Still doing well- after Proton Therapy

[KeepSmiling]

41 months ago he had proton therapy. He is still doing well. If you want to talk to him about proton therapy send us a private message.  Best wishes to all!

[wonwayout]

Checking in on post proton treatment.  I was relatively stable until about 7 weeks after.  I have now experienced a significant drop in hearing and increase in Tinnitus.  Hearing aids are not helping although I have an ENT appt next week.  What was your post proton therapy experience like?  Did you have significant drops in audio quaality that was temporary or was any incremental loss after treatment permanent? 

[KeepSmiling]

OH- I feel for you- and I REALLY hope your issues improve! PLZ-> Click on my profile "keep Smiling" and see the posts about the spouse. There was profound hearing loss in the left ear and some tinnitus PRIOR to proton therapy. After the Proton therapy at Massachusetts General Hospital in Juy-Aug 2013, there continues to be deafness in that ear and only mild occasional tinnitus. The good news-> Time has elapsed since the Aug 2013 proton treatment ended and no new issues/symptoms have emerged and no growth of tumor has occurred. None.  It is now March 2017.

Please note->We recently purchased a special hearing aid by Signia that is programmable. Please research it. It might be helpful to you or it might not. This is not an endorsement, just a statement that this is what is being used and it has , so far, offered good results.

Wireless CROS/BiCROS in Real Life

The primax wireless CROS solution is designed for people who have normal hearing in one ear and un-aidable hearing loss in the other. Sounds from the un-aidable side are received by the microphones of a CROS Pure transmitter device, processed, and wirelessly transmitted to the side with normal hearing.

The primax wireless BiCROS solution is designed for people with un-aidable hearing loss in one ear and aidable hearing loss in the other. Sound from the un-aidable side is received by the CROS Pure, processed and transmitted to the primax hearing aid on the other side. The primax hearing aid delivers the combined and amplified sound from both devices into the better ear.

Wonwayout , We both send you our sincere wishes that things get better for you. You are not alone. Send us a PM if we can provide support. We rarely are at the discussion forum.

 In writing these posts our intent is to help anyone that we can help. We want to "pay it forward". We aren't getting any economic gains  in any way, shape or form for mentioning our experience with proton treatment. Best to all of you!

[wonwayout]

Thanks for your prompt reply.  In that I am only a couple of months post treatment, I will see how it evolves over the next while.  The optional hearing aid info is excellent but I hesitate to make any major investments until I am at least 18 months post treatment. I'm told by my MD that changed are likely to continue and that I should hold off on major investments.  I use Widex brand now and am seeing the audiologist next week.  We will see what happens between now and then.
In the meantime, I am taking Aleve and occasional predisone to help reduce swelling in hopes of warding off further challenge.  Seems like we don't know where we land until we get there. 

[martyj17]

Thinking of proton beam therapy for my 1cm AN at MGH 63 year old male  At the moment, Harvard Pilgrim is denying coverage.  Hopefully, that will change shortly.  My question is about your hearing?  Has your hearing declined in both ears after the proton beam therapy?

Thanks!

[KeepSmiling]

Dear newbie named "M"-This is the wife writing a reply here, on behalf of my busy guy. Sorry for the delayed reply- Send me a Personal Message for a more prompt reply.

 He was completely deaf in his ear with the acoustic neuroma before he had the proton treatment. There is still good hearing in the other ear.

I wish you well.