PINEAL CYST

[CReddin89]

THIS IS A PICTURE OF MY 17YR OLD SON. HE WAS DIAGNOSED WITH A PINEAL CYST IN FEB OF THIS YEAR. MICHAEL HAS ALWAYS BEEN A VERY ACTIVE VERY HEALTHY OUTGOING CHILD BUT IN DEC 2009 IT ALL CHANGED. AFTER HE CAME HOME FROM A CHURCH YOUTH RALLEY ONE NIGHT HE COMPLAINED THAT HIS HEAD WAS HURTING AND HE FELT A LITTLE DIZZY I TOLD HIM TO GO LAY DOWN AND TO TAKE SOME TYLENOL. HE WENT IN HIS ROOM AND I HEARD HIM COLLAPSE WHNE I WENT IN THERE HE HAD PASSED OUT AND WAS LAYING ON THE FLOOR TWITCHING ALL OVER. I RUSHED HIM TO OUR LOCAL ER AND THEY ADMITTED HIM AND BEGAN TREATING HIM FOR MENINGITIS. HE STAYED FOR ABOUT A WEEK. THEN IN FEB 2010 ALL THE PROBLEMS REALLY STARTED. I RUSHED HIM BACK TO THE ER ONE NIGHT AFTER A BASKETBALL GEMS WHEN HE BEGAN COMPLAINING OF A HEADACHE AGAIN BUT THIS TIME HE WENT INTO A SIEZURE LIKE EPISODE WHERE  HIS HEAD TURNED TO THE RIGHT, HIS ARMS DREW UP HE WAS MOANING /SCREAMING IN PAIN AND HE WAS JERKING AND TWITCHING ALL OVER, THEN HE STARTED MOVING HIS LEGS LIKE HE WAS RIDING A BIKE AND HE COULDN'T MAKE THEM STOP, HE WAS SENT TO CHILDREN'S HOSPITAL AND THERE THEY TOLD US THAT HE WAS HAVING COMPLEX MIAGRAINES AND THAT HE HAD A 9MM PINEAL  CYST AND THAT IT WAS A SYMPTOMATIC AND IT WAS NOTHING TO WORRY ABOUT. SINCE THEN HE HAS HAD ABOUT8 DIFFERENT EPISODES WHERE HE DOES THE SAME THING BUT THEY LAST ANY WHERE FROM 20 MIN TO 3 AND 1/2 HRS. SOMETIMES HIS LEFT ARM GOES NUMB AND THIS LAST TIME HE WAS UNRESPONSIVE AND WHEN HE CAME TO HE COULDN'T REMEMBER THE PAST 6  DAYS. WE HAVE SEEN NEUROLOGISTS, NEURO SURGEONS, HAVE HAD CTS AN MRI  A SPINAL TAP AND THE DR'S HAVE ALL SAID THAT THE ONLY PROBLEM THEY HAVE FOUND IS THE PINEAL CYST BUT THAT IT WAS NOT WHAT WAS CAUSING THESE SYMPTOMS. SINCE ALL THIS HAS STARTED MIKEY HAS LOST ABOUT 15LBS., HE IS VERY MOODY AND AGGITATED, HE HAS A CONSTANT HEADACHE AND HIS FRIENDS HAVE NOTICED A CHANGE IN HIS ATTITUDE.  I JUST WANT MY SON BACK. THE DR'S CAN'T TELL US WHAT THE PROBLEM IS BUT INSIST THAT ITS NOT THE CYST. I WHOLE HEARTEDLY BELIEVE THAT THE CYST IS WHAT'S CAUSEING ALL HIS PROBLEMS. IS THERE ANYONE OUT THERE WHO IS SUFFERING THESE SYMPTOMS AND IF SO WHAT HAVE YOUBEEN ABLE TO DO? AND CAN MIKEY BE HELPED?  

[lawhern]

No way is any of the pattern you describe a consequence of migraine, though Mikey might be having them as an outgrowth of other problems.   And a 9-MM pineal cyst can indeed be "something to worry about", especially if it puts pressure on the brain stem or causes elevated pressure levels in Central Nervous System fluid. Was Mike evaluated for hydrocephalus?  Did he have a pressure test in a spinal tap?  Overall, my instinct 9as a layman who has read medical literature for over 15 years), is that the people who have seen Mike so far have seriously missed something in his workup.  

Your son needs to be seen and re-evaluated in detail by a competent neurosurgeon or board certified neurologist -- preferably in a setting where the physician is supported by other specialists in a joint practice or regional care center such Mayo Clinic or Johns Hopkins or Mass General Hospital.  Mikey seems to be having seizures. The folks you've seen so far appear to have thrown up their hands and said "we don't know".  That's not good enough. If they are aware of the eight incidents you have reported, then the docs should have developed a treatment and evaluation plan to nail down what really IS going on.  If they haven't, then in my personal opinion they have committed gross medical malpractice.  

[rumpled]

I would also suggest that Mikey see a pediatric endocrinologist. The pineal cyst is symptomatic, and they would be able to test the hormone, as well as the pituitary hormones (the pituitary is right next to it) and see what is going on.

Mikey needs to see a skull base surgeon - like the ones that do endoscopic pituitary surgeries as most surgeons are not skilled to do the type of surgery that he needs. Look for a pituitary center.

The usual thing is that it is small, ignore it, but Mikey is having a problem and he needs to be treated, and he needs the help now.

[CReddin89]

THANK YOU SO MUCH FOR YOUR COMMENTS. I JUST RECIEVED A CALL FROM THE SKULL BASE INSTITUTE IN LOS ANGELES, CA AND THEY HAVE SCHEDULED A PHONE CONSULTATION WITH TOMORROW. I WAS TOLD TO TALK TO THEM IF THEY CAN'T HELP US I WILL CALL THE PLACES THAT YA'LL HAVE SUGGESTED TOO. AGAIN THANK YOU FOR YOUR THOUGHTS AND CONCERN FOR MY SON. WE REALLY APPRECIATE IT.

SINCERELY,
CARLA

[Dr. A. Srivastava]

Thank you for your question. Although without being able to examine you I can not offer you the specific advice on diagnosis and treatment that you need, but I would try to provide you some relevant information about your health concern.

Pineal cyst is a brain cyst that may remain asymptomatic for long years. But if it is large it can cause headache, poor attention span, visual disturbance, paralysis, seizures and gait disorders. Therefore, surgical intervention is essential to remove the large cyst and if permanent damage needs to be avoided.  Craniotomy, needle aspiration and cerebral shunts are common surgical treatment that may help.  Please consult a neurologist right away in this regard. Hope this helps.

[CReddin89]

THANK YOU FOR LETTING ME KNOW THAT, YOU ARE THE FIRST TO TELL ME THAT mIKEY COULD HAVE PERMANENT DAMAGE FROM THE CYST. OUR dRS HERE HAVE NOT BEEN CONCERNED WITH IT AT ALL.

WHAT WOULD YOU SAY IS A LARGE CYST? MIKEY'S IS 9MM.

AGAIN, THANK YOU FOR YOUR COMMENTS.

SINCERELY,
CARLA  

[Dr. A. Srivastava]

Thank you for your question. I think here the most essential thing is to evaluate what symptoms you are facing with this size of cyst. Since brain surgery is always associated with more risks therefore final decision rests with your treating neurologist. Hope this helps.

[dprincess23]

I also have a pineal cyst... i'm fully symptomatic.  My neurologist says as long as the cyst doesnt grow, i have nothing to worry about.  However each day i feel worse, extremely tired, headaches everyday, fatigue, i forget things, numb arms, vision loss, double vision, dizziness, i've passed out a few times  My cyst is 1.2 x 1.0 cm.  My lateral ventricles are dilated causing me to have pressure in the head... and doctor's say everything is ok.