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Established April 15, 1995
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Our son, Matthew was a gift from God. He was 17 years old, born and raised in a small town in New York. He decided at the age of 8 years old that be wanted to become a Doctor, And so he followed his goals and dreams in hopes to make this come true. He was a straight A student, in the top 5% of his class (2009) at his High School, a member of Senior National Honor Society, volunteered at the Red Cross passing out the snacks, Volunteered for our local Methodist Church, was a member of ski club, Academic Challenge Bowl, Ran Outdoor and indoor Track, Ran Cross Country in the fall, was a representative of New Yorks Boys State, was chosen and attended the first ever BIO-technology class thru our local community college, where he received 7 college credits and also got paid to go! He wanted to attend Pre Medical School and a few weeks ago just took a tour of SUNY GENESEO, where he hoped to be accepted after High School. He was very gifted, but at the same time, was so humble and caring towards others. He was an angel!
19 September 2008
First of all, I want to thank everyone for posting on this site and sharing your stories. Up until January 2008, I had never even heard of an AVM.
Our son, Matthew, who was 16 at the time, had been having trouble with his vision when his Father took him clay pigeon shooting, so we made him An eye appointment just thinking he may need glasses.
The optometrist told us his vision was fine, but he looked like he had some nerve damage and wanted Matthew to see a specialist, so they made us an appointment for the following week. I was a little worried, but not too bad.
At the appointment, they checked his peripheral vision, and he didnt do well on that. After examining Matthew, the Doctor called me in and told me that Matthew may have a pituitary tumor and wanted him to have an MRI, so that was set up for the next morning at our local hospital. I went home and researched all I could about pituitary tumors and it did sound like it was treatable but of course we were still very worried.
After Matthew came out from the MRI the next day, the Doctor (radiologist) told me that they needed to do a CT scan. I knew this wasnt good.
After he had the CT scan, the radiologist called me in (with the nurse carrying Kleenex for me!) and told me he had a tumor. I just about fainted but tried to remain calm because Matthew was in the next room. He arranged for us to meet with Matthews regular family Doctor and that we would need to go to Strong Memorial Hospital to meet someone who takes care of tumors. By the time we arrived at our Doctors office, the radiologist had someone else read the MRI and it was determined he had an AVM.
We met with the Doctors in Rochester, who decided to do an angiogram the following Monday. It was determined that it was similar to an AVM, called an AV fistula, where an artery flows directly into a vein, and the vein was 2 = inches in diameter. We were told they could try to embolize it, but really hadnt done a lot of them. We chose to get a second opinion at Johns Hopkins Hospital in Baltimore, and they first said it was a vein of Galen Malformation, which would be very rare for his age-usually this is found in babies. We then met there the same day with a vascular radiologist, who said he would want to embolize it, and if needed, then he would have open brain surgery if needed after a few days. They also said the probability of it rupturing was great (but couldnt give any percentages) so he had to stop indoor track and ski club.
Upon researching, we found the name of a Dr. Robert Spetzler, who specializes in AVMs and looked into seeing him. Since he is in Arizona, we had to send our information including MRI, CT and Angiogram films and pay a $125 fee for him to look at them. We received a letter from him in the mail a few weeks or a month later, and it stated he recommended embolization and a Craniotomy and he felt Matthew needed it sooner rather than later. However, to try to get an appointment there, we would have had to wait until the very end of June or end of August because he (the Doctor) was going to be out of town for two months. Matthew was a straight A student, top 5 percent and wanted to take his Regents exams and did not want to do it at the end of June, and also he was selected to represent his school at BOYS State thru the American Legion at SUNY Morrisville, which was a great honor and that started July 5th. So we chose the August date, but had to keep calling them, because they never called us with a surgery date. Finally it was scheduled for August 28th for the Emboliztion via Angiogram, and if needed, the Craniotomy would be the following day.
We arrived in Phoenix on August 25th, and he had an appointment with Spetzler on the 26th. We arrived with great anticipation of finally meeting the famous Dr. Spetzler, only to see him for a total of 3 minutes. He said the Benefits definitely outweigh the risks of the surgery, and this would prevent our son from having a hemorrhage or bleed later on in life. He said it was a 95% success rate if he had the surgery, that they could remove the vein. He had a resident come in and explain the surgery and told us that the embolization was the following day, not the 28th. We were surprised because we wanted to do something fun with Matthew on the day before, but we said o.k. Finally, we met with Dr. McDougall, who would be doing the embolization and he explained everything pretty well, along with a resident. By the time we left, a few of them said the procedure would be the next day and then they told us oh, infact it is not tomorrow, but it is Thursday. We were a little confused because they kept going back and forth as to when he was going to be admitted.
So, the next day, (Wednesday August 27th), we took Matthew in for pre-op testing. He just needed some blood work. Then they gave us a tour of the entire Pediatric unit, where they said Matthew would be. They showed us the waiting room, where we could wait during the angiogram and the open surgery and even showed us the rooms and said we could spend the night with him, since he was still a minor. It all sounded like it was going to work out well.
On August 28th, we arrived at 5:30 a.m. and reported to the Pediatric floor, where he was asked a lot of questions, an IV was started and then they took him for his angiogram/embolization at about 7 a.m. We started to go to the Pediatric ICU waiting room, and then the anesthesiologist told us to wait in this little hallway instead and told us she had no clue why we were told to go to Pediatrics. So we waited in the little hallway/room.
He was in surgery for about 3 hours when they came and reported he was o.k., but they were not able to embolize or put any coils or glue into it to make it smaller because the opening from the artery to the vein was too large and if they put coils in, they would be pushed out by the high blood flow possibly ending up in his lungs.
We questioned whether or not he should still have the Craniotomy the following day or if it changed anything, and they said he still would undergo the open surgery.
He ended up being fine that day, came out of the anesthesia slowly and then we were ready to go to the room that they had shown us, but instead of going to Peds, they took him to the adult ICU, so we went along with it. He was a little disappointed about the embolization not being able to be performed, but still was upbeat and his usual funny, witty and smart self. He talked to his girlfriend for a while on the phone and played on the computer. They had told us at his pre-testing that he had an MRI scheduled for 4 p.m. When I asked his nurse about it, she said he didnt even have and order for an MRI, but she would check into it. About an hour later, she said yes, he needed an MRI before surgery, but didnt know what time he would go. My husband spoke with the Lori Esch, the child life specialist who had arranged everything at the hospital and showed us the pediatric units, etc, and she apologized for Matthew not being in Peds, and said tomorrow, he definitely would be back in Pediatrics, where they originally gave us the tour. At 7 p.m., another Nurse came on duty and said he could have his bath, and get ready and that he would be going for an MRI soon. This was at 7:30. My husband took our other son for something to eat in the meantime and when he came back, Matthew still didnt have the MRI. Infact, it was 2:50 A.M. when they finally came and got him-yes, you read that right-almost 3 in the morning and they had kept him awake all that time. I stayed in his room when he went, and he returned about 4 a.m. Finally the nurse said we better get some sleep and closed his door, only to have residents start pouring in the room at 5 a.m., then 5:05, etc. It was ridiculous. My son only had one hour of sleep before a major brain surgery. I felt he should have rested up a little bit, but they just kept coming in. At 8:30 a.m., they came and took him down. We were able to talk to the anesthesiologist, Dr. Parker only, and Dr. Spetzler didnt even come and talk to us before his surgery. They gave Matthew some medicine to relax him, and it made him start laughing, which was better than to see him cry. He was so brave through the whole ordeal.
We ended up in an adult waiting room again and not even close to where they showed us the day before. We finally got a call at 2:50 p.m. from the O.R. nurse, who stated his surgery went beautifully, they did another angiogram after the open surgery and there was no blood flowing into that vein. Approx 30 minutes later, Dr. Spetzler spoke with us for a brief moment and told us his fistula will be gone, they put two titanium clips in and that there were no complications. We couldnt believe it: after 8 months of total worry-our son, who had plans of attending Pre Medical School after high school, was going to be fine!!!
He ended up going back to the Adult ICU again and had a fairly good evening. He was so groggy from the anesthesia and the barbiturates, that it was hard for him to wake up, but he would briefly wake up, say his name, where he was, the year, etc. He could squeeze our hands and move our feet, and we were just overjoyed that our son was going to be ok, and didnt have a stroke, etc. He had approx 43 sutures across his head. At 7 p.m., his new nurse Darren came on. He was very nice.
He remained in bed all evening, with an enormous amount of swelling on the right side of his head. His eye ended up swelling shut. At 2 a.m., they ended up doing a CT scan right in the room. I think the moving of his head made him sick because he threw up what appeared to be blood. They gave him something for the nausea.
At 7 a.m., a cheery nurse name Deanna came to take care of him and things were looking great. They took out the sheath from his femoral artery at about 7:30, which was painful because they have to apply pressure to this for quite a while. He was given morphine and Zofran for the nausea. At approx 2 p.m. the nurse helped him into his bedside chair for a little while. He was still very groggy, but alert and oriented, and able to help get himself into the chair. We gave him a little sponge bath and tried to wipe some of the blood from his head and neck and ears. His swelling was getting worse on his right side of face and head. After he got back into bed, he went right to sleep. His blood pressure was elevated to what it normally had been reading, but the nurse said it depended on where his arm was at the time. At around 5 p.m., his nurse told him to try and stay awake, and that if he stayed up until 6 p.m., she would take his Foley catheter out. He had such a hard time staying awake We kept reminding him to look at the clock and then suddenly he said he couldnt really see the clock. We called his nurse, who came in and talked to him and tried to check his vision, and meanwhile took out his Foley and called the charge nurse, Steve. They called the Doctor, I am not sure which one, who first ordered a CT scan then changed his mind back and forth and finally decided he would have an MRI. Matthew remained calm during all of this, not once complaining or asking why he couldnt see. Between 6:30 and 7:00, his vision was nearly gone. He went for an MRI and then came back to the room. The nurse started Decadron and Mannitol but apparently these had no effect because his vision was still gone. At approx 11 p.m., they said someone spoke to Dr. Spetzler and he recommended to reopen his head and try to save his vision. At approx 12:30, Matthew became confused and disoriented and they did a CT scan at 115 a.m. prior to surgery to check for any new changes. He then was sent for surgery. Hereturned from surgery at approx 5:15 a.m. and told us that they inserted a drain into his ventricles to try to drain out any blood, but that he had a clot from the surgery and they were not able to remove all of it. They switched his room in the ICU to across the hall and moved all of our stuff in there. He woke up at approx 8:15 a.m. and could move his arms and legs and nod and answer correctly. He couldnt talk, because he still had the vent in. We were glad he could still understand us, and he wrote down answers on a piece of paper, but still had no vision. They tried to take him off the vent at 9 a.m., but unless we kept reminding him to breathe, he would stop, so they couldnt take it out yet. They tried again to remove it at about 11, but it still didnt work. At approx 1 p.m., Dr. Spetzler came into the room to talk to us for approx 3 minutes. This would be the last time he spoke with us. He said the clot expanded and it was on his optic nerves, and they couldnt do anything else and that the next two days would be critical in watching for stroke etc. He didnt want him on a blood thinner, because he wanted the clot to fade away. After he left, the charge nurse Steven said his vital signs were good, and that the drain in his head actually measured his intracranial pressure and that it was at a good level. Matthew was still arousable and very pleasant and never complained thru any of this!!
We went down to the cafeteria because we hadnt eaten since the day before at 2 p.m. When we returned at 2:50, we saw nurses and residents running towards his room. When we went to his room, they said his drain had started spurting blood and were sending him for an emergency CT scan. They took him for a CT and when he returned, they asked our consent to put in another EVT drain into his head. His curtain was open and my husband saw them drilling into his head. It was a nightmare. At 4:30, they took him for an emergency Angiogram to try to remove clots and that they might put him on Heparin. At 5:30, Dr. Hebb came in and told us that the vein that Dr. Spetzler had left in there had set off a series of chain reactions with clots forming. He also said that because of the surgery, the blood flow was too high and that now a different vein in his head burst. He then said he would be in a drug induced coma. Dr. McDougal, the one who did the angiogram came and told us that the pressure is too high in his head and he could have a new bleeding event. At this point, Matthew was not even responding to us. When we saw him, it was so traumatic because the Nurse was packing him in ICE! When I asked what she was doing, she said she was trying to save brain cells. At this point, we asked to talk to the Doctor again. It was Dr. Hebb who finally told us that he had a significant hemorrhage in his head, and although he was very nice, it took my husband and I several questions each to get him to tell us the Truth-Our son was totally brain dead and would never wake up, nor be able to breathe on his own or live, even with a ventilator. He had no brain stem activity. He then asked if we would like to donate his organs. Our son, always wanting to help others, had told me that when he got his license, he had wanted to be an organ donor. So, we chose to do that. He could not go into surgery until the next morning, so the nurse moved Matthew over in his bed, so I could hold him all night long. After that, everything was pretty much a blur.
He donated his organs and saved five people, that we know of. I am sorry this is so long, and has a sad ending, but it is our story: One of a beautiful 17 year old who was so smart, funny, athletic, musical, scholarly and just an angel.
Dr. Spetzler never once came in to say sorry about your loss, sorry things went so wrong or anything-he never came back in at all. How disappointing to travel over 2000 miles from NY to Arizona to see the "Best Doctor" in the world who can take care of any size AVM/fistula and promise you he will be just fine, only to realize we have lost our angel and then have to fly home and tell our other 3 children they have lost their eldest brother.
I hope no one else's story is like this one, and I also wish I could do something for people with AVMs. There is not a lot of info out there on them.
I would just say research and get a lot of different opinions before you make a choice, if possible. Matthew's Memorial
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