Author Topic: Why are some folks NOT eligible for a Fried Brainbooger? (gamma knife)  (Read 5032 times)

Debbi

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Re: Why are some folks NOT eligible for a Fried Brainbooger? (gamma knife)
« Reply #15 on: March 26, 2008, 01:25:01 pm »
HI Mary-

Your doctors will be your best guide on this - that being said, I was told by thee different docs (two of whom do both radio and microsurgery) that radiation was not a good option for me because of the way Ethel was growing and that she was pushing into my brain.  For the same reason, my chances of hearing preservation are slim to none, so translab seems like the way to go. 

I think, as everyone here has said, each tumor has to be considered "on its own merits" as to what treatment/s is/are appropriate. 

I can share with you that, when I first got diagnosed (a mere three weeks ago - wow!) my first inclination after a little reading was that I wanted radiation.  The first doc who told me that it wasn't an option kind of took the wind out of my sails - but you adjust and you keep learning and eventually (sooner or later) you find an option you are at peace with. 

Keep doing what you are doing - learn, ask questions, learn, ask questions.  And let us all know how it goes!

Debbi - digesting a great Indian meal in NJ!
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Jim Scott

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Re: Why are some folks NOT eligible for a Fried Brainbooger? (gamma knife)
« Reply #16 on: March 26, 2008, 02:47:02 pm »
Just popping in to add the observation that 'debulking' of large AN's followed by FSR treatments to destroy the remaining AN's DNA is becoming popular.  I had this procedure in 2006 and it was quite efficacious.  My 4.5 cm AN was 'cut down' via microsurgery to about 2.5 cm and the blood supply was cut off in the process, as intended.  Then, three months later, I underwent 26 FSR sessions on an outpatient basis with the radiation beams carefully plotted by my neurosurgeon and the radiation oncologist he teamed with.  They were low-dose and very tightly focussed on the remaining AN.  The radiation was easy and painless with only a hint of reaction (I was slightly nauseous for one day).  Within 6 months my MRI scan showed tumor shrinkage and the onset of necrosis, which has continued.  Both doctor and patient are very pleased.  :)

This procedure is not feasible for every AN patient and usually will only be recommended to those with larger AN's.  Mine was pressing on the old brainstem so microsurgery was definitely necessary.  However, the retrosigmoid approach surgery my doctor used avoided disturbing critical facial nerves.  The subsequent radiation I received also avoided those nerves.  This treatment approach resulted in a very good outcome with few complications and practically no damage to any facial nerves.  However, some neurosurgeons may not want to go this route.  That is a decision to be made between the AN patient and their surgeon.  I only offer my experience as another facet of the possible options available to you.  I trust it is useful.

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: Why are some folks NOT eligible for a Fried Brainbooger? (gamma knife)
« Reply #17 on: March 26, 2008, 05:35:39 pm »
Mary -

as others have said, whether radiation is an option pretty much depends on AN size and location.  Your doctor(s) will tell you if it's an option for you based on your MRI.  Do your research, talk to your doctor(s), weigh the possible side-effects of radiation vs surgery, and then decide what is right for you.  Everyone is different and someone else's choice might not be your choice. 

When my doc first told me about surgery and radiation and what I could expect from each, I told him there was no way I could possibly have surgery.  I told him that as a single parent, I didn't have a week to be away from my children and I couldn't afford to be away from my job for six weeks.  But in the end I decided that the time involved shouldn't be a deciding factor and that my children and my job would be just fine without me.  I also considered a lot of other things, and in the end I went with the surgery. 

Today, I am totally comfortable with my choice, and thankfully without "issues" - other than SSD, which IMO doesn't count since the BAHA will be helping me deal with that.  Some patients choose radiation, some choose surgery; you'll make your decision in time and when you do we'll all be here to support you.

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

sgerrard

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Re: Why are some folks NOT eligible for a Fried Brainbooger? (gamma knife)
« Reply #18 on: March 26, 2008, 10:17:31 pm »
If the tumor is too large or the position is not good are the main reasons for NOT being able to do GK if I understand correctly.  Someone else can certainly give you better answer...Steve, where are you?

Late, apparently.  :-[

But I think you got it right. The principle concerns are pressure on the brain stem from swelling, and radiation exposure of the brain stem, which is sensitive to it.

I would add that in some cases, where the balance nerve is causing severe vertigo, surgery may be preferred so that the balance nerve can be cut. For large tumors over 3 cm, the radiation dose needed would be too large to risk it, in most cases. And, since radiation takes a while to have its effect, there is some concern if you are planning a pregnancy in the next year, since it seems to have a tendency to jump start AN growth.

The other concerns mentioned in various posts, once you look at the numbers and do the math, are not really very significant. For instance, second treatments are harder than first treatments - regardless of which treatment choices are involved. The extra risk of facial nerve damage, if you have regrowth (2% chance), times the risk from the difficulty of second surgery (25%), works out to an added 0.5% risk. Not really worth worrying about.

I will just add that you should consult with a radiation oncologist, rather than a surgeon, if you want to get a well informed view of whether radiation is suitable in your case. Go to the pros in each field for their advice on what they know best.

Best wishes,

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.