ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: ceeceek on February 03, 2007, 11:49:38 am
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Now, I know several of you have had biopsys..and I am referring to the type in your brain...
So can you guys fill me in on what to expect?
I have tried reading about them etc.....but not a lot of luck.
I did however, find a Doc whom specializes in removal of tumors via the nose or endoscopically,,and although I so far should be a good candidate for CK, I may consider this type of treatment also depending on what Dr. Brem has to say...but I am till stuck waiting.......aauuughhgh till wed....I wish it would get here.
In the meantime, the main reason I am seeing Dr Brem, is to see if a biopsy is possible etc. for Dr. Spunberg, as he says treatment would be most effective if he knew exactly what he was dealing with vs just generic treatment, so more than likely I will be having Dr. Brem perform one, and I really dont know what to expect....
Would love to hear your stories and outcomes if anyone has any.
Thanks
Ceeceek :-\
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ceecee, I know you are in a tough situation and you are getting as many options/opinions as you can. I have had biopsies but not on the brain, so I cannot answer your question. Will see if I can find any info around the net and will see if others chime in.
Hang in there.... I know the wait has been a tough one for you. We're here for you!
Phyl
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Tanks...you are always there.....and while I am on a rant..has anyone been treated by Dr. Jho re endoscopic surgery???? am trying to research info about him, although, I know recently at Florida Hospital they did perform this proceedure, but not sure if they do it on a regular basis, I will be sure to ask Dr. Brem about it...although I think CK is a very very good option, my biggest concern is said tumor growing back later..and if I have it removed although there is still that chance, it would take a long time......with lots of room to grow verses if I just kill it now, and it regrows later there is not much room...
Thanks again,
Ceeceek
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Well, if it grows again after Ck, I would imagine they would debulk it first then zap it again, no? maybe I'm under a wrong assumption!
Ciao, Lorenzo
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Well, thats what I mean..I believe that if it were to grow, they would indeed just zap it again, but,,,, I am not in much position for it to grow...if you know what I mean.
In meanwhile, I am trying to find out about how biopsys are performed etc so I can know what to expect, but I guess most people have just had it during reg surgery....how about you guys that had GK or CK..did they biopsy first and what was it like??
Ceeceek
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Hi bruce.
Because of where this sits, they are unsure if it is an AN a facial schwanomma or a meningioma and without biopsy, they cannot tell. I have significant markers that could identify it as any of the above or none of the above..although likely benign they want a biopsy so that if I do CK, they can adjust the dose for that type of tissue....fun fun aint it?
I am currently at borderline for Gk and due to location upon carotiod artery will more than likely proceed with CK or endoscopic removal if it is an option.....trying to find out if anyone knows anything about a Dr. Jho..he invented process of endoscopic removal of skull base tumors...which is in effect what I have due to its location.
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Well, if it grows again after Ck, I would imagine they would debulk it first then zap it again, no? maybe I'm under a wrong assumption!
Ciao, Lorenzo
that's the nice thing about CK, my dear Italian Friend in Ire! :) If you CK and gawd forbid.... you can re-CK again! One reason why I chose it as my treatment option... you know.. the old "...just in case..."
Phyl
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Hi, Ceeceek,
I am not sure I understand where your tumor is located but since it might be meningioma, there is a doctor you might want to consult: Dr. Sen in New York. He does endoscopic removal but not of AN unfortunately. He does a lot of meningioma removals, as well as NF2 tumors and is featured on the meningioma help forum. Here is the link:
http://www.cranialbasecenter.org/
I know people come to him from all over. I had a consult with him regarding my AN recurrence and he impressed me so much that if I absolutely had to stay in NY and could not go to any other state, I would do it with him. He handlles difficult tumors in challenging places. As I posted in another thread you started regarding Dr. Jho, I am going with Dr. Shahinian at SBI, also endoscopic. Dr. Sen, incidentally, trained with Dr. Jho, so that might be something that you want to look into.
Best wishes regarding your search!
Eve
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Ayayaya Girl: you sound like you have a tricky little bugger :'(. I just had my first CK treatment- it went great. And the doctors assured me that if I am in the 2% failure rate (versus the 98% success rate)- they would just do a second set of treatments with CK -(Yep Phyl, Lorezno is correct in his assumption) It seems to me that if you are going through the hassle of the biopsy, you might as well get the whole thing removed ( but again, I'm a patient with limited, internet based knowledge). I had three prior opinions, all were surgery based- the second opinion mentioned my tumor might be a meningioma but none of the other opinions concurred with that theory.
Are you in pain? Are you having balance issues? If no pain and no balance issues you may very well be a great candidate for Gk or CK. I know I am a chicken little about surgery and the 6-8 weeks recovery associated with surgery was just a real depressing thought for me.
My experience with all this- research and keep talking and checking in with all of us. I was pretty much resigned to surgery and then was doubting my desicion- only to check in with the website and have my gut check confirmed by Phyl, Mark and Bruce. Really research all your options. Know up front that the treatment for these types of tumors are surgery biased- (it took me three separate opinions, Sacramento ENT, House Ear Institute-LA, and then 2 separate opinions at Stanford only to have the second guy at Stanford Dr. Chang tell me I was a great candidate for CK treatment.
Also, don't expect to become an expert right away! You need time to absorb all the terms associated with your condition. Take care of yourself and know we are here for you- Annie