After I was “Saved by Starbucks” and found myself in Enterprise, Alabama to rest ~ having aborted my mission for a trek across Florida due to my worsening meningitis headache ~ I knew that I needed to seek medical intervention. My mother’s friend poured me into her SUV and off we went to the enormous hospital that I had passed in Dothan. I knew exactly what was wrong with me because I had witnessed a similar case during my clinical rotation in Paramedic school.
A woman had come into the Emergency Room two days after delivering a baby with the assistance of a spinal anesthetic for pain relief. Back then, it was still popular to use the spinal method instead of the more common epidural route that we use these days. She had sunglasses on, she would rest her head against her husband’s chest and she couldn’t tolerate any noise or light. I witnessed the physician start an IV in her arm, place an epidural catheter in her back, draw blood out of her arm and then inject that blood into the catheter in her back. Instantly, her headache was gone. I was astounded. In 17 years of medicine, I have never seen it done again.
The procedure is called an epidural blood patch. Basically, your spinal column is in the middle canal of your vertebral column and the epidural space is the outer column just next to it. When you have a spinal tap and the hole on the outer layer wall of the spinal column does not close, you continue to slowly leak cerebrospinal fluid out of that hole into the epidural space causing your brain to push down in your skull towards your feet when you are standing up. Your brain needs that fluid to remain buoyant in your skull and protect it when your head is jostled around. When your brain starts to mush down into your spinal canal, this pulls on the nerves that are connecting it to the fine layers (meninges) that are wrapped around the surface of your brain causing a worsening of your headache every time you stand up. Not pleasant.
An epidural blood patch is exactly what it sounds like… a fancy blood Band-Aid. By taking your own blood out of your arm and injecting it into your epidural column higher than where you would have had the hole placed for the spinal tap, the blood will slowly slide down the wall between the two columns and it will CLOT right over the hole. Presto, a blood Band-Aid! Neat eh? Simple, yet very effective. Instantly, your headache goes away because you are no longer leaking fluid and as your body makes more and more of the fluid, you begin to feel even better. Excluding the fact that you are still dealing with the headache from the meningitis of course.
So, I crawled into the Dothan ER and begged for the procedure that I knew would end my suffering. I stated my credentials, my medical history, my recent saga of the spinal tap with VIRAL meningitis (they freak out when meningitis is bacterial), filled out the paperwork, had some blood work and then I waited. After a few more hours with no word from any staff member things were getting a little annoying. What the heck is up? The place was literally empty and it was a straightforward procedure, what is the problem? Would someone at least give me a little pain medicine please? Geesh.
Finally, my mother’s friend cornered the doctor and got aggressive. He came into the room and told me that he didn’t feel comfortable doing it himself so he had called the anesthesiologist to come in. I was fine with that. Better safe than sorry. I can appreciate a guy who asks for help when he is out of his comfort zone. Then, he dropped the bomb on me. The anesthesiologist was refusing to do the procedure. WHAT? Are you freaking kidding me? I handed you the diagnosis on a silver platter. I practically spoon-fed the procedure to you and the guy won’t get out of his slippers to come in here and slip a silly little plastic catheter into my back to eliminate my suffering? It’s not HIS back that is getting the needle shoved into it afterall, it’s mine!! Not to mention, the anesthesiologist didn’t even have the balls to come in to examine me and tell me the news himself? He had to make the ER doctor deliver me the bad news? What a coward.
The doctor politely informed me that the anesthesiologist did not feel comfortable doing the blood patch because he “didn’t want to close any infection inside from the meningitis.” Ummm, dude, did you hear me when I told you like a thousand times that I had VIRAL, aka aseptic, meningitis?” That means there is no infection in there. Nothing grew on the culture. DUH. Now get your stinkin’ guy in here and get rid of my headache. That didn’t get me too far. It got me two bottles of pain medicine and my discharge papers. We piled back into the SUV and I spent the next three days in an Alabama bed, trying to build up the strength for the six hour drive back to Jacksonville, Florida to catch my plane home.
I lost track of how many Starbucks Frappuccinos that I drank when I made that drive but somehow, I made it back to Jacksonville. I rested for a few days at the same hotel that had been so kind to me when I first arrived in Florida and then I boarded a plane back to New Hampshire. The pressure in my head during the flight was so bad that I had to lie forward, with my head on the dinner tray because I had the middle seat of course, and I silently cried the whole way home.
Before leaving Florida, I had made a call to one of my closest friends who happened to be a doctor in New York to tell him that I needed an epidural blood patch. He called my hospital in New Hampshire and somehow made the arrangements for the procedure. The morning after I landed, I was in the OR Recovery Room getting that blood patch. I had leaked spinal fluid for twenty days. When I woke up in Recovery, I burst out crying and the nurse came running. “What’s the matter? What’s the matter? Are you ok? What happened?” I rolled over, looked her in the eye and said, “I am just so happy that I don’t have a headache.” It was wonderful.
I continued to struggle with on and off headaches from April through October that year. Despite my pain, I managed to paint the entire interior of my house, sold my house in six days, packed or cleaned out everything that I owned and I drove a rented RV one-way to Florida with my car towed on the back and my 14 year old cat inside to start my new life (Tallahassee cardiology offered me that job but I turned them down to go to Jacksonville simply because I fell in love with the city). I spent the first month of my new life in Florida sleeping on the floor of my new apartment because I had no furniture and then I found the job of my dreams, all while struggling to get over the pounding headaches of the viral meningitis. They finally went away in October and I thought that would be the end of my horror.
Two years later, it all seemed to be a distant memory and my only issue was residual headaches that I was learning to live with. I had a few great neurologists who were following my headaches, my abnormal brain MRIs and I was making the most of my new life in Florida. I was working in critical care as a physician assistant, I had taken up competitive ballroom dancing which was going really well and Jacksonville had turned out to be everything I wanted it to be. I had one health scare in 2006 when the strong headaches returned but a repeat spinal tap was negative and my neurologist believed that I would just be plagued with residual daily headaches from my meningitis in 2005. He put me on some chronic headache medications and I just learned to live with the pain.
I was working at the hospital on a Thursday in October of 2007 and I had been preparing all week for my first ballroom competition which was happening that Saturday. It was really exciting because I had only started in the sport a month prior and I really wanted to make everyone proud with how far I had come, given that I used to be a competitive figure skater. In preparation, I had been dancing two hours a day, four days a week, on top of a 60 hour work week so I was pretty tired and the headaches had increased monumentally. My fever was a little higher than usual and by lunchtime I had a new symptom that was a MAJOR red flag for me. The dagger was back between my shoulder blades. I had only felt that once before in my life, it was when I had tried walking down those steps from my loft bedroom in 2005, right before I went to the hospital and was told that I had meningitis. Oh crap.
When I called the neurologist that afternoon to tell him about my daggers, his first statement was, “You need a spinal tap.” Well, DUH, I knew that I need another blasted needle in my back…that made for tap #4 if anyone was counting… Then his second comment was, “Are you freakin’ calling me from WORK???” Ummm, yup. Ooops. I guess that he heard the overhead paging system at the hospital and realized that despite my illness, I was a work-a-holic. I always went to work no matter how sick I was. As long as I am not contagious I go to work, period. I had even refused hospitalization when I got meningitis the first time. I went home directly from the ER right after my first spinal tap, I HATE being an in-patient. Call me stubborn, I am fine with that label.
My first thought was, “There is no way that I am missing this dance competition dang it. I didn’t just work my tail off for a month to miss this competition.” So, I put him off about the spinal tap. I told him that I couldn’t possibly do the tap that day but I would call the radiology department at my hospital to appease him. I called, they wouldn’t do it. They didn’t want to take on the responsibility of doing an invasive procedure on someone else’s patient. I could understand that. I called him back and he reluctantly agreed to let me do it the following week at his hospital. Of course he had no idea whatsoever that I was going to dance in a ballroom competition in two days. He would have killed me with his bare hands if he knew my plans. It got scheduled for the following Tuesday.
Saturday I took an enormous amount of pain medicine and with a fever of 102 degrees, I danced in my competition. I completed my eight dances, placed first in all dances and then dragged my body home to the couch where I stayed until my spinal tap on Tuesday. It was no big surprise to me when the results came back positive again for my second case of viral meningitis. The spinal fluid results were even worse this time. The white blood cell count was much higher and I ended up getting much sicker over the next three months.
I suffered from a profound fatigue that was beyond words. When I would come home from work, I would enter my apartment and immediately lie on the floor just inside the door so I could gather my strength before I could even put my purse away, feed my cat or change my clothes. I lost 35 pounds when I was petite to begin with because I didn’t have the strength to eat, I had no appetite and no food appealed to me at all. People started to ask if something was wrong with me and they probably thought that I was suffering from cancer because I hadn’t really told anyone that I had meningitis. I continued to work every day but on a much lighter case load and I knew that something was seriously wrong because the first case of meningitis has not hit me as hard as this one seemed to be doing.
Lightning had struck me a second time and it was time to find out why. It was time to use my skills as a physician assistant to research my own health. As I studied my case, I found out that it is not unusual for a person to get an isolated case of viral meningitis but it is extremely rare to get it a second time. I spent the next three years searching for the answer for my recurrent meningitis. I saw 14 doctors, underwent every blood test imaginable and was scanned with enough radiation to light up a small town. After seeing 5 neurologists, 2 infectious disease doctors, 2 ear/nose/throat specialists, 2 immunologists (including the medical mecca of the Mayo Clinic), 1 oncologist, 1 orthopedic hand specialist for my swollen, arthritic hand and my brilliant primary care doctor, I finally got my diagnosis in January of 2011…
Chronic Lyme Disease