Andrea's story
In my opinion one of the most valuable things that makes having an AVM “easier” is not feeling alone. I could not have gotten through half of what I have without my family and friends’ support, love, friendship, caring, or humor. It is amazing how someone can get to know you so well that they know exactly what to do, and sometimes more importantly, what not to do. When to talk about it, and when to leave it alone. And when to be there for you as you cry so much you can’t breathe. Their support builds my strength when I am too weak to build it myself.
However, my “AVM Sisters” as Shalon so sweetly called us, know exactly what I am feeling, physically and emotionally. We don’t have to be in the same city, the same country even, or have ever met to be confidants. They are an email away for me and believe me, lately, I have taken full advantage of that. I remember what it was like when I was first diagnosed with this, back when I was 15 years old, the internet wasn’t the means of communication it is now, and boy was this condition very lonely. And it is no disrespect to the people around me, they are my foundation, but this connection I share with these two girls is special. It is a bond that cannot be broken.
I mostly get upset when I feel like I have no control of the AVM. I hate to be controlled (ask my mother). So imagine how much it sucks when it’s your own body that is controlling you. Several weekends ago I started to bleed a lot again and I ate Advil like they were M&Ms because of the pain (which was unusual for me), all while being at a function where only one person knew of my condition. It is difficult feeling helpless, not knowing when the next bleed will happen, who will see, how bad will it be. Having just one person there that you trust completely and that knows my “secret” is very comforting. After the event I ended up sobbing on that friend’s shoulder letting myself feel the fear I felt. Shalon gave me the advice just two days prior to let myself feel what I needed to so I can move on… and boy did I ever! She is right; for the most part I think I’ve handled having the AVM pretty well, but the only way I can do that is to “surrender” to the AVM once in a while. You have to. The important thing is to have someone you trust there to pick you up and help you build that strength to take the control back.
I cannot change what hand I was dealt, nor do I want to. I just want a fair chance to fight it. That is mostly how I feel about it all. I am who I am because of this. It makes me less tolerant to meaningless B.S. in life, but it also makes me so much more appreciative for the simple things in life. It amazes me sometimes how some people can be so unhappy about the dumbest meaningless things and take it out on other people. But it amazes me more the amount of really good people out there. After emailing with Stephanie for several months, we met when I flew down to Colorado to meet Dr. Yakes. Her and her family could not have been more helpful or supportive. In my opinion life is about building who you are, and it’s your experiences in life and the people that you meet along the way, that build who you are. My family and friends are so important to me. And now with meeting Stephanie and Shalon (Shalon and I have yet to meet in person) I feel like I have started a new chapter in my life. Where I become a stronger person; and where I begin my journey in understanding my AVM as much as I can to be able to fight it. I honestly feel honored to have these wonderful people in my life. And I am proud of the person I am becoming every day because of what I take from them and from my experiences.
So here’s my story. It gets a little negative, but life is a roller coaster, can’t always be on top to enjoy the view, you would never appreciate it if you were always there.
August 5th 2008. It’s 4:23 am on a Tuesday morning after a long weekend. My alarm is set for 6:20am. It is going to be a long day. I have been awake since 3:00am. I woke up bleeding and with another headache. This seems to be the trend the last few weeks. But today after taking my M&M I am still wide awake (actually I’ve moved on to the extra strength Advil which are more like chocolate covered peanut M&Ms). I went into the kitchen and got a snack: juice, a chocolate chip cookie and a banana and I pulled out the laptop. I have never had a snack in the middle of the night, or actually got up to do something. But why waste another hour tossing and turning… might as well try to finally write this.
I was diagnosed at Toronto’s Sick Kids hospital when I was about 15 years old. I still remember the visits to that hospital. If fact, I ended up having to park there for my last appointment with my oral surgeon a couple of weeks ago and I got this rush of (not good) emotions running through me. I couldn’t get out of that hospital fast enough. My initial surgeons were Dr. Phillips, Dr. Armstrong and the one I still have to this day and whom I trust whole heartedly, Dr. George Sandor. He is my oral surgeon. My AVM is located in my lower left jaw. It does also involve the cheek tissue and under the tongue. It has become more “active” through many embolizations (and I have no idea how many I have had – about ten I think) because AVMs like to “grow” or fine new feeders when you block old feeders. But I am fortunate that my AVM cannot be seen. My left cheek is more swollen now and the veins are a bit more noticeable, but not knowing what to look for, one would not know there was anything wrong. And some people don’t understand there is something wrong with me, because they can’t see it.
I stayed at Sick Kids until I was basically kicked out for being too old. I am lucky that Dr. Sandor remains my oral surgeon. He’s at more than one hospital in Toronto, in fact, half the year he works in Europe. A very busy man, but never more than an email or phone call away. Now I see him and my new dentist at Toronto’s Mount Sinai Hospital.
I mostly have received glue embolizations to control bleeding. If I found I started to bleed a lot for a continuous time, I would have an embolization. That is what I was taught; just band-aid the problem (sorry… negativity begins). My longest time in the hospital and longest recovery time was first year university in 1998. I ended up dropping a class because I was so behind being away for about a month. I remember being so disappointed, I was doing so well in it too, and it was almost half way through the year and I kicked ass in the mid term. It was my Architectural History class with Professor Richardson (His daughter being Sara Richardson – the designer on TV). He had to sign a permission form letting me drop the class so late in the year with no penalty; I took his class again the following year. Anyway, I had to have surgery because my wisdom teeth were starting to come in and my oral surgeon and I were worried of how the AVM would be affected. In November I had an embolization performed by Dr. terBrugge (my Interventional Neuroradiologist) and his team and the next day Dr. Sandor remove my wisdom teeth along with three teeth in the back that were very loose and where the spot of all the bleeds. I lost a lot of blood during the removal of my teeth, but didn’t need a blood transfusion. A week later I was back in the emergency room from a bleed that woke me up in the middle of the night. The scariest bleed ever. Imagine the size of the concavity of having four teeth pulled a week earlier and the amount of blood coming out. I stuck my index finger in there and did not remove it even for the emerge nurse. I was sent home that day and that night I was back for an emergency embolization, only this time they could not stop the bleeding with a conventional embolization. Dr. Sandor ended up doing a direct injection into the bleeding area. I did not learn until a while later that before he did this he needed to go and ask my parents’ permission as this was a very risky procedure. Luckily it worked. I went back to “maintenance” glue embolizations after that. However, this last year has been different. Two embolizations in less than six months are not “normal” for me. I had an emergency embolization in November. Aside from the surgery I had in first year university, I have never had to have emergency surgery before, but I was experiencing a lot of bleeding and I was getting scared. I asked that they use only particles and not glue since at this point I was perusing seeking treatment in the states with Dr. Wayne Yakes. However, it didn’t feel like the procedure did “enough” to settle the AVM.
So in February I had no choice but to let my neuroradiologist embolize with glue since the particles didn’t really do much. Very, very reluctantly and wanting to turn around and walk out of that operating room, I went in for an emergency embolization because the bleeding was out of control. A “squirting” bleed of bright red blood is not good. He ended up filling a huge void in my lower jaw with glue. The AVM basically hollowed out part of my jaw as it took up residence. He was very happy with what they had done; I for the first time after waking up from a surgery was not. I have never been more upset about what just happened to my body while I was asleep.
Two reasons why I was upset, one being:
This is a long story that spans about two years, so I am going to try to keep it short. I have always wanted my doctors to do a surgical resection of the AVM. Dr. terBrugge, my neuroradiologist has always been all for it, Dr. Sandor has asked me not to do it and Dr. Neligan the plastic surgeon that would be on the team said no without hesitation. Several years later, in 2006 I got the same response. Only this time Dr. Neligan spent more time explaining to me that it would not be the best course of treatment and I went from being mad at him from saying no the first time to appreciating his response. When he said to me they would have to remove my left facial nerve and that after the very risky procedure, the AVM could come back, I changed my mind about the surgery. I was prepared for the scars and the recovery but I was not prepared for loosing a facial nerve, my cheek tissue and still having the risk of it coming back after a very difficult, risky surgery that required almost a year of my life for recovery and plastic surgery. That is when my sister started searching the web after she and her husband told me of a story about a patient that ended up having to go to the states for treatment that was not available in Canada. This thought of not having the world’s best care had never crossed my mind. How naïve was I? That is when she found the website where Stephanie has her story posted and we found the name Dr. Wayne Yakes. Reading that he has actually cured people of AVMs, I jumped at the chance. Since applying for out of country health insurance funding I have received about three denials from OHIP. Dr. Sandor ended up being the doctor that applied for my funding (it has to be a doctor that fills out the paperwork). I ended up appealing OHIP’s decision with the Health Services and Appeal Review Board in Toronto this spring. I had a great medical witness who was trained in Ontario, practiced in Ontario, but now practices in the United States. He started using ethanol alcohol as an embolic agent very early in his career and had performed some of these procedures on high flow AVMs in Ontario. This is the same agent Dr. Wayne Yakes uses, and the treatment I am seeking. I don’t want to keep filling my face with glue and let the AVM expand into healthy tissue, I want to start burning away the bad stuff. Having research as much information as there is out there, I truly believe this is the best course of proactive treatment for me, or for any AVMs. It destroys the AVM. YAY! The board felt that even though my medical witness clearly has more experience embolizing with both agents, and has a clear understanding of their pros and cons, because he no longer practices in Ontario, they had to hold Dr. terBrugge’s opinion more highly. Dr. terBrugge’s opinion is that embolizing with ethanol alcohol is not a generally accepted procedure for high flow AVMs in Ontario; therefore OHIP does not fund it. Conflict of interest? My practicing surgeon spoke against me at my appeal.
For over 10 years I have been told that I am being treated by the best neuroradiologist in Ontario. I have never once asked for a second opinion. I have always believed I was getting the best care possible. And I probably am, in Ontario. But am I wrong to wonder if maybe Ontario does not have the best form of treatment for me? Or the best form of treatment for AVMs? I believe I have found a treatment that can significantly improve my condition, something that has not been achieved in 14 years of being treated in Ontario. The problem that I face is that the Interventional Neuroradiologist that can proactively treat me practices in the United States.
The second reason:
The other reason I was so upset is because I now feel more educated about AVMs through my own research. I’m not going along blindly anymore. Being able to compare my experience with the people I have found that have AVMs similar to mine is helpful in understanding my AVM. The literature and studies available mostly focus on brain or spinal AVMs. I am more aware of the future risks involved with the procedures I am receiving. It is acknowledged by the professionals that because of all the variables involved it is impossible to collect data for proper research of AVMs. Also, what makes me angry and frustrated is that it is not recognized that it takes a group of different medical experts to deal with some AVMs since they involve different parts of the body. My AVM is mandibular, therefore, my primary doctor is my oral surgeon, I started with him before I met my neuroradiologist, and when I go for check-ups, or I have a problem, I see him, not my neuroradiologist. My neuroradiologist even tells me to go see the oral surgeon before I go see him. It really surprised me when my oral surgeon, whom I believe has done a lot for my betterment, was described as my “dentist” at my appeal hearing and the board decided that his opinion didn’t hold any weight. It just baffles my mind that with AVMs being so difficult, that some obvious facts are overlooked. It is scary actually.
August 24 2008. A lot has happened since I last wrote. By that entry however, some of it had already started, I just never got around to writing it. I ended up in the Niagara Falls emerge on a Sunday afternoon, July 27th. I had emailed with my oral surgeon to tell him of my symptoms and that I thought I may have an infection in my jaw. He agreed and told me to go to emerge to have them do a blood CBC and check my temperature. So I ended up spending 5 hours at the emergency that Sunday only later to find out from my family physician I was prescribed an antibiotic for a bladder infection. Obviously, neither the doctor nor the nurse listened to me. I understand that medical professionals cannot know about every condition out there, but listen to the patient please, especially since I brought in an email from my oral surgeon. The triage nurse wanted to rule out a bladder infection and I told her I have had a bladder infection and it wasn’t that. My symptoms were mostly localized in my jaw, not signs of a bladder infection. I know she is an educated registered nurse, but she clearly never heard of AVMs (she said she didn’t) and I have lived with it for 15 years, I know my body and I know my AVM. It was a bit irritating because I don’t like antibiotics in the first place; they kill good bacteria too. I ended up being on three different antibiotics for four weeks (another rant, sorry).
I ended up emailing my oral surgeon my blood CBC results and he informed me they were negative (so why I was prescribed an antibiotic for an infection that wasn’t there I don’t know), but he said that didn’t mean that I wasn’t still suffering from a chronic infection localized in the jaw. If the infection is localized in an area and not actually getting in the blood stream, it would not appear in any blood tests. The passing fevers I would experience were the infection getting into the blood stream. August 11th, two weeks after the first antibiotic did not work and my symptoms got worse I saw my family doctor. She gave me a prescription for an antibiotic that is meant to fight infections in the jaw and tissue area. She too didn’t understand why I was given the other antibiotic. I saw her a week later when I was feeling a bit better, but when I told her one of my “fevers” was 40C she ordered a blood culture to see if they could find something more specific. I found out last Thursday that it came back negative, but showed that my hemoglobin was low, which was not surprising with all the blood I have been losing.
I went to work Monday and Tuesday, and by Wednesday the pain was so bad I was home after lunch. You know how they ask at the hospital for patients to scale their pain? From one to ten, then being the worst, well it was 11. Thursday morning my parents took me to Toronto. Dr. Sandor was out of the country, but I knew I could go see his residents at Mount Sinai. I have to say, he is the trustworthiest doctor I have. When I am visiting family in Europe I am comfortable knowing I can reach him. No matter where I am or where he is, there is absolutely no problem with communication, and that is a great comfort to me. He is a phone call or an email away. Anyway, he has always told me if I don’t feel well or I feel my symptoms are getting worse that I should go see his team immediately. And so I did. No appointment. I walked into that full clinic and I had no problem getting in to see his team. They had agreed that it was in infection by doing an examination and with me explaining my symptoms. They said the last antibiotic was a good one (not the first one), but they wrote me a stronger prescription for a longer time. They also suggested I come back for a follow up when Dr. Sandor comes back and that I also see Dr. terBrugge. Since we were already in the city we decided to go see Dr. terBrugge’s team; he was away on sabbatical and I had not been able to reach him for a few weeks. One of the surgeons saw me for a few minutes and without examining me just said to take the antibiotics and see how my condition is by Monday. Okay.
We were back in Niagara by 4:30, and I convinced my parents I was ok to go home by myself. At 10:00pm I was calling them after a bad bleed and by midnight I was at the Niagara emerge via ambulance. The problem was I didn’t eat anything all day. I left for Toronto first thing in the morning in too much pain to think about eating. Then we went from hospital to hospital, not to mention that with the pain eating was still the last thing on my mind. By the time we were driving home the pain was so bad I took an antibiotic (Clindamycin) and a Percocet. Of course you have to eat with both, and the only thing I could eat at that point through the pain was a chewy granola bar my dad had in the car. I got home and I had a shower and laid down on the couch, fully intending on getting up in a bit to eat the soup my mom sent home with me. But I got tired and fell asleep, got the chills again and woke up with more pain. At around 9:00 I took another Percocet and iced my face to stop the pain (icing seemed to help with the pain a lot when the pain killers would not work… numb the pain). I fell asleep again. A bleed woke me up and I went to get more ice for it to slow it down and applied pressure to stop the bleed. Now that I look back at it all I didn’t bleed as much as I thought I did. I wasn’t thinking clearly at the time. After two courses of two different antibiotics the infection was still there and worse, the pain was worse, the chills were worse and I was tired and weak from not eating and from the strong painkillers. I have always been able to control a bleed, but that night I was too weak to stay awake. I remember getting up again to go to the bathroom but I didn’t make it that far. I woke up on my kitchen floor. That was my first ambulance ride in 14 years of having this condition. I hopefully am going to go back to my house soon (I’ve been staying with my parents) and the Percocet is not coming with me.
My parents know a local oral surgeon very well and he was very kind to come along to the hospital and stayed until he knew my transfer to Toronto was all set up at around 2:00am. My main nurse actually knew what an AVM was, which was very refreshing, although she had primarily known of brain AVMs, but still! The funny thing that I laughed at to myself was that the on call doctor that night was the one that gave me the wrong antibiotics a few weeks prior! But having the oral surgeon there to explain to him the situation (even on the phone while we were on our way over) was very helpful. By the time we got to the hospital they were all ready for us and had an idea of what to expect. I got my I.V. in the ambulance and in the hospital they took blood to see how much I lost because I was convinced I might need a transfusion. My hemoglobin was low (90), but they felt that being young and otherwise healthy, I could rebuild my hemoglobin on my own. I received a dose of my antibiotic through I.V. and then morphine with gravol for the pain. I slept most of the time at the hospital (or at least was resting but was aware of what was going on around me) do to the lack of sleep the past month, the loss of blood and the morphine. The big question was what hospital to transfer me to? That took about 4 hours of planning.
Dr. terBrugge has always been very calm about my condition. He has always told me not to worry, if I have a bad bleed to be ambulanced to Toronto and they would take care of me (he is at the Toronto Western Hospital). I have been lucky that I have never had such a bad night. But this night I did. I had the card of the neuroradiologist we happen to see that day at the Toronto Western hospital so the Niagara hospital called her. She informed them to transfer me to them and they would get ready for my arrival. An hour later she called the Niagara Hospital and asked that they take me to Mount Sinai instead where my oral surgeon team is. I didn’t know what was going on, but I was comfortable going to Mount Sinai because I am comfortable with those doctors, and I was just happy to be going to Toronto. Mount Sinai had no problem taking me. I was there by 5:00am. I stayed in emerge until 2:00 in the afternoon when a room became available on the 11th floor. By then I had more blood tests and heart tests to make sure my heart was ok, and I was receiving my antibiotic doses every six hours. After a few doses of the antibiotic I stopped asking for the morphine.
All the nurses and Dr. Sandor’s team were great. They made sure I was comfortable, made sure they answered all my questions, all in all made me relax finally after a month and made me feel confident I was finally fighting this infection properly. The surprising fact that I learned during my discharge Saturday afternoon was that no neuroradiologist wanted to come see me. The treating team had asked that they come see me, but the neuroradiologists didn’t feel it was necessary.
This is where I am confused and where my frustration comes in. According to Dr. terBrugge I need not worry about a bleed because he and his team will always be standing by to help. According to the Ontario health ministry neuroradiologists, not “dentists”, primarily treat AVMs. So why is it that when I had an emergency where I had to be transferred via ambulance from another city, the AVM experts did not see me?
Now I am on the road to recovery. Keeping all my fingers and toes crossed. I do have some glue coming out of an injection spot in my jaw now. I am anxious to see how that will turn out. I’m still bleeding from both injection spots one of which has the glue coming out. Dr. terBrugge said that he has seen this before and that usually the glue falls off on its own. So, we’ll see. I hope. My last embolization in February, Dr. terBrugge did direct punctures along with also going through the groin because they cannot get to some areas anymore (scary), simply because they have blocked them off with glue from past embolizations. I was told it is not unusual for some glue to come out. How scary is it that this stuff is moving around? It shouldn’t be. The topic of ethanol alcohol cons is so discussed, but what about the cons of glue? This glue has exposed me to an infection that has not been fun to deal with. I truly am not comfortable putting that stuff in my body anymore. Now I don’t feel alone in my AVM battle because I feel I have a great support team in my family, my friends and my AVM sisters. But I do feel I am missing one vital aspect, a neuroradiologist that believes in what I believe in. That is as much lonely as it is scary.
September 11, 2008. With the help of antibiotics and my awesome support team I am on my way. And I have squeezed all of my support resources this time. I needed to. The Oral Maxillofacial department at Mount Sinia has been great. Dr. Sandor’s team is awesome. A resident had spotted me at the hospital bookstore when I was there for my check up yesterday and stopped to ask how I was feeling. All the nurses asking how I’m doing… it’s my second home really. That extra kindness goes a long way. My friends have been great; my parents have been amazing. My awesome sister (who is eight months pregnant… yay!) and her husband have been great. I cannot even put into words how great I feel now. After my surgery and longer recovery during first year university I remember how great I felt and I kept listening to a song that just came out, “Cloud number nine” by Bryan Adams (yes, I love Bryan Adams). He has gotten me through some rough times with this 14 year ride and one of my turning points this time was seeing him in a solo performance last week. That and making it to Cruefest a couple of weeks ago after I got out of the hospital. I would have been really disappointed if I missed it since I already missed a show two days prior. Being able to be “normal” and the AVM taking that away from you sometimes is tough. But it’s the tough time that makes you strive for and appreciate cloud nine. Physically, I’m not 100% yet (the glue is holding on for dear life), but emotionally I am myself again. And that is more than half the battle. This is my favorite time of year, end of summer beginning of fall. Where we still have some great hot days, but the nights are getting cooler, we get to wear those cozy sweatshirts that are old and torn but can’t get rid of because of sentimental meaning. The smell in the air is awesome, and the position of the sun is beautiful. I love it. In the words of Nicki Sixx: Life is Beautiful.