Vascular Birthmarks Foundation Forum - View Single Post - Any members with vascular malformation from Ireland/UK?
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Old 10-18-2011, 03:01 AM
kaykay kaykay is offline
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Join Date: May 2006
Posts: 232
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my PWS covers my chest neck, chin, bottom lip left ear , left cheek and extends into the scalp almost half i think. internally, the inside of my left cheek gum tongue and throat but not bad. Born with no tonsil on the left side.

Its always swollen but thats natural progression over the years. I have a lump under my jaw i think is a pernamently swollen lymph glad. yawn too big and it may stick . that can get kinda scary as it hurts.

Patch on the back is no problem.

Hoarse voice ? ok that happens when i yawn alot or drink cold water. Feels like my throat getting tight and sore.

No problem with liquor

ok. I'm not that bad. my "flare ups" haven't happened for a while thank goodness. last year from august straight to january and had problems every month. This is the longest i've gone for a while.

My left ear is pierced but i no longer wear earrings as i thought it was causing the fever. Birthmark gets swollen real bad. its nothing to do with food or hormones as far i can tell. When you mentioned your problem i was very curious. I was in my 20s when it first started. no idea what i did. had a tempt just short 104F, terrible pain, swelling. takes days to go down. about 30 when i linked it to phyiscal activity. i ringbarked a tree had my neck at a awkard angle. before i got home pain swelling stiffness fever started to set it. lymph gland by the collar bone gets soooooooo tender and painful. Other time i was doing some work on the ceiling and then sometimes i am just not sure. I've had problems brushcutting the yard. My ear drives me nuts sometimes and i forget sometimes sticking my finger in it and playing with it. trips it up.

So i have an idea. I try to be aware on how my body is when i'm doing someting and stop first sign of trouble. I have also started to recover a couple times and slipped back a week later.

i'm just really really glad i've had a break from it for a while cause i find it very frustrating as there seems to be nothing else to do but rest, keep up fluids, ice pack and wait for swelling to go down. I don't bother going to the doctor as they all just give me tylenol and Olfen (muscle relaxer) that don't work. When its really bad i'm in the warm shower most of the day fighting off chills.

From the MRI, my doctor thinks the reason i may have problems is the blood flows to my head/neck fine but it may not be returning as it should and this may trip things. I dunno i would really like to find out.

thanks for the info. I haven't read it anywhere persons with similar problems I'm sorry its an every day occurance for you. I honestly would not have the patience for it

i have problems speaking clearly, i drool alittle when i talk and never drink soup in public. Positive is that i have very little hearing or none in my left ear and its helpful when people make stupid comments and i sleep on my right side helping to block out the noise.

my left jaw seems to pop in an out at my leisure. not bad.

this drama alls started before i started using birth control pills. so thats got nothing to do with it also.

I'm guessing that there's no way it will stop, just need to manage it.
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