I had an emergency crainiotomy performed on me at NE GA Medical Center in Gainesville, GA on Aug. 31, 2009. Apparently (in hindsight now), my AVM had bleed several times within a few months prior to it bursting. During those bleeding episodes I would have the WORST headache of my life (the only adequate comparison to that pain was to merely say that my brain felt like it was going to seep out no matter what position I moved my head in - EVERY movement would hurt my head... I was in tears) and my neck muscle would tighten up and would be so stiff (heat and a home massage machine would not allievate it). I would go to sleep with a terrible headache and wake up with it still there. NOTHING over-the-counter would relieve my 'headache'. My AVM finally burst on Aug. 26, 2009 while I was at a Chiropractor's appointment. The Chiro. called my mother (not an ambulance) to come pick me up and told her to either take me to the ER or take me home but that she (the chiro.) reccomended that my mother get me 800 mg. of Tylenol (which can only be gotten by a physican). (The hospital was only minutes - less than 5 mins. from the Chiro.'s office.) My mother waited on my niece (whom was in the area on her way to college that evening) to arrive and they drove me to the ER at the hospital. When I arrived at the hospital ER, I had hydrocephalus (brain swelling), in which the neurosurgeon drilled a hole in my skull immediately that night to 'drain' the excess spinal fluid that had built up and caused the swelling. I ended up spending 35 days in the hospital... grrrrr. After my release from the hospital in Oct. 2009, I had outpatient therapy... none of which involved vision therapy. (No one was listening to me - the patient.) My vision was affected by either the AVM hemorrhage or the hydrocephalus... either way, I have PTVD (Post Traumatic Vision Disorder), which GREATLY impedes my recovery and my efforts to rebound (even if I have to 'compensate' on some things). Although I am normally an intelligent, resourceful person, having a brain injury (and PTVD) on top of that GREATLY hinders my ability to find and 'view' information. (Reading + my slow computer tires me out quicker than it use to and the people at places that are formed to help are NOT informative nor helpful.)
Just wanted to see if anyone knew of ANY information on people or places that ACTUALLY help during these times. Having knowledge and being pointed in the right direction would be a great help to me and GREATLY appreciated by me.
Thank you, William! PLEASE do NOT feel helpless at all! I had NO knowledge about AVMs (the condition, the needs associated with it, the recovery, nor any place that offers any help to people with AVMs - versus places concerning the topics of cancer / proverty / diabetes/ etc., etc.) until several months after I got released from the hospital. For me, having ‘knowledge’ is good; therefore, it was driving me nuts when I didn’t know what exactly was meant by some medical terminology nor the ‘name’ given to what I was experiencing. I have found that some of the most profound & actually helpful pieces of information has come NOT from therapists nor other ‘professionals’ who one would think would be able to tell one. For example, in relearning to walk I was told to ‘trust’ my left leg (my ‘affected’ side); however, the therapists I had for rehab. and 2 neurologists could not tell me HOW to accomplish ‘trusting’ my left leg, rather it was my ENT doctor that told me how. (I have yet to relearn how to walk and do ‘other things’ simultaneously, such as walking & talking, etc.)
Cindy= I got you request and just read your story> Very frustrating. This is what I know: I do not or know of anyone with PTVD. However, it’s only been a year since you had your event so give yourself a break! Fatigue, compensation, loss of independence and reluctantly asking for help are unfortunately very common and it takes years to recover and you’ll never be what you were. But this journey has taught me so much. It may sound trite but it’s true!
Thank you, Donna! I’ve been checking out treadmills in hopes that it will help me with walking and my endurance, etc. I’ve found 2 Vision Therapy doctors in the area (not close but doable) that I pray to God will be able to help make my vision ‘manageable’ / ‘functional’ until it returns (God willing, in which I plead & beg in prayers that it does).
YEARS? = oh please no!