Author Topic: Surgery vs CK or GK  (Read 3886 times)

cindyj

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Surgery vs CK or GK
« on: March 02, 2008, 07:08:31 pm »
Hello again all,

As mentioned in a previous post, I have just been dx w/ a small AN and am still in the research stage  - it's a lot to take in, but this site has been such a huge help.  I have 2 questions (for now):

1 - It seems to me that the best place to go for advice on which treatment option would be best is one that does surgeries and CK and/or GK.  Is this too much to wish for?  I'm in the Atlanta area - I know we have GK in 2 hospitals and CK in one and several surgeons w/ AN experience.  Would really love a "One stop shop" in hopes of avoiding a bias or prejudice for one treatment over another - any around this area if there's even such a thing?

2 - For any of you w/ "smaller" tumors that went the surgery route, what helped you decide to do that instead of CK or GK?  Know that for some, you did not know your choices, but if you did, and still decided on surgery, how did you come to the decision?

Thanks so much for all of the input all you regulars continue to give to everyone on this site (I've also seen a couple of you over on the Cyberknife support site).  By the way, I live about 3 miles from the ANA office!  Think I'll drop by next week...

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

ppearl214

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Re: Surgery vs CK or GK
« Reply #1 on: March 02, 2008, 08:00:39 pm »
Hi Cindy

I assume you are noting Emory and Kennestone Hospital? (I lived in Dunwoody and Roswell and my family still in Alpharetta :) )  Planning my upcoming trip to ATL and will also be stopping into the ANA office (they are taking cover now in advance of my arrival).  Fabulous AN team at Emory (I believe it's Dr. Maddox) as I know of some here that are working with him.  My sister does  clinical trials in Atlanta and informed me that Kennestone got the CK unit... I, personally, don't know anyone that had their AN treated there but I'm sure they will give you patient references if you ask them.

Neurosurgeons are usually part of a radio-treatment team (as I had one involved in my CK planning and follow up as well).  Stanford (N. CA) also has a team that does neurosurgery (as matti here can attest) as well as their CK team (as many here can attest... Lorenzo, Mark and too many for me to name all).

Yes, to find a complete team is possible as neurosurgeons are usually part of a radio-treatment team.

Good luck in your research.... and good to have you here.

Phyl
« Last Edit: March 02, 2008, 08:05:46 pm by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

sgerrard

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Re: Surgery vs CK or GK
« Reply #2 on: March 02, 2008, 11:00:44 pm »
Hi Cindy,

As one of the "too many to name", I agree with Phyl that one of the things that makes Stanford CK good is that Dr. Chang is a neurosurgeon. (Note to newbies: always agree with Phyl  ;) ). (Note to Phyl: where is Mark these days?)

I would go ahead and get an appointment with Dr. Maddox, I have heard good things about him; then also get one with the CK group, or a GK team. Let them both know you are seeing the other, and I suspect you will get good advice from both sides. Neither treatment is perfect, and some of it does depend on you defining what constitutes "best," as in "best for you." They can provide you with more information and details on how the two treatments might work out in your particular case.

Best wishes on your new adventure,

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.

ppearl214

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Re: Surgery vs CK or GK
« Reply #3 on: March 03, 2008, 06:54:13 am »

(Note to newbies: always agree with Phyl  ;) ). (Note to Phyl: where is Mark these days?)

note to Steve.... too funny! :)... and I believe he's lurking and keeping busy....... thought I saw him log on this site recently. ;)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

jtd71465

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Re: Surgery vs CK or GK
« Reply #4 on: March 03, 2008, 09:27:27 am »
Hello Cindy-

To answer your last question regarding why I went down the surgical route with a smaller AN(1cm X 1cm X 7mm).  I'm not a wait and watch individual, I viewed CK or GK the same, you need that wait and watch mentality even after treatment.  For me it was all about getting it out and moving on...speaking of which I should get back to work.

Joe-
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos

Dan

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Re: Surgery vs CK or GK
« Reply #5 on: March 03, 2008, 11:09:07 am »
Hello Cindy,

I choose surgery for about the same reason as Joe, I didn't want to take a chance of maybe swelling and having complications later.  I wanted to know exactly where I am before I leave the Hospital.  Also here in Germany they don't have CK and GK is here considered still in the experimental phases and Insunance doesn't pay everything.  I also choose surgery because I found a Dr. that alot of people had recommended to me that has alot of experience ( I think this was a key point I felt confident that the Dr. knew what he was doing).  I had been under the knife 8 times in the last 3 years for other things and so I wasn't afraid of one more OP even though in comparison the others were minor surgery. 

Like everyone here on the forum says you have to feel comfortable with your Dr. thier recommendations and your decision.  I couldn't tell you now if I had regrowth or NF2 if I would make the same decision again. 

Good Luck with your decision making and you have come to the right place to get help finding a Dr.

Dan in Germany   
US Army Retired, age 51,  residing and working in Germany.
Retrosigmoid 21 Sept 07 left side 1.76cm AN, Prof. Mann, Uniklinik Mainz Germany

cindyj

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Re: Surgery vs CK or GK
« Reply #6 on: March 04, 2008, 08:42:03 am »
Morning,

Thanks for your input everyone - I'm heading to the otolaryngologist this morning and will, no doubt, have more questions when I return. 

I am trying to keep an open mind about all the options and, of course, know I need to see what the various docs have to say.  I am no stranger to surgery having had a couple of bouts w/ breast cancer, so I won't shy away from surgery from that stand point, but not sure if I really like the idea of someone in my head w/ a knife.  I have to admire all of you that had the courage to go the surgery route. 

Phyl, yes, it's Emory and Kennistone that I was talking about (though I think St. Joe's also does Gamma Knife).  I talked w/ Kennistone yesterday - they have had their CK "machine" for about 18 months, but she said the doc in charge was previously w/ the Mayo Clinic and had done many AN procedures.  I'm sure I will at some point get their opinion on my situation.  Hey, let me know when you're coming to Atl - would love to meet you over at the ANA office perhaps...

Til next time,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

ppearl214

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Re: Surgery vs CK or GK
« Reply #7 on: March 04, 2008, 12:26:01 pm »
Thanks cindy! Didn't know St. Joe's (possibly) has GK but good to know... we have many from GA/S. TN and AL that check in on this site on occassion, so good to know for my reference.  Am booking flights for the ATL trip. I'll meet you at the ANA office... or D&B's or $3 Cafe (Buckhead) for wings! :)

Be well and hang tough!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

ceeceek

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Re: Surgery vs CK or GK
« Reply #8 on: March 05, 2008, 02:54:09 pm »
Hey everyone!
No I did not fall off the face of the earth dispite popular rumor..I did finally graduate from school though! Yeah!!, speaking of which, I need to call Batty princess..
So Cindy,
In response to your dilemna,
I actually had the pleasure of both. I have something similar to an AN which is how I wound up in this group and they have been nice enough to let me still hang out.
My tumor was not readily identifiable so a biopsy was needed before proceeding with CK or any other type of stereotactic radiation. In order to get a biopsy, none of my options were too great as I have a skull base tumor..hard to reach without re-arranging my brain...so, I opted for a unique approach of transphenoidal endoscopic surgery in the hopes of removal without re-arranging my brain, and at the very least getting a biopsy.
The tumor could not be removed but I was able to identify the growth...a benign annoying little thing in a bad spot....about the size of a walnut and still needing to be dealt with.
Originally my preference would have been to just remove it, period, out of my head , gone etc!, however, there is much evidence that these types of benign growths tend to recur....Now dont panic!!! many do not ever ever ever come back, but after suffering through surgery which even the route I took, was not fun.
I had to follow up with stereotactic radiation and I chose, much to my neurosurgeons dismay the cyber system..he uses gamma.....after my three month MRI, my tumor is dying, smaller in size and I did not miss one days work during the cyber treatment! In fact as you noted at the beginning, I was in college the entire time through both surgery and radiation....the cyber was a lot easier believe me!
Does it behoove you to try and find a neuro whom offers both surgery and radiation? yes it does, and even then you still may have to decide which type of radiation treatment to use as there are many different types. The idea of having the tumor inside myhead is a little creepy, but as time goes by and I see it dying, and I have no to little side effects, it bothers me less and less. After all, I have fillings in my teeth, metal in both my arm and my knee and that doesnt freak me out, so why should a piece of dead tissue.
Lots to think about and remember you have time, you may even opt for watch and wait, which definately was not for me....but works well for plenty of others if the AN is not really bothering you too much.
Good luck and feel free to contact me. Keep us posted as to your progress.
Ceeceek
Such is life...Finally identified...vidian nerve schwanomma, 2.8x2.8x3cm.....in the middle but under my brain.....post transphenoidal endoscopic surgery April 19th, 2007 Pre CK treatment in Sept 07.....re-arranged cavity in hopes of reducing side effects and now officially diagnosed as hard headed.

cindyj

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Re: Surgery vs CK or GK
« Reply #9 on: March 05, 2008, 09:35:16 pm »
Thanks again for your thoughts - I did meet w/ the surgeon yesterday and his recommendation was to go GK or CK - he said he only performs the Retrosigmoid and he definitely didn't think I should do that as I still have most of my hearing...I was so pleased that he (as a surgeon) did not try to convince me to do that simply because that's the technique he uses.  He said middle fossa would be the best surgical approach for me, if I wanted to go that route, but he did not do those and really did not recommend it for me.  Anyway, I am going to see two different neurosurgeons in a couple of weeks, one that does the GK and one that does CK.  I still may want to at least talk to someone that performs the Middle Fossa, but think maybe, maybe I'm leaning toward the GK or CK.  Know I'm very lucky to even have the choice!

In the meantime, I'll continue to hang around in this site and try to learn as much as possible.  It actually has become rather an obsession...

cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Mark

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Re: Surgery vs CK or GK
« Reply #10 on: March 05, 2008, 09:52:16 pm »
Cindy,

Your last post was a very refreshing one to read. Over the years of reading posts it has been the rule rather than the exception that surgeons would push a patient down a path either because it's only what they did or they didn't understand the other option to fairly represent it. I am impressed that your doctor made a recommendation focused more on what was best for you, not what he was trained to do. You were very lucky to get someone like that and it's nice to hear a story where a doctor gave unbiased AN advise.

Thanks for making my day  :D

mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

cindyj

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Re: Surgery vs CK or GK
« Reply #11 on: March 06, 2008, 06:35:18 am »
Yes, I was pleasantly surprsed also!

Phyl, I forgot to say that, yes, let's do $3 Cafe - I'd like a Margarita!

With CK, are the treatments done on consecutive days?  Know I've probably seen that answer, but it escapes me now and knew you guys would have a quick answer.

Thanks - have a good day,
cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

ceeceek

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Re: Surgery vs CK or GK
« Reply #12 on: March 06, 2008, 05:29:12 pm »
they may be done in sequence or as in my case skip a day or two in between....I believe it is usual protocol to perform in sequence but apparently it does not make a huge difference if only a few days apart...
Ceecee
In my case, I did one day skipped a day then did two back to back....but I could have actually waited a week in between the first treatment and the other two as that was initially what I was looking at do to my schedule
Ceecee
Such is life...Finally identified...vidian nerve schwanomma, 2.8x2.8x3cm.....in the middle but under my brain.....post transphenoidal endoscopic surgery April 19th, 2007 Pre CK treatment in Sept 07.....re-arranged cavity in hopes of reducing side effects and now officially diagnosed as hard headed.

sgerrard

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Re: Surgery vs CK or GK
« Reply #13 on: March 07, 2008, 02:03:51 am »
Did someone say Margarita? You do know that if you are doing CK, then they have to be fractionated margaritas, right?  ;D

My CK week was talk on day 1, scans and plans on day 2, treatment on days 3, 4, and 5. Wine with dinner on day 6.  ;)

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.

 


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