Any members with vascular malformation from Ireland/UK?
Hi, Im Niamh, 32 year old female from North of Ireland, with vascular malformation on left side of my neck, and a further VM on my left jaw that developed after surgery 11 years ago. After a bad old time of it in the years following the not so successful surgery, ive finally plucked up the courage to seek possible non-invasive treatments. My neck swells at so much as a sneeze and is restrictive and painful alot of the time, and the VM on my jaw (which i didnt have until my surgery) is swollen all the time, which I am very self conscious about.
I was impressed with the recent reviews on bleomycin, but my hopes were somewhat dashed when my vascular consultant in Belfast advised me of limited success in any area of treatment. Well, ive been referred to london (dont know yet who with or when), and I was wondering are there any members in Ireland or the Uk who are in a similar situation to myself or have encountered any pioneering vascular specialists who fill them with HOPE?? I find it frustrating that seemingly nothing can be done!
If anyone would like to contact me my email address is firstname.lastname@example.org , it would be great to share some frustration, or even better, some success stories! Also, I would love to hear from anyone who has tips on how to manage their VM in everyday life. It would be nice to bounce ideas of someone who knows what its like.
Hi and welcome!
This forum is a little slower than the ones above, but if you'll be patient, you might get a response from someone who has the experience you desire.
I have this problem sometimes an the only way i can explain it is like i strained something. tenderness/high fever after an activity within less than an hour or couple hours after. when its really bad i'm flat on my back for a couple days. its also happened after coughing and sneezing alot.
Is your VM on your neck? I think that because of its location my VM is affected so much by everyday things.
It is always slightly swollen but it will swell out immediately if im talking (which i do with much enthusiasm.. i think if i wasnt so excitable my neck would have an easier time of it!!), it swells when im eating (particularly my jaw.. and i hate this because i like eating in company but feel self-conscious.. it feels like theres a golf ball sitting on my jaw), and it swells badly when im exercising, dancing, talking over loud music (i have difficulty doing this and my neck feels SO tight and sore, sometimes i have to give up and not talk on these occasions, the strain on my neck is too much. also my voice goes hoarse almost immediately.. i presume the VM is close to my voicebox??).
It also is so sore tight red and swollen when im angry, nervous or aggitated. And.. (the list goes on.. are you sorry you asked yet?!).. bending over to tie shoelaces etc, lying flat with no cushion/pillow is a complete no-no and so on.
its with me every minute of every day.. lets put it like that.
Oh, and Alcohol affects it alot and the next day i pay for it!
And to answer your question about getting up in the morning.. every morning is painful to a greater or lesser degree. at best im uncomfortable and feel heavy and stiff. at worst lifting my head of the pillow is agony and may take to mid morning for it to become bearable.
I think the hardest thing to deal with is that you can never predict what way it will go.. why is it that some days (very few, mind) its not too bad, and others its terrible.. i dont do anything wildly different. i know its very much linked into hormones, no doubt about it, but it seems to have a mind of its own. Its getting worse as the years go by.. i worry about times to come.
What sets your Vm off? Id be interested to hear. How do you manage it? Do you see a pattern in flare ups? I was emailed by a guy through this site who recommended cutting out sugar in the diet.. admittedly this i havent tried in the past (i have tried no alcohol etc) so im always excited at hearing new suggestions.
p.s forgot to say something positive!! I dont get fevers at all.
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 :D
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.
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!
yes i also have grommets in that ear. if my headphones are up high i can hear something but to me hearing is jumbled as if i am underwater, even with one good ear i still have problems. My ear doesn't feel sore unless something presses on it too much or it folds. on occassion my doctor has syringed my ear, feels fantastic, hearing opens up for abit then back to normal.
i dunno, if birthmarks are "Nerves Gone Wild" then i think the body can react anyway if the messages aren't being sent out right. swollen lymph glands are a sign of infection right ? are they swollen in your neck when you have problems ? I do not understand it LOL
I think the MRI report said something like alot of lymph like nodes present.
Headaches yes. horrible. I really shouldn't be in the sun too long but i get spasms in my neck alot an that usually causes them.
When i get really hot i can look down and see my cheek pulsing.
People. well, take each asshole one at a time lol. school children, i try to avoid times when i go out and school is over. I wanna smack most of them. I ignore most of them or delibratly stare back and they know it. I always have shades on cause my eyes are alittle sensitive. Adults, nearly knocked some teeth out for very agressive behavior, very short temper when people are like that. I tolerate questions , depends on how i am approached, i react. I ignore looks.
last week at guy very politely asked me what i had. Did i have question god why i had it ? told him no cause i am a atheist. :D I had no problem until he asked if he could pray for me, asked my permission. told him again and again he could but just not now he could go somewhere else and do it and i thanked him but he just couldn't seem to let it go and finally he gave him. I was alittle pissed. he was kinda cute ha ha ha ha ha ha but damn i told you thanks but more on. bad enough my breakfast was being disturbed
i had gall bladder surgery 4 weeks from today. i had three people pray for me. two persons asked. no problem, i even accepted a rosary. but visiting hours, were terrible. i had zero sleep in that hospital an grumpy has hell. eyes closed ignoring everyone and suddenly some guy is tripping off praying then all up in my face asking me whats on my face. now if i had a metal bed pan people would of been asking him the same question. thats just damn disrespectful. i was really stern and pissed off like and lied,told them i just came out of surgery i was in pain and i needed to pee. LOL they stayed far from me the next day.
also, had the sign of the cross made to me once. i didn't know if i should burst out laughing or cry. i laughed. it was just too funny hissing at me an stuff. she wasn't right in her head.
i had this young woman, grabbing my arm rubbing it, all glassy eyed high on something I am sure, telling me she loved me. ok, thats just weird, uncomfortable and anything above the elbow is molestation according to law LOL mannnnnn i pulled away and got the hell away from her.
i don't pretend i am ok with my birthmark. I think thats lying to myself, I know i have it, i can't hide it or do anything about it. Every time i leave the house i know i am gonna meet atleast one stupid person but when i am in a good mood i couldn't give a damn. Yes i've had people stare/gaze at me while talking to me. its weird when it goes on too long i don't think they realise it. Some people think i can't talk or are afraid to ask me and asked my mother instead. i think she gets more pissed off than me.
talk to me nice i talk to you nice i'll even educate you alittle but anything other than that i usually start ignoring and walk away because they are just stupid.
I think it would be disappointing to go threw surgery and nothing comes if it. As you know though, doctors really don't know much in this field or they are far and few between. I was really glad to finally see experts at the VBF conference last year. first time in my laugh. but i didn't have my mris then so that kinda sucked but still really glad i went.
HI, you all sound a bit like me too, I have an AVM in my right cheek and neck, had it 22 years. Went into anaphalytic shock when they used a treatment with alcohol in it, so none since!!! mine swells just writing my name down, I have passed out during a gym sessions on the running machine, pushed myself too hard again and my face won. I left the RAF because of it. i have a droopy face, scars and have had 25 operations. Getting pregnant was the worse as it swelled so much it was operated on as soon as i had my son. Nerve damage has been bad. but prayer got me through that and many tablets. I have tried so much and still trying, in sept had schlerotherapy the foam one, been in more pain, but it has worked for some people. I have a normal life, make stories up when people stare or i am not in the mood to answer questions. you only have one life so live it is my moto. if they are your friends they are great. vicky
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