VM in Left Side of Face and Nerve Damage
I am 27 and I have a venous malformation in the left side of my face; it is mainly in the cheek area, but extends up below my cheek bone to the base of my skull. It is actually not very noticeable right now - it is deep below the surface and only relatively slightly bulges in the cheek area. I have had several sclerotherapy treatments since I first started treatment in 2004. I actually found this forum back in 2004 and it's been a life-saver. I am so thankful to the creators of this website and the VBF.
I have sort of a long story, so I'm not really sure how much information to include here. I was first diagnosed with my VM when I was 19, when all of a sudden my cheek started swelling huge. I didn't even notice there was anything there until that point. The doctor I saw advised me to just leave it alone, and the only treatment option he described was a horrifying surgery that would leave me with a distorted face, including facial paralysis. My VM slowly grew, and when I graduated from college in 2003, I began researching doctors and my options.
Through my internet research, I found Dr. Nesbit at OHSU in Portland, OR, which is where I was living at the time. He's an Interventional Radiologist with great bedside manner, and I highly recommend him. He performed multiple sclerotherapy treatments on my face in 2004-2005. The sclerotherapy reduced the size of my VM to a manageable size, and I was advised to maintain the VM by receiving sclerotherapy every couple years or so, as needed.
Although I was content with the sclerotherapy treatments at the time, I was curious about my option for surgery. I had heard about how great Dr. Waner was on this website, so I set up a consult with Dr. Waner in 2006 to coincide with a trip to New York to visit a friend. I actually saw Dr. Berenstein also. They were both impressed with how the sclerotherapy was working for my VM, and suggested that I stick with the sclerotherapy; however, Dr. Waner said that if ever the sclerotherapy didn't work for me anymore, he could perform a surgery where they would cut along the hairline, as in a facelift surgery, they would temporarily move the nerves out of the way and remove the VM such that it wouldn't grow back. Dr. Waner said that although they were very experienced with this sort of surgery, and there wouldn't be any real noticeable scarring, it was a very involved and invasive surgery, it would take a while to recover, and there was a risk of facial paralysis. With that, they said surgery was a definite possibility for me in the future, but recommended I stay with the sclerotherapy as long as it was "working for me."
Well, I just went back to Dr. Nesbit for another maintenance sclerotherapy treatment in April, and this time my nerves were damaged. It was terrifying! I'd had the treatment so many times without any complication and I felt so confident with Dr. Nesbit. I still think he's great, but something just went wrong, and we're all a little stumped right now. It's been over two months and now the nerves are finally starting to gain their function back. It was an incredibly difficult two months...waiting and not having a guarantee that they would come back. I am SOO GRATEFUL that they are starting to come back.
The first step was to see what my nerves would do, and now that they're coming back, I'm just not sure how to proceed with treatment in the future. I can wait a few years without too much grief because the VM is not too noticeable right now. But now, does this count as sclerotherapy "no longer working for me"? I can't imagine taking the risk with sclerotherapy again after the last two dreadful months, and after a few years I will have to do something again. Right now Dr. Nesbit is not sure what to recommend - we're barely getting out of the nerve healing stage. I will probably seek the opinion of Dr. Waner again and maybe other doctors.
I'm just wondering if anyone has had a similar scare with nerve damage before? Or if anyone has any advice on where to go from here? At this point, it almost seems like sclerotherapy and surgery are equally risky, from the standpoint of nerve damage anyway. I'm curious if Dr. Waner would suggest the surgery now after the unsuccessful sclerotherapy treatment. Dr. Nesbit and his colleague, Dr. Downs (Facial Plastic and Reconstructive Surgeon at OHSU), were still reluctant to suggest surgery for future treatment.
I also wonder what my face would look like after surgery as far as symmetry? I know there will be very minimal scarring and they would take fat from my buttocks to fill the void left my removing the VM, but I guess I need to ask for more information about how it will look exactly. I wonder if it will look better, a little worse or the same...
Although I can wait a few years before treating my VM again, I wanted to start figuring out what I can do next as soon as possible. I look forward to receiving feedback of any kind! I would also be happy to answer any questions about my experience. I would love to be of help to others, if possible.
Thank you! And good luck to all of you.
Last edited by Vanessa : 06-20-2008 at 05:04 PM.