1 Year MRI-Hearing Test Results-FSR

[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

[Yvette]

I wish you the best Ron, Yvette
p.s. Had custom earplugs made this month! You are so right to be protective of the last good ear.

[Dealy]

Official word is in from Jojns Hopkins today where I got FSR Radiation last summer. Here is the conclusions briefly> The volume of the tumor was 7.7 CM on intial treatment. At 9 months it swoll to a volume of 8.6Cc. It is now at 6 Cubic Centimeters. Note-they are measuring here the cubic volume at this point which means the tumor is shrinking. The report states also that their is Necrosis in the center of the mass. This is such good news-I am so thankful. At this point FSR is working and I am an NF2. The only down side of this is it is affecting my hearing in my only hearing ear left. All sounds sound tinny to me-even with a Hearing Aid. JHH is requeting another MRI in 6 months. Good News and also shows that FSR is also A viable option for treatment. Thanks-Ron

[susier]

I'm a newbie....whagt is SSD?

[Dealy]

THANK you Bruce for your reply. It has been a long journey from when I was orginally diagnosed in 2005. One's life is forever altered by these things- (AN's) and especially since I am an NF2. I just thank God for every day and appreciate what I have left. That is hearing too some degree. That is definitely the toughest road too haul but I have no choice but too endure. My goal now is too provide a source of comfort for other's dealing with an AN-no matter their circumstances. I hope in some small way I can provide this comfort for other's. One can survive with an AN. As I stated in my previous posts-this is my 2nd go around. When I had surgery in 1988 for my first AN their was no such thing as a support group. This has and continues too provide me with an avenue to share with other's not only their experiences but my own as we experience whatever an AN throws at you. Thanks Ron. Have a Good Day All. Stop and Smell the Roses of Life.

[Brendalu]

Ron,
Congratulations!!  I am keeping you in my thoughts and prayers.
Brendalu

[mema]

Ron,                                                                                                                                                                                       


Great news. Congrats!                                                                                                                                                                   

                              mema

[neal r. lyons]

Great to hear you are having positive results with the FSR!  Best wishes- Neal

[ppearl214]

Ron, my belated congrats to you on this terrific news! Continued wellness to you!

Phyl

[jerseygirl]

Sounds great! Best wishes,

              Eve

[Dealy]

Thanks for all the replies so far from you all. I am having small shooters in my face every day now. They do not last long-only a sec or so. They are not intense or something I cannot endure. I am just wondering if this is from the tumor pulling away from the facial nerve. Ever since this all started my whole side of my face has been numb and inside my mouth and tongue on the right side. It appears that my swalloing has improved alittle. I can swallow more now on the right side w/o food getting stuck but I am still regulated to soft food and smaller portions of meat etc. Thanks-Ron. Dreary day out today-it is raining but we need the mositure. We have been having close too 100 degree days all last week in Kansas.