Today is my 5th Annie-versary!!! On 4/24/14, I suffered a ruptured aneurysm in the vertebral artery harboring the PICA (VA/PICA). It was a fusiform aneurysm (8mm x 10mm). On 4/25/14, I had successful surgery where the Neuro-Surgeon sacrificed the parent allowing a reflow to an alternate artery preserving the PICA. As I celebrate this milestone, I reflect on things that worked well for me in post surgery recovery.
Keeping a journal. Initially, I wanted to exercise my cognitive mind by keeping a journal. After hospital discharge, I noticed very unusual things to my hearing, vision, touch and balance so I started to keep a daily log. This journal was helpful in multiple levels. As we navigate across the medical landscape, the journal helped me describe concisely my issues to my physicians. (We only have that 5 minute window to explain our issues) My neurologist explained that after major brain trauma, often a patient will experience issues that pass over time. And he was correct. Many of my unusual perception issues have gone away. Unfortunately, I still suffer from a a vestibular-ocular disorder where the double vision is corrected by prism glasses and the nystagmus treated by daily Gapapentin. I also recorded environments which will trigger my vertigo.
Tackling one issue at a time. Like many on this board, survivors suffer from multiple issues. It is daunting to try to address all the issues at the same time which involves some sort of therapy. In my case, I had vertigo, double vision, hearing loss, reading issues (irregular ocular movements). Initially, I tried to tackle them at the same time but found that if I prioritized one issue at time, I had better results.
Navigating the medical community. The most difficult challenge for me is that my vestibular issue required me to navigate across multiple physicians. Each doctor will diagnosis and treat my issue based on their own discipline. However, they will not speak to each other. The worst are the new patient coordinators who often do not have a background in life sciences. They will send the entire medical records so often, the key information is missed. So, my strategy is understand each physicians’ diagnosis and treatment by some research on PubMeds and taking online Neuroscience coursework. In this way, I can convey just relevant medical results to the specialist. By the time that I had consultation with the 11th physician, the correct diagnosis and treatment was assessed for my vertigo.
Connecting to other survivors. The most difficult thing for Annie survivors is that you may look completely normal in the outside but suffer in the inside. This board is helpful as we can hear similar stories and you are not alone. The hard thing is the Annie rupture events are rare (34K per year, 17K survivors). It is also hard to find PICA annie survivors as it is rare event (2-5%). So, I connected with other stroke survivors who had hemorrhagic strokes with similar disorders which was helpful. If your area has an Aneurysm support group, you can meet fellow survivors and share your stories. You are not alone. I am fortunate as I met many survivors who are now my friends.
Enjoying life. It sucks having a ruptured aneurysm and SAH But, I count my blessing every day that I survived. Rehabilitation is a marathon. Every defeat of a disability is a victory. Having new experiences and learning something new keeps me young.