6 years ago I was diagnosed with Cavernous Malformation /CCM2. 6 years ago today, Dr. Gary Steinberg, nurse Joli, and others at Stanford successfully performed a C5-6 laminectomy even though I suffered from my one and only seizure just as they were about to operate. Post-recovery was hard with level 10 pain, having my one and only panic attack to date, being wheelchair-bound for a while, eating a yucky thickened diet, and having PT/OT. Today, I still have cervical and brain CCMs but they are stable. I can walk, I realized my childhood dream of becoming a lawyer, I checked Japan off my bucket list and I have made great memories with myself, my family, and my friends. Life is good.
My angiomas seem to have gotten worse recently. I'm 66 years old and suffer from numerous ailments like colitis, slipped discs, severe arthritis in my back you name it I got it. Recently the headaches have gotten worse, the left side of my head and sinuses ear and sight have declined and I basically blacked out a couple of times and face planted. Trying to get doctors to address these issues seems to be near impossible these days. Three or four years ago when they found these and suspected bleeding and stroke I was told it wasn't big enough out of five angiomas to operate. I'm facing back surgery yet again and I'm wondering if I'm going to end up needing brain surgery because things are getting difficult.
6 years ago I was diagnosed with Cavernous Malformation /CCM2. 6 years ago today, Dr. Gary Steinberg, nurse Joli, and others at Stanford successfully performed a C5-6 laminectomy even though I suffered from my one and only seizure just as they were about to operate. Post-recovery was hard with level 10 pain, having my one and only panic attack to date, being wheelchair-bound for a while, eating a yucky thickened diet, and having PT/OT. Today, I still have cervical and brain CCMs but they are stable. I can walk, I realized my childhood dream of becoming a lawyer, I checked Japan off my bucket list and I have made great memories with myself, my family, and my friends. Life is good.
Thanks for such great info and stories
My angiomas seem to have gotten worse recently. I'm 66 years old and suffer from numerous ailments like colitis, slipped discs, severe arthritis in my back you name it I got it. Recently the headaches have gotten worse, the left side of my head and sinuses ear and sight have declined and I basically blacked out a couple of times and face planted. Trying to get doctors to address these issues seems to be near impossible these days. Three or four years ago when they found these and suspected bleeding and stroke I was told it wasn't big enough out of five angiomas to operate. I'm facing back surgery yet again and I'm wondering if I'm going to end up needing brain surgery because things are getting difficult.