When you are full of despair and need someone just to listen and you want to hear I've got the ear. But I need HELP too to build this fledgling foundation and I NEED to help you navigate through this nightmare of having a brain tumor nobody wants to acknowledge. You won't get an answering machine on Sundays, it's me! Please be aware of the time difference and respect the hours since I have a 5 yr old. Right now where I live it is about: 05:38 am. So DON'T CALL ME NOW!


Your donations will help support our cause. We are waiting for the last piece to finish up the complete non profit status but if you need a number then I have one!.

just visited your web site for the first time; my nephew told me about it, as he has an arachnoid cyst.  I read down the list of symptoms, and found it to be both enlightening and depressing, as I have 25 of those symptoms that I live with each and every day.

I learned only a month or so ago that I even HAVE a cyst, and the neurologist assured me that it’s nothing to worry about, people are just born with them and they don’t cause any problems.  On the MRI film he showed me, it was about the size of a quarter, and of course I have no way of knowing how that relates to the actual size of it.

In my lifetime, I have probably had 10-12 MRI’s of my head, and this is the first time anyone ever even mentioned the cyst to me!!!  Now, it seems to me that if I was born with it, other docs MUST have seen it somewhere along the way.  This current doc recommends NO treatment as it is benign (how does he know without testing?), and as he said, “People live with these all the time and never know they even have them.”

Of course they never know ‘cause their docs don’t tell them!  They live as I have, with emotional problems (do you KNOW how much psychiatrists charge?), back and neck pain, migraine (?) headaches, tremors, numbness & tingling in the legs, arms, and buttocks, dizziness – feeling like the world is tilting to the left, having ‘waves’ of dizziness that always come from the right and seem to be trying to push them down on their left side, whirring, ringing in the ears, waking up three to five times a night, fighting weight problems constantly (and losing), depression, seeing wiggly black things in front of their eyes all the time, sore hands and fingers, loss of strength, forgetting names, dates, appointments (write them in the organizer, or put them on email, then forget to check), I have IBS, Chron’s disease, colitis, diverticulosis and diverticulitis, I frequently get blisters on the lining of my stomach (the docs reassure me that they’re NOT ulcers as they come and go) and, absolutely no interest in sex!

There, you have a brief story of how I live my life every day and have done so for more years than I can remember.  I can’t say conclusively that the newly ‘found’ cyst is to blame, but I do know that all of these symptoms and more are progressively getting more severe.  I currently see a General Practitioner, a Psychiatrist, a Psychologist, a Neurologist, a Stomach doc, and often an Allergist.  Even with two insurances, my husband’s and mine, our medical/pharmacy expenses are comparable with the national debt!!!  The list of medications I take on a daily basis include two antidepressants, one hormone pill, thyroid medication, two stomach medications, cholesterol medication, water-retention medication, plus migraine and asthma medications as needed!

Now, I’m not saying that any of these things is related to the cyst, but I know the cyst is there, and I definitely have the symptoms…..

I know none of you has a ‘magic wand’ to make me well, and it feels so good knowing that I’m NOT crazy, that my symptoms really do mean something, AND that there are others I can talk to about this!!!  Thank you for being there……

 

Lavona