Hello. I am not sure if this is the correct forum to post this in. Well, where do I start. Last September, my whole world turned upside down when I started getting all kinds of strange symptoms. Tingling and numbness in extremities, bad headaches, vision issues, dizziness, muscle and joint pain, loss of balance, shocking sensationsin the left side of my face, a sensation that something was crawling across my scalp. You name it, I had it.
Before this started, I was and always have been a very healthy person. I went to the E.R. during one episode where they did a brain MRI. They informed me that I had a 5mm cavernous hemangioma in the left frontal lobe of my brain but that it was of no concern and not at all related, that I had likely had it since birth. Over the last 8 months I have seen numerous specialists, had a massive amount of tests..many repeated by various doctors, and more medication thrown at me than I know what to do with. No one has answers or a diagnosis.
In March, my neurologist took a second MRI of the brain to compare to the one from November. His nurse called to tell me it was normal. Imagine my surprise when just 2 days ago, I logged in to look at my medical records online and find that in that few months, the hemangioma had doubled in size and shown signs of a recent bleed!! NO ONE TOLD ME!! My symptoms have never gone away. I had a week where I was so bad I felt like I couldn't function, was falling down, etc.
I called a neurosurgeon for a consult next Wednesday but I already get the impression they are going to just want to watch this issue. I am looking for advice on what to say to this doctor, is it possible that the week that I was really bad was when it was bleeding, what tests do I need to demand...I am at a loss and terrified. To me, ANYTHING no matter how big or small going on in my brain is a bad thing, especially when I have had bad symptoms for almost a year. Any insight you could give would be great!
I've always understood that brain tissue dosen't like bathing in foreign material and that includes blood. Many medications have difficulty passing the blood brain barrier which is a protective measure our body provides for the brain. It would be interesting to find out what your Neurosurgeon suggests to this matter.
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