I was diagnosed this past May with an AVM in my left temporal lobe 3.5cm. I have had headaches and migraines for a long time I can remember having them as a young teenager. My mother always told me it was because I didn’t wear my glasses and the strain was giving me the headaches so I believed that story for years! The year of 08-09 while I was pregnant with my second child I would get these like floaters in my eyes and had a hard time seeing out my left eye and then it would turn into a massive migraine. I had gone to see the eye doctor and told them about it and they never had an explanation for me so finally I started pressuring them to find out what was going on. So this past year about April 2010 my eye doctor sent me for a field exam and that came out normal so he decided to send me to a neurologist where I live he ordered an mri and I had gone to FL for vacation and when I had returned seen a bunch of messages on my answering machine saying I needed to contact them asap that it was urgent. Here I am thinking I had a tumor or something I was unsure but I was nervous! I went in and he had told me what was going on and diagnosed me and sent me for a mra and referred me out to a neurosurgeon in a bigger city. I waited two months to get in and see him. I went in for my first angio in July. After that I was good after I recovered but I get a foggy memory and can not remember some of the most typical easiest things to remember on a daily basis. He is sending me for an eeg this month to see if I am having intermediate seizures. I meet back with him and another dr who is going to preform the gk next week. I am extremely nervous about what is going to start happening. They want to do the first embo and then do another angio to see how it is draining because right now it is not draining well at all which is creating a lot of pressure, Then if the drainage is good they will send me in for the angio/gk, if not I do one more embo before the angio/gk. He moved my appointments up because all of a sudden I have been getting these extremely sharp pains in my head followed by the migraines, also I notice if I get really upset my face goes numb and sometimes my hands and feet are starting to go numb. Has anyone else ever had any of these issues? I am just wondering if anyone can give me some good advice that maybe the doctors haven’t told me or to tell me about the experience and what I can expect.
Hi Sara, Welcome!!! You have come tothe right place to reach out -->as you can see from the number of amazing members on this forum - you are not alone!! This forum has helped me so much since discovering my AVM back in FEB!!! One thing that I have learned is that everyone’s AVM experience is very unique and the treatment plan does vary based on each individual diagnosis. Sounds like you have a good team of doctors and the advice I would give to you is to ask any and all questions that you have to your doctors and to remain as positive and as strong as you can thru all of this. Sorry, I am not able to be of more help but you’ll find alot of good information on this site and will friend you so that you can read more of my AVM story.
Many blessings to you Sara!!!
Hi Sara. I did a search on here for you…