Pseudo-tumor Cerebri Training Wheels
Section I: How it all starts
Hello. I am a long-time sufferer of the dread disease Pseudo-tumor Cerebri. Like many of you, I have survived being told that I had a brain tumor (scary, since I live right next to a Super fund site chock full of delicious carcinogens like PCB’s, and industrial solvents). In fact, several other similarly and worse contaminated sites are within a long walk from my home, and I have met real brain tumor sufferers at the same eye doctor where I was treated. The only difference between diagnoses? The appearance of the MRIs.
I am sure that like me you snorted with disbelief at the thought that you might have such a movie star disease, only to awaken in a cold sweat at night. In fact, when you hear Pseudo-tumor Cerebri for the first timetumor is what you really hear.
I want to share my personal story with you, equip you with your training wheels, and give you hope for your future. I am someone who has successfully managed this disease for over a decade without going blind or committing suicide. I work a normal, secretarial job, can proofread, can still see well enough to drive a car without restrictions.
Let me tell you how you will kick this disease with the help of good habits and excellent medical support.
My story began shortly after I lost a very beloved Administrative Assistant spot when my company relocated to Washington, DC in hopes of panning gold nuggets from Uncle Sam’s money stream. Bereft and adrift, I started consuming copious amounts of Chinese food and salted soups, which I could conveniently carry in a thermos to all my penurious temp jobs.
At this point, strange things started to happen: mysterious flashing green and purple lights, loss of night vision, losses of peripheral vision, dizzy spells, feelings as if someone was brushing his fingers though my hair, impaired balance, grey blobs like jelly-fish in my visual field. Furthermore, my migraines, always frequent and bad, went on warp speed.
I would get up in the morning and have trouble with my balance. The doctor called it Positional Hypo tension. I heard weird rushing in the ears (the technical term is pulsatile tinnitus) , and even experienced temporary visual blackouts.
Because I was more afraid of getting an express trip to the booby-hatchery than I was of dropping dead or going blind, I shared my concerns with my fiance only. Everything came to a head when I complained of a visual blackout while I was nursing him through a back spasm. He forced the issue by calling my doctor himself and making the appointment without consulting me.
Section II: What Comes Next
If you are an aspiring Pseudo-tumor Cerebri patient, you will be in for more tests than a nerd headed to MIT. Your medical team will resemble the mission specialists at NASA and will include: your personal physician, an ophthalmologist, a neurologist, a neuro-ophthalmologist and retina specialists.
If you live in the New York area, a particularly well-regarded team of eye specialists can be found at Long Island Jewish hospital. http://www.northshorelij.com/body.cfm?id=3986. My first doctor, Dr. Slavin, was affiliated with this center and I credit him with saving my eyesight. Later, when his own health was failing, I had the good fortune to be treated by one of his star pupils: Robert Rothstein. Rothstein Robert Md.
Pseudo-tumor Cerebri, aka Intracranial Hypertension aka Benign Intracranial Hypertension (lingo dependent on the country you are diagnosed in and the age of the doctor) is a disease diagnosed by exclusion. That is to say after they have ruled out: Brain Tumor, Pituitary Gland Tumor, Spinal Tumor, Diabetes, Hypertension, Multiple Sclerosis, AIDS, and too many other candidates too numerous and terrifying to list, you will become a member of the not-exclusive-enough club of Pseudo-tumor Cerebri.
Section III: Tests du jour
Did I mention yet that you are in for tests? Oh yes indeed. These are the true trials of the Pseudo- tumor patient. On the positive side, once you are finished with them, you will have assured yourself of your otherwise good health beyond a hypochondriac’s wildest dreams.
Your first tests will include a complete visual exam at your Ophthalmologist, including tests for glaucoma and in-depth examination with a slit-lamp. Possible damage to your optic nerve is one of the most difficult parts of this disease, and a determination of the degree of papilledema (the fancy-shamancy term for a swollen optic disc) and eye pressure must be determined. The doctor will probably also schedule a field of vision test to determine how much of your sight has been compromised.
The good news, which no one bothered to tell me until afterward, is that sometimes the lost vision returns when the eye pressure is successfully reduced. Either your Ophthalmologist, your Neuro-ophthalmologist or both will also arrange sophisticated pictures of your optic nerve with special photographic techniques, including a Dye Angiogram, which involves shooting you full of a special yellow dye. You will have chartreuse urine that day. How festive!
You will also be set up with an appointment with a neurologist for a screening. Sad to say, this disease gives you all of the reduced mental functioning and vicious hangovers of a brace of cocktails without any of the fun. Pick a doctor with good hands. With any luck he will be the one doing your spinal tap later.
Yes, I said a spinal tap is lucky. If you get to have the spinal tap, you will have won a major consultation prize-ding, ding, dingno brain tumor, no brain cancer! But first, you must pass the dreaded MRI. Many people will warn you of the terrors of having an MRI. In fact, the consent form mentions the option of taking Valium. Unfortunately you cannot take this because you are having an MRI of your brain. Here is the million-dollar secret to a relaxing MRI: never open your eyes. This simple precaution works for even the wussiest claustrophobe.
Section IV: Your Friendly Neighborhood Spinal Tap, AKA Lumbar Puncture
This is the most crucial of all of your tests and is also a major part of treatment for especially severe cases of Pseudo-tumor Cerebri. First of all, lumbar punctures are nowhere near as bad as you might imagine. The actual procedure is not the problem, but the aftermath is very unpleasant Oddly enough, for the same reason that you get those hangovers when you slam down too many margaritasdehydration. To lessen the pain, you will have to consume plenty of fluids before and after the procedure.
Your procedure will take place very early in the day. This is necessary for accurate readings. Have a friend or relative escort you to the hospital, but under no circumstance are you to allow anyone displaying cold symptoms to come anywhere near you. After I was at the hospital, accompanied by my father, who was sneezing the whole time, I was informed that infection with the cold virus can lead to meningitis. I was lucky not to get this-don’t tempt fate.
You will receive plenty of anesthetic and will feel great during the procedure. Beware, you are not Hercules. When they tell you to rest after the procedure, they are not kidding. I got impatient waiting for an elevator after my procedure and proceeded to walk down several flights of stairs. I paid later when the anesthetic wore off, and I felt like Thor personally slammed my noggin with his thunder-hammer.
The elevated spinal pressure, combined with a tumor free MRI determines whether you have pseudo-tumor or something else. A host of other tests will follow to establish why you have been so blessed.
Some examples of the tests to follow will include: ANA and Western Blot Tests (usually used to look for Aids, but also helpful in diagnosing a variety of immune system screw-ups including Multiple Sclerosis, Lupus, and Rheumatoid Arthritis), cholesterol tests (high cholesterol can cause serious eye problems including Macular Degeneration), glucose tests (Diabetes plays Merry Ned with your eyes) and many others; the types solely dependent on what previous tests revealed. You will probably find you are the healthiest sick person you know when all the tests for dread diseases turn up negative.
Don’t despair if after all of those tests, they cannot find one blasted reason why you have this problem. There is a large subsection of patients for whom the answer will never be known. The correct name for this is idiopathic (Latin for of unknown cause).
In many cases this means you are too darned fat, and you are a woman with working plumbing. Idiopathic Pseudo-tumor Cerebri in obese women of childbearing age is thought to be hormonal, but who knows? The good news is that a weight loss of as little as 8% often brings relief for these women.
Congratulations! The training wheels are off! My subsequent articles will tell you how to ride to victory.