FSR Results at 18 Months

[Dealy]

Just Received my MRI Results from my year and a half MRI Scan. Just a refresher for those reading this for the first time. I had a 2.5 CM in the right ear-diagnosed in 2005 after my face went numb at work. I am an NF2. Had surgery on left ear leaving me deaf in 1988 for a 1.5CM-so far-no regrowth on that side. Had FSR Radiation of 25 sessions at Johns Hopkins in summer of 2006. Results of this scan. Tumor is stable and is shrinking in size. Prior measurements were in June of 2007 2.58x2.1 CM-this measurement 2.3 X 2.1 CM. Hearing that was 100% in 2005 is now down to a total loss of 71%-leaving me only 29% total hearing Left in my only good ear. I can still Hear with use of a Hearing Aid but it is very tinny and muffled-but it is better than nothing. So I guess I am out of the woods for another 6 months.
Too Sheryl R.- I just read your post in Venting about losing Hearing. I can relate too that. I have not been able too listen too music over 2 years now. Kinda dampers the Holiday Spirit However I am grateful for being able TOO HEAR ANYTHING PERIOD. Thanks all_Ron

[sgerrard]

Hey Ron,

That's kind of a half-glass-of-water result, you can see it as half empty or half full depending on your mood. Could have been better, could have been worse. In a lot of ways, limiting the damage of ANs to just hearing loss is a good thing, but it does seem to be the hardest one to beat.

I am curious whether you started to have hearing loss before the FSR in mid 2006, or did it all happen afterwards? I am getting the impression that preserving hearing is more likely when it is close to 100% at the time of treatment, and less likely the less you go in with. I wonder if that applies in your case.

If you can say you are done with having tumors, and only have hearing left to worry about, I guess it has to be good news. My sister has been a sign-language interpreter for many years. It is amazing what deaf people are able to do these days, so even if it goes there, all is not lost. Hopefully you can hang on to the tinny muffled sound, and maybe they will have better hearing aids in the years to come, who knows.

Here's a wish that 2008 has something good in store for you.

Steve

[Dealy]

Steve: At this point in my life_ I consider that my glass is half full. If it had grown-that would have meant surgery and all kind of complications job wise. I have 2 and a half years to go and a can retire-so at this point that is my goal whether I go deaf or not. I currently work for the State of Kansas and have been assured that deafness will not lead to job dismissal. Grant it I still am not out of the woods entirely being an NF2 but I feel as the months progress and it continues to shrink-that is good news for me. My hearing was not 100% when I got radiation. However back then I could talk and hear without use of a Hearing Aid and talk on the phone-so the biggest decline really came after it swoll at 6 months and that started to initiate the Hearing decline. I have read where 70% of NF2's retain their Hearing if they go in with Good Hearing prior to FSR-I apparently did not make that 70% cut. Beggers cannot be chooser-so I will take the report as the best news I can have for the first  part of 2008. Thanks for the reply though. Thanks_Ron

[Cheryl R]

I am grateful for what hearing I do have also but I am a ways behind you in the NF2 hearing loss journey and am in the adjustment phase.       In time one learns to cope but it has been hard lately and having the busier holiday season didn't help any.    I get overwhelmed easier when have too much going on and was scheduled more at work too.       
   We now have the captioned phone and I am using the closed caption on tv.     To those of us who laughed at the captioning at the AN symposium,I am discovering that is common place when one reads captioning.         They come up with some very interesting words.              I can use our old phone with some people but not others and get most of the conversation.           I avoid the phone at work  and have made my fellow nurses aware I am not lazy.      I still manage with humans if I am close to you.                           
We had the last family Chtristmas yesterday and it was hard to be sitting and kind of maybe figure out what the topic of conversation was but that was it.     
I am grateful I can still walk and enjoy many things and coping comes in time.        I can just hope the cochlear implant is workable for me in the future.
                                                 Cheryl R

[Dealy]

Cheryl- First- I am sorry I misspelled your first name. I realized that after I sent it then thought-well if she reads it she will figure out I am talking about her. Anyway- you seem to be at the stage in Hearing that I was right around my initial FSr treatment and some month's after that. At least then I could talk on the phone and make out most of conversation if you talked directly to my face. The question I have for you is this- You have mentioned the future possibility of a Cochlear Implant-Do you not have too have a Hearing Nerve for that too work? If you would have your AN removed-how would it be possible to save your Hearing Nerve. I know Nita had one after Radiation treatment but she still had a hearing Nerve Intact. I have asked the Surgeon in KC about that possibility and he should acted like that might not be possible with radiation damage. Then how did Nita manage too get her's too work? Just Curious. It might be a possible alternative when and if my hearing goes. Thanks_ron.

[Cheryl R]

Hi Ron.      My dr will not try the cochlear implant until I am deaf so that way if it does not work then I am not losing the hearing prematurely.     He has had some success with some NF2's and CIs  but not all.     So I realize there are no guarantees  and just have to hope there is a working acoustic nerve.    It would be via mid fossa and do tumor removal also.        So far the tumor is all in the IAC.      I will be doing MRI the end of the month and go back to Iowa City mid Feb.        Supposedly one can try the ABI if the CI doesn't work.    I am not sure if I want to go that far but some people have had luck with them.
   Doing the CI even though one has had radiation is just a last ditch effort also to maybe retain some hearing.      I am not sure if there have been any other CI's done on a  radiated nerve other than Nita.               I will have to ask her as we are both on another AN site also.   
        So I just keep take it all day by day.                               Cheryl  R

[ppearl214]

Ron,

No increase in size, the size seems to be stablized... I take that as great news!   Truly!

What more can I say?  You KNOW I'm cheering you on!

I like that report... a lovely way to start the new year.  It's stablized and that works for me! I know you are contending with the hearing loss... and I know you are hanging tough... but me also likes no further growth and as you note, slight shrinkage in size.

Phyl

[Dealy]

Thanks Phyl for your input and concern. Can always depend on you I know-sweet gal that you are. Cheryl R.- iF You get a chance-please ask Nita about her Cochlear Implant and how it is working on her Radiated Nerve. I am pretty sure she got it on her side that went dead on it's own before she got FSR. I do know that both sides were Radiated and she waited 5 years for the CI because she cannot have MRI's anymore-only CT Scans. Please Reply when you find out. Thanks- As always_Ron.

[mema]

Ron,


Sounds like good news to me.  Just wondering why do you get an MRI every 6 months.  Is it because your are NF2.  My radiation was done in 2005 and I am on a yearly MRI basis.
       
                                  mema

[Pablo]

I had radiation in June 2006 and have been getting MRIs every six months until now. My doctor believes that the first two years are critical to understand the results of the treatment and to track on changes in hearing.

[mema]

Pablo,



So does that mean that more hearing loss means tumor growing?  I actually won't get another  hearing test.
,  After the last one I got an earache.  from the pressure.  I get earaches often from pressure or noise, etc.

[candtlaw]

so I am not the only one who got a earaches after the audiogram......  my ringing got in the way mostly hearing the beeps... 

[Pablo]

Pablo,



So does that mean that more hearing loss means tumor growing?  I actually won't get another  hearing test.
,  After the last one I got an earache.  from the pressure.  I get earaches often from pressure or noise, etc.

Not necesssarily. Hearing loss after several months of treatment is not uncommon and is mostly due to radiation effect on healthy tissue (i.e. the hearing nerve). This effect is mostly seen as hearing loss in the upper frequencies. Also, and depending on the location of the AN and how much it is pressing on the nerve, even after treatment, the tumor doesn't shrink fast enough to prevent additional hearing loss. However, based on researchs , it is proven that hearing loss rate after radiation is always lower than before treatment. It is also expeted that in most cases hearing is stabilized after 18 - 24 months after treatment, so there is no guarantee that additional hearing loss won't happen.
I had my FSR in June 2006, my recent MRI shows about 3 mm smaller than it was before treatment, however, I've been struggling with my hearing until now.