I have had severe migraines for years! I’ve always thought it was caused by not wearing glasses and such until it got so severe! I was referred to a neurologist who thought I had pseudotumor celebri until my MRI results came back showing the avm in which it looks like the rear right side of my brain… I have been referred to a neuroseurgeon and am awaiting the appointment on 5/9/2017… I am terrified as I don’t know what to expect… I have an mra scheduled on 5/9 as well… also, I wasn’t as terrified about ruptures of the veins and such in the avm but the past couple years the veins in my hands and arms would burst swell and bruise severely and recently a large one in my thing burst… it may not have anything to do with it but scares me as those have ruptured so easily… but back to the avm itself… what can I expect? Have you seen your MRI? Where did it look like it was located? Have you had treatment? If so which and do you have complications? Sorry I am just terrified!
Hey, Crystal,
Welcome to the site. I went through much of what you’re going through in September and October last year and it’s a very scary time but I hope as you get the mra results and the consultant can tell you what it means, there will become a way forwards that is less scary. Honest.
The top and bottom of it is that the AVM is flowing high pressure blood from your arteries directly into the vein network, so the plan will be to stop that happening. There are different ways of treating it, depending on how big it is / how extensive perhaps, whether the connections are very fine or a big bigger, and so on.
I’ve got a Dural arteriovenous fistula in my right occipital lobe and a bunch of “draining veins” on the outside (and probably inside) my head. On the MRI, given my is “dural” which means it is in one of the meningeal layers inside your skull, it showed as a bulge in the dark space between the skull and the brain, moving the brain in a bit, and the doctor showed me white areas where there was high flow blood going on. In a mra with contrast material injected, the arteries and veins show up a bit like a spider – a main tangle of vessels perhaps and the arteries and veins connected to it. I’ve never seen mine on mra but I’m sure if I were to see the draining veins on the back of my head they’d have looked a bit big. They felt very tender. The fistula was in my right occipital, so right hand side, back of head, but with affected veins reaching out past my right ear and on the back of my head, outside.
I’ve just had an “embolisation” done (which I think most people would consider to be a pretty unintrusive procedure, middle of the range of things we might do to an AVM) 3 weeks ago and I was in hospital for less than 3 days. I’m not very brave and it was fine.
The AVM could be influencing some or all of your symptoms (I reckon, not that I’m a doctor) so getting it sorted could be a really good thing. Keeping your blood pressure low is really good, so if you smoke, drink, like chocolate, coffee, etc. cutting those out can help you feel better / take the pressure off.
Hope this helps get you started. Very best wishes… you are among friends.
Richard
Thank you so very much for your reply! I feel as though I’m going through this all on my own and I’m hoping this is a place to turn to! I’ve got severe migraines with weird sharp tenderness on my scalp that hurts just to move my hair… I’ve had headaches since I was in middle/high school and figured it was just due to my vision and not wearing correction… weirdly enough, I wasn’t as terrified about this until my veins in my hands and now my thigh began bursting or becoming more common… i figure if walking burts a vein in my leg, how easy could it be for one to bleed in my brain… I find myself forgetting things that I do every single day for years… such as the door lock code for my employer that has been the same for 8 years… I then just zone and my mind draws a blank! I had a bad car accident in 2012 resulting in a severe concussion and my scalp was severely split open… I then had another in October 2016 and it seems like I can’t catch a break! The past 5 years have been nothing but hell from collapsed lungs, chest tubes, lung surgery, and now this! I’m truly terrified and at my wits end! Thank you for the support!
My MRI showed what looked to be a golf ball sized wad of tangled veins in what looked like the back right side of the brain… I’m hoping to get a better description of it from my neuroseurgon…
These are pictures of our sons AVM he is 17. His is a grade 2 it’s just under 3 cm and is in the motor cortex. We are unsure as to what treatment we will do each holds risks for him, keep in mind all AVMs and treatment are different for each person. Good luck!!!
Hi Crystal, you’ll find this a great site I’m sure. There a lot of different experiences for sure, a lot of similarities and a lot of differences in these things! Mine is a grade 2 in the left temporal, small but in a difficult location as it is deep. I had no idea I had one until my bleed last May, I was 48 at the time. Six months to the day of my hospital admission I had gamma knife, which is 24 weeks ago and now I wait…hopefully your upcoming appointment goes well and recommendations from the doc and hopefully treatment options can be discussed. Certainly be prepared with lots of questions! Take care!
Crystal:
You truly are not alone on this site! I would like to say welcome to our AVM network. You will gain so much information from this site. You will find that we all travel a different path on this AVM journey but we will be here to help you as best we can. My AVM ruptured in Nov. 2014. Although I’ve had MRI’s, MRA’s, and Gamma Knife, this disease is very much a part of my life. It doesn’t consume me as it did in the beginning, but not a day goes by that I don’t think about it. I still have vertigo; my balance is sometimes off, my short term memory is not as good as it was, but my long term memory kicks ass everyday! Sometimes I’m amazed at some of the things my brain dredges up. I’m alive and Blessed and you will be too. Pray, be patient and I wish you all the best.
Sharon D.