The Scariest Day of My Life – Being Diagnosed with an AVM

January 4th, 2020 was one of the scariest days of my life. It started off with just a cold. We had a bible study scheduled that morning, and after the study, I started to feel like I was coming down with mastitis. I dosed up on all the things that I could, and then an hour or so later, I started running a fever. Then just a few hours later, I started getting a migraine, which was no big deal, as I had gotten migraines before with mastitis, as well as throughout my growing up years. But this one escalated into something I’ve never experience before. The pain kept getting worse until it was more than I had ever dealt with before. I remember feeling as though I couldn’t be still. My legs and arms were always moving and flailing around. I also became unresponsive, and I remember just saying nonsensical things. I called out for my mom a lot. There was one point that I literally thought I was dying. I just knew this had to be it. But after feeling like I was going to leave this earth, I remember thinking, “No, I have to hang on. I have to stay to take care of my little girl. Whatever it takes, I have to push through this pain.”  My vision was also spotty, and I felt like I only had flashes of seeing what was around me, and even then it was just slices of vision. I never felt like I saw the entire area around me. I remember at one point thinking I heard Stephen talking as though he had been crying, and I knew that something must not be right, but I was in too much pain and not thinking straight to think about it much more. I also was having trouble breathing normally. I was breathing heavily and rapidly. I kept telling my mom and Stephen that I couldn’t breathe. I also knew that I wanted to see Ruth. I remember calling out for her once, and they put her on my chest. It instantly helped me feel a little calmer, but it didn’t last very long.

The next thing I know they were putting my shoes on and helping me sit up. I was unable to walk at this point, and both of my legs were tingly and feeling numb. Stephen and my Dad supported me as they got me into the car. My vision was so weird, that I felt like all the lights from the outside were in the car. I don’t even remember pulling up to the hospital and getting into a wheel chair. Much of my memory is spotty from this evening. I remember being in the car, and then I remember being in a wheelchair and going past a police officer in the ER that stared at me as I went past. One of my glimpses of vision and reality was realizing that almost everyone (or at least those that I could see) in the ER was staring at me. And I was told after that it was because I was being quite vocal and moaning quite loudly. At this point in the evening I wasn’t even holding my head up. Stephen had been supporting my head the entire trip to the ER. They were also having to support me completely in the wheelchair, and at one point I was almost slipping out of it. After just a few minutes of being in the waiting room, I was back in triage and then into a room, and they were hooking me up to everything and running all the tests. I was still very much out of it at this point and didn’t really know what was going on.

The CT that first showed the abnormality. They weren’t sure if the white spots on the right side of this photo were calcification or bleeding at this point.

Several hours went by, but finally around 12 am Sunday morning (January 5th) I remember waking up from a short time of sleep and feeling like I was starting to come back. My head was still hurting, but I knew that I would be able to communicate. My mom was crying, so I asked her what was wrong. She said that they had found something that they were going to have to do some more testing on. I believe this is also when she told me they were going to do an MRI. I remember thinking that I wasn’t ready to know more at this point, so that’s all I asked. I knew there was something she wasn’t telling me, but I was already going back to sleep before I could do anything else. I vaguely remember the MRI, but not a lot, because I was so tired. I remember trying to sleep during the MRI as much as I could.

Once the MRI was back, the doctor met with Stephen and my mom to let them know that there was an abnormality in my brain. There likely wasn’t any cause for concern, as it had been there since birth, but he was recommending that I be transferred to St. Vincent to see a neurosurgeon to do some more testing to rule other possibilities out.

MRI results. Obviously that dark spot should not be there…

 

A little after this, I woke up again around 2 am, I asked Stephen what was wrong and what was going on. He told me that they had found something in my brain and that they were going to check it out. So at 3 am, they loaded me into an ambulance and made our way to the St. Vincent ER rooms, because the ICU rooms were all full. We waited until 11 am Sunday morning before we were moved to an ICU room, but we weren’t there for long. One of the neurologists came in and said that after looking at the MRI, he was suggesting that I be transferred to St. Vincent North. What they found on the MRI and CT scan was an AVM, Arteriovenous Malformation, which is a tangle of veins and arteries that are fused together. Instead of the blood going through the arteries and then capillaries, and then back to the veins, which slows down the flow and force, the blood was going straight from arteries to veins and shunting blood. Basically, it disrupts the process of bringing the oxygen rich blood to the brain and then taking the oxygen depleted blood away. (Here is a website that explains it in more detail) Pregnancy can also be dangerous with an AVM, so we are so thankful that my pregnancy with Ruth had no complications. Over time, the veins could become weak and burst, causing a brain bleed. My AVM is classified as a “medium size”, but it is still 4x4x4 cm in size. It’s location is part of what made it more serious, as it is on the left side of my brain, close to the language and motor skills part of my brain. Because of my young age, they knew they would have to treat it in some way, as each year the risk of it rupturing goes up, and statistically I have longer to live than most patients who are diagnosed with AVM’s.

An interesting note: As many of you may or may not know, I am left-handed. Now that we know I have an AVM on the left side of my brain, the doctors believe this is why I am left-handed. My brain compensated for the lack of space in that part of the brain and therefore, I am left-handed. We also have been told that the AVM likely is what causes my migraines, and why my right hand and sometimes leg go numb during migraines, and why I lose peripheral vision during migraines. Kinda weird, huh?

St. Vincent North was our next step because that is where the neurosurgeon was that would need to do the angiogram, which was scheduled for Monday morning. It was at this point that we were told that this was fairly serious and would most likely need treatment and maybe surgery. So after another 4 hours of waiting on MEMS to arrive, we made another ambulance drive over to St. Vincent North, where I stayed the night. So this would add up to 3 hospitals and 2 ambulance rides in less than 24 hours. (Funny side note: I was semi-conscious during the angiogram, and every time they took a picture of the AVM and the flow through it, I was told, “don’t move, don’t breathe”. I don’t remember a time that he told me that I could start breathing again. He most likely did, I just don’t remember it. So I just remember in my foggy, drugged state, that I wasn’t ever sure if I could start breathing yet. I would take a few shallow breaths, and then he would tell me to be still and not move again. Haha)

Never in my life have I been hooked up to so many machines and had so many wires attached to my body.

After the angiogram Monday morning (January 6th), the neurosurgeon that was taking care of me came in and shared a little more information about my AVM, and what to expect for the next steps. He was going to be looking over the results second by second to get an idea about treatment plans. From his first impression, he was thinking that since the AVM was fairly decent in size and in such a vital area of the brain, we would most likely just try to shut off some of the veins that lead up to it by “gluing” up some of the areas, and then possibly using radiation to shrink other ones. His concern was that they may have to stop the process of shrinking the AVM if they came across any of the veins that would be too small and too close to a major part of the brain to safely treat them. My follow-up appointment was schedule for 4 weeks out.

My AVM, courtesy of the angiogram

So on January 7th, I was finally was released and able to go home! The hardest part of all of this would probably be having to be away from Ruth for the longest time since she’s been born. My parents did bring her to see me while I was waiting in the ER room at St. Vincent, but when they took me up to the ICU room, we weren’t thinking about her not being able to be in the ICU part of the hospital. So I didn’t even get to tell her goodbye. Since I was in a Step Down room at St. Vincent North, we figured she wouldn’t be able to visit me there, either. So my parents kept her at their house until I was released. I did FaceTime her Sunday night, but Ruth couldn’t really figure out that it was actually me on the screen. But once I walked in the door of my parent’s home, Ruth was so excited to see me and couldn’t stop hugging me for a few minutes. It did my heart so much good. 🙂

At our follow-up appointment on February 3rd, after waiting 4 hours, we learned that the hospital had scheduled me with the wrong doctor. There were two doctors by the same last name, and both had seen me in the hospital, but the older doctor was the one I was supposed to see. The doctor I saw this day did tell me that the treatment plan had most likely changed. He believed that the senior doctor now recommended that the entire AVM be removed through an all-day brain surgery. His concern was that if we just closed off some of veins leading to the AVM, the flow would be changed, but not reduced, therefore increasing the risk of hemorrhage. Radiation was also no longer an option because of the risk to the rest of my brain and the hesitancy of radiating a young person’s brain. We were thankful that the doctors now seemed to have a recommended course of action, instead of leaving it up to us to decide, as it had seemed to be in the hospital.

When we went back on Friday, February 7th, and saw the correct doctor, he actually ended up telling us something different. Once again, it was my prerogative to choose whether to treat my AVM or not. He would be unable to tell me what to do until I chose one way or another. He told us that he has seen patients with AVM’s very similar to mine live without any complications. But we also needed to think about the risk of leaving it. We were also told that if we chose to treat this, the risk of having weakness and/or paralysis on my right side was higher than most patients, due to the location of my AVM. The good news was that the brain immediately surrounding the AVM was basically dead, so it acted as a cushion and buffer around the AVM, making surgery a little safer. If we chose to treat it, his recommendation would be to shrink the AVM over time until he was comfortable with it’s size to remove it through brain surgery. The steps to shrink the AVM would consist of going in just like an angiogram and “gluing” some of the feeders through embolization, one at a time, and slowing down the flow. As long as the glue didn’t plug up one of the out-flowing veins, this would slowly shrink the AVM. After gluing one or more feeders, we would wait a few weeks to make sure everything was ok, and then go in and do another one. Before going any further, the doctor scheduled me for an EEG to make sure that I did not experience any seizures during the episode that started this entire journey, or if previous migraines had done any seizure like damage. If it showed that I had experienced seizures, there would be more of a rush in needing to treat.

As of now, we are waiting to get the call to schedule the EEG, which we hope to get this week. We also have an appointment with a endovascular surgeon at UAMS on March 3rd to get a second opinion on treatment for my AVM. After these two appointments, we are hoping to have a clearer path open to us. We have been earnestly praying to the Lord for guidance and wisdom on how to proceed (and we know many other people have been as well). We have been so blessed with the amount of people who have been asking for ways to help and for those who have supplied help without even being asked. And to all of my clients, thank you for your patience as we take a small break to get this taken care of!

 

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Ruth’s Birth Story 
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  • Missie Corder said:

    Caitlin you are truly a demonstration of giving glory to God you are handling this all with great strength and wisdom. I will continue to keep you all in my prayers. I am sorry so very sorry. You my young friend are amazing.
    Miss Missie

    • photographybyc said:

      Thank you so much, Mrs. Missie! I will be the first to admit this hasn't been easy, but it's such a blessing to know that God is in control!

  • Kristy Jamerson said:

    Caitlin, I have just become aware of your personal health story. I am praying for you and your family. I know God will give you peace on how to proceed.
    Kristy

    • photographybyc said:

      And i am just now seeing your comment! Thank you so much, we really appreciate it :) God has definitely been with us the entire time :)

  • Duston Morris said:

    Caitlin..Thank you for sharing your story. We are all so very sorry to hear this! Everyone here at UCA is praying for you and your family. We are with you in prayer and agreement that you will have a healthy recovery.

    • photographybyc said:

      And i am just now seeing your comment! Thank you so much, we really appreciate it :) God has definitely been with us the entire time :)

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