Pineal Cyst

I have a 4 year old daughter who was dignoised in March 2007 with a 7mm pineal cyst.  We go to the Neurologist every 6 weeks.  We keep a headache log.  The Neurologist put her on a migraine medicine that has elimanated most all her daily headaches.  Her Neurologist and her eye doctor seem to think the pineal cyst has no connection to her headaches or her partial paralized IV cranial nerve.  It is just werid that everyone that has a pineal cyst has headaches.

[Carol in PA]

It's possible that your daughter's migraines have been triggered by an infection with Borrelia burgdorferi, a spirochete bacteria that causes Lyme Disease.
People with this often have a problem with cysts on various organs and glands.
When the Lyme bacteria infects the cranial nerves, the patient may present with visual symptoms, auditory or balance problems, trigeminal neuralgia, Bell's Palsy, etc.

I have Lyme Disease, and long standing migraines.   An MRI showed a pineal cyst.
So it's possible that the thing that is causing the migraines also cause the pineal cyst.

Wishing you the best,
Carol

[migraine_queen]

I agree with you Heather, I was just diagnosed with this cyst this week.  Or rather, let me rephrase this...It showed up on a ct as early as August, but no one said a word to me about the cyst to me until January 22nd.  (Nice, huh?)  

From all that I've read so far, it seems far too coincedental that all these people with Pineal Cysts all have so many of the same symptoms and some that were blessed enough to have them removed, are doing quite well now.  Something that I find, intriguing and frustrating at the same time, since most doctors so far are saying, "this has nothing to do with....(Insert whatever here)"

Good luck to you and your daughter!!!  I started my migraines as a young child...I know its tough.  

[momofcancerkid]

my daughter was 4 when we found her cyst in the same area of your daughters....she is now almost 10 and it has not grown but her headaches are getting closer together and more severe...she is also a cancer surivor which is how we first discovered the cyst....through a mri that i demanded ( thinking the cyst was the problem) they found out her adenoids (adenoids) and membranes were infected and needed to come out....after talking to 2 ENT's whom i trust i found out that the infection can be causeing the headaches along with concentration issues..therefor e she is having surgery soon to correct it...you should check with an ENT in your area to rule this same problem out..good luck and god bless

[Mel_2006]

How much have you learned about pineal cyst? I have had headaches since i was 5 my doctor diagnosed them as migraines when i was 6 and had my first migraine shot when i was 8. I had headaches everyday all the doctors did was give my parents pain medication to give me and send us on our way. I am now almost 32 and still have the headaches everyday. In 2003 i found a doctor who finally ordered an MRI and an EEG { it took me 22 years of having these constant headaches to find a doctor to try and find out why instead of just giving me pain meds and sending me on my way} anyway the MRI showed a pineal cyst measuring 1.2 x 0.7 cm the EEG was normal. I have regular MRI's now. The neurolgist also told me that the cyst was not what was causing my headaches they tried medication after medication trying to control my headaches but nothing worked for very long. Then my headaches started getting worse and i was blacking out when i would have a real bad headache. I blacked out with headaches when i was younger but not very often and now i blackout atleast once a week. My doctor i see now ordered another MRI 4 months before i was due for my next one and an EEG. The MRI showed that the cyst had grown now measuring 10 x 12 cm and the EEG this time showed i was having brain seizers {which my first EEG did not show}. Most doctors do not believe the pineal cyst cause symptoms and the majority of them don't. But the are a some that do. I have lots of information on pineal cyst and know of alot of good wed sites you can look up to get information if you would like any of it just let me know.
My doctor says that i need to have my removed and has sent me to several neurologist but the neurrologist where i live don't know much about pineal cyst. I live in a very small town. My doctor is now trying to find a neurologist in a larger city to see me and do the surgery to remove my cyst before it grows anymore. I am also a single mom of 4 and have been unable to work for 2 years because of this.
Hope i can help. And i hope your daughter gets to doing better.
I have a 5 year old daughter and a 10 year old son who also have headaches alot and that scares me because of what i gave gone through the past 27 years.

[clarence21]

Hi my name is Clarence, I've been having chronic headachs for seven mounths.  I have been  back and fourth to the ER, because the headaches were so painful that I nearly passed out.  Recently, during the first week of April, 2008,  the symptoms mainfested into shifts of numbness throughout my body, especially my back and arms.  It's terrible because everytime I sit down I'm over come with debilitating weakness. At first, I thought I was having a stroke or aneurysm.  The MRI with contrast, confirmed that I didn't have any of those two. I had something else...

To make a story short, yesterday, the doctor discovered I had a 8mm cyst in the pineal gland.  The pineal gland is responsible for the secretion of  the chemical for sleeping called  "melatonin".  No wonder, I have been having trouble sleeping, and trouble going back to sleep throughout the night.  I too, have been told by doctores that there is no correlation between the cyst and, they sent me away.
I have been looking for a neural surgeon to drain it, before it grows and creates more symptoms, because there is four known deathes, with having pineal cysts.  I need someone  who is experinced with treating this problem.  Do any of you guys know a renowned docter who is?  Becauses I'm scared of having surgery on my brain, because if they screw up, the impact could be permanent. Please e-mail at ***@****. Best wishes to all of you, in your quest for treatment.

[Vanessa Lacuesta]

Hi,

Pineal cysts are usually incidental findings in the scan. They may not require further intervention unless they are large and becomes symptomatic.

"Majority of the times, pineal cysts are asymptomatic. Pineal cysts are clinically important for 2 reasons: (1) They may enlarge over time due to intracystic hemorrhage / cyst fluid, and/or (2) May cause mass effect on adjacent structures. "

Source: http://www.urmc.rochester.edu/smd/Rad/neurocases/Neurocase163.htm

A pineal cyst of 8 mm may need to be monitored. At this point, do you have any acute onset headaches, eye pain, visual deficits?

Pineal cyst apoplexy or bleeding is rare. You may discuss this with your physician so that the right management will be provided for you. I know you are worried about this but at this point I do not think the sleep problems are caused by the pineal cyst.

Do keep us posted with regards to your progress.

[motherteresa]

Help have just been diagnosed with a pineal cyst.  have had a terrible twelve months with strange symptoms including perfusion of blood into my eyes massive headaches and pressure.i also flush when this happens and feel paralysed with pre syncope which lasts for 30-40 mins each time i have an attack, feel like i am going to die one of these times!!!! i am under a neurologist who has ordered another mri to monitor situation but will not be until sept-oct with follow up in nov!!!  have trouble sleeping i.e cannot sleep at all or cannot stay awake at times. post "attack" i am left very weak for days.  have lost my job as a nurse as a direct consequence of this mystery illness, has ruined my life! desperate for latest views as to treatment or would love to hear from anyone with similar symptoms as i feel i am going mad!!! good luck to you all, please em me!!  teresa.

[DrNoopurMD]

Hi,

The exact cause is unknown but very often the presenting feature of pineal cyst is a headache which usually responds to OTC pain killers.

Sometimes it can also be a migraine headache.

[sandy334]

Hi. You are not going mad I too had headaches for about 12 months no sign of attacks but I did fall asleep in very strange places without even knowing. I was diagnosed with a pineal cyst when I was 18 and also with Hydrochepallus (cant spell). I underwent surgery the day the found the cyst as the fluid build up around my brain was so severe they said I shouldnt have been alive. I was told they would monitor the cyst from now on and if it ever got bigger they would discuss treatments. 2 years later I was suffering from the same symptoms as before and I went for another scan. They discovered the cyst had gotten bigger so they suggested draining it. I had this done but it didnt work for very long and I was back twicw more to have the same procedure donw. Finally the cyst had grown so big they told me I had about 6 months to live and I had no option to have the cyst completely removed. I was told this was a huge op with big risks but had no choice. I had the op on the 17th of Apr 08 and was out of hospital 4 days later the doctor said it was like nothing he had ever seen i am great now with no adverse side effects. The thing is myself and my family pushed and pushed for answers on the issue because it just seemed as it was treated like only a ''cyst'' at the start but obviously it got worse so they needed to take action. You need to push the fact that you have no quality of life and that you want action taken in Nov at yor scan, if not move to a doctor that will listen. Im from Ireland and have a few names of good doctors so if you are from Ireland too let me know and I will give you the names good luck

[Lester1981]

I just spent the day hooked up to iv's and pain killers for another one of my bad headaches are back again.  I have over an inch by inch cyst in my brain and it is slowly growing.  I have some dr's telling me that it is for sure causing me the pain and then others say no. I have been in agony for years and have tried everything known to man.  I just do the best I can and see my neuro twice a year and see a pain management office once a month.  If I didn't have them I would be insane by now.  I have four children 24 to 16 that count on me not to mention an incredible husband. I also have an auto-immune disease and just had major sinus surgery 4 months ago. Don't give up you need a very large support group to get through this.  If you don't like your dr get a new one that cares and listens.  God bless

[galock]

Dr. Henry Friedman is a neurologist with Duke Hospital in Durham, NC  who I understand has done a great deal with pineal cysts.  Check out his web bio:

http://www.dukehealth.org/physicians/65AB8B0EC98FE63F85256DFD006A9363

[mfsv1006]

This is my first time posting a comment on any website but I have no idea what else to do. I am in the same boat as everyone else. I am 28 years old and I was told that I have a pineal cyst about 2 months ago. It all started with blurred vision and eye pain about a year ago. Then about 6 mths later, the dizziness, head pressure, nausea, vomiting, loss of balance, memory problems, left sided facial and arm numbness, ear/jaw pain on left side, and extreme fatigue started. I had a MRI and lumbar puncture done which were both normal except for the cyst. The neurologist I saw yesterday doesn't seem to think it is the cyst that could be causing my symptoms. The neurologist who saw me for the lumbar puncture said it could be a symptomatic pineal cyst. So they are conflicting in their diagnoses which makes me even more confused. I am not sure what else to do and am extremely frustrated. Is there any neurologists/doctors that would take me serious? There has to be something to this if everyone with this cyst is experiencing the same symptoms. Anyone have any advice?

[greengene]

I can relate to you; but, I have no advice. I am in the same boat. My symptoms seem to be a little different than everyone else's. I do experience frequent headaches but they are they are not too severe. I have nausea but no vomiting and eye pain. My big issue is sleep. I can not sleep at night but I can sleep all day. I can sleep for days at a time or be awake for days at a time. My neuro diagnosed me with narcolepsy a year ago. I never believed this diagnosis because the research I did was not consistent with my symptoms. The medication I have been taking to treat narcolepsy does not help. After having an MRI that I pushed for I showed a 15mm by 10mm pineal cyst. My doctors say that it is not causing my symptoms and no need to worry. I have done countless hours of research. The pineal gland controls your sleep wake cycles by the release of melatonin.

I am losing my faith in the medical system.

[ycompanys]

Neurologists may be very quick to tell you that you are fine with a pineal cyst and that it is not causing your symptoms.  But beware:  1) Doctors in general don't really understand what the pineal gland does; and 2) Some don't seem to understand the difference between symptomatic and asymptomatic pineal glands and tell their patients not to worry about pineal cysts.

Some things to keep in mind, according to the medical literature:

1) The most common symptom is headaches, followed by vision problems, dizziness, and balance problems, and in some cases insomnia, nausea and cognitive deficits.  In fact, a study that showed an almost perfect correlation between migraines and pineal cysts.  More rare are emotional lability, fatigue, ringing of the ears, and numbness / tingling.  In extreme cases, pineal cysts can result in loss of consciousness and seizure disorder.  So please take this seriously, particularly if the cyst is causing intracranial pressure such as hydrocephalus.
2) Pineal cysts can be symptomatic if they are larger than 0.5 cm.  Problems occur when the cysts cause compression in the brain, or when they are associated with apoplexy or hydrocephalus.
3) Radiologists cannot easily distinguish between cysts and benign tumors, often leading to misdiagnosis. NOTE:  A benign tumor is not metastatic, not malignant.  It is extremely, extremely rare to get a malignant, metastatic tumor in the pineal gland, so please do not worry about this unless your radiologist/doctor has told you otherwise.
4) It is common that patients are told that the pineal cyst cannot be affecting them after a neurological test.  But note that some patients present no neurological symptoms in these tests, while still having the symptoms in 1) above.
5) If you are in the 18-34 age group, your cyst can grow, so you should get MRIs every 3-6 months.  If your doctor does not want to, get a new doctor.
5) If you have to get surgery, get the following one but only if you have compression or hydrocephalus and your symptoms are incapacitating:  Suboccipital craniotomt with infratentorial-supracerebellar approach and microsurgical resection of pineal cyst.  Contrary to what is stated above, this is NOT brain surgery.  They access your pineal region from beneath the brain, so they do not affect your brain at all.  It sounds like a scary procedure but is actually straightforward for a good brain neurosurgeon.  The surgeon essentially inserts a microscopic endoscope that magnifies the area by 50x and uses a navigation system to get him there.  It is minimally invasive.  The medical literature says that most patients whose pineal cysts are not too large (e.g., < 4.5 cm) become completely asymptomatic after surgery.  The surgery entails a 6-8 week recovery, and a small incision in the head and removal of skull bone, which grows back after surgery.  The biggest risk associated with surgery is infection, as with any other surgery.

The most important thing is to get a doctor who takes your pineal cyst seriously.  It is a rare disorder, and few doctors understand it well.  So you will need to be persistent.

Good luck.

[malex823]

Hello,

In a way I am so relieved to find this forum. I have been diagnosed with a 10mm pineal cyst and the doctors keep telling me that my symptoms have nothing to do with the cyst but they are not sure where they are coming from. They have put me through some bad exams and have me taking medications that simply keep me high all day but my head continues to throb with pain or pressure. Does any one live in the PA area or knows of a good doctor in the PA, NJ, or DE area I can see.

[Ladykiro]

I am so glad I found this website.  I live in Southern CA and does anyone know of a great neurologist in the area to help distinguish and monitor care for what I have been diagnosed with (Pineal Cyst or Pineocytoma)??  Again like all the others above, my neurologist (actually his nurse) told me that this (9mm cyst) is an incidental MRI finding and is not the cause of my problems.  I have had moderate to severe migraines -almost daily now-for 7 years.  I also suffer from insomnia & sleep disorders.  Coincidentally I am also a chiropractor and so I have helped many people with their migraines & never gotten relief for my own headaches with chiropractic care.  I have been frustrated with the mainstream medical community for a long time but it was only with my pushing and pushing that an MRI/MRA even performed and I think that was even done just to placate me.  Help if you can because my finding just came yesterday and I know I am going to have to fight my way to find some answers.  Thank You so Very Much!

[kennyjou2003]

Find a medical institute equipped with Cyberknife and show your pineal cyst MRI scans and literature to the doctor in charge of Cyberknife operation.
CyberKnife may be the best way for pineal cyst treatment.

[trueCosta]

I am 25 years old and have a Pineal Cyst, I went to the hospital because i was having bad headaches and couldnt figure out why. They found it while doing a catscan. They told me I dont have to get it checked ever again, and it was not causing my headaches. That was is 2008. I have been having headaches for 2 weeks not, I think it is because of the cyst. The headache kind of doesnt go away and the pressure is mostly in the back of my head and my head is always sore. I am thinking about getting it checked again. I do think the headaches are from the cyst.

[trueCosta]

I live in PA, I went to St. Marys Hospital and University of Penn in Philly they both told me that the headaches are not from the cyst and i dont have to get it checked again. But I think I am going to get mine checked again the headaches are back and for 2 weeks now.

[cp6]

My daughter is 8 years old and has been complaining of headaches, nausea and sleeplessness for over 6 weeks now.  We got an MRI done that revealed three pineal cysts, one of which is 4mm, in a pineal gland that is only 9mm long.  The paediatric neurologist, paediatrician and ER doctors have dismissed our suspicions that her symptoms are caused by the cysts and have even suggested that the root of the problem is emotional/psychological.  Besides exploring approaches offered by natural medicine, does anyone have any suggestions or know of any doctors in the Greater Toronto area that take this matter seriously?  We've started researching pineal cysts on the web and blogs like this one seem to refute what we've heard from the medical practitioners we've seen.  
Appreciate any help you can provide.
CP