NARRATIVES
TALK TO A
ADVICE
Established April 15, 1995
University of West Georgia Disclaimer
22 February 2007
My name is Glenn Oliver and this narrative is about my son Scott. Hopefully this narrative will help someone and your family in dealing with an AVM.
In September 2001, Scott had just started LSU (Louisiana State University) and was a member of the "Golden Band from Tiger land". Scott played trombone and was so incredibly proud to be chosen to be in the band.
If you follow college foot ball at all LSU was one of the up and coming teams in the country in the fall of 2001.
The band travels with the team and LSU was going to the SEC championship in Atlanta. My wife Cindy and I were going to my office Christmas party. It was a Friday afternoon in December when we got the call from Roy King who is the assistant band director. The 325 member band travels on 7 large (double decker type) busses and are escorted by Louisiana State police who stay with them all the time (fortunately for us). Scott evidently had a seizure while napping on the bus in the middle of Alabama near Montgomery. They were pulled on the side of the interstate. They took him by ambulance to Montgomery General Hospital. I spoke with an Alabama State Policeman who assured me they were taking care of him and he was in good hands. The Alabama State police went with him and the doctors at the hospital knew we were concerned and kept us informed by cell phone as we made a 6 hour drive to the hospital.
At the emergency room they did a number of tests and really could not find anything wrong. Scott obviously was embarrassed about all the commotion but was surprisingly very alert although a bit tired. He wanted to go to Atlanta. The doctor said if Scott thought he could do it then try and we did. We drove the rest of the way to Atlanta, found the hotel and reunited with the band. Everyone was very surprised but very glad to see Scott was OK. The band performed the team won and we came home. We sought advice from our own doctor who consulted a neurologist who reviewed the records and said "we can let one seizure go" but if it happens again then there is something wrong. That was December of 2001.
In April of 2003 I got a call from Scott on a Saturday morning. Scott evidently had another seizure in his sleep and was in the emergency room at Baton Rouge General. As a result of the seizure his heart had experienced a dangerous condition called atrial fibrillation but was being controlled by medication and was fine according to the emergency room doctor.
After going through 2 days of tests a CT scan and MRI showed the AVM. He was lucky. While the seizures were extremely upsetting it was the sign that there was something wrong. We know the probability of problems occurring go up as we age. He was 19.
Scott was very fortunate the AVM was discovered before it gave problems.
We were referred to a neurosurgeon in Baton Rouge who explained what were the treatment options. We decided to seek treatment in New Orleans so we would be close to home. Luckily, New Orleans has a renowned medical community. I studied all I could and learned all I could about the condition to know the full extent of the various treatment options etc. I promised Scott I would get him the best doctors and care we could find to treat the condition.
I had to drive back to Baton Rouge several days later to get Scott's records and films since we had to bring them to other doctors for review. I picked up Scott from school and we went to the hospital to retrieve the records. In the envelope with the films was the typed report. We read through it together and when Scott read the sentence about aneurysm his face went ashen. Evidently an AVM may give rise to an aneurysm. The enormity of the condition was just starting to sink in.
I began the search for doctors and remembered my best friend's sister is an orthopedic nurse. I figured Donna could give me some guidance. I called Paul in tears asking him to speak with Donna to find a recommendation on a neurosurgeon. She immediately said to go see "Dickie Corales". I said who's Dickie Corales? This was Dr. Richard Corales who was a college fraternity brother of her brilliant engineer husband who was a wonderful neurosurgeon. We went to visit him several times and after getting second and third opinions Scott wanted Dr. Corales to treat him. Never have I witnessed such care and concern from a doctor. Dr. Corales explained he would "coordinate" all of Scott's care and choose the best doctors for each step of the way. The point here is you must feel secure with your doctor and his confidence in treating you. Dr. Corales told Scott and us that he could treat Scott's AVM. He told us if he did not feel he could do it he would refer us to Phoenix or New York. I came to understand that Phoenix is the AVM treatment center of the US. It seems that is where many of the very difficult cases go for treatment.
I still could not believe this was happening and naively asked Dr. Corales "is this going to be a big surgery - ventilator and all?" to which he replied yes it is a big surgery including a ventilator. It was only then that I began to fully realized the gravity of the situation. It seemed like we were in a nightmare and we would wake up and it would be gone...but it was happening. My wife and I along with Ashley my daughter would go with Scott to see Dr. Corales so we all could hear what he had to say so we would not miss anything. Even as hard as you try to concentrate your mind will drift when he is talking and explaining the procedures that will be performed on your son. You still cannot believe this is happening. Suggestion...take notes during meetings with the doctors.
The first procedure was to have the cerebral angiogram. I cannot remember his name but the doctor who did the angiogram was fabulous with Scott and all went well. By the way Dr. Corales told us he would be around there that morning checking on Scott.
Once Dr. Corales read the results of the cerebral angiogram he decided on the his recommended course of treatment. The treatment would be embolization of the AVM and then removal by open surgery. He thought the AVM was a little too big to be treated with radiation (gamma knife) and that treatment would take 12 to 18 months for results.
Next we met with an interventional neuro radiologist, Dr. Robert Dawson. It was Dr. Dawson who told Scott he could not play his horn until he was treated. The pressure from blowing the horn could cause problems. This proved to be the impetus to go all the way with the treatment. Scott vowed to get treated and back to school and back into the band by the beginning of the fall semester. He did it and did not miss one day of school or band.
Dr. Dawson did the embolization on a Friday morning and all went well with that procedure. Dr. Dawson said he got 80% of the AVM. Scott was fine although had a headache. Dr. Corales kept him over night to be safe. Scott went home on Saturday morning. The big surgery was scheduled for Monday morning.
I have a daughter Ashley who is 4 years younger than Scott. She loves to dance and had months before signed up and paid to attend one of her favorite summer dance camps in Hammond, LA at Southeastern University. We told her to go to her camp and we would keep her fully informed about Scott via cell phone. I know she was torn but we assured her it was OK to go and Scott told her to go and to enjoy the camp and come back and tell him all about it. At least Ashley could be free from the waiting torture.
We got to the hospital at 5:00am, got checked in and waited. It was only when we got into the room did Scott show fear. I told him I did not know why this was happening to him but Dr. Corales was going to correct the problem and some day we would look back on this as something we overcame that was now a distant memory and smile. I told him he was much braver than I and I and all of us were very proud of him. He really only cried a little, settled down and prepared himself for the event.
The nurse gave him a sedative to relax him and then soon after they called him for surgery. He was scheduled for 7:00am. Usually no one can go with the patient but that morning those rules did not apply to Cindy and me as we accompanied him into the surgery waiting area. I knew how big this was when the anesthesia nurse put large needles for IV's in both arms which she deadened before inserting. I am only telling you this to help you through the path.
When they told us they were ready to take him I could barely let him go as I was consumed with fear. It was the day before his 19th birthday, July 14th 2003. After they took him I completely broke down and had a difficult time trying to find our way out of the surgery suite to the surgery waiting area.
The time for the surgery was about 7 hours. Tell your family not to freak out if or when it goes longer than you were told. It seems the time given is the actual time of the procedure. You have to add for the preparation time before and the time after the procedure is completed which adds considerable time to the total.
That was the longest 7 hours of my life and our family. I prayed for a number of hours saying the rosary's sorrowful mysteries and then the glorious mysteries. When Dr. Corales finally came to see us you could see he was very tired. He asked to sit down with us. He said all went very well and went as planned. He said the embolization helped a lot and saved several additional hours of surgery. As you know the risk is hemorrhage and the embolization procedure as it was explained to me is used to reduce that risk during the surgery.
Scott went to ICU for the rest of the day and the following day (his birthday). The concern now was did he encounter any deficits. By the grace of God he evidently had none but they kept checking him regularly to be sure. He went home on Thursday. He had all his hair cut off (crew cut) and 30 staples securing the incision. I know this on top of everything else will be difficult but truly his scar is not noticeable once his hair fully grew back in. The staples help with minimizing the scarring. Scott also said there was never much pain at all. He took some pain medication during the ICU stay but after only regular extra strength Tylenol.
I have been a commercial insurance agent for nearly 30 years. I have seen some horrible claims inflicting terrible injuries to individuals. I only say this for background infomation. I thought I was quite strong. After Scott's AVM experience was all over I had a tough go of it evidently due to trying to carry the entire load through the ordeal and a year after it was over suffered significant depression requiring treatment. I was diagnosed with the same condition soldiers sometimes get after battle, post traumatic stress disorder. I have medication and went through therapy and I am back to normal, thank God. I tell you this openly because this was extremely stressful and difficult for everyone and coping can be tough on everyone not just the patient.
Scott completed his undergraduate business degree at LSU. He did very well. He chose to continue on to graduate school and will graduate this May 2007 with his MBA in Information Systems Internal Auditing. He has several prospects for employment and is to be married the week after he graduates on May 26th. Ashley is also at LSU in her second semester.
Just for background we are Kenner, LA which is a suburb of New Orleans. We witnessed first hand the destruction and decimation caused by Hurricane Katrina. Our family was very fortunate to have only relatively moderate damage to our home. Many many other homes and families were heavily damaged or totally destroyed and 18 months later are not much better off than the day after the storm.
I hope Scott's story helps someone. I know God will lead you out of the darkness into the light. The angels will guide your doctor's hands to bring you back to good health.
I realize from reading the accounts of others that Scott's AVM experience was a very fortunate one.
I do pray that others afflicted by this seditious, dangerous and harmful condition will have positive outcomes. I do also pray for those who have not been so fortunate hoping their lives will improve.
Finally, for those having lost a family member, particularly those losing a son or daughter, I cannot begin to know your pain. I do believe they are in a better place away from the pain and sorrow this condition can inflict upon our human body.
Good Luck and God Bless You.
Discussion, comments, or questions: Glenn Oliver
© Copyright 2006 Glenn Oliver
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