Pseudotumor Cerebri
Shonee's Fight with Pseudotumor Cerebri
SUMMARY
Pseudotumor Cerebri: A Rare Disease
Pseudotumor Cerebri literally means a false brain tumor. It’s almost like an oxymoron. The word “false” gives us hope until used next to the word “tumor”. It is due to a buildup of pressure in the skull caused by a lack of absorption of our cerebrospinal fluid (CSF). This fluid protects our brain and spinal cord from injury, and is made and reabsorbed constantly by our bodies. Sometimes too much CSF can be made or not enough reabsorbed, causing an imbalance in the amount needed, and creating pressure and swelling on the optic nerve.
Women between the ages of 20-50 are most prone to suffering from pseudotumor cerebri, especially if they are obese. Other risk factors include:
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Addison’s disease, a dysfunction in your adrenal glands
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Anemia, a condition where one lacks red blood cells
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Behcet’s syndrome, an inflammatory disorder that is largely unknown and can affect multiple parts of the body
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Lupus, an autoimmune disease where the body attacks its own tissues and organs
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Lyme disease, the most common vector-borne disease in the U.S., caused by bacteria
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Kidney disease
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Sleep apnea
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Measles
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Underactive parathyroid glands
There are also medications that can make you more susceptible to suffering from pseudotumor cerebri. Some of these are:
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Birth control pills
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Growth hormones
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Lithium
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Steroids
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Vitamin A-based drugs
Symptoms include headaches, nausea, vomiting, dizziness, and pulsating sounds in the head. Unfortunately these symptoms mimic a real brain tumor, making it difficult to diagnose. And, because it feels and acts like a tumor, it can panic someone who is experiencing these symptoms. The pressure on the optic nerve can cause all or some of these symptoms to be experienced.
Signs that may warn you to seek medical attention and get diagnosed include blackouts, blurred vision or double vision, stiff neck and headaches, and ringing in your ears that pulses in time to your heart beat.
Having a doctor look at your optic nerve to determine if there is swelling is usually the first step. Your doctor may also perform one or more of these tests: spinal tap, CT scan, MRI, and regularly scheduled eye exams. Because this disease affects the brain and spinal cord, these are the two areas being evaluated in the tests. And, doctors tend to go from less invasive to more invasive, if prior test results are inconclusive.
Prompt treatment can help preserve your vision. One of the best ways to alleviate the pressure in the head is to lose weight. You may choose to use the advice of a dietician or personal trainer to lose weight effectively and safely. Limiting your salt intake can also alleviate the pressure and reduce headaches.
Prescription drugs and surgery are the most common ways to treat pseudotumor cerebri; these reduce the pressure in the skull. Steroids, migraine medications, and Diamox, a drug used to treat glaucoma, are used frequently. If medication doesn’t alleviate the symptoms, shunting or optic nerve sheath fenestration are two surgeries found to be effective. Shunting is performed to drain excess fluid around the brain or spine, while the later drains excess fluid around the optic nerve specifically.
With treatment, the pressure will be minimized and not cause undue discomfort. However, permanent vision loss or blurred vision can be constant, if not treated in a timely manner. And, the imbalance in cerebrospinal fluid, or CSF, can recur demanding a secondary round of treatment.
Most patients find that with weight loss and proper treatment of pseudotumor cerebri, they live pain-free, and can resume a normal life. Others, however, need additional support such as weight loss surgery and cessation of certain drugs, such as contraceptives or steroids, may lead to improvement.
Because the pseudotumors can recur, it is recommended that you follow up, get regular eye exams, and let your doctor know if new symptoms appear or existing symptoms increase in severity. As a largely misunderstood disease, and a rare one, it is important to schedule follow up visits and stay proactive. It’s always possible a real tumor could be disguised as a false tumor one day.
The Neurocenter of Our Body: The Brain
The brain is the neurocenter of our body. It is the communication center, instructing all of our other body parts, and is responsible for making us walk, talk, blink, and so much more. Our brain is a complex center sending and receiving hundreds of thousands of messages a day! We don’t think about everything our brain must do.
Cerebrospinal fluid is made throughout the day. It is reabsorbed in the blood vessels, sending the perfect amount to our brain and spinal cord. Both the brain and the spinal cord require the same amount of this vital fluid. When too much is made or when not enough is reabsorbed, the brain feels increased pressure and swelling. This rare disease is called Pseudotumor Cerebri.
Because your optic nerve is so close, and can be affected, it causes blurred vision, double vision and headaches behind the eye. Pseudotumor Cerebri can also cause nausea, dizziness, blackouts and ringing in the ears. However, it primarily displays itself through visual distortion.
Living with Pseudotumor Cerebri is inconvenient. Visual impairment and headaches can interfere with work, and cause increased tiredness, resulting in lethargy, depression, and weight gain. These symptoms can also wreak havoc on your social life and the ability to interact with others. It mimics that of a real tumor and puts increased pressure on the brain.
Obese women between 20-50 are at the greatest risk of Pseudotumor Cerebri; therefore, lethargy will only exacerbate the problem. Other factors that increase the risk of being diagnosed with this disease are Addison’s Disease, Lyme Disease, Lupus, sleep apnea, and Behcet’s Syndrome.
Doctors are usually able to discover and diagnose Pseudotumor Cerebri by an optic exam using ophthalmoscope, an instrument able to see swelling behind the eye, a CT scan or MRI, or a spinal tap to see increased pressure in the skull.
Because this disease is rare and difficult to diagnose, the primary forms of treatment deal with the eyes. Lasix, Diamox, and optic nerve sheath fenestration are three common treatments for this disease, all dealing with the optic nerve. Other forms of treatment include migraine medication and steroids to lower the pressure in the brain.
Since the symptoms and the treatments are often tied to the optic nerve and visual impairment, it is important to schedule annual eye exams to ensure your optometrist is able to discover increased pressure behind the eye before it creates great discomfort.
As the name implies, pseudo leaves you assured you do not have an actual tumor, rather you have tumor-like swelling that causes discomfort. Few people suffer permanent vision loss, and the symptoms of Pseudotumor Cerebri are easily treatable without invasive surgery.
MISC.RESOURCES
If you are uninsured and need assistance with medical bills, contact your local Social Security Office at 1-800-772-1213 to determine if you qualify for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). While Social Security Disability is determined by prior work experience, SSI is based on financial need.
PRESCRIPTION ASSISTANCE
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