So my hearing can get worse after Gamm Knife Treatment??

[Jim Scott]

Reading all these posts makes me feel like the treatments are almost as bad as not doing nothing. My hearing in my AN side is nowhere near perfect but right now it's not that bad from what I can tell especially compared to what is was when I first learned of my AN. It seems like a real shame that any treatment of my AN might just make things worse.

Phillies ~

Although treatment can cause problems due to the critical location of the acoustic neuroma, doing nothing, as you probably know, is not a valid option.  ANs almost always grow and when they do, problems increase.  Even though an acoustic neuroma is benign (non-cancerous) if left untreated, the AN could, in time, seriously impact the brainstem and, eventually, lead to death.  The fact that radiation (surgery, too) often has the effect of diminishing or removing your unilateral hearing is one of those unfortunate complications that make choosing a treatment so difficult.  The urge to ignore the whole thing is sometimes strong but, again, not realistic.  The harsh reality is that ANs are difficult tumors to address, whether you chose radiation or surgery (I opted for both).   The good news is that the success rate of GK is very high.  I wish you a successful consult next week.  Please let us know how it goes.  Thanks.   

Jim       

[Phillies]

Location is also very important in addition to size.
Regarding hearing preservation, my doctors had warned me that I would lose my hearing after GK and it did indeed happen. At least it happened so gradually that it didn't really bother me.
 My observation though from the forum is that many people retained hearing post radiation, GK or CK when they had smaller tumors. If hearing preservation is very important for you fractionated treatments like CK may be more beneficial.

Marianna

Could you elaborate on how fractionated CK treatment may be better for my hearing? Although I don't think I have any cyberknife places that are within easy driving distance.

[ppearl214]

Could you elaborate on how fractionated CK treatment may be better for my hearing? Although I don't think I have any cyberknife places that are within easy driving distance.

Hi Phillies:

I'm not sure where you are located (in PA?) but have confirmed that CK is also offered at UPMC.  Since I don't know where you are located, you can check for CK facilities at www.cyberknife.com

To answer your question... typically, GK is done at one time vs CK which is usually "fractionated" over a timeframe between 3-5 days, thus, the dosage is lower each day, helping to minimize potential collateral damage to the surrounding structures.

I can report that for me, whereas I had CK done over 5 days, I have maintained 100% of my serviceable hearing (what my hearing was at time of treatment) from what it was 5 yrs ago at time of treatment. I can also report that Beth Israel Deaconess in Boston has published a paper noting 100% hearing preservation (for serviceable hearing at time of treatment) for their skull base/AN patients.  I have a copy of the paper and awaiting final word that is available to share.

Hope this helps.
Phyl

[Phillies]

Wow. So it looks like fractionlized CK might indeed increase my chances of keeping my hearing. And just when I was certain I was going for the gamma knife. I did a search on the cyber knife page and found a few places in North NJ where I live. Although I'm not sure how much they deal with AN's. Closest one to my house is at a cancer center for example. Wonder if it would matter much which one I tried going to

[ppearl214]

One of the goals of "fractionating" (ie: CK, FSR, Novalis, Trilogy) is hearing preservation.

If you read the CK site, you will see that CK is used for many different ailments, many of them malignant growths (ie: prostate cancer, now used for breast cancer, etc).  So, they will note their use for cancer treatments but if you look at it carefully, you will also see it being used for benign issues such as AVM's, meningiomas and yes, AN's.

Experience is key.  Many AN'ers here on these forums have had CK done as well as FSR, Trilogy, etc.  Leave no stone unturned in doing your homework as you want to be able to make the best, well-informed decision you can for you and your particular/unique AN journey.

Please remember that all treatment options (surgical and radio) come with risks (as with any medical treatment option for any ailment) and "individual results may vary....."  Homework is key and it looks like you are doing all the right things to help achieve your goal. Hang in there!

Phyl

[Phillies]

Thanks,

I guess I'm looking for a cyber knife center that just deals with AN's but that's probably not something thatdoes not exist. But I wonder, regardless to how good your doctors are or how many AN's they have treated, since the machine is doing the work rather than a doctor's hands in brain surgery perhaps is doesn't matter as much where I go for gamma or cyber knife?

[leapyrtwins]

But I wonder, regardless to how good your doctors are or how many AN's they have treated, since the machine is doing the work rather than a doctor's hands in brain surgery perhaps is doesn't matter as much where I go for gamma or cyber knife?

I didn't have GK or CK - I opted for surgery - but I'm not so sure I agree with this reasoning.

I think the machine and the doctor are equally important, but I'd imagine that the doc would be very particular about the machine that he decides to work with.  To that end, I think if you find a good, experienced doc the machine he uses will meet his standards.

Just my two cents,

Jan

[scottomaha]

Well my personal experience indicates that is true.  I had Gamma Knife procedure performed at Methodist Hospital in Omaha NE approximately 2 years ago.  Since that time my hearing definately has deteriorated.  It has gotten bad enough that I am preparing to investigate any and all additional options.  Any suggestions would be welcomed.  The ringing in my ear, and the balance issues are constant reminders of the condition.   Good luck!

[Phillies]

Sorry to hear of your problems. Have you spoken to the doctors who did your radiation treatment?