Battling a Colloid Cyst of the Third Ventricle

Story by Wendy Shores.

In 1983, I gave birth to a son through an emergency c-section, who was born with Angelman Syndrome.

That, in itself, was rare with only 2000 patients having been diagnosed with Angelman Syndrome when he was diagnosed in 1985. I had gained a lot of weight during my pregnancy with him and was determined to take it off. While I was on a bike one day, I had a heart palpitation and from that point on, they got worse and worse. I hopped from doctor to doctor until, in 1998, I fell on an icy patch in a parking lot and banged my head on the bumper of the car parked next to me. The headaches that ensued were the drop you to your knees, pull your hair out by the roots because it hurts so bad kind of headaches. Several visits to the doctor, emergency room yielded nothing. It was a sinus infection, take these antibiotics.

Finally after six months of these off and on headaches, I told my doctor that he was either going to find out what was wrong or I was going to leave his office and go home and blow my brains out.

“Hmmmm,” he replied. “Maybe you have a bleed in the brain from that fall last October.”

Off I go to the hospital for an emergency CT scan and less than an hour later I was being ushered into a neurologists office who told me I had a colloid cyst of the third ventricle. He told me that if I put a finger on the top of my head and another one on the top of my ear, where they would meet in the middle of my brain was where this cyst was. It had to come out, it was 2 cm by 2 cm and it was cutting off my cerebral spinal fluid and causing the heart palpitations. The c-section of my son is probably the trauma that activated the symptoms but it could have been anything. A fall, a blow to the head, an accident where you bang your head…

Most people dont know they even have this until the coroner finds it during an autopsy. I was very lucky. From what I understand they are always benign and people are usually born with it.

Eight hours on the operating table, six months until I finally felt like myself again and the doctor could only remove 75% of it. He told me that I would be dead before it ever grew big enough to bother me again and I can live with that. The surgery immediately stopped the major anxiety and panic attacks that had me almost agoraphobic for years. It was totally debilitating. Bam! They were gone! I could go to the mall again, go out for dinner with my husband and nothing caused the anxiety attacks anymore. The heart palpitations have also lessened.

Finally my life is back to what a normal persons is. Well not exactly, I ended up with SLL (small lymphocytic lymphoma) from an overdose of radiation from all of the CT scans the neurosurgeon had done. At least that is something that can be and is in remission! Life is certainly a wild ride and full of surprises. A lot of them I could do without!

My advice to anyone who KNOWS there is something wrong is: to trust your body, you know it better than anyone else and BE PERSISTENT! Some doctors like to think they are God and know everything but its obvious thats not true!