Author Topic: Skull Base Institute - another tumor bites the dust  (Read 32911 times)

Chris

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Re: Skull Base Institute - another tumor bites the dust
« Reply #15 on: October 03, 2006, 10:59:36 pm »
That's really gross....but interesting. Am I right, the top shots are the AN before removal?
2.5cm AN diagnosed late 2005 and treated with fractionated stereotactic radiation in Sydney Australia Oct 2005

Obita

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Re: Skull Base Institute - another tumor bites the dust
« Reply #16 on: October 04, 2006, 05:08:36 am »
Thanks for the pics Chopper.  Breakfast is on hold for a little while  :P
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 Institute - another tumor bites the dust
« Reply #17 on: October 04, 2006, 08:43:34 am »
Sorry everyone...seriously.  It's gross I know.

Top shots are indeed of the tumor (aka, "the chicken nugget", or just "the nugget") before they started picking away at it.  The twig looking thing is the "stalk" of the tumor, I guess the main blood line or whatever.
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.

Chillin (literally) at 76-32N 068-45W 77M in Kalaallit Nunaat

matlida

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Re: Skull Base Institute - another tumor bites the dust
« Reply #18 on: October 06, 2006, 07:33:04 am »
You know it's a wonder than can find anything when they look at that  LOL 
Glad to hear you are doing so well...Amazing!

SuzeAN

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Re: Skull Base Institute - another tumor bites the dust
« Reply #19 on: October 06, 2006, 11:44:01 am »
That was very interesting, and that was done with a dime size incision?

Glad to read all you have to share here, it was very informative. 

Cheers,
Sue (Las Vegas)
2.5 cm, left side
CK-Barrows 10/05

chopper

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Re: Skull Base Institute - another tumor bites the dust
« Reply #20 on: October 07, 2006, 07:57:21 am »
Dime size hole, yup.  The scar is a bit bigger than I thought it would be, but nowhere near what you see on some folks on here.  I'll post some pice of that too here shortly.  Other than the incistion scar, there is one little patch on the back of the head where they had me in a vise or something that took a chunk out, but it's not bad at all.
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.

Chillin (literally) at 76-32N 068-45W 77M in Kalaallit Nunaat

chopper

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Re: Skull Base Institute - another tumor bites the dust
« Reply #21 on: October 09, 2006, 10:12:18 am »


A shot of the incision 48 hours after surgery.  Way smaller than anticipated.
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.

Chillin (literally) at 76-32N 068-45W 77M in Kalaallit Nunaat

Obita

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Re: Skull Base Institute - another tumor bites the dust
« Reply #22 on: October 09, 2006, 10:21:31 am »
Chopper:

That is incredible.  My what a small incision you have!!  8 staples?  I must have had 50.

How is work going?  Does the cold bother your head?

Thanks for posting that picture.  WOW.

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

suelay

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Re: Skull Base Institute - another tumor bites the dust
« Reply #23 on: October 09, 2006, 12:22:28 pm »
Your scar and recovery are amazing.  I am doing super well at 2 weeks to the day post-op but did have some slight facial weakness at about 9 days post-op that should resolve itself at some point.  My incision makes yours look super tiny.  I have the classic retrosigmoid--32 staples, but it doesn't bother me as my hair completely covers it.  I have to admit it would be nicer to have a smaller cut--as I have numbeness, tingles, etc around the incision and mine goes down my neck a little more than most I have seen.  Anyway, here is my question.  There is always a down side.  What are the downsides to your procedure?  It is interesting that in all the doctors I talked to officially and unofficailly not one mentioned your procedure as an option for me despite my willingness to go anywhere.  Just curious and it might be helpful to those who are still in the decision-making stage.  I hope you arent' doing too much at work.  You are young and strong, but you still have been through major surgery.  Take care.
L AN 16 x8 x8 mm
Retrosigmoid at Mayo Clinic Drs. Link and Driscoll on 9/25/06
Very good result

chopper

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Re: Skull Base Institute - another tumor bites the dust
« Reply #24 on: October 09, 2006, 01:07:56 pm »
Chopper:

That is incredible.  My what a small incision you have!!  8 staples?  I must have had 50.

How is work going?  Does the cold bother your head?

Thanks for posting that picture.  WOW.

Kathy
Thank you everyone for the kind words.  My only hope is that it helps to inform others who are in our situation or gives them another option to explore for treatment.

Cold...not at all, so far.  Then again, it's not cold yet here...15 above for today’s high is nothing to the -20 on average winter will bring.

suelay - Numbness and tingles around the incision area? Wow, that's unreal. 

I did bring up the endoscopic procedure with other docs, on my own though.  They never mentioned it freely; one even said it was still too experimental.   In all of this, one good lesson has come out of it.  It counts to explore every option and research the hell out of what your options are. 

Coming out of this, it is now my belief that docs know what they know and some treat people like a business interest.  They want to work on you yes, but a majority seem stuck in their ways so to speak and almost hostile to the competition at times.

Downsides to the procedure?  Everything that is possible with the traditional approach can happen with this method, though the chances are far greater with the traditional method.  The doc said to expect some facial weakness and a possibly dryer than normal eye for a few months.  Thankfully that wasn't the case.  I think the best thing overall is just that this method does not destroy or remove any of the inner workings of the ear and leaves the nerves intact vs. cutting.  The damage that is done is done by your body and not compounded by the surgeon (again, potentially...not knocking ANY doc at all).

brucifer - I had to front 11k out of my pocket....ouch. The procedure is 60k.  The way it was explained to me was that it was to secure a private room at the surgical/recovery center and if insurance won't cover it, you're only responsible for like 20k, to which the 11 counts to.  If things work out with the insurance, you will receive a refund.  Strange way to do things? Uhhhh, yeah.   My insurance company at the time covered it and it counted as an in network facility.  So far I haven't gotten a bill yet, just a statement for the pre-op MRI, which was fully covered.
« Last Edit: October 09, 2006, 01:49:55 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.

Chillin (literally) at 76-32N 068-45W 77M in Kalaallit Nunaat

hruss

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Re: Skull Base Institute - another tumor bites the dust
« Reply #25 on: September 15, 2008, 02:10:52 pm »
hi everyone,
i followed Chopper's advice and I did consider the SBI and the endoscopic neuroma surgery - it really sounds interesting and looks it is healing faster than usual because of the small incision.
So I have been in touch with HEI, LA, Hannnover, Germany and now i just called SBI (here in Bulgaria we are 11 hours ahead so it is good that whenever i call in the late evening here, the day just starts in LA.)
SBI were supportive and tried to help me which i really appreciate. Roxy, the nurse i talked to turned out to have a Bulgaria descendent (her mom is a Bulgarian) so she really sorried for me when i told her that i cannot afford the HUGE twice or even more expensive than the HEI traditional intervention - translabyrinth. SBI told me that my surgery will cost between 135,000 and 150,000 USD everything included. Plus i have to pay 750 USD to have a telephone consultation with Dr Shahinian.
Being on the path of saving money and asking all my friends for donation i would roughly get to 80,000 USD. The healthcare system here is crappy and they pay for me if i treat abroad, in case that this procedure could be performed in Bulgaria. Good but i already had two retrosigmoids and they were partial. They still claim that there are neurosurgeons that can perform he ultimate debulking and so won't pay for me. In this case i have to finance a surgery abroad by myself and i would hardly get to HEI cost of the surgery plus it's post op costs let alone SBI.
SBI sounds good but if your insurance covers it!
I just wanted to share my experience and hope this will help others in the watch and wait status!
PM me or write here and i will answer all your questions!!

All the best,
Hrissy
4.5cm right AN pressing on the brain stem, dn Sept 2007
2 Retrosigm surgeries in Oct 2007 and Jan 2008 by the Bulgarian prof. Kyrkeselian partially removed.
3rd retro surgery in Hannover,Germany by prof Samii, Oct 2008. SSD
Got rid of my bugger, temp facial paresis
hrissysexperiences.blogspot.co

shamalec

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Re: Skull Base Institute - another tumor bites the dust
« Reply #26 on: October 28, 2008, 12:17:52 pm »
hello chopper!

great to hear you are recovering so well after your surgery at SBI.
I had heard about them and looked at their website for my sister's surgery, actually, which we've spoken to the doctors at House Institute about. I'ts been a long journey and we really really need to get her tumor out soon and her case is somewhat rare because what she has is an hemangioblastoma tumor (not an actual AN) which bled, but it's in the place where AN's grow.

Can you please give me the name of your Doctor at SBI so i can try and get an opinion from him?

thanks and best of luck,

sincerely,

shamalec

chopper

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Re: Skull Base Institute - another tumor bites the dust
« Reply #27 on: October 28, 2008, 01:16:30 pm »
Not a problem!   

The doc who did the work was Dr Hrayr Shahinian, as far as I know, he's the #1 guy, possibly the only one that does the work for the outfit.  I initially sent in an email consultation request via the website and got contacted by the staff, then him when the scans were recieved and reviewed.  I will warn you though, you will have to pay up front for the consult (unless that has changed since I was there...now 2 years ago).
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.

Chillin (literally) at 76-32N 068-45W 77M in Kalaallit Nunaat

shamalec

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Re: Skull Base Institute - another tumor bites the dust
« Reply #28 on: October 28, 2008, 09:54:09 pm »
great! thanks for the info.

thank you for posting the photos by the way, it is really helpful to see what these scary things look like in real light! really happy for you!

chopper

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Re: Skull Base Institute - another tumor bites the dust
« Reply #29 on: October 29, 2008, 11:07:21 am »
They're not connected in any way that I'm aware of.   The Dr Shahinian (and actually a doc on my last follow up MRI) mentioned that the methods used by HEI were pretty brutal by todays standards and the available technology.  The SBI office was located in one of the cedars medical towers in Beverly Hills I think, the facility used for surgery and recovery was Brotman medical center.  Not sure if House uses the same places or not, maybe that's where the connection is?
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.

Chillin (literally) at 76-32N 068-45W 77M in Kalaallit Nunaat