Pineal Cysts: Debilitating Pain

Imagine suffering with daily headaches and not being able to sleep for nearly a decade. Not knowing what was wrong -- only to finally find out the answer was in your head all along.

The debilitating condition that can plague people for years and the doctor that's helping give them their lives back.

Until recently, a good night's rest was only a dream for Kim Frasca.

"I was still breathing, but I felt dead," Kim Frasca told Ivanhoe.

Her inability to sleep and constant headaches came on suddenly nine years ago.

"I was like a wreck," Frasca said, "I was a physical and mental wreck."

Kim says over the years she tried everything and saw doctor after doctor, but no one could give her an answer.

By the end, I think you know I was contemplating suicide," Frasca told Ivanhoe.

An MRI finally revealed a tiny cyst deep in her brain on her pineal gland -- a structure that aids in our sleep cycle. When neither her neurologist nor her endocrinologist knew what to do, she found doctor dong Kim on her own.

"For those patients that are symptomatic, it can be debilitating and life altering," Dong H. Kim, M.D. director of Memorial Hermann and professor of neurosurgery at UT Health Medical School, told Ivanhoe.

Dr. Kim says patients often suffer for years, because even if a doctor finds a pineal cyst, they don't believe it causes symptoms and won't perform the delicate surgery to remove it.

"I know different because I have removed over 100 of these cysts and so many of my patients, you know the vast majority have had such complete symptom relief," said Dr. Kim.

"Dr. Kim saved my life," said Frasca.

Four months post-surgery, Kim and dog Athena can finally relax.

Doctor Kim says currently there is no test to tell patients if the symptoms they experience are caused by a pineal cyst.

Symptoms to look out for include chronic headaches, changes in vision, pain looking upwards, memory problems and trouble sleeping.

WHAT IS A CYST: A cyst typically occurs in the body's tissue within its own cyst membrane, usually filled with a liquid, semi-solid or gaseous material. There is no one cause for a cyst to occur; causes can range from genetics, all the way to infections. Cysts related to infections can be preventable, however most cysts are not. While the majority of cysts are asymptomatic, they can still produce symptoms to the organs in which they are located. Cysts can occur anywhere in the body and to anyone, at any age. Cysts in the body are usually discovered through CT, CAT and MRI scans.

(Source: http://www.medicinenet.com/cyst/article.htm, http://www.emedicinehealth.com/cyst/page2_em.htm)

CYST TREATMENT: If a cyst does not cause an individual pain, compress or obstruct any vital organs, treatment may not be needed. Most cysts are benign, however, if malignant cells are found as a result of a biopsy, or if a cyst is very large, surgery may be required to remove the cyst. Some can simply be drained using a needle and syringe if, for example, the cyst is just under the skin. When there is an underlying medical condition causing a cyst, then treatment will likely be directed to that particular condition.

(Source: http://www.medicinenet.com/cyst/page3.htm#how_do_physicians_diagnose_a_cyst, http://www.emedicinehealth.com/cyst/page6_em.htm#cyst_treatment,   

PINEAL CYSTS: Although the majority of cysts are asymptomatic, when they do cause symptoms, a patient should seek treatment. It is important to have a medical professional determine whether you have a pineal cyst or a cystic tumor, especially if the cyst is large or has signs of atypical features. Pineal cysts occur three times more in women than they do men, typically within the age range of twenty to thirty years old. A craniotomy would be performed as a standard treatment to remove a pineal cyst; however, less invasive procedures have been used such as: stereotactic aspiration or endoscopic treatments.

(Source: http://radiopaedia.org/articles/pineal-cyst, http://rarediseases.info.nih.gov/gard/10723/pineal-cyst/resources/1)

FOR MORE INFORMATION ON THIS REPORT, PLEASE CONTACT:

Kathryn Klein

Manager, Media Relations

Memorial Hermann-Texas Medical Center

Children's Memorial Hermann Hospital

713-704-5577

kathryn.klein@memorialhermann.org

If this story or any other Ivanhoe story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Marjorie Bekaert Thomas at mthomas@ivanhoe.com

Dong H. Kim, M.D., director of the Memorial Hermann Mischer Neuroscience Institute at the Texas Medical Center and professor of neurosurgery at UT Health Medical School, talks about how he can help those with pineal cysts.


Can you talk a little bit about the scope of the problem with pineal cyst? And how many folks are affected by this?

Dr. Kim: So a small pineal cyst is fairly common but a symptomatic pineal cyst is probably rare. The exact incidence of symptomatic pineal cysts is not known but may affect less than point five percent of the population, so a very small number. It's probably at any given time a few tens of thousands of Americans who are affected. Probably the majority, maybe the vast majority, of patients do not have symptoms from pineal cysts so that means they're incidental findings. Often they are found because you get a scan for another reason like somebody's had a car accident or maybe had a stroke and we'll see a small pineal cyst. We know they don't cause symptoms because, if you ask the patients about it, they haven't had headaches or other problems before this other issue came up. Most incidentally noted pineal cysts are quite small, generally less than five millimeters in size.

So for those that are symptomatic they can be pretty dramatic symptoms.

Dr. Kim: For those patients who are symptomatic, it can be debilitating and life altering. Many patients are unable to work or go to school. It often affects adolescents. There's a set of symptoms that are very characteristic that help me decide when it's the pineal cyst that's the problem.

Can you talk about those?

Dr. Kim: The most common symptom is chronic headaches. Almost everybody has pressure or pain or people use different words. It's differentiated from migraines or other common headaches because it doesn't come and go. All migraine sufferers have it some days and then it goes away. This headache can evolve into being there every day for months at a time. On top of that, there's a host of other symptoms that are very characteristic. One is changes in vision. Patients will often say that things are a little blurry or they get subtle double vision and they have to focus really hard to read. They get pain looking upwards. Sometimes patients have a memory problem, that's a common thing that I hear, they're just having trouble remembering. Sometimes patients experience jerky, funny movements of the arms and legs. And so there's a list of symptoms that are very common.

Can you talk about the pineal gland and its role in the functioning of the body?

Dr. Kim: The pineal gland is right in the center of our brain. It was made famous by Rene Decartes who thought that was the seat of the soul. You may have heard that. It actually has one function and that is to produce melatonin which is involved in our sleep/wake cycle.

I know esoterically it's considered the third eye.

Dr. Kim: People still think that?

Yeah.

Dr. Kim: So neuroatomically the pineal gland is probably not that important. And I think if somebody did an experiment where the pineal gland was just removed I doubt the patients would notice very much. Many of my patients do say they have trouble with sleeping but I think a lot of that is due to the headache and the discomfort and other symptoms, because when the pineal cyst is removed the sleep returns to normal.

Is that the last gland of the endocrine system to really be understood and we still don't fully understand what it does?

Dr. Kim: That's probably true. We've known much more about the thyroid and pituitary gland for a long time.

As you had mentioned earlier this is something that could be symptomatic or asymptomatic but the thing is, people usually don't come to you until years and years have passed and they have been living with the symptoms for so long and been debilitated for so long.

Dr. Kim: That's true and I do think there's a general feeling among many physicians that these cysts never cause symptoms, and as a result patients are told it's something else. I'm hoping now with the new social media and more information available that patients will come to me sooner. It's sad to have somebody suffer for six or seven years which is very common.

I know in Kim's case it was nine years.

Dr. Kim: I think maybe the longest I've heard it among my patients is fifteen years.

So they were just living day to day with these----

Dr. Kim: For many years the symptoms aren't as severe. So it starts out where they get a headache once in a while and so in retrospect it's a long time. But it's the nature of this to become more and more progressive and usually by the time I see them they are often unable to work or unable to go to school. Or a very common thing is they end up getting homeschooled by the parents because it's just so difficult to be at school all day when suffering from chronic headaches and other symptoms.

And this is typically something you see in younger people?

Dr. Kim: Yes, for adolescents and young adults it's very common. I've not had patients in their sixties or seventies, for example.

You have or have not?

Dr. Kim: I have not.

Can you talk about where this is located in the brain, and why it's so difficult to get to and why you are one of only a handful of doctors who actually perform this procedure?

Dr. Kim: Yeah, I don't think that's true. That came from a patient interview that there are only five people in the country who do it and I don't think that's true. It's a region that many neurosurgeons know how to get to; I think it's probably fair to say that a lot of surgeons won't remove these because they just don't believe it ever causes symptoms. I've had a large experience seeing patients with pineal cysts, and I have removed over a hundred of these cysts, and so many of my patients, the vast majority, have had such complete symptom relief so we know. Unfortunately there's no test you can do beforehand that says, oh this is a cause of the headaches you're having. Of course lots of people have headache syndromes. So the key is correlating which patient with the finding in the imaging is likely to benefit from surgery. In the middle of our brain are the fibers that connect the two hemispheres. This is called the corpus callosum and it joins the right hemisphere with the left. Right below the back end of it are very large veins called the vein of Galen that supplies the deep part of our brain. Right below that is where the normal pineal gland sits. It arises from the back of a very critical structure called the brain stem. The brain stem transmits a lot of our information to our bodies and back from our bodies and it becomes the spinal cord. Just below the area of the pineal cyst is a part of the brain stem that is involved in vision and coordinating vision especially. That's why, as the cyst enlarges, patients will often have subtle visual problems. It is reachable without having to go through any normal brain tissue, but it is as far from the surface of the brain as you can get before getting closer to the other side. So it's right in the center.

So is this something you would be able to go in through the nose to get it?

Dr. Kim: No. It is not. There are some surgeries I do that way but that's more in the front part and this is not one of those.

While you're saying there are doctors that know how to perform the surgery would it be fair to say that you are one of the only in the country that actually performs the surgeries because you do believe that this has an impact?

Dr. Kim: I would say there are many good neurosurgeons that would be able to do this surgery. I don't know how many other surgeons are doing them regularly because if they do, then those patients get treated and they don't come to my attention. What we do know is that there are a large number of patients who have been suffering and their local doctors are telling them it's not related to the pineal cyst. But when I meet them and examine them I feel like it is.

How big do these cysts usually grow? Before they have an impact?

Dr. Kim: Well that's a good question. So the cyst can be anywhere from two or three to four millimeters in size. The largest one I've seen was twenty five millimeters in size. Like many things it's variable at what size it will cause symptoms for the patients. The smallest cyst I've seen cause excruciating headaches in a young woman from California was only five millimeters. I mean so small that most people would look at it and say there's no way this could be causing her symptoms. Yet I removed it and her symptoms went away completely. There are some patients with eighteen millimeter cysts who are completely asymptomatic. So some of that is just individual response. It doesn't mean that some of us are wimps or more pain sensitive but there are clearly different responses to this cyst in our brains that are just variable among people. But generally, the larger the cyst, the more likely it is to be symptomatic. In my experience, the smallest cyst that can cause symptoms is five millimeters.

Do we know what causes these cysts?

Dr. Kim: No, just like any cyst, it may be from a blockage of the normal drainage of fluid. There's nothing specific. You can get a cyst in your arm. You can get other cysts in the brain. It's just a lining filled with fluid that grows and so it's just kind of bad luck. There's nothing a patient could do to help cause this that we know of, or make it go away aside from surgery.

I read about fluoride as an example that they say in the pineal gland it gets calcified by the fluoride even more so than teeth. So I was just curious if you thought that has any impact?

Dr. Kim:  I don't know of any evidence that fluoride or anything else can promote the formation of pineal cysts.

Have you heard of that before?

Dr. Kim: Fluoride can potentially calcify different things but calcification is something that happens as we grow older anyway and it doesn't always signify pathology.

In the sort of nontraditional health they look at some of those things like the fluoridated water and that kind of thing and there's some evidence that it may help calcified that region, so just wondering from your standpoint what you thought about.

Dr. Kim: Yeah I don't know about it that well but certainly I drink fluoridated water all the time because it's good for our teeth. And as far as I know, since we fluoridated water — epidemiologists would know if there was a change in incidence in certain kinds of diseases or processes — it's been completely safe and certainly very beneficial overall for the health of our populations.

So if a patient comes in and they have the pineal cyst removed what is the typical recovery like for them?

Dr. Kim: So it's typically two days in the hospital. The patients wake up right after surgery and if they have any issues, it's a little worsening of their vision or blurriness which is almost always temporary. And then for patients who come from out-of-state, they either stay here about eight days or a little over two weeks; it depends on the patient's preference. I'm comfortable with patients going back after about a week but then they have to get their stitches out locally and they have to find a doctor to just follow-up some more. Most of my patients end up staying here for a little over two weeks, get their stitches removed, and then go home. Almost everybody is able to go back to work or resume most of their normal activities by four weeks.

What about symptoms, at what point to they begin to alleviate?

Dr. Kim: You know that's an interesting question. Many patients will say the day after surgery that the back of their head hurts because that's where we do the surgery and they have a new headache but that their old pressure headache is gone. Many patients will notice that their memory starts to sharpen up over the first week or two and I don't understand why memory seems to be involved in this. And usually by the time I see them one week after surgery, the patients who are going to get better already feel much better, even with the pain of surgery. There are a few patients who will come and say they still have the same headache from before and those patients may not get better.

When I spoke with Kim; she was the one that was an insomniac for nearly a decade and it's been four months since surgery and she is slowly recovering but she's actually starting to get some sleep now. You know she's not back to her full self yet. But she said it's almost like she was told it's a matter of her having to retrain the brain she was so used to being awake all the time. Can you talk about that a little bit?

Dr. Kim: We don't understand sleep all that well and exactly what happens. A question I get often from my patients is: after the surgery, am I going to have trouble sleeping or continue to have trouble sleeping? And I just know from experience that sleep gets much better. I think a real problem with the sleeping has been the pain and discomfort keeping people awake. Kim was an extreme case where the insomnia bothered her more than most people. And it's possible that just after fifteen years of not sleeping right, even if you didn't have a pineal cyst, if one of us was kept awake all the time for a long time, it would take us some time to regain a normal sleep cycle. But my patients all go back to sleeping much better and normally. So they might worry about what's happened to their melatonin, or should they take melatonin — those are questions I get and I just advise them not to and almost everybody does fine.

Just let the body get back into its own rhythm so it starts producing its own melatonin?

Dr. Kim: Yes, you don't want to get dependent on something if you don't have to.

How many years have you been doing this?

Dr. Kim: Probably about three.

Have there been any advances in the way you do that, that maybe we could tie into this with medical breakthrough series?

Dr. Kim: That's a good question. I think the interesting things for me are that, like you were asking before, I would definitely not say I'm the only one who can do it but probably right now I perform these surgeries as often as anyone in the world. And what's interesting for me is it's kind of the personal journey a doctor takes too, as you start treating more and more of a certain type of patient. Because you get to know more, you learn more about it, and things do definitely improve. I started doing this surgery just because I had so many patients who I saw with intractable headaches and no other cause. And then, once I realized how much it could help them, I wasn't out there advertising, but they talk to each other and the patients kind of found me. I would say that my technique has evolved on how to do these surgeries. When we started they were taking much longer. We were also doing them in a position called a sitting position which has higher risk. Now, I remove these in the prone position and it takes two to three hours. It's a lot quicker and safer. The results were always good but the technique has evolved for me and the process is better. Probably the main thing that I've learned is that I've now had such experience with a number of these patients that I really can tell who is likely to benefit much better than I did even say a year or two ago. Currently, I perform one to two of these surgeries every week.

Maybe you could talk a little bit about the risk of surgery just for people that might be considering this or they just found out that they do have a pineal cyst.

Dr. Kim: Fortunately, knock on wood, I've never had anybody die from this surgery or have a stroke or have some big complication. The thing that I would worry about the most is some sort of anesthesia problem or a heart attack during the anesthetic, which is not prevalent for these patients as they are quite young. For my last one hundred surgeries, one patient developed a wound infection and needed to go back to surgery and have drainage but did fine. Two patients developed a problem called hydrocephalus and needed a shunt. There have been a few other complications like that, not minor, but the patients ended up doing fine. A handful have not had significant improvement in their pre-operative symptoms, but I can only remember three or four such patients.

This information is intended for additional research purposes only. It is not to be used as a prescription or advice from Ivanhoe Broadcast News, Inc. or any medical professional interviewed. Ivanhoe Broadcast News, Inc. assumes no responsibility for the depth or accuracy of physician statements. Procedures or medicines apply to different people and medical factors; always consult your physician on medical matters.

Copyright 2014 by Ivanhoe Newswire - All rights reserved.