what is FSR?

[Peggy]

I was just told  I have AN , the MRI place said it was large, it measures 1.1 x 2.0 x 1.5 cm, from what I've been reading it seems more medium than large, but at this point does it really matter, its there and I have to figure out how to get rid of it.  I been reading a lot (probably not so good, but I cant help myself , I need to know)  I've read about gamma knife and surgery but what is FSR, I haven't come across that, or maybe I did and dont remember.  I don't know what to do at this poiint, my family doc said to find a ear, nose throat doc and a surgeon, I went to an ear doc he told me I need to go to a univeristy to have it removed, ok now how do I find a specialist that deals with this,  I do have some lose of hearing in my left ear and the ringing is constant, I had vertigo about a week ago and thats what sent me to the doc, I mentioned to him over the last 6 months if not longer I have felt pain in the back of my head thats when he sent me for an MRI, and now this, where do I go from here?

[yardtick]

Hi Peggy,
Funny I asked the same question earlier today in a reply to another thread I read.  I'm not as computer savy as you to post the question.  I have a facial neuroma 1cm x 5mm.  I've had a translab last Sept.  I was told in Jan the facial nerve needs to be removed with a nerve graft. I 'm waiting for another MRI and a second opinion  ( I listened to the wise folks on this forum).  I've read a lot and I can't seem to find anything on the web about FSR.  I"m sorry to read you too have AN.  The neuroma is also on my leftside.  I wonder what the percentages of left to right are and female to male are?
Good luck,
Anne Marie   

[sgerrard]

FSR = Fractionated Stereotactic Radiation

Which means, in plain vanilla language, radiation delivered from multiple angles (the stereotactic part), over multiple days of treatment (the fractionated part).

All the radiation methods for ANs are stereotactic - GammaKnife shoots 201 beams at once from different angles; Liniac and CyberKnife shoot one beam from many different angles by moving the beam around.

GammaKnife is usually done all in one day, so it is not fractionated. CyberKnife is often done in 3 days, so it is fractionated; and Liniac is often done over many days, so it is fractionated.

I am no expert, just a newbie too, who has been reading up on this stuff. I have some science background and work as a computer programmer, so I can sponge up a lot of the technical stuff.

Peggy, there are other topics on this forum that might help you find a good clinic, whether it is a university one or not. Where in the country are you?

And keep reading; being well informed will help you find the right answer and the right team of doctors to help you. You have already found a good resource in this forum, it has helped me a lot so far.

Steve

[Windsong]

http://jnnp.bmj.com/cgi/content/full/74/11/1536

here's another write up , this one coming out of england.... I didn't read it all, though....

windsong

[leapyrtwins]

Peggy -

from what I know, an AN your size is usually considered medium.  I had one about the same size.

Anyway, where I'm from (Illinois) I don't know any ENTs who deal with ANs; referrals are made to neurotologists who work with neurosurgeons (in the case of surgery) and with radiation oncologists (in the case of radiation procedures - GK, FSR).  Don't let the term oncologist scare you - 99.9% of ANs are noncancerous.  No matter what course of treatment you choose, it's advisable to find a specialist and one who has a lot of experience. 

From what I've read in other posts, if you give us your whereabouts, members can give you some idea of where to look for a specialist in your area.

[Dealy]

Peggy-Response from one who has had FSR. As you see it is Fractionated. Mine was over 25 days at Johns Hopkins last summer. The reasoning behind Fractionation centers not on accuracy-because it can be 1 to 2mm off target-but many doctors did not like the initial outcome of Gamma Knife in it's originial form even though it is the most precise and accurate pinpoint dosage. The idea is too spread the dosage over days in order to let nerves withstand some of the radiation damage and perserve hearing because of this. Mine was from a study done in Germany that utilized FSR on patients over a 5 year follow up. The reason I  received it was because I am an NF2 with only one hearing ear left too hear out off. I am 1 year out at this point. Latest MRI showed tumor is dying but my hearing was affected to the point I only have 50% left in my only hearing ear. Odds increase when you only have a one sided AN as you do. Yours is not large by no means. Mine is 2.5 CM and pressing on my right facial nerve so I have numbness in my mouth and right side of the face. As mentioned by another postie here-Cyberknife also does Fractionated but not the long term protocol of 25 days. Some argue that FSR in the initial stages does not deliver enough dosage too kill the tumor and is too small-mostly 1.8GY per day. However I based my decision on trying to save my only hearing ear and taliking too people who had this procedure done 5 or 6 years ago and their results and outcome. I found their names under the AN Archives and actually called some of these people. ONly one person had a failure after 5 years. However you will find this can be the case also with surgery or other forms of Radiation. Their is no 100% cure for any procedure. However with your size-their is good odds in either surgery or radiation. Good Luck on your decision. Ron

[mema]

Peggy,                                                                                                                                                                                     
   I had 25 treatments FSR Nov-Dec  2005 at MD Anderson.  I researched all my options at many hospitals.  I even visited John Hopkins and Thomas Jefferson.  The radioligist actually told me I'd loose my hearing over a period of years.  It took only 5 months which surprised them.  I did have slight to moderate headaches and a few other head sensations.  They seem to be lessening, but I'm on mobic and that could be the reason.  My 18 month MRI showed my an 1mm smaller.  Originally it was 8mm x 6mm.  When I read the posts every procedure has symptoms.  And I wonder how many people out there have had symptom free procedures and have no need to post.  I am not sorry that I had FSR.  I guess the best thing is to research as much as possible and talk with a few doctors.  Good luck                 


                                                                               mema

[Peggy]

thanks for all your help, I live in southern NJ, so going to philadelphia area is not far for me. any help is greatly appreciated
when I went to an ear doc he recommended Dr Wilcox at Jefferson Hospital in Phil, has anyone heard of him or have been to him

also, how can I find out how many of these procedures he has done before I make an appointment , I don't want to waste anymore time going to docs that cant help.  I want this done with asap,
Peggy

[NF-2er]

Hi Peggy;

   How much hearing did you lose? Are you deaf or can still wear HA's? Cochlear Implant may be an option if enough loss has occurred.
   I'm sorry to read this but know it is a common, if long term consequence, for many who have received radiation
   Take care...

   NF-2er

[Mark]

Steve,

Great explanation of FSR. For a "newbie"  , You certainly have articulated what the protocol is exceptionally well.

Nicely done 

Mark

[Jim Scott]

Hi, Peggy....

Sorry you have a need to be here but since you do, we're glad you found us.  As your query regarding the definition of FSR has already been answered quite fully.  I'll just add that FSR is also used in conjunction with surgery to remove AN tumors.  As my signature shows, I had (retrosigmoid) surgery followed by 26 low-dose FSR treatments last year.  The radiation oncologist who mapped the FSR (with my neurosurgeon) claimed that he had never seen a failure (over 5 years) when the FSR followed 'de-bulking' AN surgery. 

On my last MRI (6/20) the remaining AN tumor showed definite shrinkage (2.8 cm to 2.6) and clear signs of necrosis (cell death).  My neurosurgeon was thrilled - and so was I.  On smaller AN tumors not requiring surgery, I believe that FSR is still a viable treatment that is a bit easier on the facial/cranial nerves.  You should find lots of information about FSR on this website and elsewhere.  Just type in 'acoustic neuroma FSR' into a search engine and see what comes up.  That should keep you busy - and informed.     Best of luck as you seek a workable solution to your AN and please keep us informed, because we care.

Jim

[sgerrard]

Thanks, Mark. Once a nerd, always a nerd. 

Peggy, I looked up Jefferson Hospital for you. Did you know that the ANA just had their annual symposium in Philedelphia, sponsored by T. Jefferson U. Dept of Neurosurgery? That's a good sign. Also they are listed on the "America's Top Hospitals" list posted in another thread.

Here is a link to their main web page. Wilcox is listed as an ENT there; Dr. David Andrews seems to be a leader in the neurosurgery and radiation department. They have microsurgery there, and also a GammaKnife facility and other radiation options. You should be able to talk to someone about the microsurgery option, and to someone about the radiation option - probably not the same person, though.

http://www.jeffersonhospital.org/

Take a little time, insist on getting opinions on both surgery and radiation options, and look around their web site, it seems like a good, comprehensive facility:

ENT page:
http://www.jeffersonhospital.org/otolaryngology/index.html
AN page:
http://content.jeffersonhospital.org/content.asp?pageid=P00438
GammaKnife page:
http://content.jeffersonhospital.org/content.asp?pageid=P08769
Brain Tumor Treatments:
http://www.jeffersonhospital.org/neuroscience/brain_tumors/article10758.html

I know you would like this done with ASAP (wouldn't we all?), but taking a little time to find out the best choice for you will be worth it. It is not a little thing to be diagnosed with AN, so give it some of your attention now, you will be glad you did.

Best wishes, Steve

[yardtick]

Jim and all others who have had FSR,
What is the time frame inbetween treatment?  Whatare the side efects?  What is the recovery time?  How long after the treatment is the next MRI done?  What is the average time it takes for results?
Thanks,
Anne Marie

[mema]

Peggy,                                                                                                                                                                                     

I went to Dr. David Andrews at Thomas Jefferson Neurosurgery Dept at 909 Walnut Street.  He was very good and I would have gotten treatment there but he confirmed what MD Anderson said and I live closer to MD anderson.  John Hopkins  would not be that far either for you.  I spoke there with Dr's Wharam, Wemmer and Wang.  Every place I went for an evaluation the docs spent a long time with me.  I know you're anxious to do something, but research as much as possible and if you have medical insurance get a few personal evaluations.                                                                                                                                                                             

                                                                                                        mema

[Jim Scott]

Ann Marie:

Sorry to take so long to respond but I somehow overlooked your post and it's question.

My FSR treatments were 24 hours apart. 5 days per week, Monday through Friday, with weekends off.  26 days, total, which is typical. 

I had no real side effects except one day of slight nausea, about a week into the treatments.   

Frankly I didn't need any recovery time.  I followed my usual daily activities and drove myself to and from the hospital where they were performed, a 60-mile round trip.  I understand that this is fairly typical for FSR patients. 

I had an MRI scan done about 2 months following the completion of treatments.  Although the tumor had swelled a bit ( a typical reaction to radiation) necrosis was noted.  I had another MRI scan six months later and another 30 days after that, as my neurosurgeon wasn't satisfied with the earlier scan results and wanted a close comparison.  That MRI (June 20th) showed definite tumor shrinkage and necrosis.  So, as a non-physician, I would say that an MRI 6 months following the completion of FSR treatments should show results (or not, as the case may be). 

This is based on my experience, only.  Your results may vary, as they say. 

I hope this helps.

Jim