Is there a doctor out there who can give me any information about this disease. Including theories of what may have caused the initial benign right side atrial myxoma that caused the stroke in the first place. It seems that the piece of myxoma tumor is causing my brain cells to behave like tumor cells. I’ve already had some cells cause a ruptured blood vessel.
The link below is the best information I could find. Understanding the rarity of reported cases (from the first case in 1966 until 2013 only 50 cases were reported ) I’m not expecting a cure or even a treatment. But if you happen to be researching anything similar , I’m happy to help by talking about the things that are medically unusual about my body. My neurologist is reaching out to other doctors even in different specialties. But rather than sitting back and waiting for him to save me, I need to feel like I’m doing something to help.
Yes, I am one of those horrible patients who thinks she can help, but in this case I can. Let’s help each other. I CAN HELP!
Unfortunately the news isn’t great. I had my second brain scan since March and the new bleed in my brain this morning. The answer to the question what was bleeding is a blood vessel. What caused the bleed? It seems that some of my brain cells have been behaving like the cells of the piece of benign myxoma tumor in my brain and it seems like the cells are attacking blood vessels. It seems that theres nothing that can be done. My neurologist told me that I don’t have to take it easy anymore, so I can start back with my bike, slowly. It’s a no to dental implants no metal allowed as I’ll be receiving several MRI s yearly. So the only option for my teeth is extract the rest of my uppers and replace with a denture. Because the cause of an atrial myxoma tumor isn’t known, and the aneurysms are a very rare after effect, I’ve graduated from patient to research subject. According to my neurologist because my case is so rare there are very few doctors on earth with experience enough to offer any advice. I’m expecting to see several types of specialists over the next however long I live to get more types of research going as there are some genetic markers that are known, including many dark moles or lesions on the body. Some of the specialists include oncology and optometry. During our conversation, I mentioned that I have a large brown blotch on my right eye and asked if that was something that could be related ? He thinks it might be, so we’re just going through everything and plugging it into the mix to see if it fits. I’m still getting headaches but while they’re more painful they don’t last as long.
I’m still trying to digest everything, but, all of this solidified a thought I’d been having. I will be donating my brain and my heart for scientific research. In the meantime I need to continue on with recovery . I just want to walk again before I’m dead. It’s no longer a New years resolution, it’s on my bucket list.
As to just how rare this is, since the first reported case in 1966,there were only 40 cases reported as of 2010 and not many more since.