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Sunday, January 22, 2006

In the beginning...

...there was Christopher. And despite his wacky teenage parents, he was pretty good. Good that is until his face started swelling and looking bruised in places. That event around his first birthday set into motion a series of events that would color every aspect of his life for the next 32 years.

Okay, I am not going to write this entire post in the third person, I promise! My name is Christopher, and I was born with a type of vascular birthmark known as a venous malformation http://www.birthmark.org/venous_malformations.php. This blog is intended to be the story of getting rid of it, assuming that happens this week. You see, after 32 years of living with looking like I have had really bad dental surgery while I'm chewing tobacco, I'm leaving tomorrow morning for New York City to get treated on Wednesday by the world's foremost expert on my condition. After my first surgery at 18 months and 9 more with that doctor through my early teens, then getting my hopes up with a doctor at the University of Kentucky at 23 only to have them shot down, I actually have a chance now of looking normal. I am scared out of my mind right now, and I can't for the life of me figure out if I'm more afraid of the pain I'm about to endure or if my real fear is the possibility that the surgery won't work. Because if this one doesn't work, it is pretty much finished. This doctor, Dr. Milton Waner (see his amazing work at http://newyorkmetro.com/nymetro/health/bestdoctors/features/9267/index.html), is the best there is. You may have seen him on The Learning Channel treating some pretty severe vascular deformities on kids. He invented the technique for treating them, and very few doctors will touch the sorts of problems he routinely takes on and fixes. If he can't help me, no one can.

I had my first visit with Dr. Waner in May. My partner and primary care doc were the only two people who knew I was going. I flew to New York alone, and made my way to his offices on the Upper West Side, chain smoking at every opportunity just to have something to do other than think about getting told the expert on vascular birthmarks could not help me. As the receptionist made photo copies of my insurance information, I looked at photos on the wall of a fund-raiser. One in particular that caught my eye was of a little girl being held by....CHER! Well, my confidence meter just spiked up. If being greeted at this office by Cher isn't a good sign, I don't know what is! After getting checked in, I excused myself to the restroom to remove my makeup prior to my exam. I haven't been seen in public without makeup since age 16 or so. The birthmark is under my left eye, causing it to look like I've been punched. I also have some blue marks showing through in a couple of places, so every day since I can remember I use yellow concealer and then a flesh toned concealer over these areas. I hate wearing the stuff, but I just can't bring myself to leave the house without it. In fact, Craig and I were together for two years probably before he saw me without it.

The waiting room was jam-packed, and I had to sit in the floor in a corner for the first 30 minutes I was there before a seat opened up. Most everyone there was a parent there for their child. My mom popped into my head, remembering hours of driving for two hours to Lexington and waiting in lobbies for a chance to see one of the best plastic surgeons in the south, even though he was never able to truly help me because of the limitations at the time. Seeing these parents made me love her just a little more. I got to hear some of the tales of these parents during my nearly 3 hour wait, my favorite being from the total Jersey girl with the voice of The Nanny. Her daughter had a hemangioma that was removed from the top of her head by Dr. Waner, and he had told her that he stitched the incisions he made so that she would never scar in case she decided to shave her head as a teenager! The little gal was quite the charmer, and it struck me that she would never have to go through the stares and the rude questions I've had to endure my entire life. Someone once called child protective services on my mom because after being asked "what is wrong with him" one too many times, she told a rude woman that she slapped me around when I got sassy. And I wonder where I get my sick sense of humor!

So, I finally get in for my appointment, and get questioned by Esma, Dr. Waner's nurse. She and I ended up chatting about home remodeling (something I have recently learned is a universal language...everyone has a horror story they love to share) until the doctor came in. He was very softspoken and friendly, the sort of person who puts you at ease instantly. My MRIs got popped up on a light board and he looked them over as he asked me questions about my history. No doctor has ever fully explained my condition to me, so he took care to point out everything to do with my VM on the MRIs. Evidently, there is a pocket of fat in the face called the buccal fat. My VM (which is basically a mass of broken blood vessels feeding into pockets) is on both sides of the buccal fat, and to further complicate things, goes all around the facial nerves. The two reasons no doctor would ever fully attack my problem was the fear of paralysis coupled with the difficulty of massive amounts of bleeding involved. I had read about Dr. Waner's techniques on dealing with the bleeding, but didn't know how he handles the nerve problem. The best I had allowed myself to hope for was that he could take the size of things down somewhat.

Dr. Waner said to me very matter-of-factly, so casually I almost missed it, that the surgery for me was extremely complex and difficult to perform, but that he had done it before without problems. Excuse me? Back up, you mean you're actually going to treat me? I had heard correctly. He said there was no reason to think they couldn't get all of it. I was so shocked that I would have cried had it all registered with me completely.

I spent the rest of the afternoon wandering around the neighborhood trying to let myself believe I might have a chance at not being stared at wherever I go. I believed it once before and got very hurt, so I still can't let myself believe it entirely, even though my chances are excellent. That is why if you are reading this, you don't know me personally or if you do, the surgery has happened and was successful. Almost none of my friends know I am having this done. The last time I had surgery, for the next two years people asked me about it, which was like forcing me to relive my disappointment all over again. I won't go through that again. My family knows after I got a guilt complex and told them (and I yelled at my grandmother tonight for telling her church about it...I am so going to Hell for yelling at my granny!). My best friend Wendy knows because her son has a birthmark on his eye, and we have swapped stories, mainly so I could comfort her and try to help her feel okay with his situation. Once the surgery is successful, if it is successful, I'll send this blog out to my friends to share it with them.

So, tomorrow at 2:30 I fly to NYC with my aunt and my grandmother who has insisted on coming along. I am afraid I'm going to be spending more time worrying about them and getting them from one place to another in the big city than I am about myself, which really isn't such a bad thing. I have an appointment on Tuesday with Dr. Berenstein, an associate of Dr. Waner. On Wednesday, I check into the hospital for injection treatments meant to harden the mass in my face. They're working on the part on the outside of the buccal fat this time (which means more than one surgery if this is successful). Thankfully, they will put me to sleep first because I've had injections of another form in my face before and it is horrible. I'll spend the night in the hospital, and have surgery with Dr. Waner the next day. As best I can tell, he's going to cut me from the top of my ear to somewhere onto my neck and just dig right in. Yeah, it is going to be about as nasty as it sounds. Here's hoping for good meds and a sexy blind male nurse!

3 comments:

Corinne said...

Hi there! I really enjoyed reading your story. Can't wait to hear your updates. I manage a support group on MSn... we have over 900 members from all over the world. Dr. Waner has been so supportive of our group.

Keep us posted.

Corinne
mother of Nicholas age (almost) 3 born with segmental hemangioma

Katie said...

I read your story while searching on google for articles about Dr Waner, who I saw 2 weeks ago. I loved your story and actually felt like some parts were written about me. I would love to know more about your experience especially since I'm about to start one of many procedures w/ him myself!

Christopher said...

Sure Katie, what would you like to know?