Diagnosed with pineal gland cyst

[coachlinda]

What symptoms can this cyst cause? My daughter has had muscle tension and aches from her neck to her legs for a while now. I have read that the cyst may cause such problems. She also has headaches sometimes on the side of her head. Does the cyst enlarge with time?

The cyst was discovered with an MRI her neurologist ordered.


This discussion is related to Pineal Gland Cyst.

[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.  More rare is 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.

[Tammy0054]

I am a 22 yr old female, who has a pineal cyst that is 2cm in size. I have had severe off balance problems, vision problems, my arms and legs go numb as well as parts of my head. I also have severe pains in my head that tend to wake me out of a dead sleep. I as well have got the run around from doctors saying that it can not be causing the problems I have its coming from something else. I go to see another neurosurgeon for a second opinion in 2 weeks, we'll see where that goes the last one said the surgery was too risky unless it was growing which it has. It has grown 0.5cm in the last year, and still haven't had anything done.

[Steffany]

I agree. I was finally told by my neurologist after my last MRI last year to go see the surgeon at the University of Miami. I waited for 2 hours for him to tell me everything is fine. Even though it has grown each year and had gotten more fiborous this last year everything is still normal.
I have very bad vertigo from time to time, but no one can explain it. None of the antivertigo or anti-nasuea meds work. They say they don't know what's causing it, but it has nothing to do with the cyst they found 4 years ago when I first starting having problems. There has to be someone doing a study or something on this. The doctors don't even really know what the pineal gland does, so how do they know these are not symptoms?

[NuttyNatalie]

Hi All, My name is Natalie and i'm 26 years old. I was diagnosed with a Pineal Galnd Cyst in 2005 after a 3 week stay in hospital.

I had Mild Generalised Cerebral edema and ended up not being able to speak for 2 months until the swelling in my brain had fully gone. It also disabled all my trunk muscles and i found it very hard to walk. The Dr's never could give me the cause or any answers as to why this had happened to me.

Subsequent to that i have MRI scans every year so the neurologist can monitor the growth and density of my cyst. Up until my last recent scan everything seemed to be the same. I had an appointment on tuesday only to be told that my cyst has got bigger and changed in density appearance. It is now 20mm big. I have constant headaches, my vision is getting worse, sleep all the time but i'm constantly tired, but still neurologists keep saying to me its not anything to do with the cyst !!

Because it has got makeably bigger ( +0.5mm in a year ) i am now being refered onto a neurosurgeon, but being told by the neurologist that my symptoms are not being caused by this so i don't think he will do anything.

Why are there so many people out there in the world who can't get proper treatment for this condition without a full scale battle on their hands. I'm starting to lose hope in the people we should be able to  trust the most. . . . . . . . .

[sandy4255]

I am 54 yrs old and was diagnosed with a pineal gland cyst in 2001 and by 2003 it was over 2 cm in height and width and was call a tumor I went to a neurologist and he told me that I needed to have surgery because if it grew any more I would go into a coma and die. i had a craniotomy and three months latr it returned and was tge same size but a little shorter in height,he told me that it was too dangerous to do another craniotomy.I have alot of headaches, which have been more frequent lately.I haven't had a MRI in over 3 yrs, but have thought about having one since I have had more symptoms in the last year. I have a strange pain on the right side of the top of my head, that is kind of like someone is pulling my hair in a certain area and it kind of burns too. I 've had this same pain on my right leg that comes and goes just like the one on my head. Sometime I think I would rather not know , but my husband saya I should check it out.I do know that when ever you have something like this you look at life differently.Good luck with your pineal gland cyst and I wish you the best. Enjoy the life you have and always treat people the way you want to be treated ,because none of us are promised tommorrow.

[sarahren]

On a recent CT scan my daughter's pineal cyst has grown in the past 3 years from her MRI @ birth. It has gone from 4mm to 9mm. Surely more growth could happen, but how big do they get b4 causing issues?

She already has hydro from birth anyway.