My AVM Experience

I just want to start by saying that I am extremely excited to have come across this site. I have really enjoyed reading some of the posts, what little chatting I have done, and finding a lot of useful information throughout. I am the only person that I know to have experienced an AVM, although my paternal uncle has had an aneurysm. It is hard having something like that that affects your life so completely, essentially turns it upside down, and not having anyone who can understand that.

My boyfriend, B.J., and I had been dating about five and a half years when I finally talked him into trying to have a child with me. Within a few months, I was pregnant and we were very excited. My pregnancy was extremely mild and uneventful until almost the 5th month in. Prior to that time I had experienced a few mild issues with my vision that I chalked up to pregnancy in general. I had the day scheduled off work, but had gotten up early all the same as I had a WIC appointment. B.J. had to be at work at nearly the same time, so he was up as well getting ready to leave.

I woke up that morning, 12/29/2010, feeling pretty rough. I assumed this was just due to the fact that I was, and had been, extremely tired throughout most of the pregnancy. About 15 minutes in I experienced a particularly nasty coughing fit. After I had stopped coughing, I got a very strange, almost surreal feeling. I coughed one more time, sort of an experimental cough. I "heard" or "felt" a pop in my head. That is when the pain started. It just sort of exploded outward,covering the entire left side of my head. When it did not abate after a moment or two, I laid down on the bed and waited to see if it would stop. It didn't. Rather, it got worse and worse. It was at that point that I yelled for my boyfriend He and my brother, Randal, (who had shown up announced a few minutes before) came back into the bedroom where I was. I don't remember exactly what I told them, other then that my head hurt. My boyfriend was a little aggravated as he was trying to get ready for work, too, but he told me to put my shoes and socks on and someone would take me to the doctors or something. I do not remember exactly what was said or what happened, but I do remember that I had already gotten a brand new pair of socks out that I intended to wear. I knew I had to put them on, but I realized then that I had no idea how to do that. I just looked at the socks, knew they went on my feet, but I had no idea whatsoever as to how to get those socks onto my feet. B.J. and Randal both just realized that something out of the ordinary was going on then, and they had almost identical looks on their face. It really freaked them out. B.J. grabbed a pair of random socks, and I remembered that I had a brand new pair out and ready, but I was not capable of expressing that.

A lot of what happened next I do not remember, or remember in fragments, or was told. Randal had to pick up his wife, Cassie, and my mother, Julie, from the courthouse. B.J. was waiting for his sister, who he was going to ride to work with. They decided to put me in Randal's truck and B.J. would wait for his sister so that he could tell her that he was not going to work. They walked me out to Randal's truck, but I could not get in at first. I kept lifting my foot to climb in, but my depth perception was off and I was having trouble stepping high enough. B.J. tried to help me at that point but I got angry and finally managed myself.

Randal made what was normally a 10-12 minute drive in just under two, and pulled up in front of the courthouse only a moment or two after my mother and sister-in-law walked out. I can remember Randal yelling at my mother to hurry, and apparently his behavior was attracting attention, because I can remember him screaming at people to get back and give me some f****** room. After Mom and Cassie got in the truck, my mom gave Randal instructions to take me to a local dr.'s office only a half mile or so from the courthouse. The Dr.'s office had an emergency department, and at that point my mom apparently assumed that I was having a miscarriage. At that point either my brother or myself told my mom what had happened. My mother told a nurse, and the nurse informed my mother that the office was not equipped to help me and that I would need to go to a hospital. Someone called an ambulance. The ambulance drivers were pretty annoyed that we had called an ambulance because I was "having a headache", but agreed to take me on to St. Mary's Hospital in Scott County, TN (a 30 minute drive) although my mother had asked that they take me to LCRH (a much better facility)as they said I would have to go there because my OBGYN was located in that county. The ambulance then drove the speed limit, sans lights or sirens, to Scott County and wheeled me into the emergency area. I was billed about $400.00 for that, by the way :)

The next 10 hours were spent by my mother trying to convince my OBGYN and the ER doctors to give me a Cat Scan or some other test to try to figure out what was going on. They just continued to pump me full of Morphine and later Dilaudid. My mother got the distinct impression that they thought I was a junkie there for drugs, although I had been in pain severe enough to cause me to come up out of my bed in desperation, nearly screaming. I remember the doctor asking my mother if she wanted to kill her grandbaby. My brother and B.J. arrived at some point, but my brother left after he had it out with a nurse due to what he felt was substandard care on their part. As I said, my memory is pretty jumbled and I only remember bits and pieces. They did some test or other and decided that what they were seeing on my brain was extensive bruising. It was not until this that they began to take me seriously. They asked me repeatedly if I had been in a wreck or been hit in the head some how. They asked me so many times that I almost became convinced that I must have been and just could not remember. Finally, 12 hours after the bleed and 10 hours after I had arrived at St. Mary's Hospital, my OBGYN told me I needed to calm down because the pain was not that bad, that her husband and I would have matching scars (he apparently had had a craniotomy due to a bleed), and that I would be catheterized and flown out to the University of Tennessee. Needless to say I did not return to that OB.

I spent the next 8 days in UT. The first few days I was virtually incoherent, only able to understand what was going on around me intermittently. I was not allowed to get up and the catheter remained in for six days. My mom stayed with me most of the time, only letting B.J. spend the night with me when she was on the verge of breaking down. I had a morphine drip, but for the life of me was not able to comprehend how to use it myself and no one was allowed to use it for me. It was easily the most horrific pain I have ever experienced. The pain came and went every few minutes. I slept in 15 or 20 minute increments, and every time I woke I was in pain so severe that I was unable to move or locate the button that controlled my drip (although my mother usually left it by my hand). Both times I could not do anything but yell help, although it was excruciating to do so, until someone finally heard me. After three or four days I came around enough to know some of what was going on around me, and after six days they moved me out of the "NICU" or the Neural ICU as I believe it was called. I finally learned that my baby was ok, which was a giant relief because I had assumed that the baby had died because of the bleed.

They discharged me after eight days with a referral to Vanderbilt University Hospital. I had already decided that I would not have any form of surgery, but changed my mind after talking to Dr. Robert J. Singer. I was scheduled for a "coiling" procedure in two weeks, a second coiling procedure in another two weeks if necessary, and then the surgery two weeks after that. The first coiling procedure went great although some of the vessels were too small to reach and blood flow to the AVM could not be cut off entirely. I spent one day in patient teaching, and the next two following the procedure in the hospital. That first procedure scared me the most by far. Two weeks later I returned for the surgery, but wisely chose to be sedated this time before being taken in this time. My surgery took about six hours, a little longer then expected, but went off without a hitch.

My situation was apparently quite rare, and although my Dr. had performed AVM removals tons of times, he had only performed it on a pregnant person three times. The first patient was similar to myself and the surgery was completed with no problem. The second patient died, but ultimately from the bleed itself as she was brought in during the hemorrhage and the bleeding could not be stopped. Vanderbilt is a teaching facility, and I was informed that, because my case was so rare, there would more then likely be groups of interns viewing it. One group was actually brought into my room to "view" me following the surgery, which was a little awkward because I had no idea what was going on at first. Overall, though, my experience at Vanderbilt was easily the best hospital experience I have ever had. The doctors and staff were wonderful. I had an entire OB team assigned to me while I was there to monitor the baby while I was under. They were the most helpful and informative of all three hospital staffs I encountered during this ordeal.

Well, this is my story in a huge nutshell. Probably not the most eloquent, but it is a relief to get this off my chest. I have never gotten the chance to tell my story to others who knew what I was talking about or understood what I went through and I have really enjoyed being able to share this. Thanks for that.

Vanderbilt has a wonderful rep. Glad you and your baby are ok!

Vanderbilt is a great facility. I never once regretted my decision to have my situation handled there. Thee staff that worked with me were by far the most professional, involved, and caring that I have ever seen. They never missed a chance to quiz each other, impart new information, and make sure that they were equipped with the most knowledge possible. I was thoroughly impressed. I could not have had a better experience, brain surgery or not.
And Thank You So Much! My Son is the GREATEST BLESSING I have ever experienced. I owe so many doctors and nurses, etc. so much for keeping him safe and getting him to me safely. He is only eight months old and already the rest of my life before him seems so vague and pale. It is impossible to imagine life without him, although I spent 24 years that way :)

What a wonderful ending to your scary experience, I'm so glad that you and your son are doing great! I thought having a AVM was bad enough but actually being pregnant too WOW you are a survivor.

Thank you so much! But to be honest with you, this site has really humbled me and made me VERY appreciative. I have been reading some of these blogs and the things these people have gone through, and are still going through, and I realize now (like I had not before) how lucky I am. I got it really easy compared to some of the people who have come here to share their AVM experience. I can walk, talk, read, and write. My son is healthy and GREAT! These stories have really made me offer up an extra prayer or 10 in thanks!