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My Son's AVM

My name is Debbie Wiggins. My son, Andy, suffered a cerebral hemorrhage at the age of nine from an AVM. He was normal, healthy and happy until the morning of May 7, 1993 when he was suddenly stricken with a severe headache and vomiting. He was in class at school when it occurred. The teacher sent him to the office where they called his father to come get him. We only live a block from the school so it didn't take him long to get there. Andy was very pale, but able to walk with a little help from his dad. Nick, his father, brought him home and put him to bed thinking it was probably a stomach virus. He went out of the room to get a garbage can in case he needed to vomit again and when he returned he found Andy seizing. He picked him up and carried him to the local hospital where he remained unconscious.

The doctor who saw him immediately called the helicopter to take him to the hospital in Tupelo, Ms. We live in a small town in Alabama just across the Mississippi state line and the hospital was approximately 45 minutes away.

I first saw Andy in our emergency room just before the helicopter arrived. This made absolutely no sense to me. My son was fine that morning. What is happening here? I called the school to see if he had fallen and hit his head but he had not. What is going on here? This is not happening!

Andy was flown to Tupelo where they did a scan and found the bleed. They were not equipped to handle him there so they flew him on to Memphis, Tn. to LeBonheur Children's Hospital. That was about another hour and a half drive from Tupelo for us so when we arrived the neurosurgeons who were with him said the first thing they needed to do was completely induce a coma and perform a ventriculostomy to drain fluid and reduce the pressure on his brain. One of them assured us they would do all they could to save him. The other doctor told us if he bled again he would die.

After the procedures were done he was taken to ICU. That night the doctors came out and told us he had bled again but there was one more thing they were going to try. For the life of me I can't remember what that was now, but it helped. We were numb, still not believing this was happening.

There was a blood clot the size of a lemon in the middle of his brain but they couldn't do anything about the clot because they were afraid there would be another bleed. We rode that roller coaster for 2 weeks. They tried embolization. The first time the AVM disappeared when they got to it. The doctor was in shock. He said had he not been watching it on the screen he would not have believed it himself. At that time he was one of the very few doctors in the country doing this procedure. People were flown to him from all over the world for this treatment. He said he had not seen anything like it and the only other one that even compared to this was a woman from Holland who, by the time she got here, her's had disappeared.

In fact his had not disappeared. He bled again a couple of days later. embolization was tried again. This time the vein was too small so they had to go in the artery side. This didn't stop the flow of blood through the vessel, but the platinum coil that had been placed in the artery let them know exactly where they had to go when they went in to remove the AVM. The surgery was performed the next day and was successful. We now had to wait to see what happened next.

It was a nightmare. He developed meningitis and ventriculitis. I remember the doctors telling us if the infection got into his brain it would burn his brain up!

Andy was in ICU for 6 weeks. They began trying to take him off the respirator but were unsuccessful so they had to do a tracheotomy. It succeeded in getting him off the respirator and into a private room.

Andy's left extremities were paralyzed and the right were extremely weak. Therapy began working with him to help him gain enough strength to sit up in a chair. Then they took him down for therapy. This went on for another 5 weeks. He did improve some but was not able to walk or use his left arm and hand at all.

Before we came home they removed the trach. It was then we realized how bad his short term memory was. They told us it might get better or it might not. They released him to go home and he was to continue therapy as an outpatient at a hospital 50 miles away from us. We had to go 3 times a week for several months which became very hard on us. But just before Christmas that year he began taking a few steps. This whole time Andy had been incontinent.

In the spring he had to have a shunt replacement due to the fluid building up in the ventricles. One month to the day after his shunt placement Andy got out of bed and went to the bathroom on his own just like normal! That was music to our ears. We were so proud to know the shunt had been a success. We were seeing improvements in him so we were ready to get him back in school in the fall and concentrate on academics. He walked with a limp and could not use his left arm or hand but we knew his mind would improve with an appropriate education.

I won't even get into all the trouble we had with the school. They had never had a child like him, one who use to be normal and remembered being normal, but now suffered from severe short term memory loss. They didn't know how to teach him or what to do with him. It was a constant battle. But Andy graduated this past May with an Alabama Occupational Diploma. At graduation the Mayor presented him with a plaque for courage and perseverance and said Andy overcame many obstacles that most people would never have to face in their lives. When Andy went up to receive the award he also received a standing ovation. It was wonderful. Andy had always felt that no one cared or paid attention to him, but that night he saw the whole town had been watching his accomplishments.

I was so glad to find this AVM support site tonight. I have read some of the stories and know that we are one of the lucky ones. But for 10 years now we have felt so alone in this. There was no one in our area who had suffered similarly. We went through a grieving process but had no idea what was happening to us. I remember people telling me I should just be thankful I had him. WELL... Excuse me, but you were the one who asked how he was and when I tell you, you tell me I should just be grateful to have him? HOW DARE YOU SUGGEST THAT I AM NOT! I learned very quickly what to say and especially what not to say.

Now that Andy is out of school we have no idea which way to turn. If he could go to college I would have to take him. He is incapable of living alone or in a dorm setting. He cannot drive and I hate to admit this, but I don't know what to do now. We have a daughter who is a senior this year so I am hoping that after her graduation Andy and I will have more options. Our area is limited as far as employment for him. He is very bright and can do anything as long as he has a list. I want more for him and he wants more for himself, but this transition is going to be much harder than I had thought.