Our Stories

These are the stories I've been collecting since 2003. Hopefully we'll make this whole site more streamlined so people can add their own stories but for all intents and purposes this was the original arachnoidcysts.org.

My name is Ema, I am a 24 year old mother from New Zealand, with a 17 month old daughter who has a Left parieto-temporal arachnoid cyst with midline shift.

They first discovered the cyst when I was nearly full term (8 1/2 months). I was told by a top neuro-surgeon that this was the largest cyst he had seen on a newborn child.

I was told that the only thing to do is to wait and see how the cyst effects my baby as she grows, so basically I was to watch my daughters development good or bad.

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Reading from the letter sent to us when Daniel was diagnosed -Front-temporo-parietal arachnoid cyst. he also has asymmetrical enlargement of the ventricular system which is displaced over towards the left.

We are going to GOSH(Great Ormaond Street hospital) on friday 10th October. Daniel is having another scan done (CT).

Daniel's general temper varies from day to day. Any problem he faces he losses it. This has become increasingly worse over time and he can just explode for no reason.He also doesn't understand the consequences of his actions. According to the specialist this may not be a symptom of his condition but then again it may be.

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Hi, my name is Tracey and I have a 15yo son who has had headaches since 13 on & off. Doctor's finally decided to "look" into them(only when mum went sort of crazy in waiting room) Oh! Mum is also a nurse... Anyway, sent him for a CT- showed up a right temporal arachnoid cyst. Seen by Neurologist, cyst can't cause headaches!!Sent for MRI- showed some sort of tumor..Surgery to remove tumor(which they still don't know the histopathology of -but they are treating it as benign-so nice of them to treat it at all!!) MRI also showed severe sinus disease...Anyway, 13mths since surgery, headaches still happening.

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Hi,

I am so relieved to come across your site.  My husband is an organic farmer who is an underweight, chemically sensitive, 54 yr old workaholic out of control who's cyst has returned and these symptoms are driving me nuts. 

I'm wondering if there is anyway anyone could answer a question for me regarding my husband's arachnoid cyst.  It is golf ball sized, located between the 3rd and 4th ventricles. 

He had a craniotomy in June of '98 which resulted in compilications (a rejection of the bovine grafting material as well as a staph infection.) 

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Hello, my name is Jan. I was first diagnosed in May of 2005. But here is the kicker…I wasn’t diagnosed. I went into the ER for a crippling migraine headache. They did a CT scan of my head and it revealed 3 cysts. Two of them were reported in the radiologists report, the third was not. The two that were reported to the ER doctor were totally dismissed and not reported to me. The attending doctor gave me IV hydromorphone, and sent me on my merry way. Through the year I started experiencing profound exhaustion, crippling headaches that in turn created nausea and vomiting, vertigo, loss of balance that caused me to fall down the stairs three times now, short term memory loss, loss of concentration, mood swings and irritability, reduced libido, burning sensation in the brain, visual disturbances, disorientation, staring seizures, general dyspraxia, dysphasia, and an ongoing list of other things uncharacteristic for a normal me.

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Hello, my name is Jan. I was first diagnosed in May of 2005. But here is the kicker…I wasn’t diagnosed. I went into the ER for a crippling migraine headache. They did a CT scan of my head and it revealed 3 cysts. Two of them were reported in the radiologists report, the third was not. The two that were reported to the ER doctor were totally dismissed and not reported to me. The attending doctor gave me IV hydromorphone, and sent me on my merry way. Through the year I started experiencing profound exhaustion, crippling headaches that in turn created nausea and vomiting, vertigo, loss of balance that caused me to fall down the stairs three times now, short term memory loss, loss of concentration, mood swings and irritability, reduced libido, burning sensation in the brain, visual disturbances, disorientation, staring seizures, general dyspraxia, dysphasia, and an ongoing list of other things uncharacteristic for a normal me.

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Michelle keeps My Constricted Cranium: A Chiari Tale because Arachnoid Cysts can cause Chiari Malformations as well as Syringomyelia

 

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