Renae Marie
When I was 25, I had an arteriovascular malformation burst causing a stroke followed by immediate life saving brain surgery. When I came home from the hospital and was at the beginning on my recovery process I asked everyone how long it would take to regain function of my left arm and leg, the answer is always "a long time." Very frustrating! That to me seemed like months. I was however assured that as long as I persisted in OT and PT I would recover fully. During this initial period my best friend gave me a link to the different strokes web site. Seeing the trauma people had gone through and the long recovery times scared me too much to really read everything or post my story.
I did not accept or process how long things could take. I always set goals along the way and pushed myself hard, thinking any break through could happen at any time. The brain hemorrhage was 5 years ago today..on January 13 2004, it has taken me this long to process emotions and realize how much time and effort recovery takes and also to get the courage to post my story.
I 'm a vegetarian in perfect health. I hardly ever drink and NEVER smoked or did any drugs. I am in perfect physical condition. I have always worked out daily. I was training for my first marathon which was my 2004 New Year's resolution. I had gotten my Master's degree in School Counseling in 2001 and worked 3 years in my career. 3 months prior to the day of my stroke I had moved out of my parents' home into my own apartment. Just when I was establishing myself as a young adult and finding independence the AVM broke(they usually break young before age 20). Luckily I didn't go running after work as I always had. Some guardian angel turned me away from my truck and back into my apartment where I then decided to take laundry to my parents' house and eat dinner
During dinner at 5:30pm I felt a sharp stabbing pain on the right side of my head. I laid on the couch with my dog swatting at me not to go to sleep. I sat up and discovered my left arm had stopped working. I said clear as day to my mom, "I am having a stroke- but I'm too young and healthy." She said, it must be some panic attack." I'd always been a hypochondriac type of 'health nut'. She tried calling our family physician. Meanwhile I walked to my parents' truck to be driven there but my left leg gave out and I couldn't get in it. I made it to the porch where I slowly dropped down and lost consciousness. I was taken by ambulance to the hospital. Of course my parents were questioned if I was on drugs etc. Time wasted while they tried to figure out what was wrong! I laid for a couple hours vomiting and having CT scans. Finally the neurosurgeon arrived and said I was bleeding in my brain and needed surgery to save my life. It went from 10:30pm to 2:30am. The bleeding was stopped, the AVM was removed and the artery repaired. I was put in an induced coma for 11 days to speed healing.
Once out of the coma I began to sit and stand. I stayed in intensive care for 3 weeks. The bleed had been bad..in my ventricle and on my mid-cerebral artery. I received a wheelchair to get around the hospital. I started walking with a hemi-cane and progressed to a quad cane and then straight cane. I received 4 weeks of occupational and physical therapy for 4 weeks in the hospital rehabilitation unit. I was discharged to my parents home and began outpatient OT and PT 4 days later. I remained there almost 4 years... when insurance stopped paying and put me on a home program. I've also been going to EEG Biofeedback/neurofeedback 2 or 3 times a week for almost 3 years; this has been the most effective therapy. I've gotten off of precautionary anti-seizure medication. I walk completely unassisted and have also gotten rid of the left ankle brace I received in the hospital. I've lost left perriphral vision but am adjusting to getting around without it.
I have movement everywhere in my arm but only minimal functional use of my left arm so far. I'm waiting for that to drive! I'm waiting for left arm and ankle function to resume my career and getting very impatient. The hold up seems to be the tremendous amount of spasticity I had in my left arm and leg. It has been dramatically reduced but still affects ankle and arm/hand function. My ankle does not yet consistently heel strike when I walk nor does it yet rotate.
I'm determined to regain my full functions, drive, run, resume work, get married and have children. I get scared at how long this is taking and impatient to get back to my old self! I want to hear from any AVM survivors, people who've gone through spasticity and regained function and generally positive survivors. Has anyone else experienced long recovery times? I have a supportive boyfriend, family and friends but I need new inspiration from people who have been there.
Renae Marie NY, USA
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