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You have had a Cat Scan or an MRI. This is the first diagnostic tool to discovering your AC. They need to do contrast to see if the fluid is clear and not a tumor.

You should request to have a spinal tap to see how high the pressure in your brain is if you feel you are already having pressure damage. This should be a tool they use in order to move you along in getting surgery. A lot of doctors will not order this test. Instead they will run an angiogram (DO NOT DO THIS TEST!), which like with migraine meds, is totally useless and causes more pain and damage to your system. Having a spinal tap is like having an epidural.

EKG and EEGs are typically normal.

The Questions you want to ask your doctor so you don't waste your time or his are:

Have you ever treated anyone with an AC before? (this will save you hours)

Obviously if you are playing Russian Roulette if your doctor has never treated anyone with this disease. If you live out in the boonies you should call to the biggest city to find a good doctor. They will all be nice to you but they might not know which coarse of treatment to take. They don't live with you. They don't know your daily habits and typically don't care to. They don't know which symptoms warrant treatment and most Neurologist want you to leave them alone .

Neurologists and Neurosurgeons are different. If you are being seen by a neurosurgeon then that means you are already being evaluated for brain surgery. These doctors don't always work well together and often don't provide you with understanding your illness.

Which symptoms are considered to warrant treatment?

You should know if you are not comfortable with your body. If the pressure in your head is too great for you to function at a normal level in order to survive the marathon then you need some treatment.

You might be showing symptoms and not even know it. You might be acting goofy, you can't sleep at night, you can be forgetting things all the time. You rest and never have energy. If you are not comfortable living in your body you have to make your own decision if surgery is the answer for you. There is a risk but always keep in mind there are no long term studies and the fact of the matter is that you do not recover from surgery when you are younger so easy.

How are you doing to treat my cyst?

If a doctor wants to do an aspiration (key hole) surgery you need to walk out the door. Fenestration or Marsupialization are the best forms of surgery and seem to be the most enduring. When you just have an aspiration they are only taking pressure off your brain for a limited time because if the cyst is not communicating or broken then it's blocking CSF from flowing which can cause you long term CNS damage.

Some of us don't have a choice and have to have shunts put in our cysts. This causes a slew of new and different problem in which I am not accustomed and do not have conviction in writing about.

What are the benefits of surgery?

Do I have arachnoiditis?

What are the problems that can occur? How will my body change after surgery?

What are the long term treatments?

What are my choices in therapy?

Should I be seeing a physical and emotional therapist?

What are the best foods to eat for my problems?

Am I in danger of developing other diseases because of this one?

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.