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, of 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 who are 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 dx'ed.  I was sent to Mayo Clinic, where they wanted to do a Stereotactic Biopsy. I later heard from a patient that they used bovine pieces in his brain which made him MORE ill, an indication of very little actual understanding of this affliction. I also saw 9 other doctors before my mother did her own research and found an alternative procedure which seemed less invasive and had better long-term promise.

It took a few months but we found a doctor to do the surgery and it went from 4.5x3.3x2 cm to 2x2x2 cm. 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. When I wake in the morning, before knowing 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, or the floor. Other times, they are compliant enough to be molested as children, directed what to do, have issue with complex social situations, or cannot understand that some of the voices in their heads are a symptom. They are misdiagnosed with ADD, ADHD, Autism and given drugs that do not help with their issues since there is no protocol for dealing with an arachnoid cyst, nor is that indeed the true cause.

The desire to kill ourselves is very real 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.

We tend to demonstrate what could only be called psychic premonitions and experiences, I believe from these holes in our souls. There are things that I have predicted in my early years, conversations I have had with departed ones, feel the energy of speaking with the passed on. 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. As someone who has experienced this for over 2 decades and spoken many hours with thousands of sufferers, I can take you by the hands and share experiences that, even as a medical professional, would be quite shocking to 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 I was 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 rather 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 for the first time like 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, not being the brightest crayon in the box after he had had a motorcycle accident and ALSO obtained an Arachnoid cyst. I was able to see the beginning of an Arachnoid Cyst and watch how it slowly drove my husband mad. I began sleeping in my car because I could not leave because I thought I was finally getting the help I needed. I did not receive this help.

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 all seem to think that with this kind of treatment you shouldn't be able to feel what is going on with your Pia Mater, but I will tell you that you can.

Now I find this disturbing and cruel because when one 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 can feel the full effects 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 (over 2000 individuals) I know that, at the age of 3, children with arachnoid cysts are finally developed enough to be 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.

In closing, I have written this letter to you to urge you to give your patient more than the cursory 'once-over' that I received for many many years - the sort of delay that held up the real treatment that I so badly needed to lessen the incredible suffering I endured. 

 

Sincerely,

Catherine Clay

The Arachnoid Cyst Foundation