- Diseases, Disorders & Conditions
The Medical Diagnosis That Changed My Life
My copy of my first set of MRI scans of my brain, 1995
The pains in my head were excruciating, like my head was ready to blow off. I couldn't stand the everyday headaches anymore. I no longer wanted to lose my balance every time I stood up. I nearly blacked out twice at work, and when I had the vertigo attack, I felt weak and helpless. My coworker, another nurse, watched me almost black out and fall on an elevator doing nothing, looking at me thinking I was drunk. What the neurologist gave me was an antihypertensive medication that never took away my headaches or dizziness. It just made me sluggish and overweight. I wanted some answers, and I needed to know what is in my brain making it want to blow up? I needed a new Doctor, and some support. At that time, I felt that the only true support I received was from my parents. They were the ones who sat with me in the Johns Hopkins Outpatient Neurology Department the day that I received my final diagnosis and prognosis.
The Beginning Evaluation
About a month after Christmas, after I just turned 34, I fell on the slippery drive due to some icy blacktop, hitting my head on the back bumper of my car. My children, ages 3 and 6, were patiently waiting to receive assistance to exit the car, because there was about ten inches of snow on the ground. When I went down, it took me a while to stand up due to the slippery pavement. I literally had to crawl on my hands and knees to the other side of the car and the pull up holding onto its mirror due to the ice. My head hurt, but I did not rush to the Doctor's office because it was night and the children were needing to go to bed. Plus the roads were icy and I did not want to risk an accident.
So I proceeded with my own first aid. Ice pack to my head, followed by acetaminophen, 650 mg every 6 hours. On that following business day, I called the primary physician, and a new neurologist, who appeared to be fresh out of medical school, maybe even younger than me would examine me every month. "Close your eyes, touch your nose with the tip of your finger after holding it out to the right(or left)," the doctor would say. Or, he would say " stand on one foot (like a flamingo) and hold both arms out." Another request that the Doctor made was to walk a straight line heel-toe-heel-toe (like a sobriety test). Then he would ask me about my headaches, shine a flashlight in my eyes. And I would go home feeling like I had not been believed. While I was following the physician's instructions, I was having frequent falls and losing my balance unexpectedly. I became more sensitive to all kinds of sensorium, such as odors, bright lights, and loud music. After 5 months of treatment on the medicine this doctor gave me, I called him up and said, "Can't you give me a diagnostic test to find out why I am still having headaches?" He signed a requisition form and I was scheduled for an MRI with contrast. This means Magnetic Resonance Imaging with visualization of intravenous radioactive dye. My whole entire brain was to be xrayed and analyzed.
I was instructed to lie down and the technician asked me what station I enjoyed listening to. I stated, "106.5 FM" which was playing my favorite top 40 popular songs at that time. Before I had gotten into the examination gown, I was asked to fill out a questionaire in regards to the location of any possible metals in my body such as tooth fillings, surgical clips, artificial joints, shrapnel, bullets, or if I had a pacemaker in my heart or if I was pregnant. Then they wanted to know the usual history of any previous surgeries or allergies.
It was chilly in the tunnel room that I was in. The technician gave me a warmed blanket to place over my torso when I was lying on that cold hard flat surface that was soon going to usher me into the tunnel like a conveyor belt. The headphones were in place, and occasionally the music would be interrupted by the soft female voice to give me instructions and also to see if I was okay.
Then the loud clicks started! Tapping in a haunting rhythm followed by the sound which was like a jackhammer. Now I understood why they wanted me to listen to my favorite music. Did the creators of this fine diagnostic instrument ever think of how the noise would affect the patient? I had no choice but to tolerate it. After about a half hour or so, the technician pushed the button and I was released from the tunnel, only to be instructed to stay still. The contrast was being prepared to be given intravenously! The warmth came into my right brachial vein. I felt an immediate heat in my arm and then in my neck and face. A few minutes went passed and when they felt that I was okay with the injection, I went back into the tunnel. I had to remind them to turn on the music.
The last portion of the MRI testing seemed to last much longer than the first portion. More sounds of clicks and grinding jackhammers when right into my ears and into my brain! All because I wanted a "diagnostic". Had I never opened up my mouth I would have never been in that tunnel been in that tunnel that day.
First and Second Opinion
The first physician I went to see explained that what I had was a Subarachnoid Posterior Fossa Cyst. On looking at my MRI films, this is located between my cerebrum (the front part of my brain which is the active brain) and the between the cerebellum (the back portion of the brain which controls breathing and coordination.) The width of this cyst between the layers of my brain goes from ear to ear, and its length is from the top of my head and the top of my cervical spine. According to Dr. Timothy Haine of the Chicago Hearing and Dizziness Clinic in Chicago, Illinois, the subarachnoid cyst is formed at the junction of the cerebellum, pons and medulla, being the cause of symptoms of a condition called Meniere's disease whch are symptoms of imbalance, hearing loss, and tinnitus (ringing in the ears). All the symptoms of the Meniere's disease I have seen a gradual increase of over the years. At that first appointment to discuss the results of my MRI, the physician did not even test me or ask me how I was feeling. He proceeded to speak to my Dad and my spouse only, and not me. He clearly stated, "There is nothing we can do about it." And that was the whole explanation, not a discussion of my symptoms or even shine a light in my eyes to check pupil reaction. I felt angry, and immediately I spoke to my Dad and said, "I want a second opinion!"
The second appointment came a month later. My Mom and my Dad came with me. At that time, my spouse, the father of my children decided not to go. He responded, "Oh they aren't going to fix it. There's nothing they can do." His lack of sympathy for the anxiety I was feeling filled me with dismay. It made me wonder, if the new physician decides to operate on me, would this husband of mine be with me then?
The first physician ordered a thorough testing of every one of my cranial nerves. There are thirteen cranial nerves, so I knew that this would take a long time. Then the subjective symptoms were recorded. The first physician, who was associated with the medical team of Dr. Ben Carson, who is famous for his neurosurgical success at Johns Hopkins Hospital in Baltimore, MD thoroughly looked at all of my films. He then called another neurosurgeon to examine my films. Dr. Rafael Tamargo, who has also been a professor at Johns Hopkins Medical School, stated came to the prognosis. Due to the partially formed cerebellum I was born with (due to premature birth at 28 weeks' gestation) and because the cerebrum is using the cyst as a cushion to sit upon, he said that to drain this cyst in my cranium, I could have a serious stroke.This is because there would not be enough cerebellar tissue to have my cerebrum to rest upon. This wonderful intelligent physician told me that I would continue to "compensate", and that I have been compensating for this all my life.
A Condition That I Will Live With
Because of my ambition for life, and my desire to be in a normal life, I continue to live with this cyst in my head. I finally stopped having the headaches and the pressure in my head gradually over the years. It has been seventeen years since my initial need for that neurological exam, and upon repeat MRI testing a few years ago, there have been no changes. What I did change in my life to compensate was my diet, and my lifestyle. I lowered the sodium in my diet and added Vitamin B6, Omega 3, and Lutein ( an amino acid that prevents macular degeneration, which is gradual blindness to the eyes.). I have to avoid alcohol, large amounts of caffeine, and control my carbohydrates. I eat a very balanced diet most of the time and I have to remind myself to rest. (I took a long nap before I have worked on this hub.) I also have given up my competitive sports and any activity that risks head injury. I went from being nine hours on the feet to private duty nursing. Thank God I can still walk, talk, hear, see, drive a car, and I can still dance, sing and play my musical instruments.
One thing I have learned over these years. Life is too precious to take advantage of. If there is something going wrong in the body, do not hesitate to ask the physician to do more diagnostic work up. It is amazing what we can find in these new radiological and medical testings. Like a machine, we have to find out what is going on in the body to make it last.
Information describing the position of the subarachnoid cyst and Meniere's disease came from the website, Dizziness_and_balance.com by Dr. Timothy C. Haine of the Chicago Dizziness and Hearing Clinic.
19 Years Later and Still Healthy
Almost 20 years have passed since my diagnosis of the Subarachnoid Cyst found between the major portions of my cerebrum and the cerebellum of my brain. I continue to function every day normally, working, and doing everything a healthy person does. I do have to take blood pressure medicine and I desire to rest more when I am able to. As I get older, I have to remain aware of body changes. I do take my time with significant activities not to cause injury or strain to my neurological and motor functioning. But I owe my neurolical stability to my healing from the Lord through prayer and trusting in his Word from the bible. I constantly praise God for keeping my head safe and sound. It is amazing to know that with all this wonderful medical technology, we can find out what is really going on inside our bodies. I encourage everyone to have a diagnostic work up with the physician if symptoms persist and it is just not easily found out what is going on in the body by common medical knowledge.
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