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Hello, my name is Pat H. , I am an AVM recovery patient. I have been treated for migraines since 1989. Once a month I was treated for migraines. The doctors tried every current medicine on the market like Stadol, Imetrix, Zomig, Nuban, Lortab, Demerol, etc. You name it: I tried it. (I hate to take medicines!)
I was working for 45 doctors at the time this was going on. Family Practice gave me a shot and sent me home. Internal Medicine gave me a shot and sent me home. This went on and on for approximately 10 yrs. I had severe headaches, blurred vision, double vision, flashing lights, zig zag lines, dizzy, vertigo, room spinning, movement behind the eyeballs, sometimes felt warm liquid flowing in the back of my head on the right side. For years the diagnosis has been migraines, inner ear infection, hypertension, vertigo,anything but what it really was.
The pain in my head was so bad that sometimes I thought my head would explode. I would sleep with a jelly icepack on the back of my head. The headaches gradually increased from once a month to twice a month to twice a week. I finally went to my PCP or Family Practice Dr. and friend and demanded a MRI. Eureka!! The MRI confirmed what I already knew. There was something abnormal on the right side of my brain. Even further, the angiogram re- vealed an AVM.
The PCP had to refer me to a Neurologist who referred me to a neurosurgeon. Surgery was scheduled for 9/26/99. Dr. Yves Meyers for those of you who need a good neuro-surgeon. The doctor successfully removed the AVM on the right side of my brain. The back of my head looked like a horseshoe with 22 staples. I was released after 4 days and put on 8 different medicines, several of which gave me chest pains. I had to go to the ER a couple of times. I needed therapy but did not do it. I do recommend it so that the patient has a better understanding of what is going on.
Family and friends had to bathe me,feed me, and dress me. I was out of my head for weeks. I was having seizures and didn't know it. Often there were moments of confusion or no sense of direction. The road back has not been easy. I am grateful and truly blessed. I have lost partial vision in my right eye, some memory loss - short term and otherwise. Sometimes I have slurred speech that mostly occurs when I'm tired. My blood pressure has been running high since the surgery (180/100). I am on blood pressure medicine now. I went back to work 3 months post-op.
The migraines left me for about 3 months. They are now back in full force. My husband takes me to get a shot once a month. Sometimes I'm scared. I think there is another AVM. I am smarter now and know what to look for. It is my goal to educate each Dr. I come in contact with. I disagree with doctors who say AVM'S don't cause migraines. I disagree with doctors who repeatedly ignore the signs like frequent migraines, dizzy spells, etc. I disagree with doctors who treat us like a drug case. I don't agree that all AVM patients are born with this. I do believe God left me here for a reason. Maybe to help some of you.
When you know something is wrong , don't rest til you find out what it is. Some of you need 2nd ,3rd,and 4th opinions!!! In closing, be aware AVM'S are often mis-diagnosed. Sometimes they are a death sentence. Sometimes we have options like medication, radiation, or surgery.
Thanks for listening. Good Luck and God Bless each of you.