I haven't included many other people because there are over 2K people that also suffer as I do. Some better, some worse but we all have unilateral symptoms we share which most doctors are unaware.

 

To Whom It May Concern:

My name is Catherine Clay and I have a mission. "A Protocol, That's All" for those of us suffering with Arachnoid Cysts. I run The Arachnoid Cyst Foundation, gaining members slowly slipping into disabilities when there are measures you can take to avoid issues that plague us as we age.

I was 17 when I was dxed.  I was sent to Mayo (who wanted to do a Stereotactic Biopsy. Later I heard from a patient that they used bovine pieces in his brain which made him MORE ill), and 9 other doctors before my mother, suffering from Ovarian. Cancer for 18 years,  deicided that going through my nose was a better option than drilling into my brain.

It took a few months but we found a doctor to do the surgery and it went from 4.5x3.3x2 cm to 2x2x2. I suffered from the surgery scar, Arachnoiditis. Susan Smith stated in her paper on Arachnoiditis said that by having an Arachnoid Cyst it was indicative of Arachnoiditis. So the scars made it more apparent post op`                   .

I always felt this low seated burn since my cyst is sub-Arachnoid (as in sub-Arachnoid hemorrhage) which extended to the original dimensions going from my brain stem, extended into splitting my hypothalamus from my pituitary gland causing it to lean anteriorly, then adhered to my optic nerves. (In college I majored in Photography because I may be losing my sight but not my vision).

This is a pain I am aware of from the moment I go to sleep until I wake up knowing before I'm a woman, before I know I'm white, I know I'm in pain. A pain that in my experience only Fentora, as well as fentanyl patches, has eased.

As this disease starts children beat their heads against the wall, the floor. are compliant enough to be molested as children, directed what to do, have issue with complex social situations, cannot understand that some of the voices in their heads are those from their caregivers. They are misdiagnosed with ADD, ADHD, Autism and given drugs that do not help with their issues since there is no protocol.

The desire to kill ourselves as we age into teens and feel to the core of our being the cruelty of other children and make ourselves believe that whatever other people think about us is true. We start attempting suicide, start experimenting with drugs and the ones that give us relief are the ones that cause the biggest problems s

As we have psychic abilities from these holes in our souls. There are things that I have predicted in my early years, dead bodies I have called to me, feel the energy of speaking with the dead. None of us understand this kind of life because our families start to think horrid things about us and we start thinking the same things about ourselves because we don't understand what is happening to us. We can take you by the hands and tell you to think of something and we can give you feedback that would scare you.

As I aged into my 20s the pain slowly got worse. I had my neurologist tell me that the pain was "all in my head) as well as many neurosurgeons. I suffered so much that I attempted suicide many times and was so angry when I woke up because the pain is so unimaginable. That was my 20s. At 26 I decided to pretend I was healthy as my diseases took hold and became worse and worse.

I limped to California because I knew I could find doctors to treat me whereas in Kentucky I was not getting the care I needed. I was prescribed Inderal, flexerial, Imitrex, Fiercest but the best drug was phenergan at the time. But there was still the burn that would never cease. I took biofeedback which I still utilize.

When I was in my 30s was I finally able to get to Harbor UCLA I was prescribed Neurontin and as soon as it took effect I felt my skin meld to my bones because the inflammation was taken down. I was waiting for my next brain surgery, a fenestration. When I was finally able to see a neurosurgeon he was surprised it took 18 months to see him. I suffered and suffered like nobody could understand. So when the fenestration was done the fluid that was now over 32 years old was not taken out but released into my CNS and I then enjoyed the beauty of meningitis.

As I laid in the room trying to recover I could adjust the pressure with the instrument and it felt like for the first time life was easier. I could drop the pressure to nothing, which caused a headache and as I slowly let the pressure go up my headache started to go down.

I was given vancomycin, which I am allergic to, which caused another kind of pain. I was homeless at the time and was stuck in the hospital for 3 weeks until the bacterial meningitis was cleared.

I was homeless because my husband was not the brightest crayon in the box because he had had a donor cycle accident and ALSO obtained an Arachnoid cyst. Which after saying "I just married her for the green card" in court I felt he deserved it because the suffering it caused... I was able to see the birth of an Arachnoid Cyst and watch how it slowly drove my husband mad. Good times, sleeping in my car because I could not leave because I thought I was finally getting the help I needed which I did not.

I feel the titanium mesh from the fenestration behind my eye so every time I move my eye that Arachnoiditis moves with the scar. Neurosurgeons seem to think that this kind of treatment you shouldn't be able to feel what is going on with your Pia Mater.

Now I find this disturbing and cruel because when on cell wall is put on a plant you can watch it die from the outside in. For people with Arachnoid Cysts it's pre-cancer as you feel the gangrene take effect as early as 3. It's the brain tumor (ICD-10-CM Diagnosis Code G93.0) you get to age with.

From speaking with so many people with this disease I know that 3 year olds finally are able to articulate to their mothers "Mommy, I want to kill myself) due to the pressure as this is a long-term, degenerative, auto-immune, CNS disease with no cure, no research and not enough awareness for doctors to understand the complexity of this syndrome.