I’m happy to be here and find a support community. (My youngest son is a cancer survivor and I benefited from a similar community for his treatment as well).
I’m 51 years old and was diagnosed with an AVM in May of 2017. (I am retyping some of this from my clinical reports from the Mayo clinic, as some of the details, particularly from early on, are difficult for me to recall from memory).
I suffered an intracranial hemorrhage while exercising. I initially wasn’t sure what had happened, but was very disoriented and had lost vision in my right hemisphere, couldn’t remember basic things, had a sharp headache, literally ran into the wall several times. I actually drove myself home from the gym and to an appointment before finally going to the Emergency Room where they diagnosed the bleed via a CT scan. I had an angiogram the following week and was diagnosed with an avm (left posterior cerebral artery, reading from the clinical report). Mayo assessed the nidus at roughly 2 cm (Spetzler-Martin Grade II or III, for whatever that is worth).
I originally consulted with the University of Iowa Hospitals, who suggested embolization and radiation. I sought a second opinion at the Mayo Clinic, who suggested surgical resection. We also discussed gamma knife and I eventually opted for that route (largely due to fears about surgery, although it was a difficult decision and I was very concerned about another bleed).
I continued to have issues with memory and being able to function mentally (I grew tired very quickly and was not able to focus or really work for several weeks), but those symptoms largely faded within 4-6 weeks. My vision, however, took quite some time to return and, while vision field tests have shown me to now be back to ‘normal’, I still experience issues with vision and often run into things, etc. (to the amusement of my sons).
I had Gamma Knife (stereotactic radiosurgery) in November of 2017, which they assessed as very successful based upon the location and size of the nidus, etc. (The procedure went well, but the fitting of the frame and recovery from that was, well, interesting and a bit traumatic mentally, but not awful).
I have generally been symptom free during the time since, aside from the vision loss I noted above. I have, however, experienced 3-5 incidents where some of the visual loss returned and I experienced disorientation not unlike what happened during my bleed. In two cases, I went to the hospital and had CT scans to check for a bleed and both came back negative. I have not been given a reasonable explanation for these incidents, but I do know that at least part of what occurs is some form of a panic attack or anxiety tied to my fear of suffering another hemorrhage (since I now know the seriousness of my condition, unlike at the time of the initial bleed). I will be going back to Mayo this year for another update and hope to get a bit more clarity from them on these issues, which are very distressing (if not necessarily medically serious). When I was there last year, they did not have any specific guidance or explanation for the symptoms I described and, based upon an MRI, assessed the treatment to have been successful. I believe I will have another angiogram in 2020 to more fully assess the effectiveness of the radiation.
I feel very lucky, particularly knowing how serious this condition is and how much worse things could have been. I cannot, of course, know whether my treatment decision was the best course, but I can offer thoughts on how my path went.
I wish you all strength and courage in this journey. My son’s experience taught me a lot about the importance of taking small steps and focusing on doing the next right thing, trying not to worry about larger issues out of my control.