A.V.M. Time Bomb

Note: This story starts in the last post, "My Condition" An Arterial Venous Malformation (A.V.M.) is explained there.

Since I learned how not to pass out when I was still pretty young, I grew up trying to hide the problem. If I was playing with a group, I would just step back and watch while "the feeling" retreated. Actually it was easier back then. Now, I know why. At the time I didn't understand any of it. When we are young, our blood vessels are elastic. As we age, we gradually lose more and more of that elasticity. So, stopping when I felt that hurting pressure was enough to give the blood in my head more of a chance to drain. I was able to get through the teen years without a lot of unwanted attention.

In my 20's, when we finally had Mom's diagnosis, I was experiencing worse pain in my head. Adulthood, responsibilities and caring for a baby (and stress) were causing more problems. Talking to Mom about her M.S. symptoms had us both wondering. The Doctors kept telling Mom that M.S. isn't hereditary. The problem was, neither one of us had any reason to trust Doctors by then. Still, I didn't really think it was M.S. After all, I could make the dizzyness and the worst of the pain go away by resting. Which also made me doubt that it was real. I had long since accepted that it had something to do with my mind and lazyness. After all the word lazy had been prominent throughout my childhood. Or, maybe my mind was just sharing sympathy pains with Mom.

When I was 26, I had my second son with my second husband. Just about a month before T was born, I woke up one morning to find myself blind in one eye and almost no vision in the other. My hubby phoned his Mother and went off to work. She came right over and as soon as she thought the Eye Doctor might be in his office, she was on the phone to him. He had us come in immediately. I really liked this Doctor and had been seeing him for several years. He had me wearing contact lenses. Back then, the hard kind. After he examined me and asked his questions, he phoned and Eye Surgery Specialist. Twenty five miles away in another town. And my Mother-In-Law took me right down there. To make a long story short, our eyes have a substance called vitreous, a gel like substance that fills the back of our eyes. It helps hold the round shape. I have no vitreous, just some scar tissue. The hormonal changes, and water retention of pregnancy had caused the scar tissue to pull at the retinae. Not enough to tear, just to pull it out of shape. A gazillion questions, but mainly.... How had I gotten through the first pregnancy? Would my vision return? There were no answers....again. The eye surgeon saw me several times a week till I delivered T, just to stay on top of things. There wasn't anything he could do. My vision returned on it's own within a couple of days, and nothing worse happened. But, the Doctor did insist my Husband come in . He told him what to do if it happened again, or if there were signs of a tear in the retinae. He warned my Husband never to slap me or give any blow to my head. That wasn't a concern, W was never violent. But, the idea that a blow to my head could blind me, was a concern. How had I gotten past all the exploits of childhood and horse back riding with it's falls? I only had one conclusion. God had given me the A.V.M. for some reason, but he was also taking care of me.

This new discovery gave Mom and I a lot to talk about. It wasn't any part of M.S., but what did it mean. If there was a birth defect in my eyes, did it have something to do with the rest. Again, the Doctors didn't know! That was in 1971. It would be another 7 years before I'd find out........the hard way.

My husband, W and I had built our own home when we married in 1968, with the help of family. (That is another story) This house was out in the country. But, within a few years it was surrounded on all sides by neighbors and new construction. We had been dreaming of a log home in a woods. Late in 1976 we found 38 acres to build on. We were able to clear a lot of woods that fall; lay out our driveway and decide where we wanted the house. We had visited New Hampshire and ordered our logs. Hand peeled and cut top and bottom to six inches, with the sides left whole. All summer of 1977, we worked on the log home. Mostly alone. His parents were gone and mine were older and sick. Friends stopped by when they could, but we did most of the work. And, I was in trouble. The higher the wall got, the harder it was for me to lift them. Some of those logs weighed up to 300 lbs. Winter forced us to stop, before we had gotten as far as we expected. We started again early in the spring of 1978. I was 33 years old and had lost my brother J in January. Our log walls were now higher than my head, and every log I lifted gave me "the feeling." The pain was constant and I seemed to be dizzy most of the time. Stopping didn't help anymore. I blamed it on the grief of J's death and stress. There was still so much to do on the log home and we'd spent so much time already. The bank was pressing us to finish. So, I was pushing myself past any point I ever had before.

This is going to get confusing. I wanted to keep the stories of the log home and J's death and my marriages for their own posts. But, they are much to intertwined at this point to seperate. So, I will stick to the A.V.I. as much as I can, and you can know that I will eventually fill in details on the other stories later.

The day I lost consciousness, (lifting logs) W put me and T (son J was at his Fathers) in the car and took me the one hour drive to my parents house. So, I ended up in a Marion hospital instead of in our own town. Mom kept T and after W admitted me, he went back home. He didn't even call her to say I'd been admitted. She had to call the hospital.

I was still unconscious when I was admitted. Pretty much, most of that time is fuzzy to me. I have a few vivid memories, a few hazy ones and the rest was filled in later. They started with a C.A.T. scan. Surgery was in the works. But, by the time the last scan was done, just before surgery, the could tell there was no further bleeding. They believed the vein that had burst was tiny. It didn't have enough pressure to keep bleeding once it's surrounding area was full of blood. That saved my life. If the vein had been larger, I would probably have been dead before W got me to Marion. Or, if not dead, I'd have been one of the "vegetables" They kept me in the hospital after I regained consciousness to try to determine how extensive the A.V.M. was. They needed to know if it, or any part of it, could be removed. It took several more days to determine what they were going to do with me. They planned their tests. It was one of those tests that is my most vivid memory.

A new Doctor I hadn't seen before came into my room with a release paper for me to sign. He explained they were going to have to do exploritory surgery, or I could agree to a text that might save me from brain surgery. OK, easy choice there. Till I read the release papers. It stated that if my vocal cords were paralized during the test, I wouldn't sue the hospital or the Doctor. Paralized? Never speak again? That, or brain surgery? I broke down. I needed Mom. But, Mom was sick and stuck at home with my T. I phoned her. I signed the paper. I tore the paper up. I phoned Mom again. But, she didn't answer the phone. She was walking through my hospital room door. One neighbor had T and another brought Mom to me. We cried together, then Mom went after the Doctor. She had questions to ask.

In the end, I had the test and I could still speak, but there is more to tell about that test. They took me down to a room with an odd looking table with straps and a motor on one end. Once strapped down to the table, (talk about scary!!!) they flipped a switch on the motor. But, nothing happened. No one told me anything or would answer my questions. They discussed their problem as if I wasn't there and scurried around. I didn't feel like a 33 year old woman, I felt like a terrified kid. Eventually, a maintenence man came into the room with a huge drill. He gave me a wink. The very first human contact I had felt in that room. I couldn't see just what he was doing, it was above my head, and with the strap across my forehead, I couldn't move. But, the maintenance man explained the motor didn't work and he was going to use the drill to do the motors job. Suddenly I heard that drill just behind and below my right ear. It was a painful noise that close to my head and it vibrated the whole table I was strapped to. Then I realized my feet were going up and my head was going down. The table was tipping so that I was essentially standing on my head. At least now the straps made sense. Once the table and I were in position, the Doctor spoke from behind me. He seemed to be sitting on a stool. He told me they were going to put a small tube into a vein in my throat and thread it up (no down now) into my head. I would have to be conscious so I could speak and answer questions as he worked. That would let him know if he was doing damage to my vocal cords. It was awful. Torture. He tried to get into the vein 2 or 3 times on one side of my throat and when he couldn't, he tried the other side. It was like a nurse who has trouble trying to start an I.V. Except, I was upside down and he was sticking a needle into my throat. I've had Doctors tell me after surgery that I have a high pain tolerance, but that was the worst. I was warned not to cry or they would have to stop and try again the next day. Once he finally had his tube inserted where he wanted it, (I was visable on some sort of scan or x-ray) they added a dye or whatever. It felt VERY warm. Not quite pain, but with the rest, I couldn't tell the difference by then. Besides, being on my head that long, with the blood settling there, I had a horrid head ache anyway. They took some x-ray pictures then, I could hear that whirring clunk clunk sound I associate with x-rays. Removing the tube wasn't quite as bad as putting it in, but it still hurt. Then the test was over and I could go back to my room.

Mom was waiting for me when I got back. I felt like I'd been tortured for hours. Before I could describe to Mom what they'd done, my throat started to swell on both sides and pretty soon I couldn't talk. Which totally freaked me out. Several nurses had stayed close and they assured me it was just swelling and my vocal cords were fine. They were there to make sure the swelling didn't effect my breathing. I couldn't talk or eat or drink for over 48 hours. The ice chips were all I could have and I had one in my mouth most of the time. It was the only thing that eased my burning throat.

The next day, before I could talk yet, Mom and Dad were both with me when another Doctor I hadn't seen before came in with a couple of the x-rays. What I saw was terrifying and I was glad my folks were with me. Mom knew what questions to ask and just what the Doctor was telling us. I saw a skull and right in the center was a fist sized mess that looked like the roots of a plant that is so pot bound you can't shake the dirt off. Blood vessels in all sizes wrapped in, under, over and around each other so tightly I couldn't imagine any brain wrapped in that mess. And, you couldn't tell where it started and where it ended. And that was exactly the problem. They couldn't remove it because it was too deep in my head and it had no beginning and no end. That was when they told the three of us that I probably wouldn't live. We had just lost J a few months before. It didn't seem real to me, and I couldn't even talk anyway. But, it was very real to my parents. I think it just took longer for it to sink in to me. I was on some pretty strong meds to keep me calm after that test the day before.

I was worried about my parents. Especially Mom. She had been through so much. I don't know how she survived this added burden. Except that she turned to anger to get through. Once the Doctors had their answers, they couldn't seem to get rid of me fast enough. As soon as the swelling in my throat was down and I could talk and eat again, they dismissed me. That is when I learned that Mom had been trying to reach W. My husband hadn't been back to see me since he'd admitted me. Mom turned her anger on him and it helped keep her focus off her fear. They took me home with them when I was dismissed. W finally answered the phone at home and came up to get me and T. He took me home and we never talked about my A.V.M. You see, W avoided all things he didn't want to deal with. He did aplologise for not coming to the hospital. He explained that hospital smells made him sick.

That was 28 years ago now. I'm not dead and I'm still doing quite well with the time bomb in my head. Because, I know how to be lazy and when to be lazy.