Vascular Birthmarks Foundation Forum - View Single Post - Any members with vascular malformation from Ireland/UK?
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Old 10-18-2011, 09:40 AM
fiafo fiafo is offline
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Join Date: May 2010
Posts: 6
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Thanks for reply!

A couple of things you said have just hit home to me..

my hearing in my left side (same side as VM) is almost non-existent as well.. thats exactly what i do too.. lie on my good side when i dont want to hear anything!! i had vents/grommits as child and have a large perforation now, but not only is my hearing bad, the ear feels sore and almost like infected when my VM is bad. For e.g i went out on sat night with my sister and had all but 3 drinks (whooee! thats a big night out for me after having 2 young children!) and it was quite a stressful day leading up to that. the next morning i awoke feeling tired and abit queasy but worse my neck was swollen and very sore and my left ear and left side of my throat were painful..almost like a was getting flu... ive never thought there could be a link between my VM and my ear/throat!?

I have done alot of my own research on vasc anomolies over the years when i realised doctors and even consultants 'just dont get it'. i work in the medical field so i can understand the basics. from what you said re; your MRI and the abnormal vasc flow causing headaches i can understand, but where do the fevers and chills come into it? is you lymph system involved? that sounds very debilitating.. have your doctors ever come up with an explanation?

and do you mind me asking how do you cope with peoples rude stares and stupid questions? its not the discolouration of mine that is the issue..its the lumps and swelling.. im especially annoyed at my jaw.. im completely assymmetrical. and the worse thing is that VM only appeared when i awoke from my 10 hour surgery 10 years ago. they said it was just swelling and it would go away but i knew it wouldnt. i cant describe my disappointment at that time and i still find it hard to deal with.
i dont mind people asking me outright what my VM is. thats respectful and i feel ok giving an explanation. i also dont mind stolen glances..thats humans for you and we are a curious breed. what really peeves me off is people who stare wide eyed at my VM while im talking to them and literally cant tear their eyes away. i sometimes have to stop talking until i get eye contact again. dont get me wrong, my Vm is def not the worst..far from it, and sometimes on a good day you mightnt even notice it if my hair is sitting the way its supposed to sit and im very calm and relaxed and not eating or talking much or doing any of the other things that aggravate it!
niamh x
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