Here lately, I’ve been a little off the radar. Ok well…seriously…a lot off the radar.
On March 2, I woke up dizzy one morning. I knew that it wasn’t normal, but I didn’t think much else about it. Well the dizziness continued so I went to my Doctor who diagnosed me with Labrynthitis, which is an Inner Ear condition. She gave me meclizine which made the dizziness worse in my opinion. Things started getting worse to the point where I passed out, walked into a wall or two and common activities like shopping made me feverish with exhaust. Well the dizziness didn’t go away so eventually I went back to the doctor and she referred me to an ENT specialist who did some initial testing in his office and said that my ears, nose and throat were great, but then immediately sent me off to have a brain scan. So of course, on the inside, I enter panic mode. He said that my dizziness was probably not labrynthitis because I had not experienced a complete loss of hearing. He suspected vestibular neuronitis. The next day I got the results of the brain scan back and they found that the lining of my sinus cavities were abnormally thick so they put me on steroids to drain the lining. However, the brain scan also showed that I had a chiari malformation on my brain and that I needed to be referred to a neurologist and the ENT also wanted to send me to the Balance and Movement Center at Vanderbilt for further testing. The earliest I could get in to see a neurologist was May 3 and the earliest I could get into Vanderbilt was May 11.
So about a month had passed living with my dizziness. The steroids made me jittery and caused me to have double vision while the meclizine made me dizzy and put me to sleep for 4 hours at a time and I started using the wrong words in sentences and conversations….so needless to say I was like a Walking Zombie for longer than I care to admit.
The end of April had arrived and May was just around the corner. My mother had come to stay with me and go to the appointment with me when the Historic Flood of 2010 hit Nashville. After the initial rains had stopped and Monday May 3rd had arrived, my neurologist appointment was cancelled because the doctor was stranded in his neighborhood and couldn’t make it to the hospital. The appointment was rescheduled for May 6.
I went to see Dr. Lim, who I liked very much, and in short, the chiari malformation on my brain stem that was diagnosed in April has nothing to do with my dizziness and equilibrium issues. So that was definitely good news. My central nervous system is intact and working as it should be.
According to the doctor, I was ‘born’ with this condition and it is a very small malformation and hasn’t weakened the channel that leads from the brain stem to the cerebellum chambers. Dr. Lim stated that equilibrium & balance issues are one of the hardest to diagnose because there are so many possible causes and many times it is a process of elimination in determining the root cause. So atleast we can rule out the brain now. Yay!
There was another test that he mentioned, but he said that its very expensive and usually not covered by insurance. That test would conduct a MRI –type scan of my vascular and capillary networks and examine the blood vessels and ensure that the circulatory system is performing at optimum levels. Dr. Lim gave the analogy of a car with no gasoline. You can still put the key in and turn the engine, listen to the radio and turn on the AC, but you can’t go anywhere. The same is true for the body if there is not proper blood flow. For example, if a message was sent to the brain to move from a sitting to a standing position, the body would be able to perform that task, but when it finally reached the standing position, the brain would realize that there was no blood flow to support the action and that can cause dizziness, headaches, blurred vision etc. So that is why he has that test in mind. But, since that test is so costly, he said that he’d like to wait until I complete the Balance & Movement testing at Vanderbilt before ordering that test.
Finally May 11 arrived and I went to the Balance Center at Vanderbilt. I wasn't looking forward to that apointment and didn't really know what to expect. What a day! I started the day of testing with having a silver thread inserted into my ear canal and had a series of hearing tests. Then I had to put on a special pair of eye goggles (frenzel goggles) that recorded my eye movements when I heard a sound or followed movements of light. Then I had 45 seconds of 110 degree hot water force filled into my ear canals to try to trick my brain and simulate movement even though my body was at rest. In order to reverse that movement, they had to fill my ear canals with 87 degree water to make my brain realize that there was no more simulated movements. You would think that water that is 87 degrees wouldn’t be cold….but it feels very cold after having 110 degree hot water in there. By the time that test was over, I was soaking wet from all the water they force filled into my ears while laying flat on a table. The final test of the day was a rotary chair test. Now, if I had been a 10 year old at an amusement park….this roatary chair test would have been a blast. But as you know, I am not 10. For this test, they strapped me into an office type chair and closed me into a completely dark circular room and spun me around in different directions for 12 whole minutes. During this 12 minutes, in the dark room, there was a tiny red laser light that I had to follow with my eyes. Thank goodness the room was dark because if not, I would have been very sick. This test reminded me of the mad teacup ride where you can't get the spinning to stop!!! Also, while this circular test was being administered I had to answer a series of questions on how the dizziness makes me feel and how has it affected my relationships and daily functions etc.
When all of this testing had concluded, it turns out, that my balance sensors were also working properly. Once again, that was good news. The balance doctor said that my ears, eyes and brain were functioning together as they should be. He diagnosed me with having BPPV which is Benign Paroxysmal Positional Vertigo. This is basically a fancy medical term for being dizzy with no known cause. Benign means non threatening, paroxysmal means short duration, positional means induced by a change in position and vertigo means spinning dizziness.
This can be caused by a head trauma or by a virus that affects the inner ears which can cause vestibular neuritis. This causes debris or ear rocks to form or become out of alignment in the inner ears which causes balance and equilibrium issues.
After Vanderbilt sent those results back to the doctor, I got a phone call from the ENT stating that I needed to go to Physical Therapy for a 6 week Vestibular Rehab Therapy program.
Needless to mention that with all of these doctor and therapy appointments, I had to fill out FMLA papers at work for intermittent medical leave. To throw in some more money to the lovely health care industry, in the middle of this medical frenzy, I also had a female checkup and mammogram. Those are just typical routine checkups and since I now have a reserved parking spot at the hospital (just kidding) why not right?
So I am currently approaching the end of my therapy program and the overall dizziness has not gotten better or gone away, I just now know how my mind and body should respond to it.
So right as I am starting to feel “back to normal”, I get another call from the hospital saying that they have found a problem with the mammography scans and they need me to come back for more testing and an ultrasound to check for lumps. Of course here I go into panic mode again. I swear I am too young for all of this! Anyway, back to the hospital I go. This 2nd mammogram wasn’t covered by my insurance because they only pay for 1 a year. Yikes. It’s just money right? I have a money tree planted in the back yard although it’s quite bare right now because I have been picking from its blooms lately with all of these tests and treatments. Anyway, I can happily report that the radiologist feels that the spot they saw on my scans may have been a piece of tissue doubled over that caused them to see a dark spot originally or it could just be a tiny lymph node. No cancer and no worries! I do have to go back in another 6 months for another mammogram though just to be proactive. Ugh - Lucky me.....
Actually I say that in jest right now….because even with every test, every doctor and every penny I’ve paid, I feel very lucky to be writing this message right now.
So anyways….almost 4 months later and after and unmentionable amount of dollars spent on medications, copays and treatments….here I am. Still dizzy. But still standing. I am right where I should be. Counting my blessings with every breath I take.