pineal cyst

[Rhiannyn]

Hi, I have a 11yr old son, that has a pineal cyst, it's been present ever since he was 3 1/2yrs old. Currently suffers daily head pain, moderate to severe, can trigger migraines on top of it.  Has tingling and numbness in fingers, hands, legs and feet.  They found fluid about 3yrs ago.  Has intermittent gait issues.  Gets dizzy easily w/ exercise, going up or down stairs, tilting head forward or back.  This yrs EEG came back abnormal w/ some seizure activity.. New add on is that he has swelling on the top, rear of his head that swells more when the pain is higher and doctors have zero clue what it is.  I have been battling neuro for years both his neurologists and neuro dept at children's for answers they are quick to call all head pain migraine and refuse to acknowledge the cyst is making these issues happen.. It has interfered w/ his ability to function as a kid and also interfered w/ his performance at school... He is also ADHD and Bipolar on top of all this.. I am a single mom trying to fight and advocate for him on my own.... Just feel like a lot of times they patronize the mom, refuse to listen which causes me to hit my head against the wall..:(,,

[Rhiannyn]

I am literally hitting my head against the wall. Doctors here want to immediately brush it off as migraines and ER/ hospitals don't want the responsibility so they shift it back to the neurologist. Since Tuesday of last week, my son has been waking w/ head pain, some times in tears, gait issues intermittent. He has missed 3 days of school. I need to find a good neurologist in Washington State, that will refer him to surgery or other options. Medications don't work, unless it's a narcotic an it's only temporary relief. He has dealt w/ this since he was 3 1/2 yrs old...

[Dr. A. Srivastava]

Hi, Thank you for your question. 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.