ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: sandyinwisconsin on September 03, 2013, 04:26:40 pm
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Has anyone had any experience with FSRT? My doctor said I would need 27 treatments of a low dose Fractionated Sterotactic Radiation. I think that's what it's called.
He said my side effects would be tiredness and possible facial tingling.
He did not say what they would be like after treatments, but from what I read on this website, it doesn't look too good.
I lost most of my hearing, so the advantage would be to avoid surgery and possibly save the facial nerve.
Please let me know your experiences.
The treatment would be at Madison with Dr. Steven Howard who seems to be really good.
Thanks.
Sandy
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FSRT has been discussed here many times.
Use the following search feature for FSRT and you'll be able to read all the posts that mention it.
http://www.anausa.org/smf/index.php?action=search2
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I had 28 sessions of FSR two years after a 42-hour surgery. Because the hospital was almost just across the street from work, I was able to just walk over and back with little interruption to my day. It turned out I am one of the few that is sensitive to radiation and so I experienced a fair amount of nausea along with noticeable fatigue during the last half of the treatments. All that cleared up pretty quickly when treatment was done. I also lost much of my ability to taste sugars that I had recovered since surgery, but that also was temporary.
Life is good. If the docs recommend it, this can be a good way to go.
-Tod
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Hi Tod;
Is your 42 hour surgical experience archived on this forum?
Glad you're feeling better, post FSR!
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Sandy ~
I underwent FSR (26 treatments over 5 weeks - a total of 27 Gy) on a 'debulked' AN (approximately 2.5 cm) with no complications. I drove myself the 62-mile round trip five days a week (week-ends off) and did not experience nausea, dizziness or fatigue. I had no post-FSR issues. The AN showed the beginnings of necrosis (cell death) and shrinkage within two years of being irradiated.
You should bear in mind that this is a support site for AN patients and so many posts will focus on problems. However, some AN patients do have relatively positive outcomes to surgery and/or radiation.
Jim
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I had Gamma Knife January 22, 2013. One time thing, in and out the same day. Had my friend drive me and pick me up because I had anesthesia for the head frame. Had lunch on the way home then took a nap because I'd been up since 4:30 AM. No problems since then. 6 month MRI August 1, 2013 shows the dark spots of necrosis and a little expected swelling.
Sandy, my AN was also about 1 cm. I'm not saying that a one time GK is better than 27 visits to the FSRT machine. It's like comparing Ford to Chevy. You choose what you feel better about. But GK is certainly a viable option for small tumors.
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nftwoed, I'm sorry, not 42 but 32 hours, although from my point of view not really a difference. However, there are posts about my experiences here and at http://www.caringbridge.org/visit/tod_no_bob
It has been a pretty incredible journey for me, with lots of good things along the way.
Tod
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Arizona Jack,
Question - would your decision to opt for GK for a 1cm tumor have been any different if you were 20-25 years younger?
Petrone
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I just completed FSR treatment on the 30th. I had 30 treatments over 6 weeks (M-F) and the only side effects I felt were some fatigue, which didn't really set in until about the 4th week or so, and some mild nausea, which may have been related to the treatments.
My doc did have me start a low-dose steroid in the last week and I am in the process of weaning off of that in the next few days.
The only real symptom I have had in the course of my diagnosis and treatment has been light facial numbness on my AN side and that has either remained the same or eased up a bit (I feel better when I'm well-rested.)
I'll see the doc next month and then we'll plan for an MRI sometime next year.
I was very happy with my treatment process and the doctors and staff involved. Though I didn't go to an AN specialty facility, the facility I used treats cancers and ANs with radiation and the doctor seemed to me to be very well-informed about ANs and we had some good, detailed conversations.
As a professional orchestral musician, preserving my hearing and facial nerves was paramount and I feel that the treatment I had was the best choice for me.
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Arizona Jack,
Question - would your decision to opt for GK for a 1cm tumor have been any different if you were 20-25 years younger?
Petrone
I absolutely have no possible way to answer that question.
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I had FSR in April 2011 and so far all the MRI's have showed no new growth. I experienced side effects such as tiredness and double-vision, and a cyst developed. I also had some problems with my balance. No problems with my face. All those complications are gone now, but I do have a mild case of tinnitus in the AN ear. I just had my two and a half year MRI check up and will post the results here soon.
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How is your hearing?