I have a pineal cyst that measures 9mm x 15mm. The GP says its large, the Neurologist says it not large and the Surgeon says it's tiny. There seems to be a discussion that the cyst is acting as a ball valve would and may be blocking the ventricle. I have migranes and am vomitting every 3 to 5 days. under what circumstances would a cyst cause these symtoms? What size is a problem or is it's location the issue?
I would find a neuro-endocrinologist and get your hormones tested.
I would also find a surgeon that has previously worked on these - find one that says he does "skull base surgery" and "endoscopic" and get his opinion. Size may not be the factor if it is pressing on something else.
Sure, yes, tumors and cysts can be a lot larger, but you are having symptoms so find a set of doctors that can help.
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 and dizziness, and in some cases insomnia, nausea and cognitive deficits, particularly if cognitive deficits are involved. More rare is numbness and 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.
Oddly, you will hear a lot of argument that pituitary and pineal lesion removal is not brain surgery, even though they are done by brain surgeons, and require opening the dura, the protective membrane around the brain. I think, like you - it is just a bit silly. Whatever - people find anything to argue about. Maybe that is just skull base surgery? LOL?
I was told I have a pineal cyst 2.6x2 cm and because that size, I was sent to see a neurosurgeon. I've actually seen two from that office and the both brought up the option of the surgury because it looks to be causing my vision problems and possibly starting to block fluids. And has been nerve racking for my wife and I , but feel very comfortable with my surgeon. He has done many tumors, and several cysts with great succuss I was told. Was told there is chance I won't bigger, but also have a chance it could and problems get much worse because the fluids being blocked. Scheduled the surgery for june so we can prepare, but he was nice to set me up to see another neurologist for a 3rd opinion since we are not 100% on going thru with surgery. I agree with many posts I've read. Find an experienced doctor who has delt with these and will treat you properly
I agree, especially because websites just list a few symptoms. It'd be great to hear what symptoms actual patients have. I thought my post my offer an alert so they'd return to MedHelp. :o\ Thanks for the info!
Here are some of the symptoms I have been experiencing over the past 6 years or more with an increase of activity, then a decrease over time, then it steps back up again. We were looking at the possibility of MS by obtaining a MRI to determine brain lesions but the MRI showed a Pineal Cyst 11.2 mm X 7.1 mm by 6.4 mm.
Balance issues - lots of falling
Pressure in head
Numbness and tingling in face
Back pain - stiffness
Muscle Spasticity - bilateral in biceps/claves/thighs (painful for days)
Inability to walk as its too painful to hold my body up
Blacking out and falling -repeated hits to the head
Head droop -bobble head type of feeling
Weakness in arm and legs
Torso muscle spasticity for days
Feeling of fear -panic
Left arm muscle seized - fingers curled and unable to move for several hours after waking up from the night sleep. This has happened about a dozen times over the last year.
Bladder issues/bowel issues
Feeling that I do not have the muscle strength to hold myself up.
I will be undergoing surgery at the Skull Based Brain Institute in Dec. 2014 to have the cyst removed.
You described a pineal cyst as a "rare disorder."
I was 16, when I could no longer withstand my headaches. Had an MRI performed, and a small spot was found. At the time my doctor (GP) described it as a "mole." He said it was no cause of alarm and that most people have them. I believed him since I was 16, naive, and well I'm covered with moles. He also told me that I would likely have to live with chronic headaches. I was given pain medication and dismissed.
I'm now 21, and the headaches still persist. I know have to wear glasses. I've always been clumsy, so I can't say that the cyst is causing me to be unbalance.
I went to another doctor last week. I told him how the spot was described to me. He first didn't believe that I could remember having such conversation that occur 5 years ago. He got a hold of my MRI a saw the spot. A few minutes later he came in and said, "You are right. There was something on your MRI. It's called a pineal cyst." He wanted to get a CT scan right there and then, but insurance had to approve. He also wants another MRI.
I'm going back Friday to set a time. I'm somewhat alarmed. I've read online a couple of articles and the majority seem to suggest that pineal cysts are quite common and most don't need to be removed.
Rare or not (I think docs throw it around so they don't have to deal, treat or whatever), if you have symptoms like your headaches, it should be treated and I would be firm about that you don't want to live with them.
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