Trigeminal Trophic Syndrome

After attempting to live with TN, I finally had the surgery. Once the swelling was gone my TN began to hit me at full force. I went back to the doctors office and made a date for Gamma Knife. Over all I felt the procedure went well. One year later I began to have an unbelievable collection of symptoms.

This all began when I woke up with great difficulty to speak. My right side of my face felt as if it fell. I went to ER worried about stroke. They did a CAT scan and told me to follow up with my neurologist. When I arrived for my appointment he seemed alarmed that they did not run an MRI. He sent me over immediately. When the results returned it appeared I had a large amount of fluid on my right side of the brain. They prescribed a very strong amount of steroids and monitored me.

Not only did I have difficulty speaking but I also lost the feeling on the right side of my face. I soon began to form ulcer like spots on my scalp. The ugly bloody and oozing patches were in line between the right and left top side of my scalp. I was sent to specialists who were dumbfounded. The patches grew. The spots began to form on the right side of my nose and on the right side of my lips.

Eventually I was diagnosed with Trigeminal Trophic Syndrome. This is rare but can be related to the radiation effects of my previous Gamma Knife. I am hoping that there may be someone out there that also has been given this horrible diagnoses. Please email me with any thoughts!

Thank you

U poor thing and I thought mine was bad. Please keep us posted on what they do for u! I’ll ask around.