Hello, my name is Catherine Clay.
These are my personal views and they are not popular but it's reality. Reality is a tricky deal because this is painful. This disease is heart on your heart. Our web designer, Joshua J. Harris, died on 4/20. He never felt like he was enough. That he couldn't make it all better and I was just slipping into the void.
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<p><a href="https://vimeo.com/229357130">arachnoid cysts and pregnancy</a> from <a href="https://vimeo.com/user46639586">Catherine Clay</a> on <a href="https://vimeo.com">Vimeo</a>.</p>
I am a woman living with a fenestrated subarachnoid cyst located in between my optic nerves pushing on the pituitary stalk in the suprasella region of my brain. I have had 2 brain surgeries and I started this web site over a year ago before my last surgery because I could never find anything out there, I was tired of feeling messed up and alone and I never want my worst enemy to know what true suffering is.
I am now looking at my third brain surgery to stave off permanent blindness. That's why I became a photographer. I wanted people to see the beauty of life through my eyes. I am the second person with a cyst on my pituitary gland that has another disease caused by this cyst. If you have a cyst in this area RUN to an endocrinologist and have you hormones checked. I have hyperpituitarism. Kevin also has had to take medications his entire life. One of the babes is on hormones because a bad doctor cut his pituitary stalk.
This disease does not do you any favors so education is the only key to fighting this battle that I have been fighting for 15 years. An arachnoid cyst is a SYMPTOM of more severe diseases. It is NOT "just a cyst" and even though "it's not cancer" it causes you long term Central Nervous System damage.
You have GOT to get rid of this thing, period, especially if you are a child because you can RECOVER much easier although you HAVE GOT to go to a neurosurgeon that has done the surgery countless times or you can end up with even more severe problems.
This is my compelling experience which can be backed up with scientific data and results from my last 25 MRIs. The first time I had brain surgery at 18 my brain bounced into the space where the cyst was occupying when it was aspirated. There was enough fluid from the plum size to make a Chilean grape. At 30 there was so much damage from typical CSF flow with each heart beat that they cyst has cemented a hole the size of that grape permanently in my head . I asked Dr. Kelly when that was going to bounce back and he told me it wouldn't. It's destroyed the structures supporting my brain and the architecture around my brain stem to cause my pituitary gland to malfunction and I suspect cause Syringomyelia since I have boughts where I lose sensation in my hands and feet and have already been paralyzed because of it once.
GET RID OF IT. You will get Surgical Arachnoiditis but it's better to live without Intracranial hypertension which makes you a little crazy and the long term damage it does to your mind & body.
When I get a new story it always makes me cry because none of us have had superior care and comfort in knowing how we are going to age with our disease because there are no long term studies.
After pouring my heart and soul into gathering information I have made a few conclusions.
This can be hereditary. I'm sorry folks but in the slim chance of you EVEN HAVING ("they" say we are 1% of all brain tumors diagnosed) an Arachnoid Cyst there is still a slim chance that someone you love can have one too. If you want to check the gene it's on the 14th chromosome.
96% of our fathers were in the military.
2 mothers were on fertility drugs. I would like to discover what you all were on. (I think my mom had ovarian cancer when my sister and I were in utro since we both had central nervous system disease)
These things are like cancer, It doesn't matter what color you are or your sex.
A little more about me as a person before you judge me:
My family started the Republican party. We helped buy Alaska and Compromised Missouri. I don't know how many generations we have been here but I come from a long line of communicators, law makers and fiery Kentuckians.
I live in Los Angeles
I speak Russian Fluently
I have been through 14 countries (which is why I tell you not to fly)
I am a photographer
I am a webmaster
I am working a full time job I love
I have participated in several brain tumor conferences
One of my best friends is Samantha J Scolamiero
I'm hoping that if you understand a little more about ME as a person you will understand how I have come to various theories of how and why we get so sick. I suck at communicating because I am passionate and I am very honest. If you are newly diagnosed I'm sorry this disease is a lot worse than your doctors are telling you depending on where your cyst sits.
I am going through physical therapy and highly recommend that everyone get up on that if you have this disease. It really helps you train your muscles and dealing. If you see words underlined that means there is another link.
If you suffer from pain you need to talk to your doctor about getting on a regiment of drugs:
Neurontin helps with the electric shocks and pins and needles
B6 will help you if you are in the early stages of this disease
Vicodin will help with the pain
If you are in severe enough pain that it hurts to get out of bed go to a pain clinic and get Duragesic
If you are sick to your stomach all the time Marinol helps a lot
Maybe you recognize some of these symptoms:
Easy to bruise, hard to heal
Visual disturbances (lightening, electric fish)
Sensitivity to light and bad smells
Whooshing sounds due to HIP (High Intracranial Pressure)
Numbness and tingling
Problems thinking and concentrating
Hormone imbalances can cause:
(such as low Coritsol or too much Prolactin)
Overweight due to medication