Author Topic: Radiation Results  (Read 2933 times)

Dealy

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Radiation Results
« on: September 24, 2013, 11:24:18 am »
I have not been on this site for quite some time. I want to post some good news and maybe provide hope for someone else. Seven years ago I opted to get 25 sessions of Radiation Treatment for an AN in my right ear-measuring around 2.7CM. Back in 1988 I had surgery in Kansas City on a left AN-removed tumor and hearing nerve. That makes me an NF2. After research I opted for radiation treatment because I did not want to go through another risk of a operation and have my head cut open again. Results-tumor has shrunk in size and is stable. Johns Hopkins has suggested I can wait 2 to 3 years now for another MRI. I still have some hearing left with the use of a hearing aid. Do I reccomend this for everyone-no- but at the time it felt right for me and I have no regrets. I faceed every year hoping this thing would not grow-and  it has not. Some people say an NF2 should never have radiation-period. Well I am living proof that theory does not hold much water for me. Hope this news gives someone out their another option if you choose that route. Thanks for listening and God Bless-Ron

Cheryl R

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Re: Radiation Results
« Reply #1 on: September 24, 2013, 08:42:19 pm »
Ron, I am glad to hear it is going as well for you as can with the NF2.     So far so good for me and no tumor for 5 yrs now.  I was told in April can go 5 yrs before MRI unless feel symptoms.      I was surprised to hear that could wait that long.             I hope it continues to keep going well for you!
                                                              Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

jaylogs

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Re: Radiation Results
« Reply #2 on: September 24, 2013, 11:25:45 pm »
Hey Ron, glad to meet you!! Thank you for sharing your story with us, I hope it will indeed give someone some hope if they are faced with what you had to go through! Congrats!!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Dealy

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Re: Radiation Results
« Reply #3 on: September 25, 2013, 11:28:33 am »
Thank you Cheryl R. for your reply and concern. I have been very fortunate to be able to work a 40 hour job these past 7 years without any major complications. My job does not require extensive amounts of hearing so I can function fine with the use of a hearing aid. I am planning to retire though. I can feel these old bones creaking already> I am 64 now-in four months I will be 65 so I think it is time. Also last week we find out my wife has Thyroid Cancer so now we need to deal with that. She took care of me though when we went to Baltimore back in 2006 when I got my radiation treatment at Johns Hopkins. So it is my turn to take care of her now. Thank you also to Jaylogs. My a gobal moderator-that must keep you on your toes. I am just trying to move on with my life and trying not to dwell on the negative. This site was such a God send though when I found out I had another tumor= toomah in 2005. I just did not know what to do or where to turn. I was on this site constantly. It helped me make my decision though what I wanted to do. That was of course FSR Radiation. I look back now and know when someone is confronted with an AN-no matter the size -it is like a severe punch to the face. Too make matters worse-I had to deal with a second tumor now. However- I feel in a way that this site plus my tremondous faith got me threw my worse times. It is not over by no means-but at least their is always hope-and that's why as humans sometimes we can endure and hang on. Thanks for all-God Bless.

Echo

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Re: Radiation Results
« Reply #4 on: September 25, 2013, 01:14:29 pm »
Hello Dealy,

I am two weeks post Gamma Knife today and doing well.  My pins sites have healed beautifully and I'm feeling such relief to have the treatment behind me. 

Thank you so much for posting such a positive update.  It is very encouraging to hear you managed to continue working a 40 hour week.  I'm hoping for the same outcome with minimal interruptions over the next many months while the Gamma does it's work.

I wish you and your wife strength and success as you now go through her journey back to wellness.

Cathie.
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

Dealy

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Re: Radiation Results
« Reply #5 on: September 25, 2013, 01:44:16 pm »
Echo=Cathie- The wierd thing is when I had my first tumor removed in KC in 1988-they told me to have an MRI in 5 years and this was an isolated case-wrong. Eighteen years later I get a 2nd one. I never had an MRI until my face went numb at work. Their is a guy that lives on our strret that had a 1.5CM removed in KC around 3 years ago-they removed AN and saved his hearing. I told him to get an MRI and chechup. He says no. Geez-don't make the same mistake I did. These things are unpredictable. Wish you luck and care. Thanks for your concern. One thing good about this site-most people can relate to what you are talking about are one's concerns-it is just human nature too want too comunicate with someone in almost the same boat- take care.