This is a very long story but I want everyone to read it. This is what happened to Sean and I dont want it to happen to anyone else. The past year has been insane. Ive watched my feisty, never quit, constantly on the move boyfriend go from more energy than a 5 year old to having to walk with a cane, sometimes two and most of the time not being able to walk at all. It all started with a minor face twitch and went to 31 seizures a day, the longest lasting about 30 minutes. Weve been through doctors, the internet, friends and so many nights laying in bed talking, trying to figure out where to go from here. Im on the outside looking in. I can only speak for myself. I thought I was tough before. I thought my mind, body and soul were strong. I had no idea that I had this kind of strength and knowledge inside of me. Ive had to be strong when Sean wasnt, Ive had to smile and push back my tears, Ive had to scramble for answers, trust my instinct and pray I was doing the right thing, Ive had to request certain tests from doctors because I knew what to look for and they didnt, Ive spent countless hours working out chemical equations, looking at drug interactions, reading everything I could find. When we started to fight this monster, I weighed 95lbs (Im 50 and tiny, so thats fine for me). I now weigh 78lbs. Its from constantly running - and I dont care about myself right now. Sean comes first. Sean will ALWAYS come first. I started out with a list of diseases, and narrowed it down. A very important part was missing, my Missing Link. I searched and searched and none of it made sense. Something wasnt right. Then one night Sean had a different seizure. I called my dad upstairs like I do so often. Besides me, my dad is the only person that can talk Sean out of a seizure. After the seizure, my dad and I went out into the hallway. He said that there is something growing on Seans brain. The very next day, we got a letter in the mail confirming my dads words - Sean has a multitude of cysts on his brain. The letter said they were nothing to worry about. I closed my eyes and listened to my heart. It told me to dig and dig deep. And at first, I found nothing. But my mind kept telling me temporal lobes. Keep digging, it said. Dont give up. I laughed at my mind - me, give up? Oh, please. I dont screw around with my boyfriends life. Then one night I was digging more and a new site popped up. From what I found, this isnt a new site. Its a specially website about neurological disorders. So I dug. And I prayed. I heard the voice that I know so well, Gods voice. He told me that He will point it out to me, Ill know it when I see it. I found it. The missing link. So, I googled it. I read as much as I could find. I pulled out my neurology books. I felt on Seans head. I felt on my head. I pulled up brain images - MRI scans and CT scans. I studied. I felt on Seans head some more. And then, I cried. I cried like I havent cried in a long, long time. Its called Arachnoiditis. And this is what happened: in early October, 2012, Sean found a boil on his arm. He drained it and we let it go. It seemed to have gone away. We came home to WI on October 6, my 27th birthday. Sean began to twitch. We didnt know it but the staph infection from the boil hadnt left. It was moving around in his body, making new homes. Fast forward to March, 2013. Sean is twitching, barking, exhibiting signs of severe Tourette Syndrome. In April, we get him on a med for TS. In May, he sees a new doctor at the VA. By this time, the boils are large in size and number. The doctor refuses to give him an antibiotic, just a topical. This could have all stopped here. Sean ordered me to be quiet at this and the next appointment with this doctor. After the second one, I refused to be quiet. In July, we went to the VA in Milwaukee to see a neurology specialist. Sean had a seizure in their office. They did baseline tests on him but as we were leaving, they said that whatever this is seems to come and go, so no further action is needed. Sean could barely talk during this appointment and could barely walk. Later, we found out why they said that. There is only one word Sean can say without stuttering when hes having a flare: my name. Thats what they based it on. He cant say Ravens or music, but he CAN say Andrea, and he was turned away for that. In September, we saw a new doctor at the VA in Appleton. She took almost two hours with Sean and I. I have full control over Sean through the VA and she talked to me and listened to both of us. She outsourced us to a new neuroscience place, set up more tests and off we went. I requested certain blood work for Sean and she did it. My calls were right, his levels came back very low. Still, she didnt want to touch the boils, so they were still growing. We made an appointment with Dermatology at the end of October. Perfect, my specialty. Lets see these clinicians weasel out of this one in Milwaukee, I thought. I have 28 YEARS of derm experience, my personal doctor consults me, not the other way around. Haha, I got this, homie. Bring it. By the end of September, Sean ended up in the ER for the boils. The doctor did a culture, which came back as staph. Sean got antibiotics and we went home. 10 days of antibiotics were not enough for a years worth of boils. So we made an emergency appointment at the VA in Appleton. We ended up seeing a new doctor because Seans doctor was gone. This new doctor gave Sean more antibiotics and then she performed a miracle - she gave him a seizure medication. Day 4 with Depakote: Sean has only had 5 seizures in four days. Its working. God is amazing! How does all of this fit together? Like this: The staph infection went untreated, which caused the cysts to grow on Seans brain. Theyre on his temporal lobes, causing his seizures and his symptoms. The antibiotics are clearing up the staph, which is helping the cysts calm down. The Depakote is fighting the seizures. Sean will never be the same and we have an extremely long road ahead of us still. He will always have seizures. I turned down experimental brain surgery already. I absolutely refuse to let anyone go into his brain to experiment with different methods. That would be a very, very last resort and even then, I already have a doctor chosen for this. I have so many backup plans for everything that to list them all here would be asinine. Ive made the right calls every single time so far. I have worry lines on my face, Im constantly tired and my head constantly throbs. Ive raised hell, called on heaven, had a bunch of breakdowns but always fought like crazy. I have to read labels now, measure drug interactions, time everything, and have to be able to dead lift Sean, which I can. I cant give up this fight. If I do, Sean will. He will refuse to fight if I quit. We will continue this fight, together. Everyone has to get through me now, and let me tell you, that is impossible. Please you guys, if you have an infection, go to the doctor. Dont leave it be or think neosporine is enough. It CAN happen to you. Just think, Sean survived Iraq and it happened to him. Act quickly. Arachnoiditis is rare but its very real. Take care of yourselves and those you love. Trust your instincts like I did. Educate yourselves. And always, always fight. Love, Andrea
Posted on: Sun, 20 Oct 2013 09:16:08 +0000
Trending Topics
Recently Viewed Topics
© 2015