Gamma Knife

[formula30]

I have finally gotten my appointments set up, one next monday a consult with the radiologists/oncologists.........and the following week for gamma........now I am getting nervous........my hearing hasn't been so bad on the AN side, even though on my audiogram my word discrimination is pretty bad, I have even been able to answer the phone using that ear.....now it scares me, that I will lose the hearing in that ear........is gamma better for that then fsr???  From what I have read with fsr I would eventually lose the hearing also.......I will ask the doctors........but was wondering what everyone else thinks???  Just trying to get all my questions ready for my appointment.

[richcooks]

Of course I am a novice but I discovered my AN 6 years ago when it was a baby 1mm.

I have been researching because I had three doctors tell me I needed treatment. 
1.  The gamma knife doctor who also does many AN, UPENN in Philly, told me that there is a 60% chance that you will not loose your hearing. I asked him why gamma knife in lieu of FSR and he said, :"That's what we have here." 
2.  The FSR Doctor told me that there is very little chance that he would damage "good" tissue when zapping the tumor.  This is because of the lower doses used than with Gamma knife. 

From what I have been reading you have a better chance of retaining your current hearing levels with FSR.  There are no guarantees.  I am choosing FSR.  My dilemma is that the radiation oncologist that does FSR near me has little experience with AN but lots of experience zapping tumors.

Also, i believe there are two types of FSR.  Once uses protons which are charged particles and the other uses photons generated by a accelerator.  I believe that is correct.  Protons is a five day treatment cycle and photons is more, up to 25 days?  I believe the photons treatment is the Cyber Knife.

Please someone correct me if I am wrong.

Just curious, where are you looking for these services?

[richcooks]

I recommend you read the posts below yours on the forum, CK vs GK and Novellus.  Plenty of good into there.

Best of luck. 

[Sue]

This is what I think on the "losing the hearing thing"...  My AN was at 2 cm and had done a lot of damage to the hearing nerve before I ever got treatment.  From the time I noticed the first symptom of tinnitus to the time I was finally treated (about 15 mos or so) I had lost a significant amount of my hearing.  Hearing telephone conversations became garbled and quickly disappeared altogether. When I had my gamma knife the doctor there  said casually, "oh you'll be deaf in that ear."  Well, he was right.  Not much gets through on that side.  The audiologist explained that it is because the tumor cuts off oxygen to the nerve.  So the damage to the nerve, obviously,  is key to how much hearing you have and what you will retain.  Some people have an AN but the nerve damage is minimal and they retain most of their hearing.  Some people's AN have done so much damage that treatment won't  really stop the inevitable loss of hearing in that ear.  That was certainly the case with me.  So....each person being the individual that they are will have a different story on this.  Did Gamma Knife make it worse?  I don't know.  It got worse after Gamma Knife, but I'll never know if it would have gotten worse anyway or if having the treatment made it worse.  I think the oxygen deprivation was finally dealing the death blow to the nerve and nothing I could have done would have saved it at that point..  But that's just my opinion.   

Hang in there,

Sue in Vancouver USA

[sunfish]

I think you can actually make a fairly educated decision, based on the medical/research literature available on this site, through the ANA, online, etc.

I believe there are, at least, abstracts or summaries  available on this site of dozens of articles regarding the relative outcomes of surgery, radiosurgery, etc.  Maybe there's even some full length articles?  Some of this is available from the ANA home page.  Maybe you have to be a member to access this?

That's how I reached my decision - read, read, read the literature.  I also thought the ANA patient survey on the home page was invaluable.  It was actually one of the primary factors in helping me make my treatment decision.

I'm kind of an over-educated egghead type.  Not everyone else is.  If you're not the reading/research type, I suggest you get a trusted friend/family member to help you wade through some of this stuff.  Very complicted decisions to be made by us ANers, and very dependent on your individual situation (size/location of AN, symptoms, what type of job you have, insurance, what problems you feel like you can tolerate for potentially the rest of your life).  Good luck with your journey!

[rupert]

Hello Formula30,     I was in the same boat when I was first diagnosed with an AN.   I thought that I could hear fairly well in that ear and wanted to
         preserve my hearing in that ear, so I looked at the best treatments for that.    I soon realized however that even though I thought I could hear well on the AN side
         My hearing was shot.    I can hear sounds, especially lower tones and I like you,   can hear the phone if I stick it in my ear.   Word recognition is only 40% and that is not good enough for normal conversation.   There is a home test that I do to test my hearing.   I sit back from the TV and use a normal volume that I can hear and
understand what is being said.   I then cover my good ear with my hand or a pillow.   See how much you need to turn the volume up to be able to hear and understand
words.  I found out real quick that my hearing was very bad.   This home test goes along with the official auditory tests that I didn't beleive because I didn't think
my hearing was that bad.
        Once I came to grips that I could not really hear as well as I thought,  then my search for treatment turned from concern for hearing preservation to just
getting the best possible treatment for myself.    I eventually chose Gamma Knife and have been very satisfied with the procedure.  At this point I am 10 months out
from the procedure.   My hearing has not gotten worse or better as far as I can tell,  it is the same as before.
        An's,  are tumors known for causing hearing loss and most people with them lose some or  all of their hearing.   Hearing loss is usually what gets the AN's diagnosed.
There are many posts on these forums dealing with SSD and devices to help people communicate better.  Much is made of hearing preservation statistics,  and with
research you will find total preservation is rare regardless of procedure.   Best of luck to you.    Bryan