Our Stories

I have a Middle Cranial Arachnoid Cyst located in the left temporal region. I hear a pulsing sound in my right ear, suffer from fatigue, frequent headaches, chronic pain in my neck, back, hips, legs and joints that interferes with my life on a daily basis. I feel stiff all of the time, get tingling and electric like shocks throughout my entire body, my vision is getting more blurry, the inability to concentrate is affecting my cognitive abilities and my symptoms are getting worse as time goes on.

Tests, tests and more tests. Ultrasound Doppler of the carotid arteries was normal. The first ENT I saw ordered an MRI of my brain which revealed no glomus tumor (a common cause of pulsatile tinnitus.) He neglected to even inform me about the Arachnoid Cyst. I didn't find out about it until I went to another ENT who reviewed the MRI almost a year later because the sound was getting louder. Brain MRA was normal and an angiogram of my brain showed no vascular deformations (another common cause of pulsatile tinnitus.) This procedure was not only an uncomfortable and an extremely grueling experience but it made my symptoms horrifically worse and it caused my scalp to sting severely for more than a week. I have also been tested for rheumatoid arthritis, thyroid disease, lymes disease, complete bloodwork/urinalysis, bone density test, chest x-ray and pulmonary function test - all normal.

Neurologists and neurosurgeons have told me that the Arachnoid Cyst is congenitaland "asymptomatic" because it is not causing displacement of the brain or a midline shift.

I am disgusted with feeling this way and I want help. After being on Elavil for thirty days and having no results other than becoming even more fatigued, I decided to see a rheumetologist.

My bloodwork came back positive for Fibromyalgia and Chronic Fatigue Syndromes which came as no surprise as many of us with an Arachnoid Cyst are told we have one or both of these conditions.

In an attempt to control the level of pain I have been prescribed Flexeril, Ultram, Vioxx and Prednisone, none of which have offered satisfactory releif.

Fibromyalgia, an auto-immune disease is neurotransmitter dysfunction for which there has been little research. What is known about Fibromyalgia is that alterations in the neurotransmitter regulation is caused by abnormalities in the hormones and chemicals produced by the brain that are present in the cerebral spinal fluid.

The arachnoid membrane is where the cerebral spinal fluid circulates to bathe the brain and is also responsible for removing the waste that is created by the brain. Substance which is a pain neurotransmitter has been found to be elevated in the spinal fulid of patients with Fibromyalgia.

The myofascia surrounding the muscles has been found to be the major cause of pain in Fibromyalgia.

It loses its elastic properties and hardens which prevents the neurotransmitters from reaching hte motor neurons. The sensory neurons become so hyper-sensitive that any sensory stimulation will ignite a fury of neuronal activity which transmits a message of pain to the brain. The nervous system is constantly receiving pain signals
indicating that there is trauma occuring to the body, when infact it is not.

This activates various chemicals from the brain in the form of defense mechanisims which causes the tightinenig of muscles, ligaments and tendons. Since alterations in the cerebral spinal fluid which is contained in the arachnoid membrane is known to be a cause of Fibromyalgia a neurotransmitter dysfunction, I don't understand why the majority of medical providers refuse to even consider having a cyst within the

Arachnoid membrane is the culprit of our symptoms. Perhaps it is because there is little research concerning the effects of Arachnoid Cysts, leaving so many of us with similar symptoms hopeless and victims of our own demise.

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Some people just send snippets so I put them all together here.

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DOCTORS

The Arachnoid Cyst Foundation
c/o Catherine Clay
PO Box 66820
Los Angeles, Ca 90066
1-(800)-493-5022
11am-10pm PST Weekdays
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Please read through this site before calling as your answers very well could be here already.
No we do not have printed materials, you will have to print out this site.
Amy and Catherine are giving telephone suppport at this time. Amy for emotional support and Catherine for MRIs.
If you didn't find the info you need on this site or arachonidcyst.net please do call.
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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!