WOW yesterday was rough!! So I go to my appointment and got really good news ( I hope ) i was told that my malformation is not called an AVM but it is called a venous malformations because blood is flowing threw a large vein that is not attached to any arteris that would cause pressure. On the MRI it looks like it could have been attached to arteris but in fact it is not, so this means that my enlarged vein does not have any arteris to cause the high pressure and danger. The bad news is that they were running tests on me and used lights to look behind my eyes and gave me a migrane that could of knocked the HULK over. I was throwing up and crying until 2am because of the pain. In Addition they told me that the enlarged malformation is deep within my brain and that they really wouldnt want to do anything about it because the risk of the correction is greater than the risk of leaving it. The are telling me the odds are really slim that my malformatio will bleed but i still get the migranes and I had that seizure and still have no answers!! I wish i had answers and not "wait and see results"
What should I Do?
Thank you all for your support my next step is to see a neurologist any suggestions in the boston area?
They are telling me the malformation is not dangerous but rare. I feel as if they are telling me its rare that we sit it but dont worry about it (am i the only one who is concerned)
the doctor also said that they dont think the migranes and seizure had anything to do with the malformation!!
i am so confused i really thought i was going to get answer and i almost feel like a liar because i was told it was an avm now they are calling it something different!! = (
Okay, that’s a really confusing appointment and I don’t blame you for being upset. SO overwhelming!!!
Read this: http://www.brain-aneurysm.com/cm.html
Do you think that is what it is? Because it says that it CAN cause seizures and headaches so personally, I believe that the two things have to be related. Just remember that there really is so much that they DON’T know about these conditions.
I think you need way more info and possibly another opinion. Hopefully someone on here can give you a good doctor referral in Boston.
I am thinking of you Melissa because I would feel exactly the same as you do and it is just so hard to deal with.
Well definately a VM is still dangerous. I don’t know the complication rate or the risk of bleed. But a VM is still basically the same kind of malformation as an AVM, just without the arterial component like you said. So while the artery isn’t shunting into that vein and causing it to increase in size under pressure, it still IS already large. And my understanding is that the enlarged vessel is still less stable than a normal sized one. (Julia is a member on here with a VM in her face. She may be a good person to contact even though yours is in the brain.)
Where was your appt? Are the docs specialists in AVM’s? How many have they seen in their life, much less treated? I think you are right to be concerned. Especially after they said that they don’t think the migraines and seizures are related. I mean really. Seriously? Any logical person can see that it isn’t JUST a coincidence. Even if they don’t think the VM is causing them, there has to be a correlation between the two things.
I don’t have any real medical knowledge and wouldn’t want to imply that they are wrong in their diagnosis or treatment options offered. But having said that, I would still encourage you to get a second opinion and make sure you are seeing people who are experts in the field. They may have a different “risk tolerance” when it comes to potential treatments. And maybe they don’t. Maybe they say the same thing as the first docs did. But then you will just be able to feel more confident that leaving it alone is the correct thing to do.
Good Luck! Educate yourself, ask questions, and demand answers. Don’t let them leave you confused and feeling unanswered.
melissa i dont have any advise but i just wanted to say, you shouldnt feel like your questions are answered. demand that you are given appropriate information. make sure you educate YOURSELF.
we are all here for you.
stay focused and be strong xxx
seriously all of you are the best thing that ever happened to me… i actually feel like there are people out there who understand me and dont call me crazy because i feel like something is wrong even though doctors are telling not to worry about this large vein in my head seizures and migranes
AVM/VM… Either way, you’re still welcome here! Ultimately it doesn’t matter which it is by definition, the fact that it is causing your discomfort and trouble is the important part, right? My very first thought upon reading your report from the doctor is that it sounds like a good chance to get a second opinion. I’ve mentioned it on the forum before, but when initially diagnosed with an AVM, the first neurosurgeon that I saw did not want to touch it and threw some random statistics at me about how safe I would be if I just left it. He said that for every year that goes by without any trouble, the odds of there being any trouble from my AVM is cut by 50%. OK, great news, but 3 years later and there I was spending a week in the epilepsy ICU. Next doctor says he doesn’t want to operate and refers me to another. The next doc, a gamma-knife specialist, says that gamma knife isn’t for me, refers me to yet another neurosurgeon. This guy says that the AVM is deep and somewhat risky, but it probably worth the risk. He also believes that the AVM is on the vein end on a group of capillaries. I have the surgery a month later and it turns out to not be a vein, but a hefty artery and says that if he had known that it was an artery, we would have operated the day he found out. Dr. Kim, while almost by a fluke, probably saved my life.
Thank you for responding to my thread. As you probably read I too had an AVM that bled. My AVM was not spotted before hand so when it bled no one knew what was happening. I NEVER had any symptoms. You mention about the seizures and migraines but I never experienced any of these. I hope this helped you a little. I wish you health and luck!
HI, Melissa. I think you should definitely talk to other vascular surgeons. I don’t know much about VMs, but it sounds like the doc you went to see doesn’t know much either!