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.
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!
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.
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.
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.
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!
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. 😉
I went to the ER after having stop in your tracks migraines. I have had them in the past, but these are different. When I was at work and had to bend over the pressure would be instant and the headache would worsen. I was having to come home and go right to bed to relieve the pain and be out of any stimulation. After about a week, I had enough, I went to the ER. I was given some medications and a cat scan and was given reassurance he didnt think he would find anything from the doctor.
Results came back that I have an 11mm cystic lesion within the pineal glad. I have an MRI scheduled in the next 2 days, with results at the end of the week. I had put the idea in my head that the two are not related, but now I am not so sure…I am usually pretty easy going, but now…I am afraid that is something more. I was packing up my house and I was getting a little light headed and today talking to someone, I saw some “stars”. I am getting really frightened, but can cry, it only stimulates the head and makes the migraine worse. I am tired of popping Tylenol. They gave me OXI which makes me so nauseated. Any words of insights?
This is very interesting. My headaches are minimal but long lived dull sort of like sinus pressure headache in back of head center where your mellon connects to spine. I think I have everyone beat here I have 22mm cyst on my big bad Pineal Gland. MRI revealed water filed. I had my first episode in Nov 2015 I was 51 at the time . We thought I was having a heart attack or stroke severe fatigue in left arm creeping burning sensation across arm and arm pit up the back into scalp scared the bajesus out of me and my wife. It also came with a visual impact where I had a blind spot pattern in my vision it lasted like 20-40 mins then would migrate across vision path and eventually disappear. Minor headache not what I would call a migraine. Hit the local med center who wanted to call me a ambulance cause thought it was stroke. I called BS! and said my wife will take me to local hospital ER don’t need a 800 dollar taxi ride…….got Cat scan found mass etc etc 22 millimeter kidded with the Dr and said “Maybe its a tumor” had em all laughin he replied in his best Arnold Schwartzegneger “It’s Not a tumor” I have taken the attitude that this is what it is and what the heck am I going to do about it anyway live laugh love best advise I can give. So to date I have seen Neurologist Ophthalmologist and OD family Dr . When my Ophtho said it is not your eyes its a “Migrainal Apparition” neuro based issue go see a Neuro surgeon get his input . So this is where I am today not sure I need to do anything I have had a few episodes recently one everyday for a week a week back, with only one episode having the burning creeping fatigue up back of head. I will post another interesting article I found in a periodical called “Brains” that gave a wealth of info as to this visual condition and its causes and yes Pineal gland is mentioned so is elevated Potassium levels so is lowered oxygen levels IE if your a smoker. Really I have been my Best Dr as I have put together what all have said to me on this and I am not as alarmed with this condition as of yet. Now I know what to ask the egg heads when I see them. Also worth a mention I have had sleep issue for past 5 or so years and we all know the Pineal gland regulate Serotonin and Melatonin I would wake at 3 -4 am and not be able to go back to sleep minor impact as I hit sack at 9 -9-30 but would love a nice 8 hour sleep but it does not happen for me. I will post link to the article once I am home on my personal PC
I’ve had headaches and migraines since I was a teen. When I was 19 or 20 I suffered a migraine with stroke-like symptoms that landed me in the ER. I had an MRI, got a diagnosis of “complicated migraines” and was told I had a pineal cyst but it was “normal and nothing to worry about” and sent on my merry way. I’m almost 36 now and have migraines about 2-3 times a week. I recently remembered this “normal thing” and started researching it. I do not know how large the cyst was back then and haven’t had an MRI since but am hoping to get one soon as other symptoms and my migraines are starting to seriously impede my life. In a lot of my research and from much of the things I’ve seen on forums, pineal cysts are often dismissed by doctors and the symptoms are not taken seriously or at least not attributed to the cysts. I recently stumbled onto this: http://neuro.memorialhermann.org/pineal-cysts/
If the link doesn’t work, try searching for Mischer Neuroscience Institute or Memorial Hermann and Dr. Dong Kim.
Please note: I have not seen or met this doctor. I have only been to the website and read the info and patient stories. I am not a part of the UT Health system or anything like that. I read one of the patient’s stories on there and it gave me HOPE because it said she went to 3 different neurosurgeons who were dismissive of her concerns and was referred to this guy by a friend. If this is your only chance of someone taking your pain and concerns seriously, maybe it’s worth a shot. I’ve decided that if my next MRI shows anything at all and the doctor isn’t supportive, I’ll be reaching out to see if there is any hope of him or someone like him, helping me. This is no way for anyone to live. I hope this helps.
Well it’s been a while since I’ve posted. I have a lot more going on it would seem then I ever
Would have thought I did. I went to a few more Dr. I got referred to a rheumatologist a little time
Went by and I got some test results back. I tested positive ANA with high numbers
They followed me for a year and the diagnosis was Lupus systemic erythamatosis. I went back
to my migraine Dr. who offered to order my MRIs for me and he said no as a general rule we do
MRIs every two years to watch the cyst.
I felt sort of like he had lied to me, in fact he did He had told me when I went in for my last MRI no we do it
Every year well the year had approached and he was now telling me Every two years. I reminded him he said one year
And he claimed he said every two years so I told him I wasn’t sure about that and hasn’t been
To a neurosurgeon since they found it but they said Every six months. So I saw a new neurosurgeon
My last neurosurgeon was no longer dealing with Brain surgery and had moved. He referred me to
a very revered neurosurgeon among the best in his field Having trained under Dr. Teo who believes these
Cause symptoms and is one of very very few who actually successfully removes these on s regular
basis. He told me he could do the surgery but reminded me of the dangers and explained to me
that he believed my symptoms were not related to the pineal cyst/ tumor. He did tell me NOT to get
MRIs every six months anymore and said If I wanted Every two years was fine but because it was indeed
A Tumor if I got hydrocephalus and the symptoms of it That he would remove it. However at this time not to
worry about surgery. He told me he removes these All the time and in some cases it makes the symptoms
Worse and in some cases better but at times it didn’t change anything. THIS IS IMPORTANT TO NOTE.
The man did what most won’t do and he was Very straight with me about it. He was one of the
Most down to earth drs ive ever met and he Had just gotten out of a surgery. He plumped
Down in the seat between my mom and I and talked to us like friends, he answered every question
We had and made 100% sure we knew what we Neeeded to know. He told me he didn’t want to see
me back in his office unless it was hydrocephalus but would be happy to see me again if the need arises
That , ladies and gentlemen should tell you something When a man who takes out the impossible levels with
You about removing something he knows more about Than 99% of world and is willing to remove it
Knowing the risks and knowing it may not help.
That should tell you, yes these can be problems But they won’t kill you unless you get hydrocephalus
In which case they have to be big. He told me mine Was on the smaller side of the ones he takes out but he died
remove small ones from those who suffer a very specific Set of symptoms.
I mentioned an article I had come across about a girl Who had suffered my same symptoms that ended up
Wheel chair bound having stroke symptoms droopy eye lid head ache and such that had hers removed and Dr.Teo
Had told the girl she would have been dead by Christmas Because the cyst had grown into the veins of her brain
But he told me don’t buy into published articles On it and that you can’t believe some of that and
not every case is the same. All this provided peace Of mind for me. I hope it does for you all as well.
Is it worth worrying your life away of something that Is causing symptoms that are non fatal in 90% of the cases
Or worth the risk of death during the surgery. Paralysis Or bring a vegetable blind or deaf. What if one of these
Occurred and the surgery didn’t cure it? You must face that when considering surgery. You have to. Symptoms
Are manageable you can live with these. Don’t let Worry ruin the quality of life you have, in many cases it
Alone can manifest your symptoms or worsen them.
When I was at that hospital I saw women with no Hair completely bald from chemo I saw kids
and people with brain cancer I personally know Someone with it and lost family to it. These cysts
Are not likely to be cancer once you get the answer You seek and you know it’s not fatal, live your life
deal with the symptoms the best can and be happy You aren’t one of those people who are bald from chemical
Or dying from inoperable brain cancer or a tumor. Seeing that and hearing him explain made me see
This as what it is. A possibility to be a serious problem, a problem a worry and ultimately what it is. A Tumor that may
Or may not grow larger or require surgery at Some point. Till then I acknowledge it’s there and keep
My legs bother me much much more in pain then The worry of brain cancer. Besides I’m 31 some
Children don’t live to be a teenager. I’m thankful I’ve made it this far. Yeah I’m sick with illness but
That’s life. My legs hurt often I’m able to walk with My cane and my physical therapy gave me some
Strength back in my legs. I take magnesium daily They have recommended me to take tumeric but I’ve yet to.
They wanna start me on plaquenil for lupus but I don’t want to take it since if I miss one it will
make my lupus worse. I still keep my logs. The magnesium helped tremendously with
Both pain in my nerves and the frequency Of my attacks. These attacks can be very
Crippling and disabling I know. As since my First attack which I believe was a stroke
I haven’t walked the same I constantly limp And need my cane to walk and have non stop
Pain in my legs. Find something that works For you.
Don’t give up.i know it’s easy to ive been Tempted to many times. But with the right
Treatments you can still live life. Maybe not How you used to but you can live. I was gonna
Be an Aviation mechanic and was strong Agile and fast. Now I’m slow weak and
disabled from doing most simple tasks it Was a huge change I rarely drive but I still
Can on rare occasions. Whatever it is You can beat it, if you can’t well then like me
Embrace it call it what is and live with it. Doesn’t mean you have to smile or pretend
everything is fine it just means things are different and you’re gonna have to adjust.
Life is short even in illness you are still here. Enjoy what you can of it.
Hope this helps. 🙂
I tried posting this once and the spacing was bad
I fixed it and hit submit and then it didn’t post.
I refreshed re logged and pasted then hit submit
And it’s saying I already posted this -.- I was using my cell now im on my laptop maybe it will fix it.
Due to my cell word wrap capitalized every couple words. I promise Im not retarded. haha
Thank you SO much for your post! The detail of your experience may help someone else.
Wow, what a journey you’ve been on in the past year! You have a great attitude on life.
Thank you Katie, nice to see you’re still modding for the site. Im not on Social Security for this yet. Its been a LONG Battle. Ive been turned down twice and lawyered up now. Im hoping for good results but I have crap luck.
my actual hearing is coming up at the end of the month. :/ Wish me luck. Ive been going to Drs and Drs and more Drs.
Referred and ping ponged around and going to my scheduled visits as well. They have me scheduled
now to see a new Neurologist for a fresh opinion on my legs. Im still walking with a cane but Im not falling near as muchdue to my physical therapy strengthening my legs back up to some degree.
I tell you, it is not easy to get SSI in my state. I have formal diagnosis of Lupus, Psoriatic Arthritis,
Sporadic Hemiplegic Migraine, Pineal Tumor, Hernia & 3 prior sugeries with lifting limitations plus im still facing the possibility of another diagnosis of MS or some other crippling illness pending and I got turned down
Automatically the first time of which I expected cause 70% do the first time. Then I got turned down again.
and had to hire a lawyer to get some help this time for the hiring coming up for the 3rd Decision. They are rough on people here. I know of people who have disability for a lazy eye… Yet Im being turned down. I did get my Handicap Placard in the mail though so that was a win at least I dont have to park clear out in TimBuktu anymore.
You may not recall since its been a while but I had talked to you on the Hemiplegic Migraine thread in the past about
your experience with migraines and remember you saying how you had to drop from school and give up working too.
I hope you are doing well. I tried to keep that last reply short but this site is weird about post spacing.
Good to hear from you too! I haven’t been moderating as much, but when I saw your post I wanted to reach out.
It sounds like you keep fighting and have a great attitude, keep it up!
I’m doing well- it goes through cycles of bad weeks and good weeks, but I feel I have a better treatment plan that helps me to manage it all more effectively.
Keep us updated!!