Living with a time bomb in your head
By ANNE KARAPETSAS
In today's lifestyle in North America, we as parents of young children, often spend much of our lives racing about between work and home, between grocery stores, schools, baby sitters and extra curricular activities, trying to raise our children as best we can. We do so with the hope that they can grow up to be young responsible adults and have a good future of their own.
In the back of our minds, we worry about illness, but we live our lives knowing that severe illness in young children is a rare phenomenon that may happen, but probably will not. Besides the colds, sniffles, minor tummy aches and the occasional small accidents that children always seem to get into, we expect them to come out fine. Why should they not grow up healthy? Why should they not have all the opportunities that other children have?
Within a few hours one day in July of 2002 our lives changed forever. Our healthy, beautiful intelligent 15-year-old daughter had a time bomb explode in her head. The time bomb, it turned out, was an AVM (arteriovenous malformation) which she had been born with and we had no knowledge about it. She was healthy and normal as a child and there were no clues that it even existed. Her visits to her doctor were usually annual check ups and minor complaints.
As parents of a teenage daughter, we were dealing with the "teen" issues that many other parents have to go through and were wishing that the phase could pass quickly without her getting into serious trouble. All this indicated a normal healthy teen. Who would have guessed that most of her left cerebellum consisted of a twisted ugly mass of poorly formed blood vessels (arteries and veins) in which blood was flowing through at a high pressure. Who would have guessed that this was ready to explode in her brain on July 17, 2002 and change her life? These kinds of things just don't happen to young people.
An AVM is a cluster of veins and arteries that lack capillary linkage. Without this linkage, blood in the AVM flows from high-pressure arteries to low pressure veins at a very rapid rate. The size can vary from a small-localized tangle to a huge mass involving a large portion of the brain.
AVMs are fairly rare, with an incidence of less than 1% in the population. AVMs can occur anywhere in the body, but it is in the brain that they are a special concern because of the damage that they can cause when they rupture and bleed. They can seriously disable and eventually kill a patient if they are not recognized and treated promptly. Usually, they are discovered in young adults between the ages of 20 to 40 when they present with a traumatic bleed. It is quite tragic because these adults are in the prime of their life starting a career and new families. An AVM rupturing in a younger child is even more rare.
What causes AVMs is not known, but they are probably present at birth. They are not something that is inherited, in most cases. They occur equally in all races and sexes.
I remember July 17, 2002 very clearly. It was an extremely hot muggy summer day when I arrived home from work. My daughter has just come home by bus from her summer job and was relaxing, watching TV. I remember her asking me to make her some supper because she was hungry. She ate it at about 5:30 p.m. At about 6 p.m. she came upstairs and very quietly told me that she had a terrible headache. She described it as the worst headache in her life. Then she told me that she was seeing me "blurry". These were not good signs. When she told me that she felt like throwing up, I immediately knew that something was seriously wrong and that she needed medical attention.
Countless possibilities went through my head. What should I do? Do I call 911, do I take her to emergency at a local hospital, or do I take her to the Hospital for Sick Children? I made the decision to drive her to Sick Kids. I felt that something serious was happening, but I had no idea how serious or how little time I did have.
As I walked her to the car, I saw that she was getting very weak. My husband had just arrived from work and I ordered him to get in the car immediately. She was vomiting as I drove to the hospital in rush hour traffic. I remained cool, calm and collected while driving because I knew that I had to be that way.
When we arrived to the emergency entrance, Elizabeth was too weak to walk. I had to find a wheelchair for her, which fortunately was in the doorway. I shortly realized that I had gone to the old emergency entrance and the new entrance was the other side of the building. We were lucky that a staff member walked me to the Emergency Department, because now I was starting to get panicky. My hands and legs were shaking and I was now crying. The time was about 7 p.m.
When we arrived in the Emergency Department, I waited for a few minutes. I was then informed I had to take a number in order to be seen by the triage nurse. This is when I lost it. I started to cry even more. I remember a mother getting up and telling me to take her number because her child was not as sick as mine. God bless her.
Things became a blur from then on. A nurse came immediately and directed me to an examining room where I helped her undress my daughter. I informed her that she had complained of a terrible headache at about 6 p.m., with blurred vision and vomiting. By this time Elizabeth had been hooked up to monitors. She was able to answer questions about her name, address, and phone number, day and year but you could hardly hear her. Then the nurse surprised me by asking me if Elizabeth was cross-eyed, to which I quickly answered no. Then I watched her heart rate go down to 30 and then to 140 and her blood pressure go all over the place on the monitors. I was starting to panic. I remember the nurse saying out loud, "What is going on?" My husband had just come in from parking the car. A physician asked us if she had taken drugs. We told them that we didn't think so, because she had worked all day and had just arrived home shortly before I came home. They gave her naloxone and charcoal anyways. Then they informed us that she had stopped breathing and that they had to bag her. After this, she was put on a respirator.
I remember stepping back and seeing 14 people working frantically to save her life. This couldn't possibly be real. My daughter was healthy, just 2 hours ago. What was happening to her? Was this like in the movie "Matrix" where reality was not reality. I just couldn't believe what was happening. And I sensed that she was dying in front of our eyes, with every doctor and nurse working frantically. She was given Lasix, mannitol, lidocaine, acyclovir, .... A cardiologist was called and an echogram was done. It was not her heart. A CAT scan was booked and they continued to try to stabilize her. It was about 9 p.m. when she had the CAT scan. At 9:20, Dr Rutka, a neurosurgeon at the hospital came to tell us that our daughter had a massive bleed in her brain and that they had to operate immediately in order to save her life. They had to prepare her for the operating room. The time was 9:20. At about 10 p.m. she was taken into the operating room where the team worked to save her. At 2 am, Dr Rutka came into the waiting room to inform us that our daughter had a massive bleed of about 5cm in her brain stem and that she had almost died. She had lost so much blood that they had to give her a transfusion. He told us that the cause was a very large AVM. I remember his words very clearly. He informed us that it was the second largest AVM that he had ever seen and that it was very difficult to remove that blood clot. He had to leave some clot because of the difficulty accessing it without damaging the blood vessels and causing further bleeding. He told us that he had inserted an EVD (external ventricular drainage) tube, which would drain the excess spinal fluid and blood into a sterile bag. This should relieve some pressure on her brain. He told us that she had hydrocephalus in the brain because of the bleed. In addition, I remember him telling us that because of so much blood in the ventricles, that she would have to have a shunt put in the near future. She was to be transferred to the Critical Care Unit.
The next two weeks, Elizabeth was in the Critical Care Unit at the Hospital for Sick Children. These were tense moments. Her prognosis was poor, meaning that they didn't know if she would make it. She was put on a paralytic drug the first day so that she wouldn't fight the ventilator and raise her intracranial pressure. She had tubes running from everywhere. She was attached to a ventilator, which was breathing for her. She had a Nasogastric tube inserted through the nose into her stomach where they fed her. She was hooked up to intravenous lines where she was getting medications and solutions fed into her bloodstream. She had an EVD (external ventricular drain) tube drilled into her skull and inserted into the ventricles of the brain in order to drain cerebral spinal fluid and blood into a sterile bag. The drainage was quite bloody and continued to be so for several weeks. She had a catheter inserted into her bladder to drain urine.
She was hooked up to many machines monitoring her heart rate and conduction, her blood pressure, her oxygen perfusion, her intracranial pressure. A ventilator controlled her respiration rate. The nurses monitored her urine by measuring volume and specific gravity. Her cerebral spinal fluid drainage was measured hourly. She looked close to death's door. It was very frightening to see.
Every two hours, the nurses and doctors would wake her up and check her responses to monitor for alertness. It was reassuring as the time went on that she would track, wiggle her fingers and toes on command and blink her eyes. I knew that in spite of all the trauma that she had endured, she was quite aware.
Even though I was suffering unbelievable agony and stress during this time, I was quite impressed with the professionalism of all the staff. Both nurses and physicians were kind and considerate of the patient and the family. They would talk to our daughter and explain every thing that they were doing. They would try to ensure her dignity at all times in spite of all the invasive procedures that were done to her. Staff was very good in answering all our questions, explaining things. and reassuring us.
We stayed by Elizabeth's side all the time. We slept in the waiting room with the other parents. We ate all our meals in the hospital. We were allowed to visit her in the Critical Care Unit whenever we wanted, whether it was in the day or in the middle of the night. These were tense and exhausting times.
Because she was on a ventilator, she picked up a pseudomonas infection in her lungs, which they treated her with antibiotics. Her blood pressure continued to be high, so she was treated with nitroprusside. She continued to be on a ventilator. Several times the nursing and the respiratory therapists would try to wean her, but she was not able to breathe on her own. There was some thought about permanent damage to the brain stem because of the force of the massive bleed. I had terrible nightmares about her living a life hooked on a ventilator. The physicians discussed inserting a tracheotomy, but I resisted the idea. I was quite aware of the scars that it would leave, which can be traumatic for a young girl. I pleaded with them to wait a bit. If they had to, I would not object, but I wanted to wait until the last possible minute. Apparently, if one is on a ventilator for more than 2 weeks, without a tracheotomy, permanent lung damage can occur.
One week after the bleed, Elizabeth had an angiogram done to determine more information about the AVM. It showed a massive AVM of 3.5 cm in her left cerebellum. The AVM was being fed by 3 large arteries. After she woke up from the anaesthetic, we found that she was not able to move her left arm and leg at all. Even though none of the staff would admit it, I clearly felt she had stroked from the angiogram. The angiogram showed a vasospasm in a major artery in the brain. This apparently was quite dangerous. The physicians put her on nimodipine for this.
Around this time in Toronto, preparations were being made for this Pope's visit for World Youth day. There was a lot of excitement around the hospital, because University Avenue, which the Hospital is located on, would be closed for the Youth of the World for one day. I could feel the positive energy of healing in the air from all the young people. I so desperately wanted some of this energy to go to my daughter who was very ill in Critical Care. That evening, when my husband came in for his shift at my daughter's bedside, I went home and logged on the Internet. I had an idea that if I could send out a message for the young people to pray for my daughter, that perhaps it might make a difference. I sent out a " Plea for a Prayer for My Daughter" to whatever site I could find on the Internet, for World Youth Day. Medicine had done what it could for her; now prayer was our only hope. The following day, my brother in law brought up the request for the prayer to his church, which was having a special mass for World Youth Day. It was on this day, that the therapists tried to wean Elizabeth off the ventilator again. This time, she started to take breaths on her own! It coincided with the time that the special mass was happening. I believe that there was incredible healing taking place as a result of the prayers and positive energy. My child would not have to have a tracheotomy and be tied to a ventilator for the rest of her life. What joy I had at the moment!
On July 26, 2003 a MRI was done. It found that she had had 3 strokes, in the cerebellum, the top part of the corpus callosum and the caudate. We were told that all of these can be compensated for, and that her higher functions were intact. The MRI showed swelling of the brainstem, but no permanent damage. There was blood in the fourth ventricle, and she probably would need a shunt. I was quite relieved that in spite of the devastating bleed that she would probably come out pretty good. We were to have our daughter back!
On Sunday July 28, 2002, when hundreds of thousands of young people were rejoicing in Downsview, Toronto with World Youth Day, we were rejoicing because our daughter was extubated. This means the ventilator was removed for good! She appeared to be improving .We would be transferred out of the ICU to the step down unit on the head injury floor. Finally we were getting to the next stepping stone in her recovery. I am sure every parent breathes a sigh of relief when their child moves out of intensive care, as we did.
However, our joy did not last for long. After she was moved out, she appeared to be getting worse. When she was in the ICU she was awake and alert during the day and responsive to us. She would watch movies on the television and wave to her visitors. She would smile at us. After she moved to the unit, she became sleepier, less responsive and appeared to be in pain. Throughout all this time, she did not make a sound. She did not cry out in pain or even moan and groan. She was silent. The only way we could tell if she was uncomfortable was from her heart rate. When she was sleeping, it was 80 or 90. When she was uncomfortable it would go up to 140.
In the ICU, they tell you that the experience is like a roller coaster ride. The patient can have good days and bad days. However, I felt that our roller coaster was going downhill. The days were getting worse; she was getting worse. I could sense it, but according to the blood tests, they couldn't find anything. However, on Wed July 31, she become non-responsive to me, and her eyes started to go back and forth. (nystagmus). I called the nurses who later paged the neurosurgeons. There was something indeed going on that wasn't quite right. An EEG was done, but it ruled out a seizure. The back of her neck, where she had had the initial incision was wet with a spinal fluid leak. Her external ventricular shunt (the tube draining brain fluid out into a bag) was blocked. She would have to go to the OR and get another one put in. At the same time they did another CAT scan and MRI. After this procedure, they realize that she had acquired pseudomonas bacteria in her brain. She had acquired pseudomonas meningitis, a hospital born bacteria that is very difficult to treat and can be quite toxic. It is especially hard to treat in the brain because antibiotics have a hard time to reach there and the doses have to be very high. Another nightmare for us to live through.
She was put on a triple intravenous antibiotic therapy to combat this very resistant bug. She again was fighting for her life. In the ICU, she had always been responsive to us. Now she stopped responding. She did not move a limb, a finger or toe and even was not able to blink. I remember the days as a blur where my husband or myself would sit by her side, play her music for her, read to her and try to comfort her as best as we could. We were helpless. We had to just wait for the antibiotics to kick in and start fighting the bacteria. She appeared to be worse off than she ever was before. We were informed that she would have to be on IV antibiotics for a month. As a result, the nurse practitioner suggested that we needed to put in a PIC line where they could give her the medication without "blowing" her veins. In addition, they would have to put in a G-tube where they could feed her through the stomach rather than a NG tube. It was explained to us that the risk of aspiration was lower with a G Tube. Both of these were surgical procedures. On Aug 8, she went to the OR to have the two procedures done. The following day, she had to go back to the operating room to have a new external shunt put in. In fact, every week until Sept 9, she would be back in the OR to have a new shunt put in. Because of all the surgeries and anesthetics that she had, she had lost a lot of weight. She appeared to be skin and bones.
We were fortunate that she was able to tolerate the incredibly high doses of the antibiotics that she was getting. In spite of the bouts of vomiting and some diarrhea, she did not get an allergic rash, or any other serious side effects. I was quite vigilant that blood levels of her medications were being done. I knew that the medications could be toxic to the kidneys or the hearing and I didn't want her to have yet another problem to deal with. It was bad enough to deal with the damage that she already had.
After two weeks from the initiation of the antibiotic therapy, she started to improve clinically. She appeared to be more awake and alert. She started to move her right leg and she would help the nurses in shifting her body weight when they would change her. However, she was not able to move her left leg and arm. Communication was difficult because she was not able to move her hands and even the eye blinking was not consistent. However, somehow I knew that she was aware of what was happening around her.
During the weeks that we had been in the hospital, we had had a lot of visitors. But I was most impressed with a coworker of my husband who had come in on his own to pray for my daughter when she was seriously ill in the ICU. He had explained to me that he had a compulsion to come and pray for her; that God had spoken to him to come and do this. I was impressed with his compassion so I let him come in a pray for her in the ICU. I was moved by the energy that seemed to come from him to my daughter. I felt that his visit was healing and powerful. I am not one to be obsessed with these kinds of things, but there was something there that I could not put my finger on.
When Elizabeth was starting to recover from the meningitis, but had not regained the use of her hands and left leg, I asked my husband to ask this same coworker to come back and pray again. He came on Aug 20. He prayed for her for about 5-10 minutes. The strangest thing started to happen. With the hand that had not moved at all, she reached out to him to touch him. It was quite a spectacular scene. She had not moved much since the meningitis and she was leaning forward with her body and reaching with her left hand. You could see the emotion in her. You could see the healing. The nurses at the Hospital for Sick Children had told me about the power of prayer. I was seeing it first hand.
After this, she did start to improve more quickly. She started to move her limbs and arms more and more. She became restless with her legs and was moving them day and night for a few days. Staff called it the agitation phase, but I also knew that she had severe abdominal cramps. From her heart rate I could tell she was very uncomfortable. It was not clear if it was agitation that occurs as a result from a head injury or agitation as a result of abdominal distress.
She continued to remain silent. She had not made a sound since the day of the bleed. Not a cry, a moan or a groan. We found that we had to be her advocates because she was non-vocal. When we thought she was in pain, we would ask for an analgesic. When she needed to be changed, we would change her. We learned that just because a patient is silent does not mean that they do not have needs. Often the quiet ones get ignored because they are not creating any problems. We, more that ever had to watch and attend her needs.
Because Elizabeth had been immobile for so long, she had to be turned constantly She had to wear special stockings to avoid blood clots, which was another danger. She could not be given anticoagulants because of her AVM . This would have spelled disaster. We were taught to give her special exercises in the legs to prevent the clots. I could tell that she was in significant pain when she was turned because of the surgery on her neck. She always appeared to be uncomfortable regardless of the position that you put her on. Once when I had turned her, I started to talk to her about how I could only guess what position would make her comfortable. I told her that the only way that she truly could become comfortable would be to reposition herself on her own. I could not believe it when she actually turned herself as a result of that talk. And she hasn't stopped since. I knew now that she understood everything that I was telling her.
On Aug 22 we got the news that her white blood cell count was zero. This means that the bacteria were probably gone! We had passed the hurdle. Her meningitis was cured.
Elizabeth continued to improve. She laughed appropriately at situational comedies on television. She would laugh at our jokes. She would interact with her friends when they came to visit, even though she still could not speak. We worked out a system of communication with her. She was very receptive and responsive. It was very reassuring to see this, because I knew that cognitively, she was quite with it. Even though she had this massive bleed, meningitis and other insults to her brain, she was coming out of it pretty good.
Lying in bed for two months and significant weight loss had made her weak. Mobility and muscle coordination would be problems because of the nature of the injury. The cerebellum controls these. But the physicians explained to us that a lot of this would be relearned as the circuitry in the cerebellum is reestablished.
Agitation manifested itself as a kind of motor restlessness where she would move her legs up and down continuously. We now had to be vigilant to make sure that she did not pull out her tubes in her head, her IV and her GT. The external shunt was the most critical because this could only be replaced by another trip to the operating room and her risk of infection would be increased. We had to restrain her at times to prevent this from happening.
Another miracle also happened the last week of our stay at the Hospital for Sick Children. From the very beginning, the physicians had told us that she would have to have an internal shunt put in because of her massive bleed. Her ventricles that control the circulation of the brain fluid had been damaged. End result would be increased pressure in the brain, or hydrocephalus, which would result in more brain damage. The problem with these shunts is that they are really just plastic tubes with valves that are inserted into the brain and drain into the peritoneum. We were told that the first year the failure rate is 50% and they can get infected or blocked. Shunt revision consisted of more brain surgery. After having to deal with a bout of meningitis, we were fearful of this. She would have to be tied to hospitals the rest of her life. I prayed so hard that she would not have to need this.
On Aug 28, the nurses clamped the external ventricular drainage. She was able to handle it. She was able to tolerate the clamping on Aug 29. On Aug 30 a CAT scan showed that her ventricles were not enlarged and that she would not need a shunt. This was another amazing victory for us! The neurosurgeons were still skeptical and warned us that she would probably still need one in time. They informed us of signs and symptoms to watch out for. We are still watching for these sings and symptoms, but as time goes on, it appears that she will not need one.
On Sept 9, Elizabeth was transferred to Bloorview MacMillan Children's Centre; a children's rehabilitation hospital in Ontario, This 65-bed hospital is the only rehabilitation centre for children in the province. This was an exciting time for us because it signified the passing from the acute stage to the next stage, which was rehabilitation. It symbolized a step down in the illness stage.
At Bloorview MacMillan Children's Centre, we were welcomed warmly by her therapy team and nurses. On about the second day, she was given a schedule with daily physiotherapy, occupational therapy, speech therapy, school and even recreation. It was exciting to watch her being fitted with a wheelchair on the first day. She always seemed uncomfortable in the chair that she had been given at the Hospital for Sick Children, because it was not properly fitted for her.
The speech therapist was wonderful in implementing a system of communication for Elizabeth. It was as simple as having her point to the words yes and no on a laminated cardboard strip, when she was asked specific questions. Up to this point, she had been understanding what everyone was saying to her, but had no means of communication. Her eye blinking and hand movements were not consistent because of her severe ataxia. As she was still mute, a communication board was designed for her where she could point to letters of the alphabet. As she was very ataxic with her hand movements, the board was adapted so that she could hook her finger under a letter. With these tools, this opened up a new world for her. Now, with this simple device, she was able to communicate her thoughts rather than relying on yes/no questions. It was a slow process, but a better tool than she had before. What amazed me was how accurate her spelling was. If she made an error she would correct herself. This board became a very important device for her because her speech did not come back until mid October.
When it did come, she started by whispering for a few days. After she realized that she had a voice, she started to talk and has not stopped since. At first, her words were unclear, soft and difficult to understand. With intensive daily speech therapy, she was able to practice speaking more slowly and more clearly. Today, almost seven months later after the bleed, she is able to speak quite well. However, she does become more difficult to understand when she is tired. Her voice has changed as well. It is more slurred and has less volume. Because of the cerebellar damage, her vocal muscles had to relearn the pattern of speech. As well, damage from the ventilator had changed voice quality.
Physically, she made small gains daily. When she first came to Bloorview, she could not tolerate sitting in a wheelchair for long periods. She cold not raise her head and had to have it supported on a headrest and her chair tilted back. She could barely raise her arms and legs. All this had been damaged as a result of the bleed. The cerebellum had been damaged. As it controls movement, much of this had been affected. She had to be taught all the basic movements, just like a child might have to, except that she had the memory of what she was once able to do. She had to relearn to sit up, to crawl, to walk and all those other things that we take for granted.
Physiotherapy worked daily with her to improve her upper body strength and leg strength. They worked with her to teach her to hold her neck upright and centrally. They gave her exercises to strengthen her upper body so that she was able to increase her sitting time. They then worked with her to teach her to transfer from a chair to a bed or bench. She learned to stand up from sitting. They worked with her for months on balance with the goal of getting her to walk. They taught her to climb stairs. Today, Feb 2003, she is walking with a walker. I can see her walking on her own soon.
Her vision had also been affected. At the Hospital for Sick Children, I was afraid that she could not see at all. In the beginning, after the meningitis, I did not see her tracking at all. But as time went on, she was able to communicate to me that she could see, but not the same as before. She also had double vision. The cerebellum is involved in the muscle coordination of vision and this had been damaged. Physicians had informed us that it would improve in time, but they could not tell us to what extent. To date, her vision has improved, but she needs enlarged text to be able to read.
Her ability to write was significantly affected. She was severely ataxic in the beginning and any writing was in the form of a scribble. Her writing has improved to date, but she will probably need assistive devices in the future.
Her memory of events prior are excellent. She can remember names, phone numbers, and address of friends. Therapists have told us that her short-term memory has been affected to some degree. Elizabeth, herself recognized that she couldn't remember as quickly as before. Before she was able to read something once and she knew it all. Now, she states that she would have to read it a couple of times. However, at times, it seems her memory is better than mine is. In spite of this, she is able to memorize poems and phrases with very little work. For myself as a parent, this is quite encouraging. Physicians tell us that this memory will continue to improve for up to 2 years.
In the beginning, Elizabeth was very emotionally labile. It didn't take much to make her laugh or to cry. It was heartbreaking when she would ask me, using the spelling board if she was awake or asleep. When I would tell her that she was awake, she would start to cry. She would tell me that she thought she was in a dream; that this couldn't have happened to her. This happened many times and each time it was just as heartbreaking.
As time went on, I explained to Elizabeth what had happened to her. I explained about the bleed, the meningitis and her being sick at the Hospital for Sick Children for almost two months. She does not remember her time spent at Sick Kids. I feel that it is almost a protective effect; to shield a person from terrible memories of pain and suffering. She keeps insisting of an image that she had of her having a terrible headache, my taking her to the hospital, being checked by physicians and being told that she was fine and could go home. When I remind her that this did not happen, that she had a terrible bleed and that she has been in hospital since, she would cry.
Seven months later, she does occasionally cry about why this happened to her, but she does seen to be coping very well.
The Toronto Brain Vascular Malformation Study Group reviewed Elizabeth's case, with Dr. Peter Dirks and recommended giving her a course of three embolizations. These procedures would prepare her for the surgery to clip the AVM. These embolizations should reduce the blood flow and make the surgery safer.
Embolization is a procedure done by a neuroradiologist, where a tiny catheter is inserted into the groin and fed through the arteries until they reach the area they want to work on in the brain. The glue that is injected is a very quick drying, non-reactive glue, which will block off the feeder arteries. The procedure is not without risk, with the chance of stroke as 3-5%. Other side effects can include headache, numbness, and tingling.
Dr. terBrugge was Elizabeth's neuroradiologist. He is quite skilled and has done many embolizations. He is quite renowned in his field. We have been very fortunate to have such an accomplished neuroradiologist for our daughter.
In addition, the Toronto Brain Vascular Malformation Study Group felt that Elizabeth's bleed was probably due to an aneurysm associated with the AVM. Aneurysms occur in 30 % of AVM patients.
With her first embolizaton, the goal was to occlude the aneurysm and a feeder artery . This was successful with minimal side effects. Elizabeth did have some numbness and a headache for a few days after she was discharged from the Toronto Western Hospital. But the headache was relatively minor and was treated with Tylenol.
After the embolization procedure, she spent the first day in the neurological ICU where she was monitored carefully. She was instructed not to move her leg where the catheter was inserted, for about 8 hours. She was observed constantly. After the first 24 hours, she was sent up to the neurological ward for one day and discharged the following day. There was a boggy area in the back of her head that she had had since the bleed. After the first embolization, this area had disappeared
The first embolization was the last week in November, her second was in the middle of January, and the third is scheduled for Feb 26.
The second embolization, reduced the blood flow even further. As Dr. terBrugge explained to us, he had changed it from "Niagara Falls" to a smaller falls. The third embolization goal is to close all remaining feeders for the AVM. After this third embolization, the neurovascular group will again meet to discuss her regarding the next step.
For Elizabeth, radiosurgery is not appropriate, because her AVM is too large and too close to the brain stem. As well, it takes two to three years for radiosurgery to work. During that time, she could risk having another bleed. If she was to bleed again, consequences could be disastrous because of the location.
The AVM is too large for embolization alone to be effective. However, the embolization should reduce the flow and make the surgery safer.
Even though we had extra insurance for Elizabeth, it did not apply to her. It was accident insurance. Thus if she was in a car accident, or if she fell down some stairs and bled, then she would be covered. But because it was a bleed from an AVM, which is a medical condition (even though we did not know about it), this insurance does not apply.
Fortunately, in Ontario we have Universal Health Care and almost all her medical costs were taken care of. I don' know what we would have done without it. For this, I am very grateful. I feel that the care that she has received has been excellent. My heart reaches out to those people in the United States with the same condition that have to wait and save money for their next embolization or surgical treatment.
I have felt compelled to write this story about Elizabeth because I would like to increase awareness about AVMs and the wonderful work that is being done for patients afflicted with this condition. The teamwork at the Hospital for Sick Children, the Toronto Western Hospital and the Bloorview MacMillan Children's Centre is outstanding. They all network together to ensure that our daughter's care and rehabilitation is optimal. Her treatment of the AVM is carefully planned out, not by one neurosurgeon but by a whole team of experts. This is reassuring for us, as parents to know that they are looking for the best possible outcome for our child.
Even though the incidence of AVMs is not that common, it is quite amazing how many people we have met, since this has happened, where they know of someone who has had a bleed. It is important that the public recognize that the three symptoms of a terrible headache, blurred vision and vomiting are an ominous sign and that medical attention should be sought right away. If a life can be saved by having someone read this story, recognizing the symptoms and seeking treatment promptly, I will be grateful.