by Elizabeth » Wed Jan 24, 2018 7:03 am
Welcome,
I'm sorry you've joined us but glad you found us. Thalamic location is a very deep, tricky location. Since surgery is currently the only treatment for cavernous angiomas, ideally your angioma will never bleed again and hopefully you never need surgery. Since they don't know why angiomas bleed, its hard to "avoid" a bleed. Generally we suggest, no blood thinners of any type(advil, alleve, etc), no rollercoasters, and no scuba diving. Finding good doctors can be challenging. Depending on where you are located there are a few "centers for excellence" that you will find more knowledgeable doctors at. Read the newly diagnosed section of the main site, lots of good information there since it is advisable to learn as much as you can so you can advocate for yourself. You can search old threads here and find lots of good info too. From what i hear, most of the recent activity has moved to Facebook...I'm not on there but I hear that's where most everyone went. There are a few others that have had thalamic cms. Patti is one person that had a problematic thalamic cm and Lynn had one that had to eventually be removed. I'm sure there are others, but those are the 2 ladies that I am most familiar with. If you search here for thalamic you will find a lot of posts. Best wishes!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery.
http://www.thankfulforeveryday.blogspot.com