functions normal.  Only complaint is SSD on the left side, which was expected anyway.

ixta

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Re: SKull Base Possibility
« Reply #9 on: November 18, 2006, 02:49:18 pm »
I fly down to LA this Tuesday. Preop meeting this wed. and since they are closed for thanksgiving th and fr, sat sun, operation not until 5am the following monday.  :'(
I'll keep you updated on how the meeting wed goes.

I was able to get preop blood tests and h and p done up here. Lets hope they don't do more..

Chopper-Eron--you both mention serious leg pain post op due to the way shahinian had you on the operating table.
What can I ask him to do in order to reduce post op pain?

Place pillow under hip? between legs?
Do they place you in a chair?
if thats the case. my sciatic nerve will be cutoff for a long time..
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

Obita

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Re: SKull Base Possibility
« Reply #10 on: November 20, 2006, 07:29:26 am »
Good luck ixta!! 

I am heard many, many good things about SBI and the "endo".  A dime sized hole sounds
good to me.......

Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

chopper

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Re: SKull Base Possibility
« Reply #11 on: November 20, 2006, 03:22:50 pm »
Chopper-Eron--you both mention serious leg pain post op due to the way shahinian had you on the operating table.
What can I ask him to do in order to reduce post op pain?

Place pillow under hip? between legs?
Do they place you in a chair?
if thats the case. my sciatic nerve will be cutoff for a long time..

I don't know what can be done to help with that.  I suspect I was on my side and positioned in a way that a decent amount of pressure/body weight was on the outside of my leg for the procedure.  Some sort of cushion may help out though. 

For me, the leg pain was not too bad, the back pain from the hotel bed was the killer.

Let us know how the preop meeting goes!
« Last Edit: November 20, 2006, 03:25:43 pm by chopper »
3+cm AN, hit the chopping block 5 Sep 06 at the Skull Base Institute

Was 4.5cm at it's largest point, completely removed.  All motor functions normal.  Only complaint is SSD on the left side, which was expected anyway.

ixta

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Re: SKull Base Possibility
« Reply #12 on: November 22, 2006, 03:19:19 am »
woot! I just got into LA tonight and back from Dennys Culver City.

The brotman is around here, tomorrow we are getting a rental car and preop meeting at SBI, hopefully can talk to Shahinian directly!

I will ask about the leg pain issue, ask him to put pillows or have someone do range of motion 1x an hr! but not as he is operating! oops, we bumpt the cerebellum!

I have preop tomorrow, then its four days in LA.

http://www.thestatus.com

h

biologyfly06

for updates. updated pix soon
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

ixta

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Re: SKull Base Possibility
« Reply #13 on: November 23, 2006, 01:36:08 am »
Well I just had my pre op today with Shahinian, Roxy, and Matt Rivera.

We were a little worried trying to find the place. Thinking there would be a SBI NEON sign out front, it was tucked away in a tall tower with a bunch of other medical related business offices.

I actually learned something today also.

I always thought that feeling in my face, the numbness in my lip, the metal taste, or tingly nose was resulting from the tumor pressuring on my facial nerve.

Shahinian made it clear that facial nerve is STRICTLY MOTOR..movement and such.
an TRIGEMINAL http://tinyurl.com/w3tbt NERVE is SENSATION, TASTE, FEELING.
So the tumor itself has grown large to compress the trigeminal nerve.
I may have to post pix later cuz i forgot my US?B cable!
I have more info bout the visit on thestatus


h biologyfly06
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

ixta

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Re: SKull Base Possibility
« Reply #14 on: November 24, 2006, 01:26:32 am »
Hell, he even *****ed at me for not sleeping as elevated as I should have, and explained why in a frim but "hey, I actually give a damn about you" tone.

Food for thought in regards to the initial vibe you got:



HA! He was direct during my preop, which I respect-regarding the relationship. He stated, "you will get to know me and I will get to know you rather intensely".
I mentioned I heard about a previous patient he balled out for not sleeping the 45 degrees-he chuckled

pd me off though the morning of the meeting-(we had gotten in from out of state at midnight)-got a call from Katie-secretary 8am in the hotel-"can you guys make it in around 1130 instead of 130? I politely said no.-you guys said 130"

I am sure it was because the Dr. had something to do -(day before turkey day)-or because they could only get the notary at that time.

We get there and Roxy told us they did not have a Notary.."could not get one"-since day before turkey day perhaps..

The room had major dust on the table but it was cleaned, and the meeting started right away.
« Last Edit: December 06, 2006, 12:24:20 am 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