Author Topic: Four years post Cyber Knife  (Read 1001 times)

MG

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Four years post Cyber Knife
« on: June 06, 2020, 02:10:16 pm »
Hello ,
   I just got my MRI results back and it is not good.  :(  After having Cyber Knife radiation in 2016 I thought I would be on the road to the ending of this tumor. Nine out of ten tumors usually stop growing or shrink a little. I guess I am one of the unlucky ones. Three months ago I started having facial droop that lasted about 5 seconds each time. I haven't had many but it was alarming because I was feeling quite well.  As it turns out my tumor grew 2 more mm. Now it is 1.5 . My doctor wants me to have another MRI in six months. I asked him if I could possibly have another shot of CK and he said no. He wants to do surgery. Well, I am 70 years old and have a heart condition and I didn't want to have surgery because of health reasons to begin with. He says my tumor is sticky now from adhesion's and it won't be an easy surgery because of the facial nerve. I am so freaked out! Has this happened to anyone? Doe anyone know if you can have a second radiation treatment?

Thank you!
   MG   
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

Gearbox123

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Re: Four years post Cyber Knife
« Reply #1 on: June 07, 2020, 05:32:53 pm »
Hi MG,
          I am sorry to hear that your suffering from the A.N especially 4 years out of CK. I have heard of some people having issues after Radiation. There was a man in my support group at NYU in NYC that had to have surgery after Radiation and it was successful. I have heard the Doctors refer to some tumors as sticky. I think that is what mine is even before my Gamma Knife in 2017. I had my Gamma Knife in June 2017 for 7.5 mm AN , it swelled to 1 cm and six month later retracted back 7.5 mm. I lost some hearing, still have dizziness  more on humid days and my balance is  still not the greatest but still some things have improved . My tumor is just touching my facial nerve and it never completely died but it’s stable and I am not scheduled for another MRI until 2021.

Maybe Fractional Radiation would help you? I had consult with Dr Gil Lieberman in NYC and he was well informed , I believe he is the originally pioneer of that type of Radiation? If you are able to travel to NYC NYU has a great staff that’s where I had my Gamma Knife with Dr Kondziolka, I think he is one of best Doctors I have met that specializes in AN’s and if I need surgery which I think that I might down the road because of ear ,facial pain and headaches than I am going with him. I wish you the best of luck with your AN. I hope that you find the help that you need!

MG

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Re: Four years post Cyber Knife
« Reply #2 on: June 19, 2020, 03:35:03 am »
Hello Gearbox,
Thank you for your reply. I appreciate your advice. I am fearful of the surgery itself because I have a heart problem. My doctor said that more radiation would make it worse for the facial nerve. I will just have to see what transpires in six months.

I wish you the best!

Thanks,
   MG  :)
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

 


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