The beginning of my story...

Where to begin the story that apparently needs to be told! I was born in Eagle Pass, TX. And my first recollection of having an AVM (arterial venous malformation) was actually @ 11 years old or so. Let me back up a bit and say that doctors always told my mother to keep an eye on what they thought was a “hemangioma” or strawberry colored birthmark on my left cheek! One day while my mother was @ the grocery store and my sister probably @ a piano lesson, I had been home alone and was lying on the couch watching TV. I felt a little bump on the inside upper part of my ear that I picked at, and before I knew it, I was seeing blood everywhere! I want to say I picked up the phone and called the grocery store to try and have mom paged, but I don’t remember completely. Maybe I went to the neighbor’s house and they called the store.

In any case – within another year we moved on to McAllen, TX w/my mom’s new job. We always knew the left side of my face was warmer than the right and that I had something unusual, but no doctor wanted to take on the challenge of knowing what to do with me.

Anyway, throughout my life, I constantly kept hearing, “Did you have your wisdom tooth pulled”? “Why is your face swollen”? Looking back now, it is nearly impossible to see any of that swelling – what swelling? In my mid to late 20’s I started having occasional nosebleeds. We weren’t sure what was causing this – we thought high blood pressure?

Saw the best ENT locally and he couldn’t see anything wrong with me! Went to see Doctors @ UTMB in Galveston that started trying to get rid of my problem (still not clearly diagnosed @ this point) by reconstructing my left ear! The doctors took a thin piece of skin from my left thigh – about the size of a business envelope that they would be using on my ear! Of course the avm came back worse than ever – my poor ear! It looked like a pit bull had gotten a hold of it! I used to have nightmares that my ear was falling apart piece by piece! I called mom one time to come to my apt. about 2 am because I was bleeding from my ear.

I don’t know how long the area took to heal, but somewhere along the line, I went back for more treatment with these doctors. (My left thigh took a while to heal as well – lots of itching where that skin was taken! The doctors @ UTMB felt they wanted to see if this “thing” was deteriorating the bone on the left side of my face, so the doctors broke my jaw and somewhere down that line legated the carotid artery and had to staple vessels and I even see a hinge in the x-ray! This meant having my mouth wired shut for 6 weeks! By this time I was in my late 20’s and had already met Mark. He took care of me as I healed from that trauma! Poor Mark – he used to put Chinese food in the blender, as I had to eat everything through a straw! Those wires I had were cutting my upper lip, so I would cut the fingers off those thin, latex gloves and put one of those fingers between the wire and my upper lip! I remember as Mark and I were preparing for our marriage, we told our parish priest about Mark taking care of me after surgery. Fr. Paul Hesse told us that if we survived all that – surely our marriage would be fine! Well, we realized these doctors were not helping – so we stopped looking for a while for anyone to help.

I don’t recall how we got Dr. Zide’s number in New York, but Mom and I took a trip to see him and Dr. Berenstein as well! Actually, the latter doctor appeared on a show where a man named Jeff Richie (?) had a huge facial avm, and Berenstein was one of the doctors trying to treat it. These doctors in New York referred me to a doctor in Houston they felt could help. This would turn out to be Dr. Mawad.

I had about 5 or so treatments with Dr. Mawad – he was putting a glue-like substance in the area to stabilize the avm. After those treatments – he knew he really couldn’t do much more for me. I was told to wait for a call from them, that they were going to put a team of doctors together to help me. I finally get a call and their best offer was: we’ll bring your body temperature down to zero, take muscle from your back to put on your face once we remove the mass and there is a 65% chance you won’t make it off the table and might bleed to death. Hmmm…. I think I’ll wait for technology to improve, but thanks anyway!

By now it’s almost the year 2000 and I’m in my early 40’s and having more nosebleeds getting more severe! We would go to the emergency room and by the time my turn was up – I had either stopped bleeding or had decided to leave and go home. I’ve always had a weight problem and I used to think – no matter how much weight I lose, or how pretty my make-up comes out or how nice an outfit I have on – I still have the facial avm that people were focusing on!

One Sunday after Mass, (Dec. 21, 2003) we were heading to the grocery store near our home, when I felt a tickle in my nose. I thought I was going to sneeze and took a tissue out from my purse. I blew my nose and here comes the blood! We hurried home and I bent over the bathroom sink for lack of knowing what else to do! The blood felt like I was chugging fluid and felt like I would drown! Mark called an ambulance to take me to the hospital! Like before though, no one wanted to touch it or could do anything for me! I can’t remember which group of doctors had finally called this thing what it is – an AVM – but I had given up hope that anyone could help! I remember wondering why this was happening to me – this is not the life I ordered! Yeah, that looks funny on that t-shirt from the “What On Earth” catalog, but I was living it!

Meanwhile, my sister Celia had been surfing the net for information and trying to find a doctor to help! She gave me all the information she found – and the first number I called was not the people I needed – but they knew who I needed to get in contact with and gave me Dr. Wayne Yakes phone number! We wondered if this was the same doctor one of the Youth Choir Members in our church choir had gone to see, as she had a similar problem on her leg! I never saw her, but I had heard this girl wasn’t happy with Dr.Yakes, nor the results of her treatments. I called Dr. Yakes office @ Swedish Medical Center and spoke with Lezlie Frank, at the time Dr. Yakes patient coordinator! She was instrumental in getting us up there! Leslie had me speak with Julie LaBadie – Dr. Yakes main nurse and she assured me they would help. I kept telling her all the times I had been let down and promised help – but she kept telling me that Dr. Yakes would be the one to help me!

So, in May 2004, I had my first consultation with Dr. Yakes! What a great guy! A big teddy bear of a doctor – nothing to be afraid of! Before seeing him though, Mark and I made a trip to the Mother Cabrini Shrine in Golden, CO! Pope JPII had visited the Cabrini Shrine when we (our church choir) had been invited to sing for World Youth Day in 1993! We knew Dr. Yakes was our last hope and we did lots of praying!

Dr. Yakes felt he could help, so I’ve been seeing him since! At one point, Dr. Yakes said he had a little more than 50% of the avm. Unforunately, avms are so unpredictable and everyone heals differently, so there is no set time that Dr. Yakes can tell me that this will all be over with! I used to get so depressed when strangers would ask me what happened to my face – but once I found Dr. Yakes, it was easier answering questions or getting stared at, because at least I knew I was finally getting help! I’ve always told my co-workers here that I feel like an alien from another planet because people look @ me as if I am one! When I go to CO, I feel like I’m on my home planet because I see other people who look like me! I’ve been with Dr. Yakes now for 4 years of treatments – I was sometimes putting off going, trying to not miss so much work! I would go every 2 ½ months to 3 months in between embolizations. Had to go back to CO for a couple of emergencies that we weren’t sure how to handle here! With my family helping us more financially, I am able to go more often to see Dr. Yakes, so now I won’t wait any longer than 8 weeks! I try to make it a point to go every 7 weeks now! We need to keep ahead of this avm or at least get it stabilized! I was spoiled for 2 years w/out a bleed and I’d like to get to that point again! I have no idea how many more procedures I have left – but I do know that I have a lot of family and friends that support me emotionally and keep me in their prayers!

I have very recently met Shalon Whitgob – Rhonda, one of Dr. Yakes P.A.’s had told me about Shalons web site, thinking it would help answer some of my questions or @ least help me feel not so alone out there! Boy was she right! After looking up Shalons site, I quickly e-mailed her and was so happy she e-mailed back right away! We kept e-mailing for a few weeks until we met just a few days ago! As luck would have it – both Shalon and I had appts. w/Dr. Yakes w/in a day of each other! We both also see Dr. Reed – the head of the Voice and Swallow Institute of Denver, CO! Since Shalon and I both have facial avms, Dr. Reed checks to make sure our air passages are all clear before Dr. Yakes does an embolization on us! Another thing Shalon and I have in common – we both have wonderful husbands that help us get through these terrible avm incidents! I am so happy to know Shalon – she seems very level headed, kind and beautiful! We both feel that as long as the bulk of the avm is gone and there is no bleeding – then we are where we need to be!


Cyndi Schuman