Help for pineal cyst?

[jlynlewis]

In the last month or so, I have been having extremely bad headaches, dizzy spells, severe confusion, and lack of sleep. I was attributing theses things to a rather large lipoma that I found on the back of my neck. After speaking with the general surgeon, he determined that the mass was NOT the source of my headaches and referred me to a neurologist. I didn't call her right away, thinking that perhaps I was making a bigger deal out of the whole scenario. Until about a week later, I woke up with a slight headache, nothing major. But throughout the day it got progressively worse. By 2 pm, I could barely see out of my left eye. I was so light sensitive that I had to have someone drive me to the ER. They did a CT scan and found a 2 cm pineal cyst. I have since been to see the neurologist and she has done an MRI and a complete battery of bloodwork, only to conclude that the cyst is the underlying problem. She then referred me to a neurosurgeon. Before even speaking with me, he concluded that the cyst is in no way the source of my ailments. I explained to him that I was not born with the cyst, as I had an MRI about 6 years previous and nothing had shown at that time. He doesn't believe it to be cancerous as it apears to be fluid filled, but cannot be certain. Therefore a biopsy will need to be done. I have now been referred to another neurosurgeon.

Now for my question(s)... Why is my quality of life such a non issue? Is surgery to remove such cysts on the pineal gland life threatening? Should I not persue surgery and just deal with it? Help...Please.

[rumpled]

Quality of life... ah... it should be an issue. Find another doctor. Find a neuro-endocrinologist. You need to get some testing. Then get a referral to a proper type of doctor. BTW, your cyst is IMHO the problem.

You should get tested for how much melatonin is in your blood - that is causing the sleep problems. The cyst itself is causing the headaches and the eye issues - go see a neuro-opthomoligst and he will set you straight on all that.

You do not need a biopsy - you need removal. It can be removed endoscopically - via the nose. Get to a surgeon that typically does pituitary surgeries or skull base surgeon to do it.

If it has grown to 2cm in 6 years, you need to get on this - you do not want the cyst to break open. Cancer is probably not the worry, but eye and hemorrhage can be worries. Find competent doctors for yourself.

[jlynlewis]

Have since been to see 2nd neurosurgeon, he wants to do surgery. What are  the odds of my having no problems after surgery. I am so scared...

[rumpled]

How many surgeries has this guy done on pineal cysts?

Surgeons want to cut. That is fine - but ask a lot of questions first - how many, complications, Fully endocscopic (better than microscopic)?, is he just going to drain or remove the membrane so it will not recur, how long in the hospital, risks to optic nerve, etc.

I would also line up an endo first as you may need some hormonal support afterward.

Did you see a neuro-opthomologist?

[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.