I had Cyber knife almost two years ago… this past week I had a MRI . Again no change in my AVM. My Neurosurgeon was not happy,he said wait till December and we will do radiation (again). He also said my RadiationOncologist wants me to have a EMBO (now), but my he thinks its to risky. I have a appointment with the Radiation Oncologist on July 1st . I guess the choice will be mine to make in the end. I didn’t think I would have to make these choices…I thought 1 treatment and done !!!
Hi pauline I to have to have radiation done again. Mine will however been done 3 years after my 1 st one. I had to embolizations they weren’t fun, but can’t say one way or the other if i would do them again. I do know that i was to have 4 but they decided 2 was good enough b/c of all the risks. So i say go with your gut. Maybe if you just do more radiation by next year it could be gone. Are treatments were done close together so I know exactly how you feel. I thought 2 years and i’m done. Totally not the case. And i’m completely bummed. Good luck
HI PAULINE, I KNOW HOW YOU FEEL I HAVE A RESIDUAL AVM THEY WANT TO DO ANOTHER ANGIO IN THE FALL AND THEN FIX IT. I HAD TO HAVE MY BONE FLAP REMOVED AND THEY WILL TAKE CARE OF THAT AT THE SAME TIME. I HAVE PINCHED NERVES IN MY NECK AND THEY WANT TO FIX THEM SOON BECAUSE I’M LOSING THE FEELING IN MY ARMS AND HANDS. DOES IT NEVER END FOR US ? I’M SICK OF IT , BUT I REFUSE TO GIVE UP.I’M PRAYING FOR YOU. KAREN
hi pauline, my heart sunk for you. these choices are sickening to make. i dont really know what to say to you. i just wanted to say i will pray for you to have the strength and to make the choice that is in your heart. i wish i could take the heaviness off your shoulders. you are such a beautiful person and i dont want you to hurt or be scared. you are so strong.
love with all my heart xxx
I’ve had 4 treatments with radiation and I thought I was done as well! The doctors even took me off of all medications. However, within a week, I’m back to seeing the doctor. I understand and feel you completely! Stay strong and try to be positive (I know its hard) but I believe that there must be light at the end of the tunnel, however long that tunnel is!
Hi Paulina. Hang on and don’t give up hope. You are still here and you seem like a very strong person. I’ll pray for you to find peace with whatever decision you make. Remember, what doesn’t kill us only serves to make us stronger.
i am so sorry you have to make such a decision…you are in my prayers…sending you lots of positive energies…hang in there one day you will be avm free
Hey, Pauline- hard to hear and I am sorry. I, too, had an angio yesterday and the damn thing is still there - 3 years after Gamma. Not happy. So, we should maybe double date on the next radiation surgery?
Pauline I am so sorry to hear this. I hope you the best in making this decision, and the best of luck in whatever you decide. Whatever it is we are here for you.
Thank you guys for your support !
I also am going July 1st to meet a radiation doctor. i havent yet had any surgeries, but the doctor stated he thinks the radiation will be best on my golf ball size avm for the time being due to no bleeding at this point. they told me i have to get another angio done before i have the radiation treatment. the doctor i have previously been dealing with stated they do one treatment of radiation and then i will have to go back every six months to get MRI’s for the next 3 years to watch changes in the avm.
Pauline- sucks to hear there was no change. It is crazy to me that sometimes the radiation doesn’t provide results, and yet other times it shrinks it up completely! Do you know how/why it sometimes works and doesn’t othertimes. Does it have to do with the location and the radiations ability to “get” to the AVM? Or the size? Or what??? I really am very saddened to hear this, as I know it must be very devastating for you.
Let us know what the doc says about the embo. And of course mine are different, but if you have any questions about the embo itself just let me know!!!
Hang in there lady! xoxo
Pauline, I know how disappointed you are. I’m so sorry.