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Posted by Eva on August 16, 2000 at 09:52:10:

In Reply to: Re: EDS due to excessive melatonin/pineal cyst ? posted by Desiree on August 15, 2000 at 16:14:01:

I've found in the past year that they don't "tell" me anything about my condition. All that I know, I've learned by requesting my medical reports from the radiologist that initially reads the MRI and from all of the tumor surgeons that I see. After getting the reports, it takes A LOT of work to translate them into something that is useful, but with the help of the internet and a friend that's in med school I've managed to translate the following:

The "mass" is a little larger than a cubic cm and it appears to be applying some pressure to an area of my brain. (I say mass because it has not been definitely determined to be a cyst or tumor.) Of course the doctors says that migraines aren't symptomatic of this "mass", but the doctors have found symptoms that directly link to the pineal gland. Although they don't directly inform me of these symptoms, they were written up in my reports. I have clonus in my right ankle, overly reactive reflexes, and Hoffman's Sign bilaterally. (All of these are reflex disorders.)

My advice to everyone: GET YOUR MEDICAL REPORTS and go through them and find out for yourself what is really going on. I've read that removing cysts or tumors from this region of the brain used to be tricky. This is likely why most doctors don't suggest surgery. How can we find out if we really need to have the surgery? It's a frustrating battle.

Sorry for the long answer to a short question, but if there is ANYTHING you want to know, I'm here.

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