Okay so I have a pineal lesion. It is approximately 6mm in size and I have been having horrible vertigo, dizziness, balance problems, heavy pressure in my head, vision disturbance, and pain around the back of my head.
This all started in 2002. I was misdiagnosed by almost every doctor. Finally Dr Hrayr Shahinian of Skull Base Institute in Los Angeles told me he was 99% sure that the cause of my symptoms was the pineal cyst. He wants to wait and see .. he says he will operate if it grows to be 10 mm. Obviously I can't wait that long. But I respect him and I think once he understands the severity of my symptoms he will operate on me NOW.
But anyway, if you have a pineal lesion or any brain problems, I highly recommend Dr. Hrayr Shahinian. He is #1 NueroSurgeon to ever walk on the face of this planet.
Also check out this.. www.savemissy.com - a website on a woman who just had an operation by Dr. Hrayr to have a pineal cyst removed.
I aslo have a pineal cyst 1.2 cm in size. i have had two consoltations with neurologists and 1 CT and 2 MRI, one not so long ago. i ahve been told there is nothing they can do with it as it has not changed in size and dosent pose any threat. but i do still have dizzyness and genraly feel rubish so im glade you found someone who takes this problem seriously
Hi there, I wish i lived in America because it sound like yr Neurosurgeon is actually taking people seriously. My cyst is 20mm big now and has grown by 5mm in the last year. I have severe headaches all day, everyday and it is limiting my life. Good luck with everything :)
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. 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) 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.
I have A 11x10 cm pineal tumor, nobody will touch me, I have siezures, limited use of my left arm, headaches and spasms.. I also have no insurance.. Working on that.. Any idea's people? I'm getting worse everyday.. I'm 36... HELP!
My 12 yr old son just diagnosed with a 10mm pineal cyst. Pediatrician size the size is a concern since it's been growing for awhile. Had migraines in Dec, Jan, and early Feb w/nausea & visual disturbances. Keeping a log/diary of when it occurs & what symptoms are. Seeing pediatric neurologist for testing next week. Will keep you posted on what the doctor says. Also I've heard only great things about Dr. Shahinian and listened to him speak on youtube.com, he's a great surgeon & I'll keep him in mind if my son winds up needing surgery which he may if it gets any larger. Thankful for any comments.
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