Following my angiogram two days ago my neurosurgeon visited my recovery room to tell me the news. My AVM was gone. Almost 5 years following the radiation treatment the AVM had been obliterated. All of the things I had adjusted in my life to live with the AVM, could now be reversed. I could lift my grandkids, carry my own luggage or anything else that had to be moved. I can run again and even ski. I didn’t have to worry about having a seizure while walking or driving. There are many other changes I have made, but most importantly, my life will get back to normal.
If anyone is looking for a neurosurgeon, I wholeheartedly recommend talking to Dr. Pandy, the head of neurosurgery at the University of Michigan hospital in Ann Arbor. Even when I was growing more frustrated, he kept reassuring me that we were on course. I promised him that I would be one of his success stories when we started this journey and he helped me keep this promise.
I’d like to also give a shout out to Dick and the AVM survivor’s network. Someone recommended this site 8 years ago when my AVM was first discovered. This has been a godsend for me to better understand this malformation and how it affects us all.
At 72 years of age, I’m older than most of you, but every AVM story is as different as there are AVM survivors. I wish you all the best and look forward to continuing forward as a success story to share with those looking for information.
Great news! Celebrate this victory and go live life to the fullest. We are all forever changed through our AVM journey’s but have all been given more time.
It was 3 mm, front right lobe. They decided to just monitor it at first, because I probably had it for 64 years and nothing had happened before. Then after two more seizures and a bleed over the next two years, they decided radiation treatment was the best option.
Sorry, I did not experience edema as far as I know. There was no shrinkage in the first 6 months, then it had been reduced by 1/3 after the first year. Shrinkage after that slowed down but was consistently showing some improvement. The last reduction at the end was a surprise, but I had gone 1.5 years between the last MRI. The angiogram test gave him the final analysis.
