Phil Waite was born in 1968. He spent his childhood growing up in Warrensburg, MO. He spent 3 years serving in the U.S. Army in Germany in the late 1980s. Phil also spent 2 years as a missionary in both Brazil and Alabama. He initiated his college career in Utah in 1991 and is now nearing the end of his education for a Ph.D in Health Promotion and Education at the University of Utah. His beautiful wife, Shelley, has been his spouse for 6 years and is a C.P.A. for the state. Phil fell prey to his AVM in January 1999 and received his final treatment in May 1999.
After arriving home from church on Sunday afternoon January 10, 1999, I collapsed and had a grand mal seizure. My wife was present and of course was terrified. Prior to that moment, absolutely no sign of health troubles had ever come up in my life. I am currently 31 years old and am currently enrolled at the University of Utah in Salt Lake City, Utah. I am near the end of my studies to obtain a Ph.D. in Health Promotion and Education. As a career, I spend my time teaching courses and educating people on how to prevent illness and maintain wellness. I have always tried to live as an example of how a health conscious person ought to live. So, it was no small shock to me and my wife that I had experienced a seizure.
Anyhow, she called an ambulance and I was taken directly to the University of Utah Medical Center Emergency Room. After performing a simple head CT scan, the problem was readily apparent. I was diagnosed as having an arteriovenous malformation (AVM) in the left side of my brain, specifically the medial temporal gyrus. I have to admit, that I had never heard of an AVM. Probably, because my field focuses on preventing disease that is preventable! As all of you know, AVMs are congenital and are not something you can stop by eating right and exercising, etc. Very ironic that I come down with something like this!
Anyway, the neurosurgeon assigned to me, Dr. Randy Jensen, told me that there are basically three procedures used in treating AVMs that I could choose from. The three procedures were: 1) embolization surgery, 2) radiosurgery, and 3) open cranial surgery. Due to my young age, they told me it was unwise to leave the condition untreated or I have a serious risk of hemorrhages over my life span. Meanwhile, I was started on Dilantin to prevent further seizures that could spur on a bleed.
After a great deal of emotional upset, my wife and I decided that I should undergo the embolization surgery first and see how it goes. I ended up having embolization procedures done twice: one on February 17, 1999 and one on March 4, 1999. Each experience involved me receiving angiograms and the radiologist filling up several blood vessels with glue that shut of portions of my AVM, followed by an overnight in the ICU. Both procedures were successful at reducing the size of the AVM. Unfortunately, in my case, embolization alone simply could not take care of the whole AVM. In other words, I could still bleed...and we all know what that could do!
In my case, the biggest concern short of dying was the loss of my ability to communicate. The left temporal lobe controls the ability to express thoughts and comprehension of information. My AVM was located right in amidst my left temporal lobe. Going in to have an embolization was always stressful knowing the increased risk for hemorrhage. More than that, in my situation they doctors needed to test my speech and comprehension prior to and after embolizing blood vessels. Therefore, I was kept awake without painkillers during my embolization procedures. It was a very strange sensation actually hearing the tiny catheters being fished around inside my head. Each time a vessel was filled with glue, I experienced very sudden unpleasant pain. I didn't like the pain, but I would recommend Dr. John Jacobs here in Salt Lake City. In the end, he did reduce the size of my AVM by half to a size just over 3.5 c.m. long without puncturing vessels or causing any other problems (except stress for me being awake).
Left in the situation where I had received successful partial treatment, I was left with the last 2 options. I either needed to look at having radiosurgery (radiation beam) or having open cranial surgery. My surgeon, Dr. Randy Jensen, refused to do the open surgery due to the "eloquent" location of my AVM. He was honest (I highly respect him for being honest!) and said that he didn't think he could remove the AVM without taking out brain tissue that would likely result in damaging my ability to communicate. He did however recommend a neurosurgeon that specializes only on brain vascular procedures in tough areas. His name is Dr. Robert Spetzler of the Barrow Neurological Institute in Phoenix, AZ.
Over the last couple months we visited with a specialist who was anxious to use radiosurgery on me, but could only be hopeful (around 80% chance) that a total cure in several years might result. Even considering that fact that there are dangers to having radiosurgery done to any surrounding healthy brain, I still thought that it sounded fairly hopeful. I did realize that in the following year or two, I was still at risk for hemorrhages when waiting for any positive effects.
My wife and I had almost decided to go that direction, until we actually spoke to Dr. Spetzler. I cannot relate how our conversation exactly proceeded, but he was very direct and to the point. He told me that he was willing and able to do the open surgery and recommended that route above radiosurgery. He believed that if he were to do surgery I would have a 95% chance of having a complete cure of my AVM with no long-term symptoms. We were so impressed by him that by the end of our discussion, we knew what we were going to do.
On May 11, 1999 I underwent surgery to have my AVM removed. Spetzler and the others involved were successful! The actual surgery lasted about 5 1/2 hours (9:00 a.m. to 2:30 p.m.). I spent 3 nights in the ICU and one night in a regular room in St. Joseph's Medical Center in Phoenix, AZ. I must admit that the experience was not a lot of fun. The anesthesia took a day and a half to wake up from and afterwards gave me nightmares.
May 18, 1999, one week after my surgery, I am feeling great! My wife and I have already returned here to SLC, UT. Today, I am very tired and have a serious headache (57 staples along the incision and no hair). Regardless, I am beyond glad to have the AVM completely gone. I will, of course, be prudent and have good follow-up care, but I fully expect to resume normal activities from this time on. I am just thankful for every blessing I have received. I hope that my story can be helpful for many who are in a similar position.
Update 3 Aug 1999
Dear Friends,
It's been awhile since I first wrote and I wanted to update you all on how I am doing. Thankfully, I am doing absolutely wonderful! Nobody can believe how fast I have recovered. To say that my recovery has been problem free since my surgery would be inaccurate, however. I did have a couple of really tough weeks in June (just after posting my narrative). One week was difficult due to a severe headache that just wouldn't quit. Then the next week, the bone flap (the piece of bone that was removed and screwed back in during my surgery) in my head began shifting. This resulted in nausea for a week. Both of these events resulted in more CT scans. However, both scans came back normal.
In July I had an EEG to check my brain for any residual seizure activity. Everything looked good, so I am now in the process of weaning off Dilantin. Yea!!! I also recently met with a neuropsychologist, who tested me on my memorization and language ability. Apparently, I have suffered no ill effects from the AVM whatsoever. They admitted to being stunned. Apparently, they did not think that I would come out of my surgery without some decline in my communication abilities.
In the past few weeks, I have started playing golf, running, lifting weights, and hiking again! I am also enrolled in school for fall semester at the university and will be teaching a Stress Management course. Maybe they think I have more experience now! Ha! Ha! :)
The past seven months have been quite an experience. One that has changed Shelley's and my life forever. We have seen God's hand in our lives more clearly than ever before and have literally witnessed miracles. We have truly been blessed. Our prayers now lie with the rest of you who are currently dealing with your own challenges. May the Lord bless, guide, and comfort you all.