PWS and Periodontal work - Vascular Birthmarks Foundation Forum
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  #1  
Old 04-25-2004, 05:53 PM
kreis
 
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Default PWS and Periodontal work

Hello, my name is John, and this is my first post here.

Let me start by saying "Thanks" to everyone involved in this community. I just started researching PWS's recently and have discovered a wealth of knowledge in these forums.

I'm 34 years old, and have a PWS covering the right half of my face from the hairline down to and covering my upper lip. Like many others here, at the time of my birth there weren't many treatments available, and the PWS was left untouched. I had, and continue to have, the same experiences that seem to be the norm for anyone with a PWS.

I've tried different lasers throughout the years, I gave up on having the treatments in my mid twenties, figuring that it's a part of me, it's mine. If people have issues with it, I'm sure they'll have bigger issues with me, once they know me.

But I digress... I'm here to ask about Periodontal work.

Recently I have started to have some major dental work done. I have a rather acute case of Ginigivitis, which I will attribute to my 18 years of being a smoker. I'm quitting....but that's a different website ;D

My dentist referred me to a periodontist. The Doctor is concerned about the vascular layout of my gums. He noticed that there are major differences in my gums on the side of my mouth that the PWS resides on.

He's suggesting that I get an angiogram done so they can see the layout, because otherwise I run the risk of him doing work that could be potentially harmful. (E.G. working on my gums and hitting a heavy 'pool' of blood vessels, which could cause severe bleeding.

Has anyone else here had gingivitis with relation to a PWS?

I look forward to any questions, answers, and comments that you may have....

Thanks,

John
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  #2  
Old 04-25-2004, 07:20 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re:PWS and Periodontal work

John,

My name is Hank I am a 21 years old and have some of the same problems as you.

I have PWS, and Hemangiomas on my face and skull. The biggest H is on my right upper lip. I also have PWS on my upper jum, which in the proccess of being developed, all my top teeth where shifted over two places to the left. I have had major dental surgery, braces, wizdom teeth pulled, the works. I now have porsalen glass teeth capped on to the front top of my mouth. Because of my crated artery problem I have always taken on the risk of getting any major cuts on the right side of my face because of the chance of bleeding to death. Though so far I have not had any problems.
I did get some blood thinner injected into me many years ago that was suppose to slow the blood flow in my jum. Has your dentist checked into this? If it provents you from massive bleeding it is worth a shot I think.

I am looking forward to talking to you more.

Hank
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  #3  
Old 04-28-2004, 10:43 PM
cbstover
 
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Default Re:PWS and Periodontal work

My 7yo son (who is also named Jon) has the same problem. His PWS extends into his gums and soft pallate. He will probably need some fairly extensive work done when he is a little older. He has seen a neuroradiologist and had an MRA which did not show any main "feeder vessels" - they are too small to see. We are planning to see Dr Waner this summer. You might want to see if there is an oralmaxillofacial surgeon in your area who has experience with this, before someone cuts into your gum area.
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  #4  
Old 04-29-2004, 12:32 AM
kreis
 
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Default Re:PWS and Periodontal work

Thanks for both of the responses, I've gotten my General Practitioner in touch with my Periodontist to see what the next steps will be. (The joys of an HMO)

I had extensive orthodontal work done in my youth and for the life of me can't remember my orthodontist showing any concern about the PWS affecting my gums, but it's obvious now that it does.

Any other insights are more than welcome!

John

P.S. Good luck to Jon on his treatment!
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