Objects in mirror are closer than they appear.

I’ve spent a lot of my adult life being a classroom student. From my early 30s to my early 40s I was enrolled at the University of Florida where I earned three degrees in nine years. I completed a B.S. in psychology with a minor in gerontology. I graduated with highest honors by successfully completing a research study on memory and aging that my advisors told me was worthy of graduate level work. I went on to complete MEd and EdS degrees in mental health counseling, also with a minor in gerontology. I did a practicum counseling with Alzheimer patients and their caregivers and I did an internship counseling with college students on campus. While doing all this I also served as a Hospice volunteer helping people with terminal illness and their caregivers.

A few years ago, as I was approaching 50, I decided to spend some more time in the classroom. After going through major spinal issues and surgeries that left me with other health issues as well, I decided to heal myself by studying holistic nutrition. I wanted to learn how to use nutrition to not only get back to health, but also how nutrition plays a role in keeping us from getting sick or having physical deterioration in the first place; nutrition as preventative medicine, if you will. I earned a CNTP (with a 4.0 GPA) and was one semester away from completing the MNT when I began to realize something was seriously wrong with my brain. Something had changed. I went from being a person who had an enormous capacity for learning to realizing I couldn’t remember the paragraph I had just read. I went from having learned how micro and macronutrients work at the cellular level to not being able to remember which nutrients are fat-soluble (basic knowledge for a nutritionist). The information had all been there, stored in my brain as knowledge, and then it began slipping away. It was very subtle at first, so subtle I wasn’t sure it was a problem until I began my independent research project in my last semester. I could not figure out how to apply what I had learned to solving a health problem because I couldn't remember what I had learned. Ironically, I had graduated college 14 years earlier with a 3.9 GPA and highest honors for my research on memory, but now I couldn’t remember the basic facts about nutrients that I had just been taught. My brain had started dumping information and it stopped allowing me to retain anything new. Something was very wrong.

At first I was worried I was experiencing early onset Alzheimer disease or some form of early dementia. This being a frightening concept, I didn’t go to my doctor to ask about it. I kept thinking it would get better. I looked for signs of other changes, or worsening of my memory, and over the past year things did get worse. By the time I finally sought answers with a doctor, I was also dealing with a host of other symptoms that have continued to worsen. I do not have Alzheimer disease. I have a 17mm pineal gland cyst sitting in the middle of my brain. Based on all the medical testing I have had over the past six months, there is nothing else wrong with me but the presence of the brain cyst.

Now I find myself a student once again, not in the classroom, but learning a subject from direct experience and trying to educate myself as much as I can about what I have and what I can do about it. I’m learning that brain cysts are very similar to brain tumors and traumatic brain injuries. A large brain cyst like mine can do damage to brain function that very much resembles dementia…memory loss, inability to do simple math, poor word recall, not knowing today’s date, and not being able to read and follow instructions. These cysts cause damage to eyesight. They negatively affect sleep. They make it so you cannot tolerate noise or chaos. They create tremendous fatigue and malaise. The constant brain fog makes me feel stupid and slow. And the worst part is how all of that combined is trying to steal my life and livelihood. I miss being active. I miss pursuing my interests. I miss being with people. I miss being a part of the world. I miss traveling. And the world goes on around me like nothing has happened, but something has happened to me and here is my current reality:

• I'm doing the best I can. I’m learning to say no, even when I really want to say yes. I know that if I overextend myself, using more energy than I really have available to me, I will pay for it with increased symptoms. It’s a learning curve.
• I feel much worse than I look. A brain cyst is an invisible illness. Most days if I take a shower and do my hair and get dressed and put on a little make-up I will look like I am fine. I’m not fine. The exterior is not an adequate representation of the interior.  I couldn't help defending myself the other day to a FedX store clerk when she scolded me on the dangers of having left my credit card in a fax machine and driving away from the store. I looked at her straight in the eye and calmly informed her "I have a brain tumor and I can't remember things." She became very apologetic, but I made the point that just because a person looks well, they may not be well.
• I’m scared. I’m trying to BE brave, ACT brave, but a brain mass that has no treatment option other than brain surgery is scary as hell, and so is doing nothing. If I leave the cyst in my brain I don’t know how bad my cognitive symptoms and vision loss will get or if they will become irreversible (or if they already have). If I have brain surgery I don’t know if I will get better or worse or die. These are all very real concerns that don’t make my decision process easy at all. Yet, I am in the process of making a very big, scary decision. I have a surgery date scheduled and I have a second opinion scheduled. And I don't know what to do. 
• Please, don’t take anything I do or don’t do personally. I know I forget the things you've told me. I know I don’t call you as much as I used to. I know we aren’t getting together to do things like we used to. This is in direct proportion to how I feel, not how I feel about you. I no longer have good days and bad days. Now I have bad days and worse days. But…I still want to hear from you. I still want to know about you and your life. I still want to keep in touch. I would love to sit and chat, have a cup of tea. I’m not dead, so I have that going for me (a little brain cyst humor)!
• I have hope. I hope to get well. I hope to get back to the life I was enjoying. I may never have that again, but I hope I will. I hope if I decide to have brain surgery that it will go very well, relieve all my symptoms, and leave me better off than I am now. I hope. I hope I make the right choice when I do choose. Objects in mirror are closer than they appear!

My greatest knowledge in all of my education did not come from a classroom. It came from my Hospice volunteer experience in my 30s. I learned that giving my time and compassion to helping someone in need, particularly someone at the end of life, is way more fulfilling than any job for which I ever got paid. I also learned from conversations with my hospice patients that by the time you get to the end of your life most of the things you have spent your precious time doing will not matter to you. You won’t be lying on your deathbed thinking, “I didn’t work hard enough” or “I didn’t earn enough.” What will matter will be the relationships in your life. You will be asking yourself, “did I love enough,” and “was I open to being loved enough?” It is this knowledge that I have been reflecting on a lot lately. Not because I feel I’m at the end of my life, but because I don’t want to wait until I’m there before I pay attention to what matters most. 

Validation from the National Organization for Rare Disorders (NORD)

The National Organization for Rare Disorders (NORD) lists symptomatic pineal cysts as a rare disorder, complete with references!

http://rarediseases.org/rare-diseases/pineal-cysts-symptomatic/ 

Pineal Cysts, Symptomatic

Synonyms of Pineal Cysts, Symptomatic

• Nonneoplastic Large Pineal Cysts

General Discussion

Pineal cysts are benign (non-cancerous) fluid-filled sacs located in the region of the brain that contains the pineal gland. Small pineal cysts (.5 cm or smaller) are common occurrences, often found incidentally on routine neurological exams. Small pineal cysts rarely cause symptoms (asymptomatic). Larger pineal cysts are rare findings that may cause a variety of symptoms (symptomatic). Symptoms may include headaches, increased pressure on the brain because of accumulation of excessive cerebrospinal fluid (hydrocephalus), and vision abnormalities. Large symptomatic pineal cysts may potentially cause serious conditions such as seizures and loss of consciousness. The exact cause of symptomatic pineal cysts is unknown.

Signs & Symptoms

The most common finding associated with symptomatic pineal cysts is headaches. Headaches may occur in three forms: chronic, intermittent headaches; short-term, recurring, sudden (paroxysmal) headaches; or painful, persistent headaches. In most cases, symptoms occur secondary to hydrocephalus or compression of certain structures in the brain near the pineal region. 

Hydrocephalus is a condition marked by increased pressure on the brain because of the accumulation of excessive cerebrospinal fluid in the skull. Symptoms secondary to hydrocephalus include headaches, nausea, vomiting, lethargy, seizures, and accumulation of excessive amounts of watery fluid in the optic disks (papilledema). 

Affected individuals may also have a variety of symptoms secondary to compression of other structures near the pineal region of the brain. Such symptoms may include double vision (diplopia), blurred vision, dizziness (vertigo), inability to coordinate voluntary movements (ataxia), and paralysis (palsy) of upward gaze (Parinaud’s syndrome). 

In rare cases, additional symptoms may occur including loss of consciousness (syncope), mental status changes, and bleeding (hemorrhaging) into the cyst (pineal apoplexy). According to the medical literature, pineal apoplexy has resulted in four deaths in individuals with symptomatic pineal cysts.

In some cases in young children, pineal cysts have been associated with premature sexual development (precocious puberty).

Causes

The exact cause of large pineal cysts is unknown. One theory suggests that hormonal influences during pregnancy or menstruation may play a role in the development of large pineal cysts in young women. 

Another theory suggests that bleeding (hemorrhaging) in the pineal region may play a role in the development and progression of pineal cysts. Hemorrhaging into an existing asymptomatic pineal cyst may cause it to grow and become symptomatic (hemorrhagic expansion). In one report in the medical literature, a symptomatic pineal cyst developed secondary to hemorrhaging in the pineal region.

Symptoms of large pineal cysts occur because of the compression of surrounding structures by a cyst. Hydrocephalus occurs because of the compression of the aqueduct of sylvius, a structure that normally allows for the passage of excess cerebrospinal fluid. 

Compression of the quadrigeminal plate results in Parinaud’s syndrome.

In some cases, in the walls lining a pineal cyst, choroids plexus cells have been detected. These cells are believed to be involved in a process (ionic fluxes) that ultimately attracts water through semipermeable membranes causing enlargement of pineal cysts.

Affected Populations

Of the cases reported in the medical literature, symptomatic pineal cysts have affected females more often than males. Theoretically, individuals of any age group can be affected; however, only children and young or middle-aged adults have been reported. Approximately 100 cases of large symptomatic pineal cysts have been reported in the medical literature. However, many cases may go unrecognized leading to under-diagnosis and making it difficult to determine the true frequency of symptomatic pineal cysts in the general population.

Related Disorders

Symptoms of the following disorders can be similar to those of symptomatic pineal cysts. Comparisons may be useful for a differential diagnosis: 

Pineal Region Tumors

A variety of different tumors affecting the pineal gland have been identified including germinomas, teratomas, choriocarcinomas, pineocytomas, pineoblastomas, and gliomas. As with symptomatic pineal cysts, pineal region tumors may compress nearby structures resulting in a variety of symptoms including increased pressure on the brain because of accumulation of excessive cerebrospinal fluid (hydrocephalus), headaches, nausea, vomiting, and vision abnormalities. Some pineal tumors may have a cystic appearance and may be indistinguishable from large pineal cysts with microscopic examination of affected tissue.

Diagnosis

A diagnosis of symptomatic pineal cysts may be suspected based upon a thorough clinical evaluation, a detailed patient history, identification of characteristic symptoms and the findings on certain tests specifically computed tomography (CT scan) and magnetic resonance imaging (MRI). During CT scanning, a computer and x-rays are used to create a film showing cross-sectional images of the brain's tissue structure. During MRI, a magnetic field and radio waves are used to create cross-sectional images of the brain.

Symptomatic pineal cysts must be differentiated from pineal tumors. Some pineal tumors may be cystic in appearance and may be indistinguishable from pineal cysts without microscopic examination of affected tissue.

Standard Therapies

Treatment

No treatment is prescribed in large pineal cysts that do not cause symptoms (asymptomatic). However, surgical removal (resection) of a cyst may be performed if persistent neurological symptoms are present or if a cyst grows. Asymptomatic cysts should be routinely monitored to detect an increase in size.

Surgical removal (resection) of symptomatic pineal cysts has led to improvement or disappearance of symptoms in most cases. Surgical techniques for removing symptomatic pineal cysts include craniotomy, endoscopy and stereotactic aspiration.

Craniotomy is a procedure during which a section of the skull is opened allowing the surgeon to remove the symptomatic pineal cyst. During this procedure, a small opening may be made into the cyst wall allowing cystic fluid to drain into the normal CSF pathway (fenestration).

Endoscopy is a procedure during which a thin, flexible tubelike instrument is surgically inserted into the skull and used to remove the cyst.

Another procedure called stereotactic aspiration has been used to treat individuals with symptomatic large pineal cysts. During this procedure, a computer creates a three dimensional model of the brain from CT and MRI scans. This model enables the surgeon to accurately locate the cyst within the skull. A tube is surgically inserted into the symptomatic pineal cyst and its fluid contents are drained or sucked (aspirated) out. Stereotactic aspiration is appealing because it is a minimally invasive procedure; however, the cyst may reaccumulate requiring another surgery.

Other treatment is symptomatic and supportive.

Investigational Therapies

Information on current clinical trials is posted on the Internet at www.clinicaltrials.gov. All studies receiving U.S. government funding, and some supported by private industry, are posted on this government website.

For information about clinical trials being conducted at the National Institutes of Health (NIH) Clinical Center in Bethesda, MD, contact the NIH Patient Recruitment Office:

Tollfree: (800) 411-1222

TTY: (866) 411-1010

Email: prpl@cc.nih.gov

For information about clinical trials sponsored by private sources, contact:

www.centerwatch.com

Resources

Please note that some of these organizations may provide information concerning certain conditions potentially associated with this disorder.

NORD Member Organizations

• American Brain Tumor Association
  • 8550 W. Bryn Mawr Avenue, Suite 550
  • Chicago, IL 60631 USA
  • Phone: (773) 577-8750
  • Toll-free: (800) 886-2282
  • Email: info@abta.org
  • Website: http://www.abta.org
• National Brain Tumor Society
  • 55 Chapel Street
  • Suite 200
  • Newton, MA 02458 
  • Phone: (617) 924-9997
  • Toll-free: (800) 770-8287
  • Email: info@braintumor.org
  • Website: http://www.braintumor.org

Other Organizations

• Children’s Brain Tumor Foundation
  • 274 Madison Avenue, Suite 1004
  • New York, NY 10016 United States
  • Phone: (212) 448-1595
  • Toll-free: (866) 228-4673
  • Email: info@cbtf.org
  • Website: http://www.cbtf.org
• Genetic and Rare Diseases (GARD) Information Center
  • PO Box 8126
  • Gaithersburg, MD 20898-8126 
  • Phone: (301) 251-4925
  • Toll-free: (888) 205-2311
  • Website: http://rarediseases.info.nih.gov/GARD/
• International Brain Tumour Alliance
  • c/o Roxburghe House
  • 273-287 Regent Street
  • London, W1B 2AD United Kingdom
  • Phone: 4401737813872
  • Email: chair@theibta.org or kathy@theibta.org
  • Website: http://www.theibta.org
• Skull Base Institute
  • 8635 West 3rd Street
  • Suite 1170W
  • Los Angeles, CA 90048 
  • Phone: (310) 691-8888
  • Email: staffskullbaseinstitute.com
  • Website: http://www.skullbaseinstitute.com

References

TEXTBOOKS

Menkes JH, au., Pine JW, et al., eds. Textbook of Child Neurology, 5th ed. Baltimore, MD: Williams & Wilkins; 1995:668-9. 

Bruce JN, Balmaceda CM, Stein BM, Fetell MR. Pineal Region Tumors. In: Rowland LP, ed. Merritt’s Textbook of Neurology. Lippincott, Williams & Wilkins. Philadelphia, PA. 2000;341-7.

DeVita Jr VT, et al., eds. Cancer Principles and Practice of Oncology. 5th Ed. New York, NY: J.B. Lippincott Company; 1997:2064-6. 

JOURNAL ARTICLES

Peres MF, Zukerman E, Porto PP, Brandt RA. Headaches and pineal cysts: a (more than) coincidental relationship? Headache. 2004;44:929-30. 

Dickerman RD, Stevens QE, Steide JA, Schnedier SJ. Precocious puberty associated with a pineal cyst: is it disinhibition of the hypothalamic-pituitary axis? Neuro Endocrinol Lett. 2004;25:173-5. 

McNeely PD, Howes WJ, Mehta V. Pineal apoplexy: is it a facilitator for the development of pineal cysts? Can J Neurol Sci. 2003;30:67-71. 

Michielsen G, Benoit Y, Baert E, Meire F, Caemaert J. Symptomatic pineal cysts: clinical manifestations and management. Acta Neurochir. 2002;144;233-42. 

Engel U, Gottschalk S, Niehaus, et al., Cystic lesions of the pineal region – MRI and pathology. Neuroradiology. 2000;52:399-402. 

Konovalov AN, Spallone A, Pitzkhelauri DI. Pineal epidermoid cysts: diagnosis and management. J Neurosurg. 1999;91:370-4. 

Chandy MJ, Damaraju SC. Benign tumors of the pineal region: a prospective study from 1983 to 1997. Br J Neurosurg. 1998;12:228-33. 

Mena H, Armonda RA, Ribas JL, Ondra SL, Rushing EJ. Nonneoplastic pineal cysts: a clinicopathologic study of twenty-one cases. Ann Diagn Pathol. 1997;1:11-8.

Kreth FW, Schatz CR, Pagenstecher A, et al., Stereotactic management of lesions of the pineal region. Neurosurgery. 1996;39:280-91.

Fleege MA, Miller GM, Fletcher GP, Fain JS, Scheithauer BW. Benign glial cysts of the pineal gland: unusual imaging characteristics with histologic correlation. AJNR Am J Neuroradiol. 1994;15:161-6. 

Fain JS, Tomlinson FH, Scheithauer BW, et al., Symptomatic glial cysts of the pineal gland. J Neurosurg. 1994;80:454-460. 

Wisoff JH, Epstein F. Surgical management of symptomatic pineal cysts. J Neurosurg. 1992;77:896-900. 

Klein P, Rubinstein LJ. Benign symptomatic glial cysts of the pineal gland: a report of seven cases and review of the literature. J Neurol Neurosurg Psychiatry. 1989;52:991-5. 

Vorkapic P, Pendl G. Microsurgey of pineal region lesions in children. Neuropediatrics. 1987;18:222-6.

Years Published

2005, 2007

How many doctors does it take to change a light bulb?

Q: How many doctors does it take to change a light bulb?

A: Twenty. One primary care physician to hold it while 19 specialists take it apart piece by piece and examine each piece separately under a microscope.

A doctor, a surgeon, a radiologist, a nurse and a physician’s assistant walk into a bar. The bartender says, “What is this? Some kind of a joke?”

Lady talking to her friend, “I was going to sue my neurosurgeon, but he changed my mind.”

A patient walks into a doctor’s office. “Doctor, doctor, I think I’m shrinking!” The doctor says “Now settle down. You’ll just have to be a little patient.”

Ahh, the humor! In the words of the wise Jimmy Buffett, “If we couldn’t laugh we would all go insane!”

Fortunately, despite dealing with some miserable symptoms for months, my humor…or more precisely my desire for humor…is still intact! Honestly, I have to be able to laugh at everything I’ve gone through because if not, I would go insane. 

Unfortunately, I don’t have any more clarification on what is causing my symptoms, despite having thus far seen seven doctors of various specialties, having extensive lab work, two specialist eye exams, two sleep studies, two lumbar punctures (one attempt, one completion) and three MRIs. I can remember all of this because I keep extensive notes…my notes = my memory. I have a notebook of medical records and they all indicate the same thing…I have a pineal gland cyst in my brain and a host of symptoms that no one believes are related to the cyst, yet not one doctor has been able to tell me precisely what IS causing my symptoms.

All of the doctors I have consulted with in Colorado have now discharged me without a diagnosis and without any treatment. I am not under any doctor’s care. They don’t know what is wrong with me, however, they all say with certainty that the pineal cyst in my brain is NOT causing my symptoms. The most they can offer is to go and see yet another neurologist for “headache management.” The flaw in that approach, from my perspective, is that it negates all of my other symptoms. Taking a pill to manage a headache (which isn't what I have) is not going to help my vision, or my fatigue, or my brain fog. I keep insisting that I’m not looking for symptom management. I’m looking for a diagnosis that explains the cause of my symptoms and then treatment for that cause. There is a distinct difference between the way western medicine physicians practice (manage the symptoms, which typically means take a pill) and my personal goal for medical care (to find and treat the problem).

So, what now? That’s a great question! First, steadfastly remain positive! I have become a member of a wonderful support group of people that have come together in a private Facebook group to share information and education. I've learned more from them than any of the doctors I've seen. They too have experienced or are experiencing the same or very similar symptoms to my own and they too have a known pineal gland cyst in the brain. Some have had surgery to remove the pineal cyst with very good results and resolution of symptoms. Many, like me, have been told by their medical community that the pineal cyst is not responsible for their symptoms. Some are pursuing surgery, some are not. It’s a personal preference for some. Some are fundraising to be able to afford their surgery because either they don’t have insurance or their insurance won't cover it. Regardless of an individual’s situation, we find strength in knowing that we are not alone and together we can help change the medical myth about pineal cysts. But it won't change fast.

The fact remains there are very few neurosurgeons in the world who understand symptomatic pineal gland cysts, but there are a few. I have already consulted with one, Dr. Dong Kim at UT Texas Health Science Center in Houston. He wanted me to have more testing to be sure nothing else was responsible for my symptoms (which I agreed with). I have now ruled out everything else that the doctors in Denver suggested. So, I will be sending Dr. Kim all of these tests results for his opinion. I have also learned of a neurosurgeon at the Medical University of South Carolina, Dr. Sunil Patel, who also understands and treats symptomatic pineal gland cysts. Many patients report successful surgery with Dr. Patel and also that he is a very wonderful surgeon and person. So, I am also making arrangements to send Dr. Patel my medical records and a request for a consultation. I feel that the best way to move forward is to have two consultations from two neurosurgeons who treat symptomatic pineal gland cysts. That way I can make a very informed decision when it comes time to consider surgical removal of the cyst, which is the only treat available for them. If both doctors determine I am a candidate for surgery, then I will have a choice to make about where I go to have it done. Fortunately both surgeons are in my insurance network and that removes one more big hurdle from access to treatment, the financial one. That is, of course, as long as I can get insurance authorization when and if the time comes for that.

I thank you for reading. I thank you for caring. I thank you for your prayers, good thoughts, positive energy, and well wishes. It means so much to me and helps more than you know! One foot in front of the other. One day at a time. Keep moving forward! And keep laughing!