I was diagnosed about 3 years ago with a pineal cyst- I initially went to the hospital because I thought I was having a stroke. Several tests later, the doc said that i had a "freckle" size pineal cyst probably caused from head trauma some time during my life. Since that diagnosis, I have had severe vertigo, (which I am taking valium for), but i have severe headaches, my eyes are "twitching", I can't see as good as I could before (maybe I need glasses now, I'm 42). I have loss of balance which has made me fall down on more than one occasion, I find it hard to concentrate or remember simple things, and at times I get totally lost in conversing. I am seriously fatigued most of the time, sometimes I can sleep for 12-18 hours straight, other times not at all. My Doc hasn't acted like it's any big deal but I think my symptoms are worsening and I wonder if the cyst is growing. In May when I go back to the Doc for my script refill, I'm going to tell him I want tested to see if it has grown. I sympathize completely with everyone that has this, and I DO think it's a big deal and should not be dismissed as a NOTHING. Anything growing in your brain in such a dangerous area can't be good. God bless you all and maybe if we all start complaining, the Docs will take it more seriously. What does everyone think? You can reply to this or email me @ DBrown_428***@****
I have been having severe fatigue and dizziness, some anxiety also. I had an MRI done 3 yrs ago which revealed a pineal cyst. I just had an MRI done today to see if it has enlarged. It would make since b/c of my symptoms. My primary Doctor ran blood work and could find nothing wrong.
I had been diagnosed for about 4 years now. I have had my yearly MRI ever since snd each time they said it grew a little. The Doctors say it's probably due to the fact the machines are getting better every year and it can just see it better. This last time my Doctor actually referred me to the University of Miami to see a surgeon since it was more fiborus than normal. The surgeon said it's nothing to worry about and he does not think its a good idea to take it out. I understand the pineal gland is in a very bad place in the brain, but I have also been looking up alternatives to invasive surgery. Has anyone actually had their cyst taken out? Have the vertigo and headaches gone away? Was it worth it to take it out?
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.
My 16 year old son has had horrific headaches for about 5 years now so his doctor put him on migraine medications which never helped at all. About a month and a half ago he had a seizure while we were at church and was taken to the hospital and examined. He was told he could attend school the next day where he had yet another. We had an appointment with a neurologist and he had an E.E.G. which they said showed signs o epileptic activity on the left portion of his brain so he was put on anti-seizure medication. He just had a M.R.I. to look for any abnormalities. We received a call yesterday and they said that he had pineal cyst. The doctor wants him to continue on the medication and to have another M.R.I. in 6 months. I read that pineal cysts causing seizures is very rare. Should we wait this long?
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