My daughter, Katie was born July 11, 1994. She has multiple diagnosis: Fragile X Syndrome (an inherited genetic disorder), an Arachnoid Cyst (left temporal lobe) and Cyclic Vomiting Syndrome.

Katie is a real delight. She is a true blessing to our family. She is thoughtful and kind. Katie is remarkably considerate and caring for her age. This year will mark Katie's fifth year in Girl Scouts and second year in 4-H. She regularly attends youth group and Pioneer Club. Katie enjoys books, computers, scootering, and drawing.

Katie's Cyst was discovered during a MRI scan, which was being done for research purposes. She was seven at the time. When the doctor who was conducting the study called me aside, I immediately knew that something was wrong. Katie had been very ill in the months proceeding the MRI scan. We couldn't find a cause for her repeated episodes of vomiting, severe headaches and extreme lethargy.

She had been hospitalized each time for dehydration and was rapidly losing weight. The doctor's words were icy and cold. I remember all that he said, but only the first few words had meaning.

I went into shock. I felt so numb. I was so very frightened for her.

He assured me that Arachnoid Cysts are benign but she should be evaluated by a neurosurgeon. This began the journey down a long difficult road of doctors and specialists.

Katie was seen by a pediatric neurosurgeon who sent in his intern to do most of the work. He then whisked in, reported that this was an average Arachnoid Cyst, that we had nothing to worry about, and to come back in a year.

I questioned him about Katie's symptoms. He was 100% confident that these cysts do not cause symptoms. He applied textbook knowledge to my very real child who was dealing with very real symptoms. I felt like I had been fluffed off. Like my daughter's symptoms were not worth his consideration.

I have since taken her to various other specialists. In their collaborative efforts they have decided that the vomiting was caused by Cyclic Vomiting Syndrome (a variant form of migraines). I am always amazed at how many of the accounts I read that symptomatic patients are given an additional diagnosis and told that it is not at all associated with this cyst. At this point, we are watching her and waiting. It is difficult to do.

Not ever knowing with each symptom whether it's the cyst or something else. Katie has been treated for Major Depression since the age of five. Her AC displaces/reshapes the amygdala and hippocampus. These structures are related to emotional regulation.

I believe that it contributes to the mood disorder that she has had all these years.

Katie is on medication to control the vomiting episodes. It has helped for the most part. She now can go a few months without issues and she has gained weight. She continues to have headaches.

Katie has mild muscle weakness and what seems to be neuropathy on the right side of her body. I firmly believe that some of her symptoms are caused by the Cyst in her brain. I read of so many of the symptoms that others with AC share in common. How can it be that they have very similar symptoms - come from every age group and background - all have AC's, but the symptoms are unrelated?! Where is the research to back up this "textbook theory" that our doctors like to apply to their AC patients?!

I hope that Katie will grow up to be healthy and strong. I hope that she will be happy and know each day how much she is loved and cared for. My dream for her is that she will have a family and a career if she so chooses.

My fear is that she will always have to deal with illness and symptoms. I worry that she will have to struggle with doctors who will tell her that there is nothing wrong with her and that her symptoms are unrelated.

In conclusion, I think that we need more interest from the medical community. We need more research into the causes of arachnoid cysts and their symptoms. We also need awareness - we need these doctors to really take this condition and their patients seriously!

Our doctors need to treat us as individuals not just based on what they learned in school. I believe that awareness is the key. As long as we have people like Catherine on our side shouting "Hey - this is important!!!" we will move ahead and eventually see change in the medical community.

Dawn – very proud mother of Katie, now 9

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DOCTORS

The Arachnoid Cyst Foundation
c/o Catherine Clay
PO Box 66820
Los Angeles, Ca 90066
1-(800)-493-5022
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This site was designed and is maintained by Miss Catherine Clay She has recently had a child and is not the best communicator at this time. Please be patient and call or e-mail back!