Hello to all: This may be a little lengthy but it is from a relative's point of view. From what I've read, this condition doesn't make anyone's life easier...
On January 10th, 1996, Maggie feels something shoot through her head she had never felt before. During the next ten months, she spends over three months in hospitals, doesn't remember two of them or her own fifteen year old daughter! Less then a week after that first pain, Maggie was in Jewish Hospital in Louisville where the neurosurgeons found a peach-size "Arteriovenous Malformation" or AVM, buried in the lower left sphere of her brain against her brain stem.
Maggie was only 37 when that first pain hit her in January. We had bought our first home a few years before in Madison, Indiana and I would say we were a normal family. We would do a lot of camping and hiking in the summertime and due to her job, we got to visit a lot of the state parks. She had just bought her dream vehicle, a 1995 Jeep Wrangler rag top that she loved to cruise in. A few months before that, she found a job she really liked with DNR of Indiana, at the Department of Restoration office located on the Madison State Hospital grounds. It seemed like our lives were finally running smoothly. Maggie and I could go and do things without worrying so much about the kids: like hop in her Jeep and take an all day trip. We seemed to have that little extra cash to take those little trips now. The last six months were what I would call great!
Maggie had a guitar longer then we had been married. The poor thing had been over traveled, over used and over repaired through the years. But in 1995 it finally could not be repaired any more and the front face of it was pulled off by the tension of the strings. Steve and I had gone to Seymour and found her a nice new pearl inlaid Alvarez and had it hid under his bed for over a month. On Christmas Eve, he brought it out to her. She sarcastically said, "Hey, you really expect me to believe there is a guitar in this box?" Yes there was!
Her emotions took over as she sat there and cried while she started to play it. Like that old guitar, over the next six months, Maggie would be over traveled and over cried! Maggie had been in the National Honor Society and graduated in 1977 from Shenandoah High School but did not make it to college. She had been attending classes for Oakland City College and was taking the last math class she needed to get her BA degree when she became ill. To this day she still hasn't got it.
The symptoms for an AVM are slight, and are usually dismissed for something else. But as the years went on, it became more evident and pronounced. Maggie would have very intense headaches. We would be driving down the road and she would start rubbing her temples and pop a few aspirin or Tylenol that she always kept in her purse. Some other symptoms she had was a "twitching" of an eye, which she blamed on being tired, numbness and muscle cramps in her left arm, forgetfulness, and extreme fatigue. The minute Maggie would slow down she would be asleep. The closer she got to 1995, it seemed harder for her to remember stuff. One time she even left Stephanie at a ball practice. Another incident that happened around 1993. Maggie thought she had Bells-Palsy, when her left side of her face was numb and her ear was in pain. On a visit to Wright Patterson Hospital, the doctor looked at her for less the five minutes and said she had an ear infection....but hindsight being 20/20, there is no doubt in my mind it was the AVM causing her the trouble!!
At Jewish Hospital in Louisville,Kentucky, they ran all kinds of tests on Maggie. She had a Cat Scan, an angiogram-gram, and an MRI. After three days of tests, they finally told us about the AVM and what it was. They said due to the complexity of the size and location of the AVM, which was deep in the lower left sphere of her brain, against her brain stem, there was nothing they could do for her there. Louisville did not have the resources to perform this kind of surgery.
From there we were sent to Dr. John Tew at the University of Cincinnati. Dr. Tew is a leading surgeon in vascular problems of the brain. He showed us the scans and it was shocking to see the size of the malformation in Maggie's head. Even our untrained eye could see the mass in the x-rays. After three visits and two other consultations with other neurosurgeons, July 16 was set as her check-in date for the embolization and surgery to follow two days later.
We got to Same-Day Surgery at 6:30 in the morning and Dr. Tomsick preformed the embolization. For seven hours Maggie laid on a stainless steel sheet in a semi-conscious state while he put blockages in the arteries that feed the AVM. When he was done, Dr. Tomsick said he had decide that she needed another embolization before surgery and it would be done on the following Monday. So Maggie was released on Friday evening. But on Sunday, when she woke-up, Maggie was not feeling well. I was afraid one of the blockages had come lose and lodged in her lungs, so we went back to the Neurosurgery Intensive Care Unit (NSICU).
After a day of what had to be pure hell for Maggie, it was found she had an E. coli infection of the kidneys that had gone septic. She was admitted back into the hospital and spent the next week receiving anti-biotic before everything was put on hold for six weeks. During the wait, we noticed Maggie was having trouble using her left side. It was determined she had some brain damage from the embolization.
Maggie would end up having three more embolization, with the second one on September 9th. On the third embolization Dr. Tomsick had to clip a large aneurysm on one of the large arteries feeding the AVM. The last embolization was preformed on October 1st and Maggie had surgery on the 3rd.
Dr. Tew did thirteen hours of brain surgery on Maggie, starting at 7:30 am. At 5:30PM he meet me in a room and told me there was a problem. Maggie had a hemorrhage and he was having trouble finding the artery that was bleeding. After two more hours of surgery, it was finally over. At 2:00 AM, Maggie was brought back to NSICU and a CFS drain was put in the top of her head. She was on a respirator for over a week to help her breath.
The nurses in the unit let me stay back in her room a lot more than they should have. But after being there for two months, we got to know them real well. They taught me how to care for her by moving her joints and working her arms and legs. The next three weeks seemed to last forever. On October 23, she was transferred to the Drake Rehabilitation Hospital.
Maggie was at Drake for a month where she received intense therapy. It was plain to see she had lost most of her short term memory. Again, it was a long month. But Maggie did improve with all the attention she received there. On November 24th we took Maggie home to stay. It had been almost two months since she had gone for the second embolization!
Dr. Tew had to remove half of Maggie's left cerebellum to get the AVM out. She knew there were going to be changes caused from the surgery, but no one knew to what extent they would be. The first effect was the brain damage caused by the first embolization. Maggie's reaction time on her left side is slower and she can't control her movements as well. When she over uses the left side, her arm or leg will start to shake uncontrollably. Another problem was the optic nerve on the right eye. When she looked at you, you could tell it was shifted upward more the the left eye. For over six months she wore a patch over one eye so she would not see the double vision. In April, Maggie had surgery to align her eyes back up. Even though it did not come out as good as she thought it would, she no longer has to wear a patch and uses her contact lens with magnifying reading glasses to read. She no longer has any depth perception and cannot drive.
Since the surgery, the left side of her face feels numb like when a dentist gives you a shot of novocaine. She always asks me, "How swollen is my face?". The doctors can take a pin and stick her on the left side and she doesn't feel the stick at all.
Maggie cannot cry at all!! She says she has all this emotion built up and nothing happens. I have seen her take a few hard falls but not a tear. It has been a year and a half almost and nothing yet. Maggie says it's for the best because she would be crying all the time if she could.
False pain. The doc's say it's like a heart attach, when your arm and neck hurt but there is nothing wrong with them. Maggie has bursitis in her right shoulder, but because of everything that has happened to her brain, it misinterprets the signals. The whole right side of her body is in constant pain, like an ache that won't go away. All the pain specialists cannot make it stop.
Maggie has almost no short-term memory. That was the part of the brain Dr. Tew had to remove. She writes down anything she may need for later. She has writing pads all over the house with her little notes on them for the family.
All these problems have gotten better since the surgery. Maggie is now handicapped and uses a cane and an arm from someone to get around. At home, she uses the walls for a brace and scoots along them for support. But she is happy to be out of the wheelchair she was in for almost a year. Last October, a year after surgery, we took our first hike through Charleston State Park. It was on an "easy" one mile trail and it took us over two hours to complete it. It was a major accomplishment for her. (I had a sore arm afterward but it was worth it!)
Maggie hopes to return to work someday, but feels she needs to get rid of the pain in the right side first. Plus, she needs to build her endurance level up more. She tires very easily. Everyday tasks that you and I take for granted, totally exhaust her. Maggie has to use all her energy just to do simple tasks now and usually has to rest if she has something planned for later in the day.
To this day, Maggie cannot remember anything from October 2, at 11:30 pm. The next two to three months are gone from her memory, which is probably for the best. It is a time I don't think she would want to remember. For almost three months, she could not recognize her own fifteen year old daughter. It seemed like anything before 1981 was there and intact. But after 1981, it was hit and miss. We went back to Drake Hospital six months later for a visit. Maggie did not know the place or anyone there who took care of her.
A year and a half later, they still know us at U of C. Room #1 in the NSICU is still called the Wallen Suite. You know you've been at a hospital too long when the nurses and doctors remember your name a year later!