ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Dealy on July 23, 2008, 05:31:10 am
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Last Thursday I had my 2 year MRI and hearing Test after having FSR Radiation at Johns Hopkins-25 sessions . if you are reading this for the first time-My story- i am an Nf2. First surgery in 1988 in Left Ear for a 1.5 AN-no problems, but left me deaf in that ear. In 2005-due too numbness in right side of my face a 2.5 AN found in right ear. Never suspected this when I had my first surgery and AN. Was told the first was an isolated case.WRONG. Anyway chose FSR Radiation to try to save what hearing I have left in right ear-which is hardly any. I had an MRI in December of 2007. Hearing Left was 29% left-that was it. This MRI shows that Hearing Has improved by 10%. Tumor continues to shrink. Measurement in December was 2.3 x 2.1 CM. This time it was 2.1 x 1.8 CM. This is GREAT NEWS for me-especially being an NF2. So that is my story. I will not get another MRI for another year now. I was getting one every 6 months. Too those facing this awful journey-their is hope-it does not matter if you choose surgery or radiation. i have been their with both. I am so happy and elated-Take Care for all my friends on this site. I do not post much anymore-However I just wanted to let those know who read this thread. NEVER-NEVER GIVE UP. I am a living testimony to that. Take Care ALL_RON
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Ron,
what do I say? :) Congrats on the terrific news! you KNOW I send the continued healing hugglez and onward and upward for you!
Truly! Congrats! :)
Phyl
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Ron,
Great news! I too just had my 2 1/2 year MRI and no growth. An increase in hearing is wonderful. That something we don't hear on the forum that often. I don't post as often as I used to either. Its not that I don't care about others, and whats going on. For me I think theres a little fear to read about re-occurence. Heres to a year of no worry.
mema
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Hi Ron,
Glad to hear the news. 2 years with continued shrinkage is a very good milestone to pass. Thumbs up on that! And some hearing has got to be better than none, so thumbs up on that too. Switching to the annual MRI means you are over the hump, so to speak. What the heck, thumbs up on that as well.
Thumbs up!
Steve
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Ron,
This is great! Thanks for posting. Radiation and NF2 is the subject of great controversy so your results are actually very encouraging . I hope you will post again should anything change (for the better I hope)! Take care,
Eve
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;D AWSOME news Ron!
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Ron:
Please accept my congratulations on your 2-year MRI results. That is great news, obviously. That you've regained some hearing ability is even better. Your story is definitely inspirational. Thanks so much for sharing it with us and may your success continue.
Jim
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CONGRATS RON....That is GREAT news!!!!!!! ;D
I'm very happy to hear this...... ;D ;D
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Thanks too Phyl-Mema-Steve-Eve-Arushi-Jim Scott-Mindy Andy- for your kind words and thoughts. My main message to people on this site is too be diligent. You see after my surgery in 1988- I put this whole AN thing behind me and did not follow up ever with MRI's I figured there was no need too to do. Well was I in for a surprize when another one shows up in 2005-by that time it is 2.5CM in size. Lord only knows how long that had been growing in my head without me realizing it. I am not trying to scare people by no means. Back in 1988 I was told my left sided tumor was an isolated incident. I knew about NF2's-and thought tp myself- "Man how awful to be one of those". The doctor who did my surgery back in 1988 told me too do MRI's every 5 years. Too save money- I had none. So my advice is-Be diligent and aware-and like I said before- Never-Never give up. I miss my hearing so much but I still have use of some hearing with the use of a Hearing Aid. As you have seen-that even improved some. It still is not easy- I still struggle with pain too the face my TN-but it is bearable. I still feel that I achieved my goal- I did not want my head opened up again-so I guess too this point I got my wish. Eve- I will post if their are dramatic changes. Like Mema- I do look at this site still every once in awhile. My heart goes out too those facing this for the first time. However- I look at it this way-explore your options and choose the best course and hospital and procedure that you will not regret. I followed the advice of one person-cannot recall now who that was- this person said do not let money -distance- etc. decide where you will go because this can be a life altering situation that you cannot change. I decided on 25 sessions of FSR-and do not regret that decision-even though I had too fly all the way too Baltimore from Kansas. Yes- I realize it still can fail- but I achieved a milestone for me and made it 2 years now. I will not give up now but only look for a better life no matter the outcome or circumstances. Thanks All- Luv you guys- Ron
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Sorry that I am just getting to this, but congrats on the MRI results! I pray for continued shrinkage and ultimate necrosis! That's awesome!
Brian
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Dealy...
Great news. Thanks for the advice and experience you shared with me when i was investigating FSR. I am glad this is working out for you and to find you in such great spirits.
All good things to you..
Trish
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Sorry, I've been delinquent also :o
Congratulations, Dealy! ;D
Jan
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Congratulations from me, too, Ron for your great MRI results. I hope it just gets better and better for you.
Take care,
Sue in Vancouver USA