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!
