I'm a newbie here. This is my first post!
I Just got news last week that I have a 2.3cm AVM on my left temporalis muscle. I can't find very much information on AVMs that aren't located in the brain. I'm looking forward to seeing if there are others like me out there.
This is my second AVM. My first one was 4cm and located in my neck. It would blow up blue like a balloon when I would get excited or when I'd work out and my head was lower than my heart. That was removed successfully in 2002. Back then I couldn't really find any information on AVMs and frankly I forgot about it.
I have an appointment with an AVM specialist at UCSD's Neurosurgery department later this month. BUT I have sooo many questions before then.
I think I noticed the "lump" on my temple 6-7 years ago. Of course whatever doctors I saw told me it couldn't be another AVM... Every so often maybe 1-3 times a year or less it would enlarge and harden like there was a little rock on my temple. It would hang out for a week to a month and then dissipate. What was it doing and why did it do that?
Beginning of March this year, I had a terrible headache for three days. It was so bad I threw up (which I have never done before) and then a few days later the lump was there again, bigger and harder then ever before. It stayed for over two weeks. Sleeping was really difficult because the lump hurt worse at night. Why did it do that?
I'm 39 years old and I have a 4 year old daughter and a 17 month old son. I'm assuming that since my AVM isn't in my brain that my AVM isn't life threatening. Again this is my assumption. I don't know the risks or the symptoms or treatment for extracranial AVM! I honestly have a million questions and would love some insight!
So if someone can help me shed some light on what I'm experiencing that would be super awesome.
Hi SalBella :) , and welcome here, I have done a search for you that may help a little :
and also I have featured your discussion and broadcast it to try generate the community to comment on it, I'm sure there will be some of our members that have been in this situation. Thanks and hope your well.
How did you find out? I would go to a neurosurgeon for my treatment. Attend to right away for they don’t heal themselves.
Hi, I don't have all the answers, of course, but maybe I can help a bit. When your AVM swells and gets hard that is due to portions of the malformation thrombosing (clotting off). The clot is initially hard and results in a local inflammatory response, partially responsible for the pain. Unfortunately, simply clotting a bit does not cure any part of the AVM so when the clot dissolves the malformation is right back in business. As your experience shows, this can happen repeatedly.
If the whole AVM is extracranial (outside the skull) you are probably right that it isn't life threatening, but your doctors may well order an MRI or other test to fully evaluate the extent of the lesion... of course, it is still bothersome to have it so symptomatic.
You are in a good area for care so take comfort in that. You had a malformation removed previously? Are you still in contact with that team?
Hope this helped a bit
Thank you Martin! Much appreciated!
Thank you so much BCF! Your response is very insightful. So the clotting causes the lump. Makes total sense. The AVM on my neck I could control at random. I knew how to make it pop up and I knew how to make it go down. If I raised my arm above my head and patted the blue lump, it would dissipate.
My last AVM was treated at Kaiser in Woodland Hills, CA (Los Angeles) and removed by a vascular surgeon. He didn't know it was AVM until he removed it. Not very interested in going back to him. His bed side manner was something to be desired and he literally just sent me on my way and never really told me much about AVM or what the future might hold.
I have had a CT scan and an MRI over the last 2 months both confirmed the new AVM. I guess I'm worried that one of the feeders might be an important artery. The last lump I had gave me the worst headache ever that made me throw up and then I just didn't feel like myself for about two weeks. No energy, irritable, severe anxiety, shortness of breath, nothing tasted good. It could have been anxiety with the lump or who knows what else, but that's when I decided I needed answers for this "friend" on my temple.
My appointment isn't until the end of May so the wait is driving me bonkers. But I guess I waited this long another few weeks won't be so bad.
Good luck then :)
BTW, no critical arteries typically feed the temporalis muscle... it is fed by branches of the external carotid artery.
Good to know! Thank you so much for all the great information.
You are getting really well-informed answers here! Pregnancies def made my VMs worsen. We have more blood circulating when we are pregnant, both times the VM improved when the baby was born but it was at a worse level than it had been pre-pregnancy. The other cause of this is that we have progesterone "the pregnancy maintaining hormone." It causes us to bleed more; I recall horrendous nosebleeds. My kids are adults now.
Don't do this on my advice at all. But I was told to take a baby aspirin a day to prevent thrombosing. It has worked. But you have an arterial component, arteries have higher pressure and blood can spurt. So this may well be terrible "advice" and I intend it just as a story of an unexpected improvement. I thought I was causing the thrombosing.
Not to minimize your situation, but cancer is ruled out and so is an intra-cranial AVM. Perhaps the surgery temporarily relieved the situation, but then a collateral circulation built up.Been there/done that.
Consider an Interventional Radiologist. They do an arteriogram and then follow the "map" to see feeding arteries, nidus, etc.They don't cut; they use foam/glue/alcohol to block the vessels that feed your AVM. But perhaps IR is not used near the cranium. Not giving expert advice. If you make the appt now then you can always cancel it if you decide to go with neurosurgeon.
I'm short on time but I do want to make some alternate suggestions to what you are getting here. You shouldn't be seeing a neurosurgeon for treatment, but someone who treats facial AVMs regularly. Facial AVMs can be extremely aggressive and do not behave the same way brain AVMs work, so while they won't cause the same kinds of problems, they can be very dangerous as well. There are three reasons I can think of why you have discovered a second AVM: 1) you're very unlucky, 2) they did not get all the neck AVM out, and this is somehow related to the other one, or 3) you could have one of the diseases that cause people to develop multiple AVMs. There may be another reason that I'm unfamiliar with. There is a very active facial AVM community on Facebook -- I'm happy to share the link if you want. I can also share some providers who deal with TONS of facial AVMs, but cannot recommend one in particular. Do get multiple opinions, whatever you do, from multiple providers.
Re pain worsening at nite, maybe you should sleep with your head above the level of your heart? I use a wedge pillow myself.
I agree with Em @ the special needs of a facial AVM MD.
That headache, with the vomiting, could be a sign of increased intra-cranial pressure. Or is could be a simmple migraine esp if you could not tolerate light (photo-sensitivity). All important details to report to MD.
Thank you for your reply! I definitely appreciate getting other perspectives and will research the IR treatment.
My temple definitely flared with both pregnancies. I even had a CT scan after my first child was born in 2013 and it came up negative on AVM. I had the CT when the lump was flat as a pancake. I know it was there!!! In March when it came back with a vengence I insisted I have tests ran and knew it was something other than TMJ, which is what my doctor though it was. My doctor had me on muscle relaxers and anti-anxiety medication which made me feel like jello, but did not make the lump any better or less painful. Stoked I stuck to my guns and got further tests.
I read that IR can cause necrosis in the surrounding tissue. But I'm thinking that's worse case scenario.
Thank you so much for your response Em!
I would love the link to the FB Facial AVM community!
I wish my luck was good with the lottery and not AVMs... :)
I will need to research facial AVM specialists in San Diego. I haven't come across any in my research so far. Would love referrals if anyone has any. Los Angeles is close by too and that's where I'm from and where my family lives so that's an easy commute.
I will be getting multiple opinions.
Thank you eileen for the reply!
I took an imitrex for the first time that week of the headache and it helped. Never had a migraine quite like that before so I somehow feel they are related. Who knows...
My 17 year old daughter now has four AVM extending along the entire lower half of her face. We expect embolization of all AVM and after that a surgical operation which would be removed all nidus. At this moment our neuroradiology lack in embolization reagents, and we waiting. I expect that her first embolization will be for 2 weeks.
Our problems began when she was 2 years old. Her first AVM was in the masseter muscle. Until now she was operated 7 times, 2 times embolization were done, all without success. The consequences of previous treatments have hearing loss, resection of part of the jaw bone, a large scar on his face.
Treatments in the US and Europe are different. Doctors in the US are doing a large number of embolization with different reagents, in Europe it is a small number of embolization while doing surgical operations and removed all the problematic blood vessels. My opinion is that the European treatment better, but a small number of clinics it works. The only clinic in Europe that has accepted to look at my child's is clinic in Tuebingen, Germany. Unfortunately we do not have money for them, so we have to wait for the intervention in Serbia. I belive to success
I recommend that you inquire about the well doctors, how they work, it might be better to have a scar on the face than the years go through the same horrible operation. The extracranial AVM are not dangerous like as one in a brain but AVM could be very unpleasant, particularly on the face because it looks. AVM is very boring and my opinion that this is something for whole life. It would be nice that I am in wrong but every letter here said that. The external carotid artery feed your AVM and I think that your condition is not critical.
Sorry for my English, I speak a different language, but I hope that you understand me.
I wish you all the best
Katarina from Serbia
Quins; I AM sorry for your daughter's AVM issues. I don't know the term "well doctors" and I would love to know what you meant. Maybe a typo.
I like to believe that some AVm'ers are "cured" and enjoying life too much to be on online support groups.
My friend from birthmark.org "KayKay" flies up from Trinidad to NYC yearly for her facial AVM treatments. It is surgical with major debulking. She has a foto blog to see the results; big improvement, but far to go.
"Madere" is no longer here as a mod; but she left volumes of info @ Head and Neck AVMs. Do a search.
And birthmark.org presents access to many MDs. I don't have specific expertise at all in this area. I can only hopefully point you in the right direction.
Sorry, I want to say - the doctors with experience. Mostly of doctors think that they know everything about AVM, but every AVM case is different from person to person. I can not speak English very well. Still again, sorry because for my bad knowledge of English.
no problem and I'm glad it helped, There seems to have been a few replies since my actions. Thanks
It is significant that the imitrex helped. Makes me think it was just a horrible migraine.
I am a migraneur; but I had a bad headache that lasted several days. I kept taking my BP, no elevation. nO reason to think concussion. It was probably hormonally related?
Looking back, it could have been leading to a stroke. Not a good judgement on my part.
My only point is that sometimes a headache is a headache. Nowadays, I'd call my nurse navigator available 24/7.