Vascular Birthmarks Foundation Forum - View Single Post - Multi-focal Venous Malformation
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Old 11-06-2003, 09:14 PM
Nessie
 
Posts: n/a
Default Re:Multi-focal Venous Malformation

Thanks for your response! I am so happy for you that you finally found a solution after so many years. I can't even imagine having to deal with this for that long. I haven't seen the best doctors out there yet, but I almost fear to that I might I learn that there is nothing I can do without looking totally disfigured. I think about how life will be without my VM and act under the assumption that I won't have it much longer. But if I find out there is nothing I can do I am so scared what my outlook on life will come to. I think about it constantly and everythign revolves around my VM. Like the second I step outside and feel wind, the first thing I think about is my VM, and how people will be able to see it when my hair blows. I am sort of able to hide it with my hair, and so I never put it up. I just want to avoid as many questions as possible about it, because every time I'm asked I think about it more.

I'm a little unclear, with your laser treatment, your VM will shrink and not grow back, but it will still be there? Or will you have to go back for more treatment years down the road because it will grow back? So a VM can never be removed completely with surgery or laser treatment? I was told by a plastic surgeon (VMs were not his field, but he seemed to know about them) that lasers can only be used on outer surfaces. Not inside the face. When you say inside, do you mean inside your mouth on the cheek, but not actually inside the cheek? See, I don't think laser treatment would work for me because my VM is deep (I think that's what you'd call it). It's in my face so that you can't see the blood vessels, just a big bulge in my cheek. So I guess it's one plus that you can't see the actual blood vessels, but the bulge is still disfiguring.

Thanks for the info on Dr. Waner. Him being busy is understandable, all I really care about is compassion, and it sounds like he has that. And it's great that he has such a nice nurse. I'm going to see Dr. MacArthur at the Oregon Health and Sciences University Hospital in January (I heard she's good) and I'll see what she has to say and maybe I'll end up seeing Dr. Waner. At least I know about him and could ask her if I think I should see him. Dr. MacArthur also works mostly with kids and sounds like a very compassionate person so I'm pretty excited I found her. But a little nervous too, to finally get closer to the truth about my treatment options. My last doctor was at an HMO that still operated on the notion that as long as it's not causing great health problems leave it alone. But I can't do that any longer, since it's getting bigger. he told me it was a hemangioma and didn't say anything about it getting bigger, so I'm pretty sure he misdiagnosed it. He told me that the surgery would leave a huge scar down my face along my eye, nose and mouth, so that they could pull the skin back and remove it that way. I couldn't believe it when I heard this. I probably felt the way you did when you heard you'd have to lose part of your tongue. I guess that would be worse, but to have such an obvious deformity is so hard. I always think about what bad situations or health problems I'd swap with people for my VM. It just takes away so much confidence and it's hard to live a good life like that.

Is yours really noticeable so that it causes you social issues or does it mostly cause you health problems? See, so far mine hasn't caused me any health problems that I am aware of, but it causes me great emotional trauma. And I feel like being a hermit and never meeting new people.

Okay, this is getting too long. Thank you so much for your understanding. It is so helpful to have found this forum and be able to speak with people who have the same problem. I often feel so alone with this problem so it is comforting to hear that I'm not. Let me know how your treatment goes, and I wish you the best of luck for your future.

Oh yeah, now I'm going to be really scared to have a baby. Because of the hormones affecting VM growth. I didn't know that before reading your post. Good thing I'm no where near having one
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