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!

5 thoughts on “Battling a Colloid Cyst of the Third Ventricle”

  1. Lynnrae says:

    Thank you so much for sharing your experience with a colloid cyst. I tend to wonder if there will be a day they discover a link between lymphatic cancers and the existence of a colloid cyst. I am also suspicious of genetic linkage in same sex siblings as although I am not a biological twin, both my sister and I have colloid cysts. Sadly, hers is “inoperable” and was never diagnosed in time so she has been disabled, suffering seizures and a host of debilitating conditions throughout her lifetime. Misdiagnosis was severe mental illness in spite of my consistent disagreement with multiple professionals that I was strongly suspicious of a biological cause due to the fact that the onset of illness was within too short a period of time. I was misdiagnosed also and pray that someday the medical community will advance in the diagnosis and treatment of this catastrauphic condition of the brain/heart in it’s unfortunate victims. GOD BLESS YOU…I am also in remission for lymphatic cancer and truly believe there is a link via the instability of lipid production in colloid patients. I continue to research for my sister’s sake and the babies born with this condition.

  2. Celynhj says:

    Thank you both for sharing your experiences with a colloid cyst. I was (luckily or unluckily) diagnosed with a colloid cyst in the third ventricle of my brain when I was 19. They’ve told me that it was 0.01mm too small to operate and that we just need to monitor it. 11 years later I’m now 8 months pregnant and concerned that labor (natural, with an epidural or with a c-section) could trigger problems with the cyst. I have also suffered from panic attacks and pmdd-like depression. Not sure there is a dr out there who can give me any reassurance or tell me with certainty what will happen or what decisions to avoid during the birth, but without concrete medical advice, I guess my best bet is just to stay strong and carry on.

  3. Glenna says:

    My husband at 19 was with his family. Started having a headache, bomitting and passed out. His parents took him to the hospital and was diagnosed with colloid cyst. First they put in a shunt stabilized him and tried to remove the cyst but couldn’t. He then had surgery again and was told they got everything. He rehabbed and got on with his life. 14 years late we met and got married and he told me about this surgery and I found out he didn’t have follow because the surgeon left the country! I made him get his records and took him to his doctor. MRI done. Cyst is there and growing. Long story short, it grew back and at the age of 42 had to have another surgery which was harder because of the scar tissue. That was 3.5 years ago. His had some depression and higher level deficts but is doing ok. I have to say though when he starts to show signs of memory issues or something else I get worried. Thank you for talking about your story!

  4. Danette says:

    My daughter was diagnosed with a 3rd ventricular colloid cysts, had surgery to remove and it has not come back. This was 5 years ago. She still exhibits behavioral problems. Does something like this cysts cause permanent behavioral problems? I am almost certain it has she exhibits signs of depression, anxiety, and behavioral problems. Is this permanent or another issue entirely? Before colloid cyst was found she had to be admitted to a hospital for behavioral problems. I can’t help but believe that it all stemmed from Colloid cysts. She has had a tough time emotionally and her Dad and I have had a tough time dealing with all the emotional issues. She is now married and I still worry about her mental health.

  5. My surgery for Colloid cyst removal from the 3rd ventricle of the right brain was in May 2017. I too, have Leukemia but is now in remission. I guess, my surgery was tough, I had a hard time waking up. When I did wake up, I saw my doctor sitting beside me. He has always been very kind to me. I worked with him for several years and am very proud to know he was there to help me, along with the entire Neuro team at Owensboro, Ky. I am very proud to say, I worked at the hospital for nearly 20 yrs. God Bless Them All.

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