Wednesday, April 23, 2014

My Lips Will be Sealed

I'm totally stepping out of my comfort zone
(in a major way)by posting this
photo…but this is how my lips
shut if I don't make the extra effort
to close them.
At this point, for those of you who follow me on Facebook and here on my blog, you all know that I am having laser treatments for my port-wine stain birthmark. In just a few weeks I'll probably be having another one.

During the next treatment we're going to do something I don't recall ever doing before - even from my treatments as a child. For the next treatment, I will arrive earlier than usual so they can numb my lip so that my lip will be treatable.

That's right. They're going to "beam up" my left-upper lip.

It doesn't sound pleasant, but we'll see how it goes. (I'm actually a bit nervous about it.)

When looking at my lips, it is easy to tell that they are not symmetrical. My right lip (the side without the birthmark) is smaller and thinner. It doesn't close all the way because the left side is too heavy and bulky. (This may not be obvious to those of you I only see in the digital world as, just like any woman, I look for my favorite photos - which usually avoid showing that aspect.)  If I want my lips to close all the way, I have to make an extra conscious effort for my lips to fully be sealed…and even then my attempt is not always successful.

I've asked my doctor about my lip many times in the last couple of years, "Is there anything we can do to help with this?" The doctors have told me that we can treat the lip, but more than likely there are no other options.

Many of you ask, "Why do you have the treatments? You're beautiful just the way you are!" While the treatments lighten my birthmark - that's not my overall goal at all.

My goal is not, "I'm going to have more laser treatments to lighten the birthmark so I can finally feel and be beautiful!!"…I have never thought like that. I'm okay with my birthmark. Sure, if I didn't have it, I could easily avoid a lot of frustrating situations - but I am okay with who I am…and that includes my "stain". I also enjoy being able to teach others a unique way many people can't.  
(Although, I’d be lying if I said I didn’t have my bad days.) If you read my post How Light is too Light??, you'll know that I struggle with the idea of my birthmark seeming invisible, and knowing how light is "too light".  

So why do I continue to do these painful and uncomfortable treatments? As I age, my blood vessels in the birthmark grow and enlarge, resulting in a lot of possible issues that can arise. Without the treatments, my birthmark’s color will darken as I age. It can even get larger in size. As the blood vessels grow and expand, my skin can also do the exact same thing, resulting in a pebble-stone type of texture. My skin can also harden because of the vessels and bleed for no apparent reason, once hardened. I am having the treatments to avoid all of this. Once all this happens - if it happens - the damage is done. There is no going back to smooth, soft, and “normal" skin. If I don't do the treatments and the hardening, pebble-stone, and excess random bleeding starts taking place, I can't undo it.

Another very likely possibility (that has been predicted by many medical professionals) for my future? My lip will continue to grow. It will continue to droop and sag, even more than it does now. Hence starting the process of treating it.

Fun fact? I didn’t know most of this information that until I started to do my own research a couple of years ago.  No one told me the risks of not treating the birthmark.  This is why I started doing my treatments again. This information has been my motivation in the most painful moments of a laser treatment.

When you grow up with a birthmark on your face, many things aren't really explained to you directly. As a baby, I was clueless and things were explained to my parents. As a child, they again, were explained to my parents. As a child, although I was somewhat aware, I still was kind of clueless to my difference and didn’t really care. I knew I was different , that people stared, made comments, and that I occasionally had treatments…but I think I focused on the outward appearance of my difference and not the medical reasons for them. When I was a teenager, I was a lot more aware but again, didn't focus on the medical causes, symptoms, or explanations of it.

Anyways…back to the point of this update.

Although I'll be treating my lip, the current damage has already been done. It is drooping and the treatments will not fix this problem. That being said, my doctor has recommended me to a plastic surgeon for reconstructive type of surgery for my lip.

Let me be clear: I don't want "new" lips. I just want them to be more symmetrical. I want to be able to fully close my lips with ease, instead of having to deal with the facial abnormalities that the birthmark causes.

Three professionals (my laser treatment specialist doctor, the laser treatment nurse, and my primary care physician) have told me that the plastic surgeon probably can't do anything to help. They'd probably be unwilling to try because my lip can continue to grow and become heavier, bulkier, and more droopy.  If my lip continues to do that, why try to fix it if my lip will later return to it's current state?  To summarize: In their opinion, it's practically a hopeless venture.

Well, today I had my appointment with the surgeon. I decided it never hurts to try or to ask…right?? (While I know it never hurts to ask, I was still nervous. I pretty much expected having to go in with a strong defense of why I feel this is necessary and the medical benefits of having my lip adjusted.)

The man was super kind as he measured my lips and assessed them. (I’m pretty sure that’s the strangest sentence I’ve ever written. Seriously.) I really liked the doctor as he really listened and seemed open to what I had to say.

At the end of the appointment, the doctor told me he was willing to give it a try! First, however, he wants me to go through one laser treatment where they laser the lip. He wants to see the affect the laser has on my lip. If it seems to shrink the lip (which, I’ve been told in the past that it won’t do that. Again, once the damage is done – it is done. But who knows? We could all be in for a surprise.) then he doesn’t think it’ll be necessary. But, if there seems to be no change in size after the next laser treatment then he is happy to continue towards a surgery to assist me in reconstructing the lip. He basically told me, “performing this surgery on you is no different than doing it on someone with a clef lip.”

If we do a reconstructive type surgery, he will basically go in and remove some of the extra tissue that is causing the extra puffiness. He only wants to take a little at a time, as he does not want to take too much. He told me, “It’s easier to take a little at a time. If you take too much, that’s a lot more work to fix.”

(Also, random note, this doctor even observed, “I’m noticing that for you to close your lips completely – you really have to compress the extra tissue.”)

I don’t know how this will all go down and how it will turn out. I’m mostly telling you all this as it is a part of the journey.

Ironically, my laser treatments are lightening the birthmark enough that people are starting to pay more attention to things like my lip. It seems as though I’m getting more questions at the school where I work, or by new people, “What’s wrong with your lip?” (Don’t get me wrong – I’m still being questioned about the purple birthmark itself. But I think, as of right now, those questions have decreased in amount while the others have been increased.)

I’ve always been more annoyed and self-conscious about my lip – more than I am with my birthmark (funny, isn’t it?)…but I think it’s mostly because I can’t even close the lips – and because I know the ability to close them will become harder as I age. I think if my lips could do the simple task of just closing, it would be a different story.

Having about three doctors tell me that more than likely no surgeon would be willing to operate was discouraging…Yet, the one I saw today was instantly more than happy to do so. I can’t even begin tell you how encouraged I feel after this appointment. 


While this may not seem exciting to some (and many of you may frown upon it, as I know some frown upon my doing the laser treatments), I am stoked.

The Travelin’ Chick,
Crystal


PS: I’ll update you when I know more – probably in 1 ½ or 2 months, after I see the doctor again about a month after my next treatment.

PSS: I still need to write a blog entry about questions some of you have asked me in the last couple of months. I just haven’t gotten to that yet, and I apologize. I have a few more questions of my own to ask my doctor before posting what I have already started, so if you happen to have a question – feel free to ask! I’ll include it. I’m practically an open book about my birthmark, whether you’re curious about the experience, medical technicalities, treatments, or even the emotional and mental processing of it all.

8 comments:

  1. Love this post :) your awesome my friend :)

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    1. Somehow I JUST saw your comment. Thanks, friend! You're pretty great yourself!

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  2. I came across your post on the vbf fb page. Your description of what could happen if left untreated is the easiest to understand. My son, Zeke has a PWS that runs the length of one arm, half his hand, chest and back. We have had four treatments and he's almost two. People keep thinking we are ONLY doing this for cosmetic reasons. Its the reasons you listed. I hope you continue to have good results. I pray that I can help him love/accept/appreciate his PWS. I once heard a guy on a you tube video say, "It's not a birthmark, its a mark of awesome!" Take care and thank you for sharing your journey.

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    1. Thank you so much for your comment! And yes! I totally understand. I've had many people ask me why I need these treatments and have been asked, "don't you know you're beautiful the way you are?" That's when I realized - they don't know the risks involved if I don't do something. Life gets a little easier the lighter the birthmark gets, but the lighter it gets the more I start to miss it too. It's hard to find a good balance while trying to protect my future health.

      Thanks for stopping by and for reading! And thanks for your comment! Please feel free to stop by anytime. I'd love to hear how your family is doing and how your journey has progressed. :-)

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  3. You may want to try and have your surgeon speak to Dr. Waner in New York website address is http://www.vbiny.org/
    I have not seen him but I visit the vascular birthmark forum somewhat often (website addy-http://www.birthmark.org/board/) and his name comes up often when discussing debulking birthmarks. Debulking thins the tissue and vessels making them lay smoothly rather than being puffy.

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  4. I understand your reasons for performing this type of laser treatment and the lip surgery. For the laser treatment, you'd rather be safe than sorry in these types of cases, right? As for your lip surgery, I'm impressed with your determination to try out things, and with your research beforehand, it will surely turn out great. I hope everything falls into place and that both procedures work out well after all the sessions. Take care!

    Glenn Lowe @ Knight & Sanders Plastic Surgery

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    1. Thank you for your comment! I had my lip treated by the laser for the first time in August, and will go back in November. My laser doctor wants to try that a few times before fully diving into any other options, which makes sense. He wants to see if the laser will make an impact and if anything else will be necessary. So far I haven't noticed a change, but it is always possible that it can take a few treatments.

      But yeah...to be a good patient, I think it's key to be well-informed, ask questions, and to do research.

      Thanks again for your comment! :-)

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