[Molly]

Hello my spinal AVM friends and others. I was diagnosed with spinal AVMs April 2001 at the C-3, T12, and L3. The L3 was the one bleeding and seeping. After more than 25 years of going to doctors, having a stroke in 97 and 99, even though my legs were weak, numbness, burning, sensitive to hot and cold, inability to urinate and eventual loss of B&B, the doctors conceded that yes, i had a mild stroke in 97, ministroke in 99, they never gave me any real answers as to my leg pain, my urine problems, my extreme spinal pain and many associated problems that go along with spinal avms, they blamed everything on the strokes even though i had no high blood pressure, no symptoms or reason for having the stroke. I had per se, full recovery, yet i remain, numbness, weakness, to the leg, and all parts of the body below the waist. Neck and spinal pain were constant and extreme.
The point that i want to make to you at this point is before i had the stroke, after i had the stroke, it is one very important thing. I constantly had jerks in my spine, in my legs, arms, neck, head to toe, the worst being around the lower back region and legs.
I want you to understand that i had several MRIs and CTscans before they said i had a stroke. They again did mri and ct scans in 99. !GET THE POINT! MRI AND CT SCANS WILL NOT ALWAYS SHOW OR PROVE TO DOCTORS THAT THERE IS A SPINAL AVM! MY "spinal AVM" was found by doing a spinal tap and then an mylogram. I had been in the hospital 11 days paralyzed from the waist down, zero feeling. This was because of a leaking of blood from the L3. It was at this point, that they went back to the MRIs and CT scans in the days past as far as 1997 where they admitted they could actually see, only after they looked at the milogram, they could see traces and areas of the AVMs. From that day forth, i have remained a paraplegic with full loss of all ability from the waist down.
This is the point that i want to make: after they told me that i had 3 AVMS, while i was in the hospital on medication, baclifen and neurotin for the jerking of legs, arms, spine. When they gave me the drugs, i was allergic, so they didnt try anything else. I was in the hospital for several weeks then they released me to a rehab hospital. It wasnt quite a year and a half later, when i would go and see my neurologist that i was having severe jerking, full body, nearly throwing me from my wheelchair. This is what i want everyone to know, if you are having neuro jerking, make them give you medication. I wish that somebody had told me to do this, because one sunday morning, as my husband helped me transfer from the chair to the sofa, my body became rigid and jerking, which it continued to do. He called the ambulance, got me to the hospital within minutes, the doctor adminsistered 5 mgs of valium, and enemas and offered to put me in a room. I was screaming with the worst pain I had ever felt in my life. My husband took me to the neuro hospital 60 miles away, where i was left in an ER, finally put in a room, continued to be in excrutiating pain. Making a long story short, the hospital released me, my husband took me back within 8 hours mentioning that i had kidney stone problems before. In the course of an an exray, she caught the edge of the hip to find that my hips were crushed, my femor was crushed, they let me lay there 2 weeks in this condition as my body continued to jerk and break, something i wouldnt wish on the devil until he could get me transferred to another hospital where i underwent embolization. The point i want to make to all spinal AVM people, if you are having any kind of neurological jerking and even if you are taking medication, talk to a doctor ASAP, because any chance of walking sitting in my wheelchair or having a life is gone. I hope the same will never happen to you I am fully bedridden, and dependent on home care and others.
Dont forget no matter how bad it looks God will always be with us. If I can be of help, please email me (mot-daniel@hotmail.com) I will be glad to share anything that I can to help you. With much love in Christ to all.
Your friend,
Molly