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1 Year MRI-Hearing Test Results-FSR

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Dealy:
 Well I got the preliminary results from my 1 year MRI from FSR radiation received one year ago at Johns Hopkins.  Too those that are reading this for the first time I am an Nf2. Had surgery back in 1988 for a 1.5CM AN that left me deaf in the left ear with no other complications but SSd. New tumor found in 2005 in Right Ear. Measured around 2.5CM depending on who reads my MRI. Had FSR Radiation last summer at Johns Hopkins-25 sessions to try and save my Hearing which was at 100% when orginally diagnosed. MRI states that  AN is smaller than previous exam and shows definite evolution of areas of central necrosis. Also states it has less area of central hypodensity-whatever that means. Anyway sounds like GREAT NEWS> Hearing Test indicated a 10DB drop from 4-6-07. That disappointeed me. Hearing is now around the 50% level but I did get 88% SRT score. I am going too go ahead and invest in a Phonak Hearing Aid since this is the only way I can hear now. Audiologist was concerned that I lost 10DB so soon-so now I only have 30 too 40 DB too spare before a Hearing Aid would be useless. So anyway this has not been confirmed yet by JHH but I was so excited that I just had too post the news now. You all have a Greta Holiday. Thanks-Ron

Yvette:
Good grief Ron, I can't believe what you've been through...it's hard to figure out if your post was good news or not so good. What is your prognosis? Are you done now? Is your hearing in further danger, or is it halted at the level you're at now? I'm SSD after my AN removal via translab, and now I'm so fearful of any damage to the other ear. Take care of you, Yvette

Dealy:
Yvette- At this point I am taking this as Good News because the Prelim MRI indicates signs of deffinite Necrosis and even some shrinkage of 1Mm. My hearing is another story in itself. I expected some loss from radiation but not this fast. I am now around the 50% range in my only Hearing Ear and Audiologist has informed me that I only have 30 to 40 Decibels to spare> If it does not stablize then I am heading towards total deafness. That would have been the outcome anyway if I had chosen the surgery route so my reasoning for FSR Radiation even though indications are that iit can be 1 to 2MM off. Dr. in Kansas City wanted to do surgery 2 years ago and implant an ABR Brain Stem. I told him at the time I wanted (if I go deaf) to do it on my own terms instead of waking up totally deaf which would have been the case. I lived with SSD for 18 years and for me that was the norm. Heck I would never wear any ear protection or try to protect my only Hearing Ear. When people post on this site that they insist on having their music loud etc. I cringe what they are doing too their Hearing. The makers of my Hearing Aids provided a study (Phonak) that anything over 85DB for prolonged use will compromise hearing. Even a Hair Dryer, So my advice of course for those with SSD- Abuse it and you run the risk too lose it. Meaning Hearing of Course. Thanks for the Reply though and concern. You just learn too take it a day at a time and expect the best. Thanks_Ron

mema:
Ron,                                                                                                                                                                                     


           Great news! 1mm smaller sounds much more encouraging than 1 mm larger.  You're so right about us ssd taking our good ear hearing for granted.  I think I better take more precautions with it.  Phew! Not to worry for another year.                                                               


                                                                                    Mema

GM:
Ron,

I hope your hearing stabilizes soon.  Have you talked to the doc about a steroid treatment?  Sometimes the hearing loss is caused by a fluid build-up from the radiation that can become permanent if not treated...

Gary

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