My daughter Megan has been waging a 12 year battle with a disease named Trigeminal Neuralgia or Facial Nerve Pain. Megan is considered Atypical with this illness. She was also young when she developed this disorder which makes a lot of the standard treatments not realistic. Megan has had 3 brain surgeries where the surgeons put small teflon pads between her trigeminal nerve and her blood vessels that are compressing the nerve. This procedure is called a Microvascular Decompression (MVD). She also had 3 surgeries to cut back a branch of her trigeminal nerve that is in her right sinus. This branch of her nerve is particularly troublesome and traumatic. In other diseases you want nerves to regenerate, in Megan’s no--but the nerve regenerates. This disease is not well known and is known as the” suicide disease” because the pain is so intense and persistent. In the 12 years Megan has battled this disease, she may have had 2 good years at separate times during which she took college classes. All Megan wants to do is graduate college and save history. Megan loves history especially Medevil History. She would also love to have a life separate from the disease, but she is afraid to dream because they have all been crushed by Trigeminal Neuralgia and the pain. Megan was in college at the University of Mary Washington majoring in Historic Preservation when during the fall of her sophomore year her hell began. Since then, nothing has been the same for her.
This small history is hard for me to write and watching Megan become more and more invisible is even harder. She is so precious to me, a beautiful and amazing person. As a mother my heart breaks every day to see her suffer so much. It is a very helpless feeling
Let me describe her pain. She has constant pain in her right sinus and into her forehead. She can live with that pain. Megan also has severe migraines that get aggravated by the facial nerve pain. She feels that she will always be in pain and she accomplishes a lot with the level of pain that most people would have difficulty with. What is so debilitating to her is the neuralgia pain or attacks that she gets. Megan describes the attacks at an electric knife hooked up to electricity and that pound at her face over and over again. A short attack is 10 minutes, but those are rare. Sometimes she gets what she calls rolling attacks when the pain starts to let up, it then intensifies again. She can also have neuralgia attacks that last an hour. Needless to say, this has taken a toll on her body and mind. She spends about 22 hours a day in bed trying to shut out the world because most anything in the world can cause a neuralgia attack. Hot, cold, wind, touch, crying, emotions, noise, bright light. She cries most nights and states how much it hurts. She is my hero for living each day. Megan is currently on so much medicine to try and help and most medications slow her brain down which makes thinking difficult. Megan is a super smart person who has an incredible memory. When she has trouble getting out her thoughts and her memory is not as sharp, she becomes so frustrated and my heart also breaks again. This picture is how she spends her days now and she doesn’t know I took it because she is very private about the toll of her illness. She tries to put on the best faces she can. There is nothing I would not do for Megan, she lost her 20's and is afraid she will lose her 30's. She wants to have a life outside of her room. And with that I ask again for your help so we can get the best care possible for her.
Thank You,
Kim and Megan Dever
This small history is hard for me to write and watching Megan become more and more invisible is even harder. She is so precious to me, a beautiful and amazing person. As a mother my heart breaks every day to see her suffer so much. It is a very helpless feeling
Let me describe her pain. She has constant pain in her right sinus and into her forehead. She can live with that pain. Megan also has severe migraines that get aggravated by the facial nerve pain. She feels that she will always be in pain and she accomplishes a lot with the level of pain that most people would have difficulty with. What is so debilitating to her is the neuralgia pain or attacks that she gets. Megan describes the attacks at an electric knife hooked up to electricity and that pound at her face over and over again. A short attack is 10 minutes, but those are rare. Sometimes she gets what she calls rolling attacks when the pain starts to let up, it then intensifies again. She can also have neuralgia attacks that last an hour. Needless to say, this has taken a toll on her body and mind. She spends about 22 hours a day in bed trying to shut out the world because most anything in the world can cause a neuralgia attack. Hot, cold, wind, touch, crying, emotions, noise, bright light. She cries most nights and states how much it hurts. She is my hero for living each day. Megan is currently on so much medicine to try and help and most medications slow her brain down which makes thinking difficult. Megan is a super smart person who has an incredible memory. When she has trouble getting out her thoughts and her memory is not as sharp, she becomes so frustrated and my heart also breaks again. This picture is how she spends her days now and she doesn’t know I took it because she is very private about the toll of her illness. She tries to put on the best faces she can. There is nothing I would not do for Megan, she lost her 20's and is afraid she will lose her 30's. She wants to have a life outside of her room. And with that I ask again for your help so we can get the best care possible for her.
Thank You,
Kim and Megan Dever