Hearing loss with CK??

[patt]

Hi Friends ---

First of all, I want to thank everyone on this forum for all the help and kind words.  I am on here everyday trying to get as much information that I can.  I did get my packet of info -- such great information also.

I have a 2.7cm vestibulat schwannoma.  My first appointment will be on Monday to see a Radiation Oncologist.   The size is bothering me -- wondering if it is too big for that treatment.   What have your experience been with the size of the tumor??

I lost 100% word recognition in my RIGHT ear, but since that time - March 3, 2010, I have regain a good part of that back.   I have always had hearing loss in my left ear.  My tumor is in my RIGHT ear.   I feel more comfortable with people on my RIGHT side and I sleep on my LEFT side, because of the hearing that I have regained in my RIGHT ear.

MY GREATEST FEAR is --- lossing my hearing that I have now in my RIGHT ear.    Did anyone experience hearing loss AFTER  their CK treatment??   I have been reading that there is NO pain with the CK treatment.  BUT -----  what are the surprises AFTER.  When we talk AFTER --- do we mean the next week -- next month - next year??

Thank you for listening to me --- as you can see  -- I have alot of questions -- need lots of help.   Hope you can answer some of my questions.

Thanks again ---
Patt from Minnesota

[Cheryl R]

Patt,   You are similar to us with NF2 and the best treatment can be trickier to figure out.       You might be a candidate for a cochlear implant.       Some drs will go for radiation under your circumstances and some don't.       My Iowa City dr doesn't like to but have heard some Mayo ones will.             Have you talked to House  as in your case might be worth it.         
         Wish I had the answer for you.          I have been all surgery  and smaller tumors.     Keep asking till have the best dr for your case.
                                     Cheryl R
                                       

[cindyj]

Hi, Patt!  Welcome - glad you found us...My understanding is that swelling from CK or GK is to be expected up to 3, 5 or six months post treatment, in general.  It is generally treated with steroids and subsides sooner rather than later.  The hearing loss will be dependent on your specific case, I think?  I'm sure some of our CK people will be along to give you some insight/advice/thoughts related to CK treatment.

Best of luck to you,

Cindy

[Warm_in_MN]

Hi Patt,

I had treatment in November at the CK center in St. Joseph's Hospital, St. Paul.  Great group of people! 

At this stage, my hearing has become minimally worse.  Tinnitus about the same.  Sometimes it seems louder.  It's hard for me to define. 

I'm going through a time frame when most changes to the tumor from the radiation are happening.  I'm hoping that things might even improve with time.  I'm happy with the outcome of my CK vs the alternatives.

It's been my understanding that the odds of hearing getting worse are much greater with microsurgery vs. radiation.  A great website to check out CK results is the forum at www.cyberknife.com.

If you would like to learn more about my experience with CK feel free to write me.

Best wishes towards deciding what's best for you.

Bob