FSR -Stereotactic Fractioned Radiation

[ash]

My physician wants to do radiation (gamma)but I am already deaf in my opposite ear. I have found that cyberknife has a much  better chance of retaining hearing since it is several sessions with less strength than a single high dose treatment for Gamma. I now read of a third radiation treatment "FSR", which I understand (I think) is even lesser strength doses of radiation over a longer length of time usually 26 days. Can anyone explain this better? Also I wanted to thank the ones that have replied to my earlier questions and say that it is much more of a comfort reading your replies and seeing the picture of the person the message is from. I would do it if I was better with my computer. Thanks 

[Jim Scott]

Hi ~

I underwent FSR for a 'debulked' AN back in 2006.  The original tumor was 4.5 cm.  It was surgically 'thinned' and it's blood supply severed.  The remaining tumor was approximately 2.5 cm at the time it was irradiated.  I underwent 'Retrosigmoid Approach' surgery but the growing tumor had rendered the hearing nerve useless some time prior to my AN diagnosis so retaining hearing in the affected ear was never an issue.

Three months later, according to my neurosurgeon's plan, he teamed with a radiation oncologist to 'map' (via CT and MRI scans) my FSR.  The goal was to avoid damage to surrounding brain tissue and yet focus enough radiation on the resected tumor to destroy it's ability to re-grow.  The final result was a total of 27 Gy radiation over 26 separate sessions approximately 40 minutes each.  I was fitted for a very tight-fitting soft plastic 'mask' that the radiation technician used to pinpoint the radiation beam.  I was strapped onto a metal slab that both lifted and rotated as necessary so the technician could focus the beam precisely.  The sessions were painless and I never suffered any side-effects.  No dizziness or nausea and no hair loss.  In fact, I drove myself to and from each session (a 60-mile round trip).  The FSR sessions were performed on a Monday through Friday schedule with weekends off.  The process lasted 5 weeks and one day.  Follow-up MRI scans indicated the beginnings of tumor necrosis and shrinkage.  My last MRI was in 2008.  I have no AN symptoms (they disappeared immediately following the surgery).  My next MRI is scheduled for 2013.  I feel great and life has been back to normal for quite some time. 

I trust this account of my FSR experience will be helpful to you.

Jim

P.S. FYI - my avatar photo was taken in late 2010.

[james e]

I had a surgery and know nothing about radiation. Jim is a real pro. Let me throw this in. Is a Cochlear implant in your future? Will radiation have any impact on this opportunity? Since you are already SSD, this is very important.

James

[ash]

They are good questions that I will ask. I wonder if the FSR is for patients that need radiation after surgery because I cannot find much on it.
 Thanks

[JWW]

Is FSR the same as (IMRT) Intensity Modulated Radiation Therapy?
I live in the Houston, Texas area and cannot find any place that offers FSR!
You would think living near the largest medical center in the country, this would be offered.
So far, I can't see where M.D.Anderson even offers Cyber knife!!!!

I did find a Cyber knife clinic associated with the St. Lukes' Hospital in the medical center, maybe Baylor......I am in the process of checking this out.

[JWW]

CK or FSR in Houston, Texas....feedback please

I am looking into CK or FSR in Houston, Texas.  There is a place called CyberKnife Houston associated with St. Lukes Hospital in the medical center: St. Luke's Radiation Therapy and CyberKnife. The radiation oncologist is a Dr. Larry S. Carpenter. Apparently, they have been there for 8-9 years.
 
Does anyone know of this place or this doctor? I have an appt. with Dr. Carpenter on May 2 to discuss the various treatments I mentioned. They get referral from M. D. Anderson from doctors/pts. that do not want Gamma Knife, in order to preserve their hearing.

I was just diagnosed this past 03/19/2012 with a L. AN 1CM x 6mm x? I am doing "watch and wait". Surgery not recommended. I will follow up with an MRI in 6 months and another audiogram in a year. My hearing is normal until 4000 hz. Trouble with consonants. I do have mild issues with balance and dizziness.

[nftwoed]

Hello;
  I believe many of the large Tx centers which used FSR for AN are reverting back to GK. CK remains an option in many centers, whilst ( I think ), FSR is becoming more of an Oncologist's procedure as they treat many other bodily tumor types.
  For instance, John Hopkins, with the late Dr. Williams, pioneered in devlopment of FSR in the early to mid 90s. I believe John Hopkins Radiology now offers GK as their mainstay Tx for AN again.
  Theoretically, at least, FSR/GK using a Linear Accelerator and hypofractions better spares surrounding tissue and nerves.
  But, in a very real sense, and also cheaper, so do the physics involved in Gamma Knife Surgery. The 201 rays enter weakly, converge powerfuly at target, then exit at half their initial strength. Newer dosage protocols of GK are down to 12 or 13 gy.
  My GK provder from Mayo felt the other types were developed after GK to capture market share a  GK market. GK is also, by nature, hearing and surrounding tissue sparing and immensely accurate!

[JoyNJ]

Ashman, I just started the process of having fsr for the same reason you posted.  I have no hearing in my left ear, and the AN is on the right.  I am going to Jefferson in Philadelphia.  My Neuro-ENT believes the fsr has a much better track record for preserving hearing in the affected ear, which is my main goal.  I will be having treatments at the radio-oncology center at Jefferson, with nuero follow up with the nuerology center.  If I do lose my right hearing, then on to a cochlear implant, but hopefully not for some years!

Good luck to you, hope you found the info you needed.

[ash]

Hi Joy

I have kept a journal here and have not been back to this posting for a while. You have the situation as I, how long have you been deaf in your left? I just had my six month post treatment MRI and overnighted to Stanford. I am nervous of hearing the results because of our shared condition. I have not been on this site for a while because I have actually tried to forget about my condition. By your name I am guessing you are from New Jersey as am I. It has been a month from your posting so I wonder if you have gotten started. Let me know how you are doing, good luck!

[JoyNJ]

@ashman,
I have not really been on the site since that first time, but have been moving forward with treatment.  I had the MRI for mapping, the simulation (the timing was interrupted by Hurricane Sandy as the hospital was without power for a couple of days and then backed up due to the lost time), so the next step, the simulation was pushed back a week.  I started the radiation treatments this past Monday (11/12/12) at Jefferson in Philly.  My Neuro ENT (Dr. Evans) feels that fractionated radiation is the best option as it uses less radiationn per visit and has a lower incidence of hearing loss.  Although I do face a high risk of losing my hearing over the next 10 years.  The reason for my hearing loss in the LEFT ear has not been fully explored yet.  As my neuroma is of the upper size that is considered good for FSR, we decided to treat the neuroma first, and go back to that after treatment.  He does feel that I will be a good candidate for a cochlear implant, whenever I get to the point of "no usefull hearing", but then again, in order to get the implant, I need to keep working to have insurance, so I need to be able to hear! (I am a hospice nurse, so I do a LOT of "active listening" with my patients...not to mention just being able to use a stethoscope for vital signs and heart and lung and bowel sounds)

I had been slowly losing the hearing in my left ear for the past 20 or so years and just adjusted to it over time...always sit at a certain place at the conference table for meetings so I can hear everyone, put people I really want to hear on my RIGHT side.  I'm sure I also use visual cues when having conversations and probably lip read, too (I have a real problem with people with English/Irish accents, especially men as my lower pitches are gone). As I said above, I will explore the reason once the FSR is done. 

So far, no problems, but beginning to HATE the 105 mile daily round trip (and it's only my 1st week!) Not to mention the tolls and parking fees!  But since I live in extreme South Jersey, and I really don't trust the available radiation treatment centers here to be proficient in treating an auditory neuroma in the precise manner it needs to be treated, I will suck it up and drive up the Philly as many times as it takes!

Keep us informed as to what is going on with you, since we are in the same boat I am curious as to your 6 month MRI results. 
Joy  (sorry for the terrible misspellings...I guess my spell check doesn't like this site 

[ash]

Hi Joy,
I guess you live in the Cape May area. My wife lived in North Cape May for a while and I have a relative in the Villas, the ride is worth it. Apparently my MRI disc is in transit in San Fransisco somewhere even though it was to be delivered by 12 noon. Now I may not get a call till next week if it is delayed much longer. Frustrated!!! Keep in touch.

Bill

[JoyNJ]

Actually, I live in the south/west area of Atlantic county, about 5 miles from Cape May County, almost 30 miles north of Cape May.  I can't imagine the ride from Cape May or the Villas.  I will be checking in more frequently now, just to get info and see what is going on with people.  Knowing there are others undergoing the same treatment and surviving well is helpful in dealing with this.  I am trying to keep a bright outlook, but somedays, (like today when I needed a 2 hour nap after we got home from Philly, and I am NOT a napper) it is harder. 

I have great techs working with me for radiation threatments, they make sure I like the music and have hit it on the head every day so far...and a social worker at work has taught me guided imagery.  As soon as the mask is on and they leave the room, I transport myself to my favoriate palce on earth...57th Street beach in Ocean City (NJ), communing with my best friend (who passed away 5 years ago from cancer), watching her grandson surf, feeling the sand, the heat of the sun.......My treatments are short (2 or 3 minutes for the scan and 5 minutes for the acutal treatment) and this has kept the anxiety away. 

I do have one question for all of you.  I know this may sound a bit strange, but I have found over the past month or so that when bad weather is coming in, any kind of low pressure system, the tinnitis in my left ear (my deaf one) ratchets up to what I call "screaming", and I will have a bit of it in my right ear (the AN ear).  It was really bad when Sandy came to visit    probably as the eye of the storm went right overhead and Sandy had record-level low pressure at that point.  And it happened the next week when the Nor'Easter hit, again with very low pressure.  Am I reading something into this or is it something anyone else has experienced?   

Keeping you in my thoughts and prayers, and am hoping for great news soon from you, Bill.
Joy

[ChipsFL]

I do have one question for all of you.  I know this may sound a bit strange, but I have found over the past month or so that when bad weather is coming in, any kind of low pressure system, the tinnitis in my left ear (my deaf one) ratchets up to what I call "screaming", and I will have a bit of it in my right ear (the AN ear).  It was really bad when Sandy came to visit    probably as the eye of the storm went right overhead and Sandy had record-level low pressure at that point.  And it happened the next week when the Nor'Easter hit, again with very low pressure.  Am I reading something into this or is it something anyone else has experienced?   

Keeping you in my thoughts and prayers, and am hoping for great news soon from you, Bill.
Joy
[/quote]   Not strange at all. Bad weather definitely seems to increase symptoms.

[JoyNJ]

Thanks ChipsFL, I was afraid I was beginning to atribute every little thing to the AN.  But problems increasing during periods of very low barametric pressure did kind of make sense to me (a bit of a weather junkie    )

[ash]

Hi Joy,

I have not experienced what you are having. Because the one doctor was on vacation and the other was in a car accident and the holidays it took a while to get my results. My AN grew 1 cm which is normal and appears to be getting dark in the center, hopefully means the begining of necrosis . The doctor feels everything is proceeding in the way all was planned and I need another MRI in another six months. I feel good but I I will feel better if and when it is dead. I have two boys and one I coach in soocer, I am very busy but try my best to get back. Keep in touch and good luck!

Ash