I dont have an AVm diagnosis. I also have not seen the proper dr for it yet . My arteries i have been told look fine but that one side is more dominant on one side basically doing all of the work for both Hemispheres. I am due to get a venogram on September 10th. The CT scan with the contrast showed the vein flow dominance …or whatever you call it . I do have dizziness and vertigo and very intense head pain. If I move a certain way and driving is especially difficult for me…when questioned about my head pains (up until this point I was diagnosed with unspecified migraines type) I was told by a head pain specialist neurologist…that if I had an AVM it would hurt all of the time not just with movements. She wants me to try myofascial release massage and also do the venogram to look at the back or the head veins. My CT with contrast the drs I’ve spoken to recently this one believes that I actually already did an angiogram because she could see the arteries so well. I guess I am confused because I thought the CT with contrast was different than an angiogram. The way the head pain specialist explained it to me based on my PT (she was thorough and at least knew WTH PT actually IS and did diagnose me with Pulsatile tinnitus) she said the arteries don’t sound like they are my issue that if I did have a physical issue causing the pain and sounds it sounded vascular.
I should also note that I have been diagnosed with vasculitis of the extrememties and Raynauds etc. I have also had a form of colitis requiring hospitalization years ago that was an ischemic colitis…lack of blood flow. Which is a very odd thing to happen at age 31. Since when i am in the most pain with my head pains it often feels like I am passing something i get such a pulse directly in time to my head throbbing. I am wondering if those of you who were symptomatic with AVM did you experience pain like this only with certain movements …my current dr thinks I am having intended enough muscle spasms causing all of this but she is still doing a venogram. Would an AVM hurt all or the time like she seems to think?
I will not speak for anyone else, but for me, I have had an AVM rupture in my head twice. The first was a catastrophic rupture, forcing me to pass out, throw up, and be placed effectively on life support while the doctors operated. I went through 3 months of intense rehab to relearn to walk, talk, read, and write. That was my “major bleed.” The second rupture was more “minor” with it rupturing only to the point that the blood showed the doctors where to trace the vein to in my skull. Again, I would strongly recommend consulting with your doctor regarding the headaches you are having. It may be simply migraines, or it may be something more nefarious. Hope this helps.
Thank you! It can be difficult i am finding for doctors as well as us, the educated lay people, as every dr seems to have a different opinion and the fact that I am having to self pay for everything makes it more complex and they are less likely to want to do tests. And yet , from the stories I am reading many people have had to pay out of pocket anyway even with insurance because it doesnt want to cover diagnostic testing for things like this.
For some types of avm they can be hereditary hht for example. www.curehht.org For others they are less certain. This is why I strongly suggest talking with your doctor to possibly get a referral. Hope this helps.
I think there are all sorts of vascular anomalies that could affect blood flow in your head, so whether you have an AVM or a diminution of an artery or vein or a blockage or what, I’ve no idea. However, I think you need the right kind of doctor to investigate.
I think initial investigations may be best led by a neuro radiologist or by a neuro surgeon. I’m not clear what discipline of doctor you are currently seeing but what you’re saying here is not encouraging me that they know really what they are looking at.
Thanks appreciate it. This dr is a neurologist specializing in headaches. She gave a diagnosis of occipital neuralgia. And said I may have some genetic anomaly with the veins in the verterobasiliar area in the sinus veins in back of skull. I had asked her receptionist if this particular dr had ever diagnosed an AVM or had experience in that she said yeah but who freaking knows. I may have to travel out of state or to New Orleans to find one but I do plan on doing this test to investigate because if nothing else it would show I’d those veins back there have been blocked or involved.
I am a big, big fan of second opinions because one did save my life (not the AVM, but cancer, more than three decades ago now). I’ve seen here recently that the Barrow Institute can do a second look at your images for $150 and you don’t even have to travel there.