Can anyone tell me about lip hypertrophy?

Hi Everyone,
I originially posted on the hemangioma site, but it appears that my son Dennis has a PWS instead and we are now treating it as such since we haven't seen any growth in 5 weeks. So now that I know where we are headed I had some questions.

My son's birthmark is partly on the tissue of his upper lip and extends almost up to his nose and now I am scared about lip hypertrophy. I have been reading that this can happen, especially on the lip and wondered if anyone had any experience with this.

Does hypertrophy always occur in PWS of the lip? Can laser treatement prevent hypertrophy down the road? At what age does hypertrophy occur if it is going to. What kind of results can be expected from surgical "debulking" or other corrective surgeries? Once corrected, will you continue to get hypertrophy and need corrective surgeries for life?

If anyone has info about this I would really appreciate help. It seems every day I am frightened anew by the things I learn about vascular birthmarks!

Thanks,
Dennis' Mom

[hankbartenbach]

Hi Dennis' mom,

I think we have talked before but if not I am 23 years old with facial PWS.

I also have had three debulking surgeries on my hypertrophy areas on my upper lip and both eyebrows. If you would like to see pictures of before and after surgery and see pictures what I looked like younger you can visit my website at www.hankspws.com

To your questions.

Not all people that have PWS lip or not has a chance of it growing. Since every person is different no doctor can prodict if the PWS will grow. Laser treatment of course can help prevent it from causing hypertrophy as well has bleps and coblestones. Some doctors think it is caused by hormones. Mine did not start growing until I was 20, 21 years old like several others guy friends I know with PWS.

PWS is a life time condition as of right now until technology gets better. I have been doing laser treatment for 18 years now to keep it under control. Laser treatment will be needed to help remove Dennis's PWS. Some can completely be removed but might need touch ups every couple of years. In my cas I have a level three PWS that means it is very deep and laser treatment is only so affective. That is why debulking needed to be done.


I hope this helps and if you have any other questions please ask we are all here for you.

Hank

[swsc]

Hi - Hank has given you some great advice, as he has personal experience. My grandson also has a facial port wine stain. His lower lip has hypertrophy, as well as the gums. Like Hank pointed out, it is difficult to determine if any one person will be affected by hypertrophy. Most parents I have talked to, say their doctors now treat the lip and gums early on (if affected) while they treat the rest of the sklin with the port wine stain. They have been seeing good results. When my grandson started laser treatment 11 years ago, they only treated his face, not the gums and lips, and he does have hypertrophy of both areas - However, this is not a postitive indicator of what may happen with another patient. There are many factors that can impact treatment and results (location, depth, etc.).

How old is your son, how large is the pws area and what color is it? What has your doctor advised?

I know at first, all the information and stories you hear can really be overwhelming at times. It can be frightening, but don't let it consume you. We are here for you and your son. If you need anything else, please let me know.
Glenda, VBF/SWSC
http://swscommunity.org

Glenda and Hank,
Thanks for the info. The hardest part is not knowing what to expect for my son down the road. I wish someone could tell me exactly what outcome to expect, but like you've both said, it varies from patient to patient and there is no way to tell for sure.

Glenda, you asked about Dennis' birthmark. It is not very large or extensive but covers about half of the tissue of his right upper lip and extends to his nose. It also crossed the midline and affects part of his left upper lip. He is only five weeks old. The color varies from very light pink (barely noticeable) to quite red depending on if he is hot or upset. So far only one doctor has mentioned hypertrophy and seems to think you'll get it even with laser treatments. Other doctors haven't mentioned it, and it is mostly through internet research that I've found out about it at all. No one has mentioned that port wine stains are graded from I to IV.....and no one has yet told me what grade they think he has.

The good news is we have an appointment this Monday with Dr. Blei and Dr. Geronimous in New York. I am hoping they can give me better info since they have seen so many.

Any other info you could pass along would great. I have been so thankful for all the help and support out there. It has been a very scary and confusing time and I don't know what I would do without the help of websites like this one and all the great people willing to communicate with me. I know that there are many parents and children facing much more extensive and complicated Port wine stains and syndromes than my son has, and sometimes I feel guilty evening complaining about what Dennis has, but I thank everyone for the help.

Dennis' Mom

[swsc]

I'm so happy to hear that you will be seeing doctors Blei and Geronemus. They are both wonderful doctors, and Dr. Geronemus is one of the best there is. please let me know what they say about Dennis.

Please don't ever feel guilty about wanting the best for your son. Just becuase his birthmark might be smaller than some, that doesn't mean his conditon isn't just as important. The people on this group have been in your shoes, and what you are feeling is perfectly normal. It is all so confusing and can be so frustrating at times. We are here to help and offer our support, so please don't hesitate to call on us.

You can contact me any time at swsc @swscommunity .org (no spaces)

All the best,
Glenda

Dennis' Mom, Hi! My 7 month old daughter has a small port wine stain that sounds exactly like your son's pattern. She also has a v shape on her forehead and some on the left side of her nose. I just found out it was a PWS the other day. Since it has lightened up some since birth I thought it just a harmless birth mark that was going to fade away.Turns out to be a PWS which I knew nothing about until I started reading about them on the internet. You want your child to have a wonderful life and never have to feel embarassed or get teased. It is only natural to want to protect him. I don't know what stage my daughter's is either. The doctor didn't get very in-depth with me. She will have her first laser treatment at the end of April. The doctor said he has to stay away from the very edge of her lip or he might take some of the pigment out of it. He is supposed to be world-renowned so I trust what he says. I will e-mail you a picture of my daughter if you want to see her.* * *Lisa M.

Hi. I'm a 33 year old female with a port-wine stain on my face and my lower lip as increased in size over the years. My PWS has never bothered me much growing up or as an adult. I have a great family and friends who never made it an issue. The technology wasn't there as it is today for my parents to try and remedy the situation. It wasn't until a year a go that I started looking into my options because my lip has grown over the past 10 years or so. I really can't say when my lip starting increasing in size because it has always been a little "swollen" but the doctors say it is hormonal and I do notice that my lip swells a little now when I'm ovulating. I've been told it is probably good that I've never had a baby because my PWS could've developed blebs or coblestones. I don't know. Anyway, I've begun pulse dye laser treatments on my facial PWS and on April 3 will begin inter-lesional YAG laser treatments on my lip. I will be under general anesthesia and they will actually insert the laser into my lip and vaporize the blood vessels from within. The drs say that this will help to reduce the size of my lip some and once we aren't seeing results from the laser anymore, they may have to debulk my lip. I'll keep everyone posted with my results. I hope and pray they are good results.

Hi. Good luck withthe upcoming treatment. Please keep us posted on how things go. I will keep you in my thoughts and prayers.
Jinny
mom to Austin pws and sws

Hi everyone,
Thanks for the replies and info on lip hypertrophy. Its been awhile since I checked replies to my post as we have been involved in going to New York for treatments. We have just had our second laser treatment with Dr. Geronemus and everything is going well. We had very good fading after the first treatment and are hoping for more once the bruising heals from this latest treatment. I am still concerned about hypertrophy, but Dr. G doesn't seem to think that this will happen because Dennis's PWS isn't extensive and seems to be superficial since we had good fading after one treatment. So I really hope he is right, although only time will tell. It is still good to get all this info on hypertrophy in case it does happen. It seems there are alot of different treatment options for the lip. This is the first I've heard about the YAG being used inside the lip. Let me know how it all works out.
Thanks again everyone,
Dennis's mom