My Story

When I was born, there were no signs of a vascular anomaly. I guess the first real indication of a problem was when my mom noticed blood leaking out the sides of my mouth while I was taking a nap as a toddler. The doctor assured her that it was simply a nose bleed that drained back down and that there was nothing to worry about. Of course this was logical and no cause for concern.

When I was five, I started bleeding from my mouth while brushing my teeth. My parents rushed me to the hospital. By the time I got there, the bleeding had stopped and the doctors all thought my parents were exaggerating about the amount of blood flow. My mom insisted that she was not making it up and that the amount of blood loss meant something was seriously wrong. To pacify her, they had some specialists come through to look at me. While poking around, they caused another bleeding episode and admitted me to the hospital for three days. With no more episodes, and no diagnosis I was simply released from the hospital. A regular trip to the dentist soon after was also met with bleeding, which he explained as an artery growing faster than it should and that my body would eventually catch up with the growth. He cauterized the area to stop the bleeding.

Another trip to the dentist office in 1984 for additional cauterization, was when we found out something was seriously wrong. My poor dentist was met with an uncontrollable flow of blood that he was unable to stop. He packed me up into his car, white leather seats mind you, and had his assistant drive me up the road to Stanford Hospital and the beginning of my AVM story.

This would be the first of many trips to Stanford to meet with Dr. Willard Fee. At first, they didn’t know what was wrong or why I was experiencing such a high level of bleeding. Dr. Fee was able to stop the bleeding and scheduled me for an exploratory surgery to find out what was causing the problem. During this surgery the bleeding started up again, and I lost nearly ¾ of my blood supply while on the table before they realized what they were dealing with. I had a high flow Arteriovenous Malformation.

Dr. Fee explained what the AVM was and that they really didn’t know what the best treatment was for these conditions. This was a relatively new condition and that even 10 years prior would have been met with no treatment options. He was hesitant to perform surgery to remove the mass as there was a high likelihood that it would grow back. They did however know that they could embolize the large vessels thereby decreasing the blood flow and minimizing chance of bleeding episodes. Long term, Dr. Fee explained that the mass would continue to grow and would most likely be adversely affected by hormonal changes such as puberty, and stress. Another warning was that pregnancy could dramatically affect the growth of the AVM and was not recommended. This would be one thing that would be difficult for me to accept as an adult.

I continued to see Dr. Fee throughout my childhood for check ups and when I experienced episodes of bleeding. As an ENT, Dr. Fee never actually performed the embolizations but was always my first contact and helped to coordinate my care as well as document my progression. The outlook was always “leave well enough alone” and that a drastic surgery to remove the mass was not a good idea. It was explained that the surgery would be quite destructive and involve replacing both bone and muscle in my face with grafts from other parts of my body. Not only that, but it would create scar tissue which would make further treatment of the AVM more complicated and difficult. Doing the surgery was not a guaranteed cure and the possibility of regrowth a very real consideration. The concern was that if it grew back it would be much harder to treat and maintain.

The fear of the AVM and what could happen was always present. And of course the fear itself was always bleeding to death. I’ve never been a good sleeper because I have always HAD to be aware enough to wake up in case I bled while asleep. The majority of my bleeding episodes occurred while sleeping. The taste of the blood, swallowing it, and spitting it out; these were all things that I would instantly recognize and would alert me to wake up and take care of the bleeding. The first instinct is to panic because it just isn’t normal to wake up covered in blood and spitting it out all over yourself. It’s just gross and it feels like I am losing a million gallons of blood a second. The flow is very high and I have described it most often as “turning on your faucet full force.” Whether arterial or venous bleeding, it is high flow and very scary to me now, not to mention as a child! However, once I was able to put pressure on the bleed and hold it for 5-10 minutes, I have always been successful in stopping the flow. Realistically the chance of me bleeding to death is very low, but it remains the irrational fear that I can’t shake.

Instead of surgical removal, we instead opted for many embolizations at Stanford and UCSF performed by talented Neuroradiologists like Dr. Alex Norbash, and Dr. Chris Dowd. These were almost always performed as a reaction to episodes of bleeding. I can’t recall each trip to the hospital but there were many. I remember being about 8 and in the hospital during the Christmas holiday. I was very upset because the embolization caused swelling under my chin and this was the first time I was really aware that I “looked” different. But I did get a pretty new purple nightgown to wear and some toys from the hospital!

As I grew, so did the AVM. It became more and more noticeable and I became more and more self conscious of it. What started out as a little puffy around the jaw line, morphed into what appeared like removal of wisdom teeth, then continued to grow and move across my chin, up my cheek, and became more discolored and uneven. Don’t get me wrong, I think I had a relatively positive and stable childhood considering this, and the changes happened over the course of twenty years. I have a wonderful family and great friends that helped me to feel as normal as possible. But the psychological aspect of dealing with an AVM is complex and difficult to even try to explain.

I remember being embarrassed about having this and dealing with the bleeding episodes. As a child I didn’t have the ability to really understand what this was and certainly didn’t have the cognitive awareness to know how to internalize and “deal” with it the right way. So it was easiest to pretend it didn’t exist or to try to take care of it on my own without burdening others. This included very unwise choices during bleeding episodes, like hiding under a table at the roller rink when I fell, as well as trying to “sneak” out of a school singing performance to go to the bathroom and take care of the bleeding on my own. Or that one time that I spent the night at a girlfriend’s house only to wake up with a pool of blood on the pillow which I promptly turned over to hide the evidence and got cleaned up and dressed quickly like I was just an early riser. (Sorry Julie!) Luckily there were always grown ups looking out for me and getting my mom when she was needed.

Along with this, I was also met with limitations that I didn’t like. I was kicked out of the Brownies because their insurance wouldn’t allow me to stay in! Also, I was banned from riding the bumper cars at the Boardwalk and the “Edge” (free fall ride) at Great America. Such unthinkable constraints to put on a child! While everyone tried to provide me a normal childhood, these limitations and paranoia frequently seemed to creep into everyday life.

As I entered High School, I was lucky enough to be on a 3 year “break” from dealing with my AVM. I hadn’t had any bleeds or embolizations during that time and was able to make it the four years of HS with the same luck. So the impact of my AVM was only in the way that I looked and how that affected me socially and psychologically.

Like I stated before, I had a great support team of family and friends. Most of the kids I was in school with knew me and were used to the way that I looked. In many ways, this familiarity made my day to day routine much more “normal” than it could have been. I’m one of those crazy people who actually have fond memories of high school. I was popular, on the cheerleading squad, in honors classes, and part of the leadership team. All of the typical “All American” stereotypes of high school were part of my experience. But I felt different and I was very concerned with the way that I looked. As I suppose most high school girls are anyways! I already knew how to wear my hair to help hide the growing mass, how to pose for pictures to minimize it, and also that people were staring. My girlfriends were all beautiful and I felt inadequate although I at least was strong enough to know that looks aren’t everything. So I tried not to dwell, and I definitely enjoyed life as much as I could.

But I was different and there were always those times to remind me that there was something “wrong” with me. Strangers stared at me at the mall. Kids would always ask what was in my mouth to make it puffy like that. People would ask if I got my wisdom teeth pulled or got into a fight. (Ya, cause I look like the kind of girl who goes around getting in fights…please!!!) Of course my friends were always 100% on my side and ready to defend me and give people dirty looks for being so inappropriate. I did feel loved even if offended by strangers.

Sometimes I could take the scrutiny and the questions at face value as people being just curious. Other times I was deeply wounded by their lack of regard for my feelings. One time I was working at the mall at a clothing store, my manager asked me to take the previous nights deposit to the bank. No big deal, I had done this many times before. I was all dressed up in my cute work clothes and having a good day. The teller at the bank was young and cute and I smiled at him and the kid at the next window. Half way through the transaction he asked what was “wrong” with my face. My good mood instantly vanished as I simply smiled and replied “nothing, that’s just the way that I am.” I made it back to work only to flee to the break room and cry in self pity. My embarrassment only increased later that afternoon when he showed up with a huge vase of flowers to deliver as an apology. Turns out his mom was the bank manager and quite unhappy with him and fearful of losing our account once my manager called with the story of the crying teenage employee! I know his intention was not to reduce me to tears, but it did all the same.

I graduated from high school as an otherwise healthy and happy kid with acceptance letters from all of the colleges that I applied to. I chose to attend UC Santa Cruz and used my AVM as a medical excuse to ensure that two of my closest girlfriends ended up as my roommates! (Gotta exploit it when you can!) That summer was carefree while we spent our last few months with old friends and I met Joshua, who would eventually become my husband.

Within a year of starting college, the AVM became active again. I began experiencing episodes of bleeding and had to face the fact that I could no longer just pretend that it didn’t exist. I had to go back in for embolizations and this time the hospital stays and the recovery meant that I had to take semesters off from school. I also ended up needing to have some wisdom teeth removed which turned into a combo surgery of embolization and teeth removal. That was two days of treatment back to back and four days spent in the hospital for recovery. That was probably the worst one so far. And soon after, a huge chunk of my hair fell out due to the "shock" and trauma of the surgery! Being a grown up wasn’t so much fun anymore. But I did what I needed and moved on.

I continued to live life, went to school, got my first real job, got married, and dealt with the AVM only as a reaction to bleeding. I didn’t want it to be a focal point in my life. It was just a nuisance that existed which I tried to ignore. Then the pain started. I was seriously unprepared for this new development. The only pain I had experienced before was from the embolizations and recovery. But now I was having a huge amount of pain in my lip and lower jaw. It would attack out of nowhere and start throbbing with intense, sharp pain. I was constantly holding my face and trying to pinch the area to relieve the pain. I was having trouble sleeping and was slowly getting worn out. I was very concerned about this and was hopeful that it was just a phase. However a new and even worst symptom began. I started to notice that the tissue inside my lip was “breaking down” and forming a cut for no apparent reason. And that hurt too! I was miserable.

Turns out, the AVM was more active than I was aware. Sure it had been growing in size, but I just expected that. What I didn’t know was that the AVM was now “stealing” blood from the regular tissue in my mouth and the lack of good blood flow was what was causing the tissue to break down. I realized that my ignorance of this condition was no longer acceptable and that I could not continue to just ignore the fact that I had a serious medical condition. I began to educate myself through the internet and contacted Dr. Fee to schedule an appointment. This was the first time as an adult that I took control of my situation and really tried to understand the diagnosis and what it meant for me long term. But all of that preparation and intent kinda fell to the wayside. Dr. Fee told me the same thing he always had; “Leave well enough alone.” The AVM was very active; it had “invaded” all the tissue in my face including the muscle and the bone. A surgery at this point would be devastating and he absolutely didn’t recommend it. Continuing to do embolizations was the best bet. And of course I would deal with this the rest of my life and eventually there would be an extra strain on my heart because of the extra blood flow. He just kept painting a more and more depressing picture of my future. And I was still so confused as to what I could do. What options did I have? I just had to learn to deal with this and make the best life style choices to stay healthy.

I arranged to have another embolization with Dr. Dowd. He felt that treating the AVM near my lip could help to restore the correct blood flow and heal the wound in my lip. So we did this, and it worked…temporarily. Within two years I was experiencing the same symptoms. So back to Dr. Dowd and back for another embolization to clear up the cut that was on top of my lip this time. I was 28 and just figured that this was what I was going to have to deal with every few years. But then Dr. Dowd gave me the worst news. He basically explained that we had done so many embolizations over the years that he was hardly making a dent any more. The pathways were all over the place and each time he went in was less and less effective. The benefit to risk ratio was rapidly decreasing and he didn’t feel like we would make much more progress continuing this way. Of course if I was to have ugly bleeding episodes, he would absolutely embolize just as we always had. But my assumption that we would just continue every couple of years for pain or tissue break down was now unrealistic. I felt hopeless and very depressed. I basically had to bank on not having the pain and tissue break down return…and that wasn’t likely.

My lip never really healed up after that last embolization with Dr. Dowd. It got better, but never completely healed. It just seemed to stay on the verge of breakdown with the skin always being flaky and unstable. Sometimes it would seem healed, others it was obviously cut open. I tried to just be okay with the situation and be happy that I wasn’t having as much pain and there was no bleeding. Unfortunately it kept getting worse again. The pain came back with a vengeance and I was again slowly burning myself out. I wasn’t sleeping well and my quality of life started to suffer. I really tried to be a trooper and just deal with it, but some days were really a struggle to maintain the façade.

In the summer of 2007, a close family friend, Dr. Jon, was reminded of my condition and wanted to help. I explained to him as much as I could about the condition, about the doctors I had seen, and about the news I had been given. He was convinced that we needed to figure out what else could be done as my quality of life was only getting worse as I ignored it. I mentioned two doctors that I had “heard” about in my research online with the Vascular Anomaly community, Dr. Yakes and Dr. Waner. I had intended at some point to try to contact one or both of them.

After checking them out, Dr. Jon took it upon himself to call and speak with Dr. Yakes over the phone. He felt very strongly that this was the correct route for me and that we needed to jump in head first. He helped me to better educate myself about the AVM and the treatments so that I felt capable of making informed decisions. We spent a significant amount of time understanding what my previous treatments had done, and what they hadn’t. Of course they hadn’t done much except “band-aid” the problem, and I now understand that was always the intention. While they temporarily “fixed it,” the treatments themselves were never done in an effort to proactively treat the AVM, but instead they were always a reaction to bleeding and performed in an effort to stop that from continuing. I had a face full of glue, particles, and some coils that never addressed the root cause problem. And with each treatment, the pathways were becoming more complex to navigate and harder to treat. I understand why my doctors didn’t feel that they were making much progress.

In contrast, Dr. Yakes was offering a “cure” for this AVM. His treatments use alcohol which basically scars the tissue at a cellular level instead of just blocking the vessels like I had previously. This single change makes all the difference. Of course the other part is that we would be actively attacking the AVM and treatments would be frequent instead of only as a reaction to bleeding. I was still skeptical about the alcohol treatment, the aggressive approach, and the fact that nobody else really “did” this treatment on a regular basis. Also, I felt such a strong connection and loyalty to my doctors that I was not inclined to follow a course of thinking that would color them or their decisions in any bad light. I know they did a great job in my treatment and the last thing I wanted to do was come across as ungrateful or unhappy with what they had given me. So I sent Dr. Dowd an email asking for his advice and his help in preparing for my upcoming consultation with Dr. Yakes. I stressed out about what he may say in response, until I received his reply. And to my surprise, he was thrilled that I had decided to look into the treatment and wished the best for me. He went as far as to say that Dr. Yakes has an “expertise” and a different perspective that may prove positive. He even offered to do a referral if I needed it for insurance. That sealed the deal for me and made me confident in my decision to make the trip to Denver and hope for a better future.

So that is where this chapter of my story ends. I decided to jump in and make the commitment to treatment with Dr. Yakes. I’m hopeful that this will be the cure that I want, that I can deal with the complications, side effects, or whatever else is involved on my new journey. We are looking forward to a bright future, AVM free!

Read about my Denver Trips for the continuation of this story, and check out my first blog post to see what happened next and of course to see how I’m doing and feeling now!