Pineal cyst

Is a 1.5cm pineal cyst large or small?

[rumpled]

As compared to? As far as pineal cysts go, from my small knowledge, it seems to be on the larger size.
I would find someone who is experienced in treating them and as well get a neuro-endo to test your hormones.
I hope some of the others who have posted that they have one will chime in.

[rayoflight79]

hi, i was diagnosed with a 1.6 cm pineal cyst in january, this is on the larger side as is anything above 0.5cm i was told it is nothing to worry about but i have constant headaches and severe dizzyness, i vision has also deterioated,apparently it can only become a problem if it grows and starts to cause intracranial pressure.
i am going back to the neurologist to have this checked again as its been 7 months now.

[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 undestand 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 and dizziness, and in some cases insomnia, nausea and cognitive deficits, particularly if cognitive deficits are involved.  
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.  
4) 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 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.

[Jules77733]

Any pineal cyst equal to or greater than 1.0cm is considered "large" based upon the reading I've done, and they have a high likelihood of being symptomatic.

Unfortunately, given that the "treatment" for pineal cysts is risky brain surgery, most neurosurgeons are hesitant to operate on pineal cysts given their location and proximity to important structures in the brain, so they'll tell you living with the symptoms that the cyst is causing outweighs the risks of undergoing surgery to remove it. And they're probably right....

[rumpled]

It does require surgery, however, if you have the right surgeon and the right tools, the risk is minimized. You can get the correct surgeon and get the relief needed. There is no need to suffer. If the lesion gets larger - it can lead to more issues.
A good endoscopic skull base surgeon can remove the lesion.

[afbrown]

Thanks for the info.  Are you by any chance in the medical field?

[rumpled]

No! This is a patient forum run by patients for patients. The doctors are in expert forums. Always seek out medical advice anyway. Anything you read on the internet may or may not apply to anyone - as your history or situation can differ (no one can post everything about themselves, nor should they). I have had endoscopic surgery though and know it and have run into people who have had bad surgeons (without experience)... so experience really makes a difference with this surgery.

[Jules77733]

Pineal cysts don't always require surgery. Although surgery offers the potential of eradicating some of the symptoms, it's a very risky choice given that doctors/researchers don't know much about the pineal gland or lesions on it. This means you could still suffer after brain surgery, or possibly have new problems crop up as a result of the surgery.

Bottom line? There's a reason brain surgery isn't encouraged for most people with a pineal cyst. It's only used as a last-resort option since every surgery--especially a surgery of this nature--comes with risks, and those risks begin with things like pre-surgical bloodwork and administration of anesthesia, and don't end until the surgical site has healed weeks later. Aside from the risk of the neurosurgeon nicking something important (and everything is important in the brain) while they're operating, the risk of contracting an infection is incredibly high. This is why most neurosurgeons will refuse to perform surgery on a pineal cyst unless the patient is having severe vision problems, seizures, and the like.

Finally, pineal cysts can shrink on their own. I have a friend who had one for several years when he was younger, but no longer has it.

[rumpled]

Ah - I left off the "If"... Sorry... hence my however...

I agree, they don't always need surgery. From what I know, the risk is to the carotids and the optic nerves and the pituitary nearby - not really the brain structure?

Having had 12 surgeries myself - I can attest that anesthesia does a number on you as well.

[Jules77733]

The pineal gland hands at the base of the brain in the center of the skull, so it's quite far from the pituitary, which is closer to the front of the brain. There's definitely a risk with nicking the optic nerves (causing blindness), as well as causing internal bleeding if any ventricles are disturbed.

I used to think the pineal gland was close to the hypothalamus until my neurosurgeon told me that if the brain were viewed as a neurosurgical map, the pineal gland would be about 260 miles away from the hypothalamus....so while it appears close on anatomical pictures and radiology images, it's actually very far away and in no danger of being nicked during a surgical procedure on the pineal gland. I guess this would make the pituitary at least few hundred miles away, also...but I'm not sure, and it depends on the entry point of the neurosurgeon during surgery, I suppose.

12 surgeries?! Geez. I've only had two, and one was for the removal of wisdom teeth (I wasn't "under" for that, either!). I've had anesthesia for two procedures, though, and I definitely agree that it's rough...and always risky...so I try to avoid doing it if I can.

[rumpled]

From what I read, you use a skull base surgeon and it would depend on the approach of the surgeon. Also I would think that the lesion can be on different sides of the gland?

From a website:

"Regardless of the type of tumor involved, tumors in the pineal region usually cause symptoms through one of three mechanisms. They can increase pressure in the skull by blocking the flow of cerebrospinal fluid (hydrocephalus), they can compress part of the brain, or they can cause disruptions in the endocrine system, the system that controls hormones and includes the pineal gland. Hydrocephalus is a common result of tumors in this region, and will lead first to headaches, and then perhaps to nausea, vomiting, and altered mental status. The brainstem and the cerebellum are the most common sites of compression from a pineal region tumor; compression in these regions can cause abnormal eye movements (including Parinaud’s syndrome, the inability to look up), double vision, uncoordinated body movements, or unsteady gait. Endocrine dysfunction is less common and usually is caused when the tumor involves the hypothalamus, a nearby brain region that is involved in growth and metabolism."

I had my wisdom teeth out under anesthesia too - but I don't count that...