Meeting the Intruder

Today, for the first time since finding out I had a pineal gland cyst about a month ago, I got to see the MRI pictures of the cyst. It shocks me to know that this exists in the middle of my brain. I am being told it is a benign cyst, which is comforting, but how can something so large not cause symptoms? This is the medical myth. Please allow me to introduce you to my brain intruder:

Side view of brain with pineal cyst, round and lobulated downward, sitting above the brain stem and cerebellum.

Another view showing cyst in the center of the brain.

Apparently, pineal gland cysts are common. You could have one and not know it. MRI's completed for other reasons (concussion or other brain trauma) reveal pineal cysts in 1-4% of the population. In autopsies, it is said that up to 23% of dead bodies are found to have pineal gland cysts. For the reason that they are often found incidentally, the belief exists that they are ALWAYS incidental findings and ALWAYS asymptomatic. Admittedly, you can't ask a dead person if they had symptoms. But, for those with symptomatic pineal gland cysts, the classic symptoms are pressure headaches, nausea and vomiting, blurry and double vision, memory and cognitive complaints, fasiculations (or twitching), and gait disturbances. How the cyst causes these symptoms is because it can put pressure on the areas where cerebrospinal fluid drains in and out of the brain. Once the fluid cannot drain out, hydrocephalus occurs. This is the pressure headache. I have the classic symptoms of hydrocephalus, but my MRI images do not show excess fluid in the brain. Therefore, the surgeon I saw today cannot corroborate my symptoms with the MRI images. He will not consider removing the cyst until he has documented evidence that I have fluid buildup occurring in the brain. Keeping in mind that he has absolutely no explanation for my symptoms. He did tell me that the next time I have a crushing headache like I had on Wednesday, to go to the ER at St. Anthony's, tell them I am his patient and need a CT scan during the crushing headache to see if I am getting a fluid buildup at that time. If the CT scan shows hydrocephalus, then he has something to prove the cyst is symptomatic. This is a very frustrating place to be...not believed. But I'm determined to get answers and I will keep searching until I do. This intruder has to go because I want my brain (and quality of life) back!

How to be your own best medical advocate.

You have to be your own best medical advocate, not just when faced with a health challenge, but also with preventative care! Your body is YOUR BODY and its the only one you get! Thus, you are the expert on your body! You live in it...you know it better than anyone! So how do you become your own best medical advocate? You change from being a passive patient to being an active patient, and here's how:

1) Educate yourself as much as you can about your particular health concern. The world wide web is there for you with a wealth of information. Be discerning, however, because there are a lot of people talking a lot about stuff they know nothing about. Once you've read everything you can, stand up for what you learn. Sometimes you come to know more about a particular condition than the doctor who is seeing you. For instance, my primary care doctor knows nothing about pineal cysts. He takes the word of the neurologist to whom he referred me. However, I now know more about pineal cysts than the neurologist does. I've done my homework...extensively! When I shared my knowledge with my primary care, I helped educate him. There's nothing wrong with that. He can't possibly know everything about everything. But the next time one of his patients has a pineal cyst, he will know more than he did because of me!

2) You have to be sure that the advice you are being given is good advice and that it is the right advice for you. If it doesn't feel right, it probably isn't right for you. Just because a doctor advises that you take a certain drug or receive a certain treatment, or that what you have means nothing...or something...it doesn't mean that you have to do what that doctor tells you to do. You don't HAVE to do anything, except...

 

3) You have to question...everything! News Flash: Doctors don't know everything! They only know what they know. They don't know what they don't know and they can't possibly know everything. And everything they know is not always right or true. That is why...

4) You have to seek multiple opinions. It is your duty as a patient dealing with a serious illness to get multiple opinions before settling on a treatment plan. There are almost always other treatment options available, but if you don't ask, you won't be told. The doctor you see may not know of other options or may not offer any other options. It doesn't mean there aren't any other options. Seek and ye shall find! At least if you seek and don't find, you'll know that you sought. 

5) Consider alternative options. Western medicine is not the only option when facing a health challenge. There is Eastern medicine and there are complementary practitioners who can offer help instead of, or in addition to Western medicine. Be open to other practitioners. For instance, I am getting acupuncture to help with the symptoms from my cyst. It won't cure the cyst, but it is helping to offer some relief so I can function as best as I can while I search for a cure. 

I'm sure there are more suggestions, but this is all that comes to me at this time in such clarity. Is all of this exhausting? You bet it is. And it is really hard to do when you feel crappy. So sometimes I have to take a day off just to not deal with it. It helps to rest and take a break. It can, and does, become all consuming when you are working for your health!

Disclaimer: It may sound as if I have no respect for doctors and am full of mistrust. Nothing could be farther from the truth. Doctors have saved my life and have given quality of life back to me. I would be living my life in a wheelchair if it were not for doctors. But...I've also seen some not so good doctors who have very limited scope in what they know and what they do and what they advise. In order to broaden the scope, we must seek the knowledge and opinions of more than one doctor.

Just today I received a call from my primary care doctor's office saying my insurance company had approved a referral to a neurosurgeon. As soon as I had the name of the neurosurgeon, I Googled him. Of course I did! I'm my own best medical advocate and I want to know who the doctor is and what he does and how well others think he does it. And when I went to his website, I discovered that he is a "spine" neurosurgeon, not a "brain" neurosurgeon. Seeing him would be a waste of his time and mine (and my money and insurance). It's an inappropriate referral. So, I called my primary care doctor's office back and told them this information. I don't know where the error occurred, but I caught the error because...yep, my own best advocate!

Meanwhile, I have successfully accomplished finding my own specialist...a brain neurosurgeon who offers treatment for symptomatic pineal cysts. He has reviewed my records and offered me a consultation. I have scheduled that consultation in June at the Misher Neuroscience Institute, Memorial Hermann, University of Texas Health Science Center in Houston. I will go where the specialist is located. Fortunately for me, he is an in-network provider with my insurance!

I am still looking for other opinions in Denver, but have yet to locate a specialist. I will keep trying because I need other opinions. In order to make the best decision regarding treatment (or no treatment, as the case may be), I need the information. 

We have rights! We have a right to be informed (but we probably have to inform ourselves to be fully informed), we have a right to choose (but we have to know what our choices are), and we have a right to be heard (but we might have to be the one demanding better communication). I have become an active patient and I participate in my own health care. I will get better outcomes because of it! This much I know! 

Brain Tumor Symptoms

May is Brain Tumor Awareness Month and The National Brain Tumor Society sent about 200 advocates to Washington this week to lobby Congress on behalf of the brain tumor community.  There is not enough education. There are not enough resources. Patients are not getting the information or care they need to make appropriate decisions about their health. It's not just me. Patients with more severe tumors than my own (malignant) face the same challenges in terms of diagnosis and treatment. The mass in my brain is a benign cyst, but it wreaks the same havoc on the brain that any other mass does simply by taking up space that is not available and causing a build up of cerebrospinal fluid (hydrocephalus) that puts pressure on the brain. 

As a public service message, I include below information about brain tumor symptoms provided by the American Brain Tumor Association. Having most of these symptoms myself, one would think it would be logical that a 17x16x11mm cyst in the center of the brain would the obvious cause. To be told otherwise and to receive virtually no treatment makes me feel like I am in an episode of the Twilight Zone that just won't end! It feels prudent for me to share this information. You never know if it will get to someone who needs to know it!

 

How I came to know about my brain's intruder.

In January of this year I awoke one morning with what felt like a lot of pressure in my head. I called it a headache, but really it didn't hurt so much as it felt like my head was going to explode from the inside out. I was also nauseated. I just wanted to put my head back down and close my eyes. And that's what I did. I slept most of the day and when I got up later that afternoon, I felt better. Pressure seemed to have gone down some. Nausea was better. The next day I felt pretty much normal. Then, about a month later it happened again. I awoke in the morning with pressure in my head. Only this time the pressure felt much greater than it had a month before and the nausea became so severe it resulted in forceful, projectile vomiting. It was quite concerning. I was really sick that day, but it felt like nothing else I had ever experienced so I made an appointment to see my primary care physician. 

From that day forward to this day, the pressure in my head has been almost constant, it sometimes results in sharp pain across the right side of my head, it is often accompanied by nausea, and occasionally comes with forceful projectile vomiting.

But that's not all. Turning back the calendar, I realize these are not the only symptoms I have been having. For the past 1-2 years I have been experiencing intermittent blurry vision. Sometimes both eyes. Sometimes one eye or the other. Sometimes I wake up with extremely blurry vision in the morning and other times it just comes on suddenly during the day. When it happens, it is difficult to clear. It makes driving irritating because even with my driving glasses, everything is blurry. And then eventually that episode clears and then another one comes along whenever it does. Nothing has shown up on eye exams. I thought it had to do with my vision changing and needing a new prescription. In October of last year I had an eye exam and a doctor (she was a new doctor in the practice and had never seen me before) said "I have the answer as to why your eyes are blurry...your eyes have gotten better and now your glasses are too strong!" I was excited I finally had an answer, or so I thought. I got new glasses, but the intermittent blurry vision has continued to this day. I didn't know why, until now.

But that's not all. Also for the past 1-2 years I have been having more and more problems with memory and cognitive issues. I can't remember names. I've started losing (misplacing) stuff and I have never, ever had that problem. I can't find words. I can't remember numbers or do simple math in my head. I often can't complete a thought because it feels like it gets lost somewhere in my head...as if parts of my brain are blocked or not functioning. I have very little reading retention or comprehension. If I try to read instructions for putting something together or doing something, I give up because I can't follow through with the steps because I can't remember them. I read recipes over and over because I can't remember which items or how much of an item the recipe calls for. And I could go on and on with examples. Needless to say, it was truly concerning to me as the cognitive issues got worse and worse over time. I withdrew from nutrition school last summer because of our house flood and the need for me to devote time to the restoration and gain employment to help with the expenses. But when that was done I had to admit to myself that much of what I had learned had been erased from my memory and it had become so severe that I could not learn new information. And that is a frightening, frightening place to be and not know why. I began to imagine I was dealing with early dementia or a brain tumor because nothing else made sense. I was too scared to go to the doctor with these complaints and so I didn't. And let me tell you how isolated you become in your life when you have cognitive deficits. Even a social conversation becomes a challenge because sometimes I cannot stay focused on what someone else is saying and sometimes I can't remember previous conversations or details. So I began being a hermit and I knew it was happening, but I didn't know what else to do until the pressure headaches and nausea forced me to go to the doctor. So on the one hand, the pressure in the head and the nausea were of great concern, but they were also of some weird relief because they were symptoms I could address with a doctor while also saying, "and oh, by the way, I also have been having these memory and cognitive issues."

And so began the journey to a diagnosis and treatment. I first saw my primary care physician who thought it could be tension headaches or early signs of a shingles outbreak, but given my history of spinal stenosis, perhaps also related to that. So he gave me a muscle relaxant for the tension headaches (which you can imagine didn't help because they are not tension headaches) and referred me for MRIs of my brain and cervical spine. My insurance company denied the requests. He then referred me to a neurologist for an evaluation. She ordered a plethora of lab work (she said to rule out autoimmune conditions, inflammatory conditions, and nutrient deficiencies, all of which could elicit these symptoms). She also ordered a pulse oximetry study to see if I was oxygenating well at night (she said to rule out sleep apnea because low oxygen levels at night can result in waking up with headaches). She also ordered an MRI of the brain (she said to rule out brain tumor or other brain abnormalities that would explain my symptoms). I received a call from her office that the MRI had revealed a cyst on a gland in my brain and the radiologist recommended that I return for an MRI with contrast to further evaluate the mass. She also said the lab work had come back completely normal, but the pulse oximetry test was abnormal and I needed to schedule a full sleep study to assess me for sleep apnea. I returned for the 2nd MRI and scheduled a follow up in her office with her Physician's Assistant the next day rather than waiting another six weeks to be able to see the doctor herself. The PA informed me that the 2nd MRI had revealed a 17mm x 16mm x 11mm pineal gland cyst, but the radiologist thought it was benign and recommended I return for another MRI in a year to determine whether or not it was growing in size. A year? She went on to explain that the pineal gland cyst was an incidental finding and was not causing my symptoms. So I asked the obvious question..."then what do you think is causing my symptoms?" And she responded "We don't know. But we are going to treat you for migraines. We would like to start you on blood pressure medication." Why? I don't have high blood pressure. I'm not going to take blood pressure medication. And these are not migraine headaches. In fact, they don't even hurt like a headache at all. I just feel like there is enough pressure in my head that it will explode. I feel like my eyes are bulging out. And the constant nausea is making my life miserable. And what about the memory and cognitive complaints? Those aren't caused my migraine headaches. She responded "We consider you a 'work in progress' because we don't know. It could be that you have sleep apnea and it is causing all of your symptoms." No, I don't think it could be causing all of this. I will get the sleep study just to follow through, but I think if I have sleep apnea then THAT is an incidental finding. I refused the high blood pressure medication. She offered me some samples of high dose anti-inflammatory medication to "treat the migraines," but of course it does nothing to help the pressure in my head. She gave me some anti-nausea medication which is the only thing I take that helps keep me from projectile vomiting when the nausea comes on. I was told to come back in six weeks after my sleep study. Meanwhile, I am on my own. I consulted with a local acupuncturist and I am grateful that acupuncture has reduced the amount of pressure I feel and has significantly reduced the accompanying nausea. But it is short lived and temporary. I can't keep this up forever. Just happy to have some relief for now.

And so began my journey to becoming my own best medical advocate and putting my experience with medical research to work for me! I began to research, and research, and research pineal gland cysts. Now I am becoming an expert in these intruders and I am determined to get rid of the one that has taken up residence in my brain so I can return to health and life and feeling good again. In my search I have also discovered that I am not alone. There are many, many people who are told their pineal gland cysts are incidental findings and not responsible for their symptoms...symptoms that look a lot like my symptoms, or even worse. Seizures can occur for some people. Absolutely frightening. But I will explain more about my research findings in another post.

Meanwhile, I went back and requested a copy of an old MRI of my brain that was done in 2009 after I had a TIA following lumbar fusion and guess what I found? I had an 11mm pineal gland cyst on that MRI and no one ever told me. Why? Because there is a medical myth that these cysts are incidental findings and don't cause symptoms. But my cyst has gotten larger since 2009, a fact I find to be very important.

By the way, I have yet to see my own pineal gland cyst on the MRI. The PA in the neurologist's pulled up the images on the viewer but closed them and admitted "I don't know what I'm looking at. They don't teach PA's how to read MRIs!" So I don't know what my own pineal gland cyst looks like but here is a garden variety pineal gland cyst that belongs to someone else:

Garden variety pineal gland cyst (not my own)

Then I went to see my eye doctor (not the new doctor, but the one I have been seeing for years who I know to be a specialist with neurological eye disorders) and I explained about the pineal gland cyst, pressure headaches, nausea and blurry vision. After a number of tests and exams in his office, he found that the optic nerves in both of my eyes are swollen...an indication of pressure in the brain, a valid explanation for my intermittent blurry vision and, according to him, an explanation for the pressure headaches and nausea. Not to mention, he is familiar with pineal gland cysts and knows that they CAN be symptomatic. I began to cry. Finally, someone was validating what I knew to be true. The pineal gland cyst is the cause of my symptoms. Not some incidental finding, but the cause of my symptoms and my eye doctor had found physical evidence to support this. I returned to my primary care physician and I explained everything as I have above. And he said, "you need to see a neurosurgeon." Yes, indeed I do and I need for you to be my advocate. He said he would. Finally I feel I am getting somewhere! But I feel my fight has only just begun. My research has shown that most doctors, even neurosurgeons, either 1) don't believe pineal gland cysts cause symptoms or 2) offer no treatment for them. The only treatment is removal of the cysts, but most surgeons won't do it. I would imagine insurance companies like to side on the side of these doctors. We'll see. My primary care has requested approval from my insurance company to refer me to a neurosurgeon at the University of Colorado Hospital (my request). I said, "what if they deny it? What do we do then?" He responded, "Then we appeal." And so...here we go. This warrior is already weary and I'm not even to the battle field yet! However, I am very determined so I do have that going for me! Stay tuned!

Let's begin with some good advice!

The first order of business for any warrior before a fight is to be brave, even if she is scared! My journey, my fight begins here!