Hearing preservation CK and GK experiences

[ivana]

Hello everyone!
I would love to hear positive outcomes with hearing preservation in long term. 5, 10 or even more years after gamma knife of cyber knife.
I am musician and sound producer and hearing is everything in my life, but I think it is same for everybody no matter of proffesion. Sorry for my English. Thank you a lot, this means so much!

[gbly]

Ivana,
I am only 6 months post radiation, but my doctor has said that everyone is different.  I could stay where I am at with my hearing, definitely loss, or sometimes the radiation will slowly make the hearing go away.  Mine is on a steady decline, but not sure if I will loss all of it.  I have read several members get hearing aids and have some hearing preservation.  I suspect we are all different.  I know you have concerns with your profession.  Keep positive and keep us posted on your progress.
GB

[ivana]

Ivana,
I am only 6 months post radiation, but my doctor has said that everyone is different.  I could stay where I am at with my hearing, definitely loss, or sometimes the radiation will slowly make the hearing go away.  Mine is on a steady decline, but not sure if I will loss all of it.  I have read several members get hearing aids and have some hearing preservation.  I suspect we are all different.  I know you have concerns with your profession.  Keep positive and keep us posted on your progress.
GB

Thank you so much for reply! How was your hearing before therapy? Was it gk or ck? And how big was an? Mine is 9x8x6 in inner ear canal...causes me a lot symthoms...hearing is still holding good...

[richcooks]

Hi Ivana,

  I can help you with my experience and my brothers.  We were both diagnosed with a AN and each had different treatments with different results.

My brother had Gamma Knife in 2010.  It resulted in a loss of hearing in his affected ear.  Totally deaf in one ear.  He also had some bouts with Veritgo and still has tinitus.  I believe he chose Gamma Knife because that was the procedure his Doctor used.  With Gamma Knife he had the HALO bolted to his head! 

I had Fractionated Sterotactic Radiation (FSR) in December 2010.  I had five treatments.  Once a day for 5 consecutive days.   I felt tired and sluggish after my treatments.  But it is like getting an MRI with your head bolted to a table.  What they did for me was they molded a face mask, like a hockey mask, and the mask is bolted to the table.  As a result of the treatment my hearing did not diminish at all.  I still have tinitius but I still have the same level of hearing from before my treatment.  The Tumor has stopped growing and is considered dead.  I still have MRIs every two years as a precaution.

Why is this?  Well the Gamma Knife is one large does of radiation and it tends to hit the target tumor but there is always some collateral damage to surrounding healthy tissue. The healthy tissue is the auditory nerve so as a result you have some or total hearing loss.   With FSR you get 5 smaller doses.  If some healthy tissue is accidentally targeted there is sufficient time between doses for the tissue to recover.  And with the smaller does there is a lower probability of exposing health tissue to the radiation.

I researched this over and over again before I decided on FSR.  The other thing is that not all Doctors do all the treatments.  I went to a AN specialist at UPenn and he only did Gamma Knife.  I found an Oncologist near my home, on the Jersey shore, who did FSR and things have worked out so far.  I also believe that you do not need a AN specialist to Zap your tumor.  An Oncologist zaps all kinds of tumors every day.  Find a relatively young one who still loves his work and you should be in good hands. 

Feel free to ask me any questions you may have.  For background,  I noticed ringing in my ear and had an MRI and discovered a 1mm tumor in 2003.  Very very very small.  I had an MRI every year and it would grow 1mm a year.  After 7 years it was time to do something because it just kept growing. 

[Sjoshi]

With the FSR did you have any facial express problem? Could you please let me know which doctor did you use for this treatment?

[gbly]

Ivana,
Sorry for the delay.  I am like richcooks in not going with GK.  I did 3 doses of proton therapy over a week, with the mask.   I had lost approx 50-60% of my hearing before, that is why I figured out something was wrong.  I woke up one morning and had lost all of the hearing, scared me like nothing I had ever experienced.  I was originally in a WW, but at the year mark, it had turned into a rapid growing AN.

After the radiation, I have lost some more hearing, I would say I have very little left, I do have a hearing aid and when it is in, I hear some, but once out, nothing.  Might be somewhat dependent on the hearing aid, but not sure.  I had some vertigo before the treatment, but none after.  My face was fine, but about a month or so after, my nerve might have gotten stretched when the tumor swelled and then shrank.  It is getting better with time, Sept. will be a year. 

My 6 month MRI showed that the radiation worked and the tumor was dying.  Dr. said come back in Feb for another.  Steroids help with the face, and I know with time will get better and better.  I look at is as a small price to pay.  My blinking is the most obvious of something wrong, my eye's shutting in not synched.  I do facial exercises to get it better or keep everything to kick in and work...

I hope that helps and keep us posted on what you are thinking.  We are hear to listen and let you know what happened with us.

Left ear AN
.4 cm - April 2019
.7 cm - Aug 2019
1.7 cm AN - Aug 2020
Sept 2020 start 3 rounds of Proton Therapy
Total dose of 2100 cGy (centigray) in three separate doses of 700 cGy each.

[mwatto]

My hearing loss is minimal (maybe in some frequencies?)  and no tinnitus (or so faint I am not aware of it) I had CK 3 x fractionated two and a half years ago. No issues - testing hearing this year in a months time for my specialist as  do every year and next MRI will be at 3 years in Feb next year. No issues to date.