So I wanted to share the news with you as my last MRI showed that my AVM is gone two years after radiation!I know what is like reading news like this and the hope that gives to people in the same situation.
I don’t know what to expect from now on.I guess I’ll try to live my life as before the bleed but I’m having trouble getting back to normal,I am still afraid and holding back.I have an aneurysm also but the location as the doctors explained isn’t brain and it’s not that dangerous.
Congratulations @bettybo ! Wow what a life changing news. My son got Gamma Knife last year on March 2024 and current MRI said stable without any changes for the better or worst. How did your one year MRI look if you got one? Would love to hear your two year journey until it was cleared. Enjoy your AVM free life.
Congratulations, Despina! I’m so happy for you! I had my AVF embolized in 2009, and I went on to earn two black belts in Kempo Karate, and I also participated in the annual Mud Ninja obstacle course race for 7 years in a row, until it was cancelled due to Covid. So, listen to your doctors, but definitely live your new life! You earned it!
Fantastic! So great to hear. My AVM was also gone two years after the radiation. I am now only suffering from bad short time memory and poor sense of locality. How about you?
Great news.. I met with my neurosurgeon today to go over any limitations now that my AVM has been obliterated. She just told to not do anything stupid. Congrats.
I literally had GammaKnife last Friday at the National Centre for Stereotactic Radiosurgery in Sheffield, Uk. My chaperone Manny and all the team for the pre radio mri and angiogram were so amazing.
I’ve been told an MRI will follow in 2 years with an angiogram in 4 years. I’m keeping my fingers crossed for the same positive news you have shared.
hearing that there won’t be an angiogram at the end sounds a bit unusual. It’s considered the definitive confirmation, because tiny residual shunts can still exist and, after some time, they might require another treatment.
I’d truly love to celebrate this milestone with you — it would make me so happy. At the same time, I feel it’s better to mention this aspect for your own good, just to be completely safe and make sure everything has really been checked in the most thorough way.
I don’t know the reason an angiogram wasn’t necessary but he was certain about it,he wasn’t sure of the existence of an aneurysm and he sent me to another doctor so we can do an angio and confirm.He was also certain that I don’t need one and that an aneurysm doesn’t exist.
I don’t really know if I can trust them but at least for 5 years I ll have to wait…I mean that’s how much I would wait if anything was left…In two years he said I will have another MRI and we ll see…Maybe then an angiogram will be needed?
Five years, for a possible next treatment? Okay… But when did you have the first one? As far as I know, usually the DSA is done at three years. Of course, doing it too early can be counterproductive anyway, so there’s no rush… I think I’ll do the DSA around a year and a half after Gamma Knife. In my case too, nothing is visible on the MRI… but I’m waiting for the DSA to have the final word.
In your case, Maybe they’ll check both the aneurysm and any residuals. Let us know. Stay strong
These are only my guesses they didn’t tell me anything like that,just that in some cases he confirms with DSA and at others not.
I meant for the radiation treatment that it gets 5 years to obliterate the AVM so if anything was still left from it I would still have to wait another three years wouldn’t I?
Wishing you best of luck with your DSA,and let us know about your results !
