Sean Towery has the distinction of being one of the most popular patients on Mystery Diagnosis. Read his story and you'll soon see why.
Q: When did you first notice something was wrong? What were the symptoms?
A: I was about five years old when I began to have ear infections that were so bad I would have blood and pus draining out on a nightly basis. It wasn't until I was 13 that they were finally able to figure out the problem. There were no problems for about 13 years, then I was taking a shower one morning getting ready for work. I blew my nose and the entire world was spinning out of control. I instantly knew something was wrong. Having severe vomiting, headaches, constant clear nasal discharge, dizziness, blurred and jumping vision (benign vertigo), wobbly walking, severe pain, and I could feel something moving inside my head. Having those symptoms you definitely know that you just don't have the flu with an ear infection, that's for sure.
Q: What were doctors' reactions when you told them how you were feeling?
A: Each doctor seemed more and more concerned and intrigued by my symptoms because it was such a rare combination of things going on. Especially when I told them that I could actually feel something moving in my head behind my ear.
Q: Did you have any false diagnoses beforehand?
A: There was only one instance where the doctors didn't know what was going on. When I got off the plane in Michigan I lay on a couch sick for two days. Then my mother drove several hours to take me to the hospital emergency room. There they told me that they couldn't see anything wrong except for some blood on my ear drum which meant it might have torn on the flight from the pressure, and that I should take some valium, get back on the plane and fly home to see my doctor.
Q: What was the final diagnosis? How did your doctor figure it out?
A: I told Dr. Oghali what was going on. After telling him my problems, reading the results of my tests and looking at the film he immediately told me I was having surgery to repair a hole in the base of my skull (Mastoid Encephlocele). It was truly a group effort. I was so amazed how fast he was able to tell me what was wrong considering it was so rare.
Q: How did you take the news?
A: My mouth was laying on the floor. It's not every day that you hear that your brain is actually coming out of a hole in your head, and that the clear fluid coming out your nose is brain fluid. It is not an easy thing to hear. I kept it from my girlfriend at the time, now my wife Jennifer, and I didn't tell my mom or family for almost a week. I was really really worried that since I already was deaf, there were worse things that were going to happen as a result. I thought I would lose communication between my mind and my body. That was my biggest concern. I didn't want anyone to have to take care of me the rest of my life.
Q: What was the cause of your brain injury?
A: Wow. It was a combination of things. 1) I had developed another colestoma cyst over the last 13 years that was deteriorating the bone in my inner ear and at the base of my skull, causing a small hole. 2) With the bone so deteriorated the pressure on the plane caused the base of my skull to rupture, creating a much larger hole into my ear canal. 3) With no bone conduction I lost my hearing. 4) Somehow three holes were found in my inner ear causing loss of brain fluid, this somehow contributed to a deterioration of my balance canals and the ear bones that aid in conduction.
Q: What was done to fix it?
A: Dr. Oghali opened the side of my head by cracking my skull open to lift the brain up and out of the way, that is when they found that the colestoma cyst had started to grow into my brain. So they ended up having to remove all of the cyst and debris. Then they lifted my brain out of my ear canal. They graphed a piece of skull from another section and placed it over the hole that was about the size of a quarter or silver dollar. They then graphed a piece of my temporal muscle and used it to tie down the bone and provide it with a blood supply. Then a piece of soft tissue was used to seal it all up. Two titanium plates were put in to stablize the portion of my skull that was removed for the surgery.
Q: What was rehabilitation like?
A: There really wasn't a lot of rehab with the surgery. It was more of a healing process, and adjusting to having my balance back.
Q: How are you today?
A: Today I am doing pretty well. No headaches, no more nasal discharge, and I have my balance back. Though I am still adjusting to the fact that I have no hearing on one side. Occasionally, I sleep on the area where the surgery took place and it causes a little bit of pressure. I have to make sure and wear loose-fitting sunglasses, but that's about it. I am a very lucky man.
