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Arachnoid Cyst Syndrome is the long term degenerative disease that can cause other diseases (such as hyperpituitarism, Syringomyelia) depending on the location of your cyst as the cyst itself serves as a symptom of other diseases due to Intercranial Hypertension. It is not an "official" disease yet because there is not enough information or long term studies done. It's something we all suffer from that causes weakness, paralysis and sometimes pain. There are great strides being made in Veterinary medicine that will eventually catch up to humans.

You will have to have a team of doctors to take care of you. An endocrinologist, a pain doctor, countless neurologists, many neurosurgeons, a psychiatrist or psychologist, The only way we can start fighting ignorance is by educating the doctors treating you and becoming your own advocate.

There are no long term studies. There is nothing out there but this site and I need everyone to help me out by either submitting e-mailing me your stories or sending me links.

We have symptoms which present problems that resemble other disease such as Chronic Fatigue Syndrome or Fibromylegia. Don't kid yourself you do not have any of these other diseases, you have ARACHNOD CYST SYNDROME. It's a combination of everything because of the compression of the nerve roots. This is why you have a VIABLE reason why you have the sensations you have due to a high pressure blockage located in the highest pressure independent system of your body.

All afflictions of the mengenes act differently. They don't know what this one does because there is not enough research. We have to be active to get something done. Please start attending the Brain Tumor Conferences in your area so that you have a voice. And if you won't do it for you do it for the kids because it's not fair for them to have to suffer like we do from humiliation from doctors, mental anguish for not understanding what is happening to their bodies. I can't stand that anyone else suffers like this.

I have been thinking about this a lot latey and think about the stages:

I read a paper where all kids were automatically diagnosed with ADHD and we can suffer from psychotic episodes.

Stage I 0-10 years

Information from parents needs to be sent to me as there is not enough of a cohesive body of evidence. These are theories which I have gathered from experiences and listening to you. Children tend to have temper tantrums. The only thing worse are teens. To calm an AC child down get their favorite toy (I still sleep with my grover) and give it to them to cuddle. That and being talked kindly to and caressing will try to soothe what is being irritated. Maybe they have too much CSF putting pressure on their brain. They can't tell you this. You can only see it through their actions and behavior. I know once upon a time when I felt that bad I drank some cough syrup and it seemed to help soothe my irritated membrane. POSITIVE reinforcent is key. Don't CUSS around these kids unless you want them to sounds like me (and if you have ever talked to me on the phone you'll have to forgive me I was raised by my father and it shows). Developmental delays and being extremely gifted are back handed compliments. Work out the delays to balance the gifts so the child can learn better coping skills.

Inabilibty to sleep begins in childhood.

Stage II10-20 years

Watch out for they'll chew you up.

AC teens are volitile, confused, and have hard times relating to others. Things have to go their way or they blow their tops. Some concepts are easy to understand where as cleaning and other things might not make sense. If you have hyper pitutarism you can be nutty. I do not advise anyone under the age of 18 (especially if you were diagnosed early) to engage in use of hardcore drugs like cocaine or acid or mushrooms as they cause you to have further long term damage. When I was taught about sex ed from Planned parenthood they told us that our bodies aren't fully formed until we are 18 so if you want to increase your chances of other diseases be careful about your sexual habits.

Numbness in the hands and feet begin in this stage as does pain. Depression can happen and I recommend that a patient receives mental health to learn how to cope with the ups and downs of life without throwing yourself into the storm so you can get the maxmium benefit with minimum effort.

Stage III 20-30

Danger Will Robinson.

This is when you start to show signs of intercrainal hypertension and act nutty if you have not received the proper medical treatment.

Stage IV 30-40

Pain, confusion, forgetfullness, numbness, tingling, paralysis.

Stage V 40-50

 

French Version

If you need to talk call 323-908-3923 (FROM 10 AM TO 10 PM PST... Please do not call me in the middle of the night unless it's a crisis as it upsets me greatly) or e-mail . Someone will get back with you. Please include your phone number as that is the fastest way to get back to you.