August 4, 2014
Hello, I am new to the site and wanting some advice. I have been seeing a neurologist for the past two years for chronic migraines and had an MRI when I first started seeing him. I was informed two years ago that my MRI was normal. I took topamax for almost two years with little to no improvement and have been on propranolol for the past month with little difference. When I followed up last week, the neurologist informed me that my MRI from two years ago showed a 5mm pineal cyst. Nobody has ever told me about this!! I am having a repeat MRI this week to see if there are any changes. I am furious that he did not tell me about this cyst two years ago and also scared that it has grown. I have no other neurological symptoms other than daily headaches (thankfully) I never had chronic headaches until I had a child almost five years ago. Is it possible that this cyst is the cause of my headaches? My mind is going in a million different directions as to what the treatment options for the cyst will be. Has anyone else had a similar experience and what was the treatment for the cyst? Thank you in advance for your input.
Katie M. Golden
August 12, 2014
In most cases pineal cysts do not cause Migraines. This article from the Mayo clinic is helpful in understanding this condition, but it states that these types of cysts rarely cause Migraines and are often left untreated. Having MRIs every few years to keep an eye on it is recommended, so hopefully there will be no change in the next scan that you do.
It's scary when a doctor tells you you have a growth in your brain, especially if it wasn't mentioned 2 years ago. But the likelihood that it will turn into something bigger is minimal. Just keep getting it checked!
February 25, 2015
I feel like I would do well to chime in here for any others who see this in the future.
I actually was perfectly healthy till march 14th of 2014. After several stroke like attacks or episodes and seeing many Drs I was just only recently diagnosed with Hemiplegic Migraine. However on Arpil 1st 2014 I had a severe attack which actually prompted them to do an MRI. It was fine except for one small thing. I had a pineal Cyst 11mm or 1.1 They said it was fine however and I quote "It could possibly be swelling or puting pressure on some part of your brain causing your symptoms." However he was an ER dr. My Neurosurgeon said they don't swell and are not near anything in the brain to cause any symptoms.
Given my symptoms and the fact that it was the only finding,they scheduled me with a neurosurgeon to have a look at it. At the appointment he told me that it may be a pineal cyst but could also be a pineal Tumor and there is no way to know without a biopsy. Now because of where it sits in the brain there is only a hand full of surgeons trained to do this surgery and it is to qoute a Dr" Like pulling a pea through a straw." The main surgeon who made the Keyhole technique for this operation was on the show the Drs. Most noteably.
My point here is this. After my diagnosis with this cyst/tumor I did months of research being unable to work and dropped from school I had to know just what was going on. I personally, as well as my family, thought that if no one could figure out what was wrong with my stroke attacks and the only thing that ever turned up was this cyst/Tumor, then it must be the cause. Now having said that I will point out. The Majority of people who have a pineal cyst are Asymptomatic(No Symptoms) However..There are those small percentage who do have symptoms and in my many forums posts and talks with people who have them and have had family who did, Said that they themselves had many severe headaches or migraines. I had two people tell me that they had a family member who was experiencing stroke symptoms and had theirs removed by a skilled surgeon only to have NO MORE HEADACHES OR STROKE EPISODES.
Since I currently suffer from both of these conditions. Ive had my fair share of research and personal experiences with both. I will tell you that I post on this topic as of today because I do believe that Pineal cysts may actually have some definite correlation to Migraine specifically Hemiplegic in my case, as well as Headache in people with the cyst. The most common symptom in people who do show symptoms however seems to be headache. Though Ive joined many groups of people who have pineal cysts that are symptomatic and they experience severe pain of various type as well as other symptoms which may or maynot be related to this. Most people who I see post these to others who complain tell them they need to see a shrink and that Pineal Cysts DO NOT CAUSE SYMPTOMS AT ALL. This just means that they have never even googled it. A simple google of pineal cyst gives as top result on Wiki.
A pineal gland cyst is a usually benign cyst in the pineal gland, a small endocrine system gland in the brain. Historically, these fluid-filled bodies appeared on 1-4% of magnetic resonance imaging (MRI) brain scans, but were more frequent at death, seen in 21-41% of autopsies. But a 2007 study by Pua et al. found a frequency of 23% in brain scans (with a mean largest inner cross-sectional diameter of 4.3 mm), with an insignificantly higher frequency for women over men.
These smaller cysts (less than 5.0 mm) are usually asymptomatic, but for larger cysts (greater than 5.0 mm), possible symptoms could include headache, unexpected seizures, visual disturbances, muscle fasciculations, light sensitivity, circadian rhythm dysfunction, or hydrocephalus if the cyst impinged on the superior colliculi or caused obstruction of the cerebral aqueduct. In some cases this is normal and will not affect the human body. In most cases, it will need to be removed before more, life-threatening situations occur.
Sadly Drs dont admit to there being more people with symptoms and they usually opt for the if its rare then it "Doesnt Happen" Or isnt possible in your case. Trust me I know Ive seen enough of them. In my research I found that Drs have some disagreement on these and that currently little is really known about them,since there is still much to learn about the human brain. Dont take my word for it do your research. I didnt just go to forums, I read medical publishings . I believe the University of Southern California published some on it as well. Dont expect to get any sympathy from most drs on this,and printing out articles is a waste of time to give them. I would like to add as well that mine grew as did many others that have had them 1.1(11mm)to 1.4 (14mm) in less then 6 months...Having said that the only serious danger from these that I have read about of which some Drs will admit is Hydrocephalus which will show on an MRI. And may even require a shunt.
The General Consensus on this is they're an Incidental Finding on most MRIs. They are benign and almost always Asymptomatic. Drs will recommend at most an MRI every 6 months to a year. Of course I believe this is just to give you peace of mind. They understand you have something in your brain and you are scared as most people would be. However there is nothing they can do to correct it.Surgery as I stated is too dangerous and only a select few will remove them. Even if they are growing they will continue to have you do the follow up MRI and to Quote "Wait and See." Its OK to feel upset but its most likely not going to grow and you will more then likely cause more symptoms Psychologically if you dwell on it.
Get your MRIs and keep watch,but I personally would not seek brain surgery unless its an extreme case. Primarily due to the Danger and that its Outrageously expensive.
In closing I am not a Dr. Just a patient who likes to know about the conditions I have.
Best of luck to any one who suffers from either or both. Its not fun, but it could be worse.
Just do your research learn about your condition and try to manage any symptoms the best you can. A positive attitude can go a long way.
April 13, 2016
Eagle6205 - This is really insane because I have the exact same size pineal cyst and when they "discovered" it on my MRI about 8 years ago, they told me it was incidental and it wasn't causing my migraines. Funny thing is...I went to the neurologist after suffering from "regular" migraines for years. I went because my migraines were getting worse with one-sided numbness and tingling, weakness on one side, etc. These symptoms were new to me after having migraines for 20 years. They discovered the pineal cyst at the same time. I have since, in the past year and a half, developed stroke-like episodes, paralysis, one sided on my face, arm and sometimes leg (among all the other HM symptoms) I was diagnosed with hemiplegic migraine about 6 months ago (Finally!) One of the things that triggers my HM is blue light (caused by overcast clouds, or using my phone or worse - a combination of both. I just read on a contact lens site that your pineal gland is stimulated by blue light to help regulate melatonin. It seems awfully coincidental that I have a severe sensitivity to blue light and it has a direct link to your pineal gland. And they found the 11mm cyst on my brain! This is the line I read that gave me a clue to search and then I found your post. "When there is an absence of blue light, our eyes sense it and specialized retinal cells called intrinsically photosensitive retinal ganglion cells (ipRGCs) stimulate the pineal gland to release melatonin, a hormone which lets our bodies know it is time for sleep. When blue light is present, melatonin production is suppressed and our bodies are alert, energized and ready for work and play." - See more at: http://www.visionmonday.com/business/labs/article/10-products-that-block-blue/#sthash.JF9diYPi.dpuf
I hope you are feeling okay. I myself get an attack at least once per week along with my chronic migraine with aura, complicated migraines (my other diagnoses). I am sorry you are dealing with this...it is not a good way to have to live life, but I am encouraged to see someone else dealing with the same thing. Thanks for your post.
January 31, 2017
This is crazy! I've been having this terrible headache with stroke-like like symptoms. Face numbness, blurred vision, black outs, even a droopy eyelid! Today I went to the ER (which is huge... my insurance is terrible and it is going to cost me)... but I went because I was sure I had a seizure. I blacked out while driving!! Thank god I was stopped at a light and nothing happened. Ironically I had a MRI with and without contrast yesterday. The ER doc came in and told me I have this pineal cyst. BUT it's most certainly not the cause of my symptoms. I was diagnosed with migraines and discharged. However my head still hurts!!!!!!! And I have had menstrual migraines since puberty. I see the neurologist tomorrow but I am afraid of sounding like a hypochondriac if I mention it.
Katie M. Golden
January 31, 2017
Mention EVERYTHING to your neurologist. What you mentioned are legitimate migraine symptoms that only happen to a small number of patients.
You may want to read this article that explains a type of migraine called complex migraine.
I hope your appointment goes well and that you get to the bottom of this and find some meds that work for you. Please let us know if you have any questions or to update us! I know this can be a scary time. Best Wishes!
April 15, 2016
I do apologize for the late reply as I received your reply to this topic via e-mail however due to site issues wasn't able to reply to this topic or even get to its page, though I did reply by email I was doubtful you received it due to site issues.
So I copied much of that email here.
I posted a great deal of information in a few rather long posts under the "Diagnosis Types" -Hemiplegic Migraine forum Topic. I posted here over a year ago now here and put I had a 1.1 that went to 14mm Cyst, and of this IM SURE I DID...I had the documentation as well to show 14mm However for some odd reason when I sent my paperwork in to my Dr to be scanned and sent back to me, they didn't return my reports...
My last MRI, they said it was unchanged, yet it had grown.. when I got the numbers after asking the nurse to read the report... -.- Then, this last MRI just last month, I had done they said it was unchanged AGAIN!! yet this time when I got the nurse to read the report and the number was smaller by one point??? Ive been told by my Neurosurgeon and several other Drs. These do not shrink.
So I don't know if the Radiologists are being lazy or if my reports aren't being read accurately. However mentioning this, Its a good idea to ask for the Radiologist report to be sent to you not the Drs MRI report, they will most always put unchanged. You have to call to have this done.
Also any Dr you go to regardless of how good they are, Take pictures of everything you send in, Video and Document wise,also make copies to send them DON'T SEND THE ORIGINALS EVER! I made that mistake and I suddenly went to refer to my report of 14mm or 1.4 as listed and I didn't have it... I called and they told me that they don't generally give them back ,they scan them in and place them in the patients folder.
As for your condition I'm sorry to hear about, I don't wish this on ANYONE. I did indeed have a pineal cyst but my diagnosis has changed and they are now calling it a tumor as it has grown. Cysts, Specifically "Pineal Cysts" do not. I personally don't have any issue
with my cellphones light, but light in stores that are really bright seem to have some affect.
I don't know if you've read through the Hemiplegic Migraine forum topic but if you have you will know a great deal about my battle with Drs appt and how much it has spun my life like a car accident. I would discuss treatment options with your Dr. but I would also make sure that you do indeed have what he is saying you have. MS has the same effects. I had to go through the ringer before I was diagnosed.
I encourage you to read some of my hemiplegic migraine posts. They are long but I give a lot of insight into the condition, the process of elimination I went through and what I do to maintain. My legs have been greatly affected and I limp daily have now for 2 long years. I went from going to school to laying in a bed for months. Only the past few months have I begun to try to be more mobile and social.
You cant let it beat you or it will. Stay focused and try to not to think about the condition just accept and find something you enjoy to keep you occupied. 😉