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PINEAL CYST SIZES AND MIGRAINES
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PINEAL CYST SIZES AND MIGRAINES

HI, MY 8 YEAR OLD SON WAS HAVING DIFFICULTY IN SCHOOL IN MATH, READING...FREQUENT MIGRAINES, MISSING SCHOOL OFTEN..HE WAS DIAGNOSED WITH A PINEAL CYST BY MRI...THE NEUROLOGIST IS ON VACATION AND I HAVE AN APPOINTMENT TO GO OVER THE RESULTS. NEXT MONTH..(THE MRI SAYS THAT IT IS SLIGHTLY LARGER THAN USUAL UPPER RANGE FOR INCIDENTAL PINEAL CYSTS BY 2 MM IN ITS LARGE DIMENSION. THIS MEASURES 17 MM ANTERIOR TO POSTERIOR X 11.7MM TRANSVERSELY AND APPROXIMATELY 10 MM SUPERIOR-TO-INFERIOR.  THIS HAS A RATHER CHARACTERISTIC APPEARANCE FOR A PINEAL GLAND CYST.  AT 17MM, THIS IS SLIGHTLY LARGER THAT TYPICAL CYSTS. fOR THIS REASON THEY SUGGEST A FOLLOWUP MRI IN 6 MONTHS TO ASSURE STABILITY AND TO ASCERTAIN TYPICAL STABLE IMAGING FINDINGS.) MY SON COMPLAINS AT LEAST 4 TIMES A WEEK WITH HEADACHES, SOME DIZZINESS...SOME DAYS GOOD SOME DAYS BAD...MY 15 YEAR OLD DAUGHTER WAS DIAGNOSED AT AGE 8 Y WITH EPILEPSY SEIZURE DISORDER, SHE HAS COMPLEX PARTIAL, AND DOES ALSO HAVE MIGRAINES, SHE HAS BEEN ON SEIZURE MEDS SINCE 8 YEARS OLD...THIS IS WHAT SCARED ME WITH MY SON HAVING HEADACHES....DOES ANYONE HAVE OR NO ANYONE WITH THIS SIMILAR MRI RESULTS???I CONTINUE TO JUST GIVE HIM TYLENOL FOR HIS HEADACHES UNTIL HE GOES BACK NEXT MONTH TO THE NEUROLOGIST.
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Avatar_dr_m_tn
The headaches that your son is getting is due to the cyst.Please wait for the neurologist to come or consult another neurologist. The only treatment for the pineal cyst is surgical. But the approach is often difficult because the pineal gland is located at the base of the skull. Please confirm that the surgery is possible.Hope this helps you. Take care.
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Avatar_m_tn
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.  Seizure is uncommon, unless the cyst is large and causing a lot of intracranial pressure or hydrocephalus.  I would have your daughter get an MRI to see whether she has a pineal cyst too.
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 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.  However, I don't know what the surgical results are like in children.

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.
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Avatar_f_tn
hi im new to all of this. just found out friday that one of my twins has a pineal mass 13.8mm in size. we live in a city where there is likely a simple answer to all my questions. but my twins were born with plagiocephaly and other problems. Icp is an on going issue. on top of it all, the more i read about this the more and more it sounds like my other boy and myself..my gosh what r we about to face? ive already got a hemo appt set up for the day after tomorrow. and on the 22 we leave to Dallas to see their neurosurgeon. im not sure how all is going to come about, but what i do know is that im scared foe not only him but his brother and myself. a tight gene pool must be about somewhere. my goodness the r only 8 and i have so many mental problems as it is along with passing out and aches from the back of my head to my neck as it is. all the signes point to "we all got it". whst ever life has brought to the table ive been able to deal with it. but this i can not. i need some answers please...
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Avatar_f_tn
Our daughter is 27 and last month was diagnosed with a9mm pineal cyst. Her neurologist has done three MRIs. Two without contrast and one with. And has done and EEG. Normal. She is having severe headaches. To some extent she has constant pain. She also has nausea and vomiting. This is very difficult for her. Her neurologist told her yesterday that the cyst is no problem. The (several) meds he has given her for 'migraines' do not help at all. I want her to get a second opinion. I really would like her to go to Emory where they seem to take this seriously and can do microendoscopic surgery, if necessary. How can I convince her to see someone else. Can anyone help me with some advice, please??
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