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  #1  
Old 06-12-2008, 12:05 PM
landofdan landofdan is offline
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Default PWS on the gums?

Hello,

i have recently been diagnosed with a PWS on my lip, its been there a while now but didnt really think anything of it, i didnt have it at birth so it has just developed over the last few years.

doesnt really bother me too much as the majority of it is on the underside of my lip, and so is hidden mostly.

but i have redish gums in the same area and the doctor said it was due to the PWS. my gums bleed alot becasue of this like every day and during hte night when i sleep so wake up with dried blood in my mouth in the morning.

was wondering if anyone has a similar thing and is there anything i can do to stop it bleeding or fix my gums so they go back to normal pink colour?

and can this lead to more serious problems later on in life?

i've been to the dentist, doctors and dermotologists and no-one can seem to help me with it.

forgot to say, im going for lazer treatment on my lip, but they said they dont lazer the gums?

thanks,

Dan

Last edited by landofdan : 06-12-2008 at 12:07 PM.
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  #2  
Old 06-13-2008, 04:21 AM
nickbar nickbar is offline
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Dan, if you don't mind me asking... how old are you? It is a related question. It is very rare for pws to show up later in life. I don't know the statistics, but it has to be close to 99% appear at birth. I have met one other adult that shared photos of herself as a child...and NO PWS.

I know there are others with experience here with pws on the gums. They'll post soon.

Corinne
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  #3  
Old 06-13-2008, 07:59 AM
landofdan landofdan is offline
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Hi corrine,

I'm 27 its definetly not been there when i was born unless it was really small and has grown, i keep thinking what might have caused it but i cant fiqure it out.

dentist keep asking me if i've been in a fight and had my lip smashed open, nope i dont fight. im a lover not a fighter!

the only thing i can think of that might have caused it was i had root canal surgery in the same area when i had a abcess or the two corwns on my front teeth but the doctor and the dentist says they dont think it can cause it.

also had sinusitus and other nasal problems but again doctor says they dont think it could of caused it.

im surprised at the statistic of 99%, maybe ive been misdiagonsed and its not a PWS?

i will try and get some pictures over the weekend, and see if i can get one from when i was a child.

see what you think it is?

im going to the doctors again thia afternoon to see if i can get referred to an oral specilist of some sort, see if they can help me.

thanks for your time.
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  #4  
Old 06-18-2008, 05:36 AM
hankbartenbach hankbartenbach is offline
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Hello Dan,

My name is Hank I am 26 with facial PWS with it on my gums.

I do have the problem with my gums bleeding at night. Something that has helped a little is have a glass of water by your bed and if you wake up at night take a drink. My mouth gets so dry because I have sinus problems and breath trhough my mouth when I sleep.
I have noticed lately my gums are bleeding more often for no reason, probably because I have been delaying getting a root canal thru another one of my glass teeth. Last one cost me $400.00 to get done.

I personally have never met or talked to any other person that did not have some form of a PWS from birth. If yours is a PWS it could just mean it has never been visable enough for you to notice, but the doctors should have unless it has been internal. I have PWS on my gums, pallets, throut, nasel area, I have devated septem, and a lot of other place as well.

Have you ever had a MRI with contrast? If not it probably could not hurt just to rule out anything ad normal.

When did you first notice the problem with your gums? When you say few years was it really early 20's?
The reason why is that some doctors believe hormons have something to do with PWS growing.
Three different guys (myself included) all started having growth problems at the age of 21 or 22. Our hormons might have made our PWS grow. All three of us also have Sturge Weber Syndrome as well so I do not know if that makes any difference.

When ever I go to the gym my PWS turns darker and I have heard of others doing so. Do you notice when you are active or get your blood pumping from being stressed or anything make your gums bleed more?
Body heat defently makes a difference as well for me.

I hope you find some answers. If you have any other questions just let me know.

Hank
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  #5  
Old 07-17-2008, 03:07 PM
landofdan landofdan is offline
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Hi hank,

Thanks for your reply, sorry its taken so long for me to get back on here.

it sounds like you and i have some similar problems!

i have sinus problems and 2 porcelain glass crowns both of which have abscessesí!

So I breathe through my mouth at night causing dryness, due to sinus problems
and have a deviated septum and a perforated septum too, which causes whistling so when breathing through my nose the noise keeps me awake not to mention annoying the hell out of my girlfriend!

Iíve not had an MRI done, i havenít really got any of the symptoms of Sturge Weber Syndrome, maybe muscle problems I get a lot of muscle pain and aching down my right hand side. i certainly donít have fits of any kind.
but doc said it could be stress, and Iím going for a MRI scan of my neck and back on 21st july, to see if i have any problems with that.

I will see if I can get one if that comes back with nothing, I will definitely try and get it checked out make sure its not internal.

With regards to age, yes probably 22/23 its started growing really slowly I guess thatís why i didnít get it checked out sort of slowly crept up on me.

When I play football, i get a proper throbbing through my body like a second singular heart beat, but again could be general fitness problems and stress.

I find it quite worrying really as there is very little info around on people who havenít had it from birth and what causes it. but i do feel a lot better now Iím getting things done.

Iíve been going to loads of doctors, dentist and specialists.

for my lip Ė Iím having laser treatment on the 30th July, hopefully will show some improvements but Iím not looking forward to the after effects, says Iím going to be purple and bruised a lot and could cause crusting/scabbing type stuff. but worth it in the end i hope.

as for my bleeding gums - Iíve been to a maxillofacial (sp?) surgeon and he is going to use a Cryo on the area that bleeds, to sort of freeze burn it, similar to being cauterized?

Nasal problems, Iíve been diagnosed with:-

Post nasal drip
Nasal polyp's on both sides
Sinusitis (rhs)
Deviated and perforated septum
2 types of rhinitis

And some form of chest problem i have to go and see yet another specialist.

But the ENT doctor thins its a form of asthma, as is directly linked to polypís.

i got a load of drops and sprays to take, and then go back again maybe for surgery.

its one of the very few times Iím glad to live in England as the NHS sort it all out for free, so i donít need medical insurance - just have to wait a little longer.

Anyway I think I may be of some help to you.

for your root canal, you donít need to get your crown replaced, they can drill through it and treat it and then plug it back up, Iíve had it 3 times in the last month now, and a 4th time next week (twice on each tooth) . it didnít even hurt, nor did i need anaesthetic as the abscess has killed the nerve! dead easy just took a while to do and cost me around $200 in your funny money for the treatment (i have dental insurance so I can claim most of it back thankfully).

just one more question for you if you donít mind?

Do you find that you nose bleeds easily with your PWS in you nasal area?

I get a lot of nose bleeds and the ENT doc says its because of the perforations, I however think otherwise. But they are the doctors so i will trust them for now.

Thanks,

Dan
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  #6  
Old 07-17-2008, 05:39 PM
nickbar nickbar is offline
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Dan,

I would like to present your case to a couple of experts. Would you be willing to email your information, history, details such as you posted here in posts and any pictures. I will forward the information to a couple experts in the U.S. and find out what they recommend and think about your case.

I just want to make sure you have the proper diagnosis and treatment options

Corinne
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  #7  
Old 07-18-2008, 10:04 AM
landofdan landofdan is offline
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Ok corrine,

i will sort some pictures out over the weekend and send something to you and try an write something out with some sort of structure to it regarding my symtoms and what the doctors have said.

im not sure it warrants much attention though, as my PWS is tiny compared to some people

but i will email them to you and you can judge for yourself, this is all new to me and i know very little.

i take it i email the Address at the bottom of your posts?
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  #8  
Old 07-29-2008, 05:06 AM
hankbartenbach hankbartenbach is offline
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Dan,

Sorry I have not emailed I just got back from vacation today.

Actually I do not get any nose bleeds, but I do have a devated septem. My plastic surgeon Dr. Waner was a ENT at the begining of his practice and was going to fix my devated septem but decided not to and wait until it gave me problems.

I have had one root canal done thru my bridge but it cost me $400 US dollars. I just do not have the money to pay for this tooth to get done now.

My gums have always been very sensative and bleed every once and a while mostly from over brushing but every once and a while I can test it when I wake up in the mornings because my mouth gets to dry.

Talk to you soon.

Hank
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  #9  
Old 07-30-2008, 12:36 AM
nickbar nickbar is offline
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Dan,

I will look for your email. even though your pws migth be tiny, we have experts willing to give their advice that might help you.

Corinne
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