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Articles Of Interest

Medical Articles

Using MRI In Treatment
MRI Aids Treatment
Diagnosis And Treatment
Urine Test May Help Disfiguring Birthmarks
Musings About 21st Century Medicine

Peoples PWS Pages

Adult's Pages

Hank's PWS Page
Myron L. Bender's Story

Children's Pages

Jozi's Page
Noah's Page
Lisa Halmineva's Page
David and Helen Bull's Page
Doug's Page

National Organization for Vascular Anomalies

Fresh Start

Do you have a port wine stain, or are you a parent of a child with a port wine stain? If so, you may have sought treatment and been told by a doctor that there is nothing that can be done. If that is the case, then you will want to hear what I have to say.

Let me start off by saying I am coming from the perspective of knowing what it is like to live with a Port Wine Stain. Since Port Wine Stains appear at birth, treating people in the early stages of life is what people say is best. If you would like to see what that looks like through this family's example click here. If you would like to investigate places for being treated yourself or treating your child that is what the list below is for. Keep in mind though the links I have below are people who though they treat PWS I don't know how knowledgeable they are in their craft. The only doctor I would recommend, even though going through these surgeries have been extremely difficult for me is on one of my links. That person would be would be Dr. Waner of Beth Israel Laser ans Skin Surgery Center. He appears to be really knowledgeable about his craft. My experience with him has been far better than with my last doctor.

Please look at these pages
as well as their are useful links on them

Index
Parents
Handling Misunderstandings
Relati

In my PWS case, my parents and I didn't have the technology available to us that is available now. In my early years we were told nothing could be done. I am sure a few of you have heard those words as well. That was true to some extent. Operating on Port Wine Stains is indeed very risky, because they are so vascular. When I had my first surgery at Stanford University Medical Center at age 9, Dr. Apfelberg reduced the bulk of my growing lips using laser technology that was state-of-the-art in 1981. The technology has continued to progress since then.

My current doctor, has taken advantage of the new technology as well as made some advances of his own. His contributions have helped advance the cause of Vascular Malformation treatment technology have been really significant. His motto is "Every child has a right to look normal", and he is also a believer that early intervention is of utmost importance. That is especially true considering the fact that the longer you wait the more difficult they are to get rid of. That is precisely why it would have been so nice to find Dr. Waner a long time before this. It is because of not having the privilege of finding him sooner, that I have had to let my birthmark grow more than I otherwise would have. That is why I have had to undergo at least 8 surgeries. I think it would have been less otherwise. Even though I have had to undergo as many surgeries as I have, I have been blessed to be under Dr. Waner's care since he is so compassionate. You can tell he really wants to give his patients excellent care.

In what I think was the last surgery I had, he removed a large amount of the growth which is part of my birthmark from the area in my throat where it is growing. As a result it is not nearly as intrusive as at one point. He wants me to come back far more often than I come back, but I try to stay away as much as I can because it is too difficult for me to go through on an ongoing basis.

Dr. Waner is an ENT. He got his start in the medical field when working on cancer patients. Though cancer cases were where he got his start, it wasn't long after that he decided to make his focus vascular malformations. Some doctors appear not to feel comfortable following his lead. They also seem hesitant to refer patients to specialists like Dr. Waner when they are unable to help. Perhaps they are not familiar with the work that is being done or perhaps they are afraid to give the patient false hope. They certainly know that operating on a port wine stain is extremely risky and requires a high degree of skill. Whatever the reason for their hesitation, the people who lose out are the patients.

When my folks and I found Linda Shannon, head of the Vascular Birthmarks Foundation , who works directly with Dr. Waner, it really encouraged us. Linda was able to give us the needed information.

Though Dr. Waner is the best one to go to if you can't afford to fly to New York, there are other places you can look into. Even though not many people have the knowledge Dr. Waner has some can still be very effective at treating Port Wine Stains. The links I have out to the right side of the above picture are articles with helpful information on Port Wine Stains and treating Vascular Malformations. The Waner article I have a link to was written by Dr. Waner. In Addition, below are some treatment centers in the United States and a couple abroad. I don't know how the doctors below are, but here are links to a few you can check into.

Before I met Dr. Waner, I had no idea that there was someone that skilled in the area of port wine stains, hemangiomas, and other vascular anomalies. That is especially comforting considering how complex my birthmark is. In addition, it is good to rest assured that birthmarks are common for many people. If you would like to be able to see what others have gone through one place to meet people is at Birtharks.com .

As far as my case is concerned, above is a picture of what I looked like when he started working on my port wine stain. I had not had any reconstructive work in about 15 years, and my PWS had thickened and developed cobblestones. In the above photo, you will notice the knob on my chin and the overgrowth of my lips. Many of the cobblestones on my chin were removed in the first surgery Dr. Waner performed. It was really significant to get the knob removed because it was a heavy weight on my chin. As you see below with the removal of the cobblestones and the knob, my chin has become a lot flatter.

In one of the surgeries I had many years ago before being seen by Dr. Waner, my trigeminal nerve was damaged. As a result the right side of my lower lip and chin are numb. It is very frustrating and the sensation can never be returned to normal. It is hard to keep from drooling because I can't feel it when saliva is pooling behind my lip.

Dr. Waner did 4 surgeries to remove much of the excess tissue in my birthmark. He hoped to be able to lyposuction a lot of the thickness from my birthmark, thinking it was fatty tissue. As it turned out, he found that it was all fibrous and could not be extracted. In the photo below you can see one of the areas where excess tissue was removed from. As you can see, the opening by my nose wasn't healed at the time the picture was taken.

For my sixth and seventh surgeries I went to New York City to Beth Israel Medical Center where Dr. Waner had moved his practice. There I was seen by Dr. Alex Berenstein an interventionalneuroradiologist whose 3-dimensional MRI gave Dr. Waner the information he needed to continue my treatment. He discovered that my skull and facial muscle were both enlarged on my PWS side which greatly contributed to the bulkiness of my face.

Dr. Vedran Melitis, a neurophysiologist, also contributed to the success of my last two surgeries by mapping and stimulating my facial nerves so that Dr. Waner could see where he was going and avoid damaging them.

There are different factors that can cause thickness in a birthmark. When a birthmark gets thicker it can be because the bone has become significantly larger because the muscle has grown. The birthmark can also thicken because there is a good amount of fat that has developed in it. In my case, my bone had grown, so they mainly shaved off muscle, but they did remove some fat. Eventually they may address my bone issue a little more thoroughly than they have thus far. They are hoping real soon to find the answer to what causes the tissue to grow, which is known as the tissue growth factor . Once they find an answer to that they will be able to put something together to stop that from happening.

Another thing to think about is once they take out facial muscle and tissue they might need to put a drain in your face. I can say from first hand experience how uncomfortable that is. However, they need to do it for the long term benefit-namely that is to get the fluid out of your face left from where the tissue once was. That way, you will be able to benefit from the work they have done on you. As a result of the drain you may have to sleep in a different position than you are used to for a few days so you can allow the drain to do its job. Since you may have to sleep in a different position than normal, it may be hard to sleep as soundly. I noticed when my drain was in that that was the case. That was one of the big reasons I was so grateful when it was removed. I was also grateful they only needed to use drains for a few of the surgeries. The drain below should give you an idea of what the average drain might look like.

Some PWS birthmarks only go as deep as the outer layer of the skin. Others, like my own, are on the inside of the face as well. Even though my birthmark has always been on both outer and inner areas of the face, when I was a little kid, as in the picture I have under the parents section, my birthmark was still much lighter and less involved. Over the years though it grew, darkened, and developed. That is why they are preaching early treatment. Even though a birthmark may have darkened and become more involved before you had an opportunity to address it, all is not lost. They can treat you to lighten your face a few small areas at a time. I have had Dr. Waner do some lightening on my face and at some point whether Dr. Waner does it or someone else I will continue to have lightening done. Having said that, if you look at the black spots on my forehead in the picture above, then you will see what it looks like before lightened areas are fully healed.

By now, those of you who are adults and who have lived with a port wine stain all your life have seen what Dr. Waner has been able to do for me. Dr. Waner has called my particular birthmark the most aggressive he has ever seen. If my birthmark is the most aggressive he has ever seen and he has done as much as he has for me, just think what he can do for you. In addition to telling you all what Dr. Waner has done for me, I have got to thinking. I really soon would like to add a section to this page of what various people PWS' look like whether worked on or not. Maybe that will help those who haven't seen a lot of us together to have something like a slide show. If any of you would be interested in being part of such a thing please e-mail me a picture of the person with the PWS, whether that is you or someone you know.

For those of you who are parents who would like to get a better idea how a PWS develops in a child's life, read the section I put together specifically for you . That section addresses the issues your child may have to work with as part of the territory that comes with living with a birthmark. One thing that I know I dealt with both in my childhood and even now as an adult which anyone with PWS I think could relate with is how easy it is to bleed. I have noticed at least for me when I start bleeding on my PWS side it doesn't stop for several minutes. It is even more challenging following surgery. Another thing you may want to take into consideration, after you or your child has had a surgery like this is you or they will want to make sure you have planned to take a week off from normal activity since your body will need the rest. After this last surgery which just so happened to be my last one for a little while, I slept a lot in the first five days post surgery because it takes a while to get energy back and even then my energy didn't fully return until the seventh or eighth day after my surgery. Even after that point it still takes close to five weeks for the swelling to fully subside.

Before we had the first surgery done by Dr. Waner we were really cautious about who treated my PWS. One easy test for finding out whether it is worth spending any more money or time with a doctor is to see if the phrase "nothing can be done" comes from his/her mouth. When you hear a doctor say "nothing can be done" it doesn't mean that that is true, just that they can't provide help for you or your child's port wine stain. It is time to find another doctor. Don't ever let "nothing can be done" be your final answer. Instead of getting frustrated just keep looking. We almost didn't find Dr. Waner, but our persistence paid off in the long run. As you look at the pictures you see how much help he has been. As the time continues on I am sure that will continue to be the case too.That is why it is nice to have a doctor around who you know can help you. In addition to that however, you can also take advantage of the many other resources out there. Below I list a couple of them. If you don't have a birthmark or hemangioma, but would like to help out those who do for treatment I have a few organizations listed out to the right side you can look into.

In addition, if you would like to see how a PWS or Hemangioma left untreated impacts people socially click here

On another note below I list some other links here that have to do with information to show what else they are learning to work toward improving what can be done in the field of birthmarks.

This is slightly off the subject of what I have been talking about, but for those who have read other pages relating to birthmarks as well, I wanted to gently make a clarification here for those who have. You will see that many peoples web pages if you have done a lot of research that say that Jacob stole his brothers birthmark. That is probably an innocent mistake. In the Bible you will notice that it says "Jacob stole his brothers birthright" which for those who are interested is spoken about in Genesis 27:39-40." The whole story though is all of Genesis 27. I have to say though, the Lord was there to to bless Jacob if Jacob did what God asked in that story. If you do what God asks though, He will bless you as well whether you have a birthmark or not. For those who do have birthmarks, I hope the show that was aired help you out. That is why we aired the Discovery show in the first place.

God Is There

Thank you for the response from all of you who saw my special which aired on September 26th this year on the Discovery channel. If you didn't get a chance to see it, it will continue to air off and on over the next few months or so on the Discovery channel and now on TLC as well. Even though it's main goal is to help you out in the area of birthmarks, it will probably give you a sense of my interest in the internet. Having said that, it doesn't mention how important everything church related is. I really want to get some of that footage online for you so you can see how meaningful my church family has been for me.

I have to say I really enjoy being a part of such a meaningful church! It is my involvement in my church across the years that has meant so much. I can't express how much of a blessing it has been to be a part of a church that teaches the Bible. If you would like to have that privilege and are trying to find a list of churches in your area that preach the Bible click here . One thing I have had the privilege to do is to be on the worship team for the ministry I am a part of. In addition no one really usually says much of anything about my birthmark after my being up in front. I must say though, I know it will take a while to get my Port Wine Stain addressed to a satisfactory level. In the meantime I choose to live my life and not pay a whole lot of attention to my Port Wine Stain unless asked about it. I know that a Port Wine Stain can be crippling for some, but what those of us with a Port Wine Stain need to do is not pay attention to the comments or looks we may get now and then. After all it is only you, others with your condition, and those who you know well that can fully understand what you are going through. The Lord who created the heavens, the earth, and your health, knows well what you are going through. You are valuable inside and out in God's eyes. The Lord desires that you realize just how valuable in His eyes you are. He wants to comfort you as you go through the surgeries you go through. He will always be there, and He wants to bless your life, but He won't get involved in your life unless He is looked to. He will only be there for you if you ask Him. How do you do that? For those who would like to ask the Lord into their life here is how. The Bible says "All have sinned and fall short of the glory of God." (Romans 3:23.) What is sin ? Sin is when we do those things that are not right in God's sight. We then we read in Romans 6:23 that "the wages of sin is death, but the free gift of God is eternal life through Christ Jesus our Lord." When we accept that gift, we can be assured that God will receive us into His family and that we will never again be separated from Him.(Romans 8:38-39) Accepting the Lord is the best decision we could ever make because without Him we won't be let into His heaven.

If you would like to ask God into your life simply talk to Him and do that. Romans 10:9-10 says, " if you confess with your mouth the Lord Jesus and believe in your heart that God has raised Him from the dead, you will be saved. For with the heart one believes unto righteousness, and with the mouth confession is made unto salvation." The next step is to read your Bible and find a Bible believing church. If you asked God to come into your life through this please write and let me know. I would be delighted to hear!

Traveling For Treatment or Pleasure

Before I talk about traveling for treatment, I wanted to mention a couple of things. First off, for those who have seen this site before that I plan eventually to be adding some video that has not been seen before, so you can keep your eye out for that. Secondly, I am sure, that some of you have been wondering why I have been so silent lately. I am looking for more useful things to help you out. If I haven't said anything it is only because there isn't a whole lot noteworthy to say. For those who are interested, there is a possibility I may be going back in February to see Dr. Waner again. That is just wait and see though If I do then they will probably pull my lip up. I know they also want to get rid of some bumps that are there and eventually completely smooth out my chin. When you live far away from the surgeon like myself it is nice not to have to go back often because it can be such an ordeal.

It is also good to note that if you are leaving very soon after your surgery, you won't be feeling very well returning home from surgery. Therefore, you should make the trip during a time you are able to handle the travel. Personally I live on the west coast so it was a six hour plane flight to New York City where my doctor practices. As one who has done that 11 times I can certainly say taking a trip like that when you are in the early stages of your healing is not easy. That is why we didn't leave for our area until we had been there at least a couple extra days. It took that long just to begin to get enough strength back to fly across the United States. Though I don't care for traveling for surgery, I love traveling for pleasure. I have been a few different places over my life. I was in New Jersey on 9/11 when the twin towers collapsed in New York and saw it from my hotel window since we had a really good view. For those who don't live in New York or New Jersey, New Jersey is only a state away from New York. In addition to my trip to that area, I have also been to Israel on 3 different occasions for a couple of weeks. I also went to Washington D.C. and saw the White House. In addition to that I went to Petra, Jordan for a day during one of my Israel trips and during one of the other ones I went to Egypt. A friend of mine and I want to go to Nashville, Tennessee this March. For those of you who live in Tennessee you can keep your eyes peeled for us during that month next year.

If you are one who is trying to relate to someone with a Port Wine Stain, it is important that you express to that person that you care for them as a person and that you don't want to be critical of them simply because there is a mark on their face. I say that because we take that kind of insult the same way you would take any personal insult. In addition some if you asked them, would tell you, that they are very self-aware of there birthmark already, and those kinds of comments can cause an already low self esteem for a child a child at least to get lower. As we grow we find ways to deal with that, but the fact remains that if a person has not grown out of the stage where he or she is not able to brush off those type insults easily, then you can really bring them down the rest of the day. I talk about that a little more about relational issues in my relating section. You can also get more general information by going to one of the links listed on the side under other pages. Also if you would like me to post your story or let me know what you think of what I have posted thus far you can contact me by clicking here. I will get back to you at my first opportunity, but I am glad to hear from all of you. I want to answer each of you on a more personal level.

Some who deal with the public at large still seem to feel uneasy about revealing there PWS. Just look at Joie Davidow.

Some peoples cases however, are not as bad as others. As a result some people will experience less teasing than others. Unfortunately outer appearances can sometimes be deceiving and can appear like a certain condition is more involved. Having said that, those of us with a birthmark know that no matter how involved a birthmark is, in most cases they are harmless. Though we can get treatment for them it isn't always necessary. I think for people with a birthmark who desire to date, it can be a challenge, because whoever the other party is, may assume the worst about someone's PWS or Strawberry Hemangioma before asking. Speaking of people's PWS or Strawberry Hemangioma, I list a few case stories below. I may add more stories as I find them as well..

Employment

Obviously an important part of life is employment. Unfortunately when living with a PWS, it is all too easy for people to reject you for employment simply because you have a birthmark. They judge you and draw conclusions about your intelligence based on your appearance. As far as I am concerned that is just not right. It is discrimination and it is illegal. The importance of looking past the outside doesn't only relate to me though, it relates to anyone living with a port wine stain. In addition, I think it must be hard for people to look past the birthmark and consider the person himself for who and what he/she is. Given that fact I am surprised, impressed, and happy simultaneously when I find someone with a PWS who has a spouse. I say that because it shows that the partner was able to look past the birthark and at the person inside instead. Looking at a persons personality instead of just a mark on their body is something that shows that they are more mature. That is the case whether it is a spouse or an employer. Having said all that, if those of us with birthmarks do get employed I have had the experience that people are afraid to let me do much on the job. I am convinced it is because of my birthmark as well. In the following link you will see an example of someone who was discriminated against because of their birthmark.

As one who has had a birthmark all my life, I can attest to how frustrating the misunderstandings of employers of employers can be. I can't stress enough to current and potential employers of those with birthmarks how important it is to look past the outer person and look at the inner person instead. Unfortunately it is all to easy for people not to do this. That is why it can sometimes be tricky to find work. If you are one who is looking for a job and don't want to think about potential employers possibly discriminating against you, you can always wear makeup to cover your PWS up so you don't have to think about the negative reactions of potential employers. If you would like to look at some of the sites that sell the makeup I have listed a few places below for you.

If you be interested talking with me more about what you have had done regarding your PWS, what to do, or have comments write me. I would especially be interested to hear from those of you have had similar experiences to what I mention here.

Up till now we have been talking about how we deal with our birthmarks and the misunderstandings that we have because of them. Having said all this there is at least one big influence out that fan the flame of those views, namely the movie industry. If you pay attention to the way people look at birthmarks even in the media, you will notice how people use birthmarks when they are trying to point out a person who should be avoided. Though there probably are a few people with birthmarks for various reasons, their PWS should never be a reason to avoid them. In fact as people well know just because a person has a PWS doesn't mean they still couldn't contribute to society. There still are people with PWS who made contributions to society in spite of the PWS.

One last note: You will notice I have a lot of links on on the various pages of my site. I went through and did a bunch of research for you so you don't have to since I know the web can be a maze. A lot of the links I provide are really informative. In addition, there are some that are just links to people who do laser in each city which I list that I thought may be useful as well.

Do you or someone you love have a

Port Wine Stain Birthmark?

God Is There

Traveling For Treatment or Pleasure

Employment