What is the big deal?

I have discovered that although brain surgery is one of the most ancient of medical practices (evidence has been found dating back to the Neolithic period around 10,000 BC), the understanding of the brain, especially as it relates to surgery, is truly still in its infancy. I had no idea. We've obviously made far advances in brain surgery, but there is still a long way to go. This might explain why more surgeons won't do the kind of surgery I need done. After all, what is the big deal?

I think I wrote in a previous post that this is the most difficult part of the brain to operate on given that the surgeon will be in direct contact with the most vital brain functions. There is a book called "Do No Harm - Stories of Life, Death, and Brain Surgery," written by neurosurgeon Henry Marsh from London, England, (May, 2015). He has a chapter devoted to pineocytomas (it is believed I have either a pineocytoma or pineal cyst - their symptoms are the same). Below I explain a little about my own upcoming brain surgery and then offer an excerpt from the book which explains about the vital functions the neurosurgeon will come in contact with during the surgery.

Warning...CREEPS ME OUT Alert: If you don't like details of surgery because they creep you out, stop reading here!

For my surgery, they will do a craniotomy on the back of my head (they will remove a portion of my skull and then put it back with a titanium plate after surgery). The surgeon will use a microscope to access the pineal region tumor through the craniotomy. 

For those of you who are curious, and if you are one of those who likes to know about surgery stuff, here is an excerpt from the chapter on pineocytomas (and thanks to my cyster Lynsie Payne for making this image from the book):

What's the big deal? Pretty big deal and really fascinating stuff! I'm totally in awe of surgeons who do this kind of work, especially since there are so few of them. I'm hoping that patients like myself...the pineal guinea pigs of brain surgery...the pineal pioneers of changing beliefs...will help change what is understood about the brain for future generations! Pineal tumor sufferers need more surgeons in the world!

Three weeks to my surgery date! 

Copy that, Houston!

Houston has confirmed my surgery date for:

Hmmm. November 4. Traditionally known as voting day in America. Well that's certainly appropriate because I vote YES to evict the unwelcome brain invader! Who's with me?

Between now and then I have lots to do because I'm going to be in Houston for a while and home recovering afterwards for however long it takes. Slow and steady, day by day.

I'm going to try very hard to focus only on a positive, successful outcome and not on having to go through the surgery itself or the what if's. Otherwise, I'm going to get really, really scared.

I'm also going to focus on gratitude for everyone who has reached out to me with offers of help, prayers and healing energy, and encouragement. From this I draw strength! I am surrounded by so many wonderful, loving people. Thank you for your kindness and concern. Thank you for being my cheerleaders!

And now, because humor makes everything less scary, here's a little humor...

"Brain surgery. Its not exactly rocket science!"
(click on the link below for a youtube video)
Brain Surgery - Mitchell and Webb

Houston, I have a problem!

When I began on this journey I decided to write a blog because it became evident very early on that there is a lot of confusion about pineal cysts and very little accurate information available. I wanted to document my journey because if I can help just one person not have to go through months or years of confusion and illness by getting faster access to knowledge than I had, it will be all worth it to me! I knew early on that I was going to have to do a lot of research on my own. Most doctors deny them. Most neurosurgeons deny them. The standard response is “the cyst is not causing your symptoms.” Most often patients are told they have migraine syndromes and the only treatment is pain management of the migraines. This is what I was told by the doctors and surgeons I have seen in the Denver area. I wonder now how many “migraine sufferers” actually have symptomatic pineal gland cysts and are not properly diagnosed?

I knew I didn’t have migraines. I knew there were a host of other symptoms I was having that were not explained by migraines. I also don’t like taking pharmaceutical drugs for symptom management when 1) they lead to lots of negative side effects leaving you worse off, and 2) they don’t treat the problem leaving you dependent on drugs. My approach from the beginning has been to find a cure for the problem, not a management of the symptoms. I was told over and over “the cyst is not causing your symptoms.” So, I kept searching and researching. 

By the Grace of God, my searching led me to a private support group on Facebook where I met wonderful people (Cysters, as we fondly refer to ourselves) who have already been down the long road I was embarking on, or like me were getting ready to go down it. This is where I learned that there are primarily only three surgeons in the U.S. (and maybe only 2 in other countries) who agree that pineal cysts can be symptomatic (can be, they aren’t always) and agree that the only way to treat them is to remove them. This is also where I learned that the most important thing to do is rule out everything else. And I have done this. There is nothing else going on with my health and nothing else exists that could explain my symptoms. I feel very certain I have done my due diligence.

I have now consulted with two of the three surgeons (the two who are in network with my insurance), one in Houston (Dr. Dong Kim) and one in Charleston (Dr. Sunil Patel). Both are highly experienced neurosurgeons, and more importantly, they are both experienced in operating in the part of the brain where the pineal gland resides. The pineal gland, from where the cyst develops, is located deep in the center of the brain. In brief, the pineal gland is part of the endocrine system and its main job is regulation of the sleep/wake cycle by releasing melatonin.

Not all neurosurgeons operate in this part of the brain. It takes great skill to get to the area due to the vital importance of structures around this area. It is the most risky of all brain surgeries. Both of the surgeons I have consulted with are specialists in this surgery and both agree the invader needs to come out if I want to get better. They also both agree that the pineal gland is long gone, becoming incorporated into the invader and not having worked effectively for a long time because of this. 

Although the two surgeons agree the invader is causing my symptoms, they don’t agree on exactly what they believe the invader to be. 

Dr. Kim in Houston believes I have a pineal cyst, essentially a benign fluid-filled sack that may have partially calcified depending on how long it has been in there. Dr. Kim believes the cyst causes symptoms because of its position in the brain, the displacement of fluid and compression of the surrounding structures.

Dr. Patel in Charleston believes I have a pineocytoma, essentially a rare benign brain tumor arising from the pineal gland that can be both solid and cystic. Dr. Patel believes that the pineocytoma contains protein that leaks from the tumor causing the brain to react to the excess protein. He believes this reaction is what creates the sensation of increased pressure in the brain.  

So you can see that even among surgeons who treat these invaders the information is still very confusing about what exactly I have going on. Either way, cyst or tumor (you say poTAYto, I say poTAHto), they both cause the same set of symptoms based on the structures they impact in that area of the brain; these being pressure in the brain with headaches, vision disturbances, nausea and vomiting, dizziness, memory and cognitive issues, and chronic fatigue. Those are my main symptoms.

Having met with both neurosurgeons and weighed all my options, I chose Dr. Kim in Houston to remove the pineal cyst/tumor.

First, it was not an easy decision to choose to have brain surgery and second, not easy to choose a surgeon when I believe both of them to be completely capable. I know some people won’t understand why I am choosing surgery at all. This is truly an invisible illness. For the most part, I look physically well. However, I haven’t felt physically well in seven months, and even longer since I knew something was going wrong with my eyes and my brain. I can’t accept living with it if there is something I can do to get better. I don’t want to be a sick person if I can be a well person. Trust me when I say I have fully researched what is known about these invaders and am completely at peace with the knowledge that nothing else is going to help me get well and I am a peace with my decision.

It is miserable having a pineal cyst/tumor. I feel awful most of the time. I can’t see very well. I’ve given up reading. It causes too much eyestrain. I can’t physically do the things I want or love to do. I have become mostly homebound. When I do get out and do things I easily become exhausted, have increased symptoms and then have to recover from it. It is frightening, especially not knowing exactly what will happen if I leave it in there. Will I have permanent cognitive deficits? Will I have permanent vision loss? No one, including the surgeons, knows the answers to these questions.

My surgery is being scheduled for November at Memorial Hermann – Texas Medical Center. I will be in the hospital 2-3 days post-op and then will have to remain in the Houston area for two weeks before I am cleared to travel back home where healing and recovery continue, one day at a time. The hope is that I will come out of the surgery with improvement/resolution of my symptoms…without having gained any additional symptoms from the surgery itself.

That’s the update. I’m waiting to get my confirmed surgery date and will then be making arrangements for life in Houston for a few weeks. There is a light at the end of the tunnel and I’m getting closer to it!

To everyone who is willing to pray, or send positive energy, or good thoughts, I would greatly appreciate them. Please also send prayers for my husband, my daughters, and my family. I know this is very stressful for them. I wish it wasn’t. I wish I wasn’t going through this at all. But…go big or go home, right? Ironically, six years ago this week I went through a 5-level lumbar fusion, anterior and posterior approach, that I was told was the most difficult elective surgery anyone could ever have and I did amazingly well. So…I can do this! After all, my gray matter matters to me!

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!

Excuse me, you're blocking my view!

Picture this…you are sitting in a crowded theater and someone wearing a really tall hat, or someone who has really big hair, sits down right in front of you and blocks your view. Or, you are standing in a crowd of people, all squished together where movement is nearly impossible, just so you can get a glimpse of someone or something you’ve been longing to see. You can’t possibly move but somehow THE tallest person in the crowd manages to maneuver themselves to stand right…in front…of you. Irritating, isn’t it? So irritating when someone, or something, is blocking your view. I recently stayed in a hotel in Houston and I looked out my window from the 11^th floor thinking I was going to get a beautiful view of the downtown Houston skyline on a sunny, blue sky, summer afternoon. I pulled back the curtains to get a look and I got this…

This is what my life feels like at this time...like something is blocking my view. I can’t see anything else but the illness that has circumscribed my life. When you are ill and no one knows exactly what is wrong with you, the waiting is irritating and time passes slooowwwly. My life is in slow motion. Living life on my terms has been put on hold for months now. I’m living life according to the limitations of extreme fatigue, pressure headaches, dizziness, nausea, and blurry vision. I’ve had constant pressure in my head for so long now that I am beginning to wonder what normal feels like. I’ve forgotten. Seriously. I wonder if the pressure were to be relieved if I would notice anything changed, or perhaps I would feel like I have never felt before. I don’t know. I hope I will soon find out.

I’ve had a third consultation with a neurosurgeon, Dr. Dong Kim, Director of the Mischer Neuroscience Institute at Memorial Hermann Medical Center, UT Health Sciences Center in Houston. Dr. Kim is a firm believer that for some patients, pineal gland cysts can be symptomatic and removal of the cyst is the only way to resolve symptoms. It seems even with what he knows about pineal gland cysts, and how in alignment most of my symptoms are with that diagnosis, he isn’t absolutely certain the cyst is causing my symptoms. And I’m happy that he is honest about it. I certainly do not want to undergo brain surgery only to find out it didn’t resolve my symptoms. Admittedly, I presented on self-referral to Dr. Kim earlier in my path to a diagnosis than most patients he sees for symptomatic pineal cysts. Most patients have suffered for years, treatment after treatment, diagnosis after diagnosis, everything else failing only to find out the pineal gland cyst they had been told was incidental and asymptomatic was actually causing their symptoms all along (because excision of the cyst resolved their symptoms). I, however, being the researcher and educator I am, did not want to go down that long road of treatment after treatment, diagnosis after diagnosis, only to find out the answer was the cyst. So I jumped over years of failed treatments (after realizing doctors were trying to diagnose me with migraine headaches, which I know I do not have) and went straight to the source. The part about my presentation that is most curious to Dr. Kim is that we know that the cyst was present in 2009 on an old MRI, and it was only slightly smaller then than it is now. And although I know I had slow onset of blurry vision and memory/cognitive complaints over the past couple of years, and slow onset of pressure headaches and nausea over the past year, something happened in February that changed all of that…something that made my symptoms come on strong and not go away. And he can’t seem to explain what changed all of the sudden that brought this on. So with those two things combined, he wants to be sure. I respect that immensely. And he expressed admiration for my research and desire to treat the problem, not just the symptoms.

Dr. Kim proposed a plan in alignment with the second neurosurgery consult I received at University of Colorado. He agreed that I should first get a lumbar puncture to measure the pressure in my cerebrospinal fluid. If the pressure is high, and if removing a significant amount of fluid results in an improvement in my symptoms over a period of a couple of days, then he feels the diagnosis is more likely pseudotumor cerebri (false brain tumor) and the appropriate course of treatment would be placement of a brain shunt to control CSF fluid pressure (which I can have done at the University). If, however, the lumbar puncture is negative for pressure, and if my symptoms show no resolution over the next day or so, then he feels the likely diagnosis is a symptomatic pineal gland cyst and he would offer me the surgery to remove it.

The lumbar puncture is scheduled for this coming week. By the end of the week, I should have an answer that will tease apart these two diagnoses. One more week and hopefully my view will clear up nicely, both figuratively and literally!

Finding Peace in a Most Unlikely Experience

It sucks to be sick. There, I said it. It really sucks to be sick. It sucks when I can’t make plans for today or the next day because I don’t know if I will feel well enough to follow through with them. It sucks when sickness goes on and on for months, essentially shutting down my life. It sucks that because of illness I have become less and less active, which in turn contributes to my being more and more sick. I’m not moving my body enough, not getting enough enjoyment out of living, not leaving my house enough. It sucks when life becomes smaller and smaller, and when people stop reaching out to me to do things with them, and when I stop reaching out to others. The fatigue sucks because I don’t feel like I did anything to be fatigued by, but maybe my body is fatigued from trying to manage the effects of a brain mass. It sucks that my husband had a commitment to work in Brazil for five weeks right in the middle of my dealing with illness…mostly because he’s my best friend and I want my best friend beside me for strength…and hugs…when life is majorly sucking. It sucks that we’ve been planning for more than a year to make a two-week trip abroad in July of 2015…a trip that can never be planned in quite the same way, or with the same people, ever again…and now I have to face the reality that the trip will likely not occur for me.

And it really sucks to not understand what is happening with my brain, mainly because I’ve been seeking answers from doctors who don’t understand what is happening with my brain. If brain surgeons don’t have answers, that begins to feel pretty hopeless…frightening, in fact. As an update, my second consultation with a brain neurosurgeon resulted in another "its not the cyst" conversation, but at least the willingness to explore what is causing the intracranial pressure by ordering a lumbar puncture to measure the pressure. Assuming it is abnormal, they would recommend placing a shunt in my brain to control flow of cerebral spinal fluid and thus decreasing the pressure. My primary care referred to this plan as treating the symptom and not treating the cause. But I digress. This post is about finding peace in a most unlikely experience and taking the post in that direction is far from peaceful.

In the midst of everything feeling sucky and scary, there now come these moments of peace, moments of clarity, moments of almost euphoria. I’m not dealing with a terminal illness, at least not that I know of (not so sure the answers I’ve received thus far are without-a-doubt accurate ones, but for now we are going with a belief in a “benign cyst”). Yes, I am grateful for this. Cancer sucks MORE than a benign cystic brain mass for sure! But there are degrees of suckiness. Any kind of abnormal thing growing in the brain is not a positive thing. Certainly one that sits deeply in the center of the brain that is not easy to remove makes an impact on the brain and its functions…the gray that matters to me. This I know to be true because I am living with the symptoms from it.

But the peace, the clarity, the euphoria? What is that all about? I’ve been trying to pay attention and now I realize there are certain benefits to having your life get smaller and smaller. I know, it sounds like such an odd paradox but this is what I’m experiencing. For one, when your life gets smaller and smaller, you become more and more in the moment. I’m not thinking about something in the past, nor am I worrying about something in the future. I’m typing these words, right here, right now…fingers hitting the keys. I’m washing a dish, feeling the warmth of the water on my hands and focused on the goal of getting the dish clean. I’m petting my dog, feeling the softness of his fur on my hand, and watching as he reaches up to place his paw on my leg, as if to reciprocate and pet me too. I’m laying still and experiencing intense nausea and trying not to throw up…and nothing else is going on. Nothing. Just the experience of the nausea. Nothing needs to be done. Nothing is waiting for me to do it. No one is needing me. No one is waiting for me. The mass sits quietly in the center of my brain and it doesn’t ask anything of me. Just…BE.

My definition of misery is wanting something to be different than it is; the belief that something is not right and needs to be changed; not accepting the status quo. You know, like having a brain cyst is misery because it isn’t supposed to be there and it has to go and its make my life suck. And because I hold that belief, I am spending every waking minute focusing on the “not wanting” of the brain mass and pretty soon I am in misery…misery because I want something to be different than it is. So far, I don’t have a lot of control over whether or not the brain mass is there. And maybe I never will have a choice in the matter…MY gray matter. What if, let’s say, I exhaust all reasonable consultations with brain surgeons and the result I hear is “you have an inoperable brain cyst.” Or what if I find a brain surgeon who says “This cyst MUST come out,” but my insurance company denies coverage (a very real possibility with the apparently rare symptomatic pineal gland cyst in my brain). What then? I’m still sick. I’m still losing my vision. I still have short term memory loss and decreased cognitive function. But given those circumstances, I would have to find a way to “live” with it, wouldn’t I? And in that case, I could either focus on the misery of the situation…wanting something to be different than it is…or find some way to accept what is. Or, let’s say, the brain surgeon offers me an operation to remove the cyst but the risks are too great for me to accept, or I’m unwilling to accept what it would take to recover from brain surgery? Because of course that is still my choice to make if the offer is made. My gray matter, my choice. What if I came to the belief that everything is just as it should be and nothing needs to be changed? What if?

These are the thoughts that come to me…that I will indeed be faced with choices...some type of choice to make at some point. And when I realize this, I feel this sense of peace. What if I choose to perceive it differently, believe differently? Can I say definitively whether it is a blessing or a curse? Something I am destined to experience, or something I let destroy me? And then the euphoria comes and I’m peaceful in that moment. No fear. No misery. Nothing to do. Nothing to change. Only to BE…BE present in this moment. The only moment I have because all previous moments are gone and the future ones have yet to come. Only this moment and I’m totally in it because I have nowhere else to be! And that is peace.