Pineal Brain Tumor: Patient's Perspective

On April 11th, 2009 I was diagnosed with a pineal brain tumor.  From that day on my life has been an up and down roller coaster ride in trying to find answers as to what type of tumor I have, how it will be treated, and what will be the long term effects from it.  I have seen four neurosurgeons that specialize in such matters and each one has yet to give me a definitive answer to the increasing questions I have concerning my condition.  
 

What is the Pineal Glad?

The pineal gland or sometimes called the pineal body or “third eye” is an endocrine gland that produces melatonin, the hormone that regulates the sleep cycle.  It is the size of a pea at 8 mm in humans and is shaped much like a pine cone, thus accounting for its name.  It is located in the center of the brain, latterly positioned between the thalamic bodies; it is part of the epithalamus.
 

Diagnosing a pineal gland tumor

 

Phimosis Treatment
My diagnosis came after I started experiencing vertigo or extreme dizziness.  I assumed I was having an inner ear problem so I made an appointment with a local doctor to get her opinion.  She assumed as I did, that it was just an inner ear problem and prescribed medication to ease the dizziness.  After taking the medication for one day with no positive result, I called the doctor and asked to have an MRI (Magnetic Resonance Imaging) scheduled as I felt there was something else causing my symptoms.  The results of the MRI clearly showed the tumor, however it was impossible to tell what type of tumor it was.  There are three types of pineal gland tumors that are most common:

•    gilomas
•    germ cell tumors
•    pineal cell tumors

But there are at least seventeen types of tumors that can occur in this region; most of which are benign.  In my case, the doctors have yet to determine the type of tumor I have.  Diagnosing these types of tumors can be difficult unless the doctor decides to go directly to a biopsy of the tumor to determine its type and decide upon which treatment is best.  In my case, I have had blood tests and a spinal tap that failed.  These tests rule out certain types of tumors, but they rarely give you a definitive diagnosis unless you get a biopsy.  My next MRI is scheduled for July and if the tumor has grown I have decided that we should just go for the biopsy and stop the guessing game.  Knowing I have a pineal gland tumor is bad enough; not knowing what type it is, is far worse. 
Other diagnostic tests include neurological exams which include testing reflexes, coordination, hearing, balance, and vision tests.  Your doctor may also order an angiogram which involves injecting dye into the bloodstream which can then be seen on an x-ray which helps show the location of blood vessels in and around a brain tumor.
 

Symptoms of a pineal gland tumor

The symptoms I experienced prior to my diagnosis actually had nothing to do with the tumor itself.  I did, in fact, have some fluid on my inner ear which caused me to have the dizziness.  Call it fate or divine intervention that prompted me to ask for the MRI that discovered the tumor on my pineal gland.  The usual symptoms people generally experience with a pineal gland tumor are headaches, nausea and vomiting, seizures, memory loss, and visual disturbances.  The headaches are caused by cerebral spinal fluid (CFS) that builds up and causes pressure upon the brain due to the pineal gland tumor not allowing the fluid to flow down into the spinal canal which causes the condition called hydrocephalus.   Of these symptoms mentioned, I have experienced some increase in headaches, memory loss, and occasional bouts of nausea.  I have also experienced drastic changes in my sleep cycle; some days I sleep for 15 hours or more and some days I can’t seem to fall to sleep at all without the help of sleeping pills.  Needless to say, I pay great attention to any changes in my health; even if it’s something minor, it could mean something more.
 

Treatments for pineal gland tumors

Treatment for pineal gland tumors vary depending upon the type of tumor it is.  The first step is to determine which type of tumor it is by obtaining a biopsy to get the pathology of the tumor.  Benign pineal tumors can be removed surgically with little or no problem.  Germinomas, which are the most common of the malignant pineal gland tumors, can be treated with chemotherapy followed by radiation therapy where 90% of patients with this type of tumor are cured completely. 

Two months into my diagnosis the doctors and I are still aren’t sure what type of tumor I am hosting; this is possibly the hardest part of knowing I have this condition. It’s difficult to not be consumed with thoughts of what is going on inside my brain; I just try to think positive and go on with my day-to-day life.  Certainly, I will, at one point, have to have a biopsy, if only to satisfy the uncertainty of not knowing. 
 

Treatment alternatives

Conventional treatments are those listed above, but others, such as myself, have researched and discovered alternative treatments that have been proven to reduce and even rid the body of tumors, cancer, and other life threatening illnesses.  I am personally using an alternative treatment called “4-Herb Tea” which is a traditional Ojebwe Indian formula that has had many positive results in the treatment of many illnesses.  I suggest that you discuss any type of alternative treatment with your doctor before starting the treatment as conventional treatments may counter-act the effects of the alternative treatment as well as the conventional treatment.  You should always be aware of side effects of all treatments that are offered to you by your doctors and decide which treatment is best for you.  I also suggest that you seek second and third opinions before deciding upon what you should do next; after all, it is your body, your brain, your decision.
 

Psychological effects of a diagnosis of a pineal gland tumor

The irony of my diagnosis is that I am a student of psychology and upon completion of my degree I will specialize in the psychological care of patients diagnosed with life-altering or life-threatening diseases.  I am, in fact, my first case.  There are stages a patient goes through after a diagnosis such as this:

•    Shock is first to set in combined with a feeling of disbelief.
•    The brave face is next; telling your family and showing them you are strong and will beat this.
•    Depression and self pity is next.  You find yourself frustrated and confused as you seek answers but don’t get any.
•    Detachment is next.  You begin detaching yourself from the people you love because you don’t want to bring them down to your depressed level.  You don’t want to be a burden on them and thus you begin to detach and seclude yourself from all those who love you and want to help.
•    Reality and acceptance.  One day you will wake up and realize that this illness is controlling you instead of you controlling your illness.  You wake up and smell the roses and realize that you need your family, you need your friends, and you need to take control of your situation.

There will be times that you will fall back into depression from time to time and you will spend a day throwing yourself a pity party.  But you will come out of it and you will find the light at the end of the tunnel; you just have to keep pushing on.  What I learned is that you can’t look at the whole picture; you have to just look at it in sections, one day at a time.  The whole picture will over-whelm you and cause you a great deal of stress.  I also learned that your family and friends want to help you, so let them.  They feel helpless to do anything else so if they can help you, that helps ease their pain as well.

Take one day at a time, keep all your records with you when you travel, and never stop asking questions.  Your doctors are hired by you, so get your money’s worth.  If you aren’t happy with your doctor, find a new one.  You are in control of your life; always remember that.