Story about Cavernous Malformation .

Brain Stem Cav

May 19, 2017


In June 2013 I was just coming off the high of seeing my 2nd son graduate high school.  Life was taking its normal coarse at 40 when I fell hard during a volleyball game with the youth group at church. I landed on my shoulder and   over the next weeks many changes started unfolding in my body.  At first I thought mostly it was related to my fall.  My left arm became weaker and weaker day by day.  Then I noticed my foot was beginning to drag.  I sing on the worship team and noticed I was loosing my range.  At this point I became afraid that this was more than a bad fall.  I went to my Dr.who after tests showing nothing, sent me to a neurologist.  He ordered an immediate MRI.  There was no question, I had a bleed on my brain stem and was experiencing a stroke.  I was taken by ambulance to Las Vegas where I met many more neurologists who seemed stumped that I was still by all accounts upright.  The head neurosurgeon was able to immediately identify the problem.  I had a large cavernous malformation on my brain stem that began leaking blood. He referred me to Dr Robert Spetzler in Phoenix As.  After a consultation it was removed in September.  I went into surgery with some deficits still hanging on.  I came out of surgery with dizziness, sensitivity to light, deaf in the ear closest to my cav, my gate was off, sever fatigue,the right  my right side of my face is numb. The cav was sitting on my nerve so I have motor but not sensitivity.  Most of my deficits were lessened with physical therapy.  I still have a limp on the left side and weakness but with excersice it's hardly noticeable.  My hearing returned about 2 weeks after surgery.  Weather seems to cause fatigue and some gate problems.  My reflexes are slowed down.  For example, if I were to fall I can't catch myself well.  It does not effect my driving.    I've had 3 post MRIs and no new growth.  It's unknown if I inherited this or if it was caused by injury.  I did have a neck and head injury when I was in high school.  

 

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