Our Stories

These are the stories I've been collecting since 2003. Hopefully we'll make this whole site more streamlined so people can add their own stories but for all intents and purposes this was the original arachnoidcysts.org.

My name is Marvin, It's a long story about my condition but I'll try to be short yet give you as much in detail as i can.

I'm a Service connected disabled veteran, 36 years old and I've been diagnosed with interverbral disc syndrome for almost 10 years from and injury that happened while in the Army.

For the last five or so years my condition has manifested to where my legs have gotten weak and the complications with my back are significantly worse I'm always sore in my lower back my legs ache and just this year (Feb.) I had a Neuro Exam and the doctor diagnosed me with having paralysis of the sciatic nerve (both legs) with decreased pin sensation.

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I went on the web this morning in hoping to find some info, that I could bring with me to court, to show the judge in my social security disability case that what I have is disabling, being they have denied me benefits twice. My hearing is set up for October 13, 2004 at 9:00 AM, and I am scared shit, knowing this man has the power to control my life. Anyway that’s how I came across your site.

I was diagnosed with an Arachnoid Cyst (Bastard) in my thoracic spine from about the T-4 to the T-9 level, this thing was 8 inches, and it has significantly displaced my spinal cord, so much so that in the MRI’S it’s barely visible. It was a miracle they found after years of suffering, thinking I had lyme disease, fribomyalgia, suffering with migraines, arthritis, and to many others hypochondria(all in my head, my ass). So I had surgery to remove this thing on February 21, 2004(How can I forget) , they successfully removed it and 5 bones along with, they had to cut out the spinous process from the T-3 to the T-8, in order to get this monster out.

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I'm a 46 year old female who in 1995 was diagnosed with a Sub Arachnoid cyst after I started having seizures again after having been seizure free for years. I had never had any kind of Cat scan MRI,Etc until 1995.

At that time it was egg size. I was told I was born with the cyst.That it was caused by a small stroke I had before I was born. I never asked anyone did the location have anything to do with what may have caused the cyst.

Even though I had problems for years.

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My son Kyser was born 12/11/14. We found in early pregancy he had an arachniod cyst on his brain. The doctors told me it was common and don't worry about it, it's something that can be fixed they said. Oh boy where those doctors wrong. The Archniod cyst was over 3 inches big it started so early in pregnancy that his brain never was able to devolep properly some of kyser's brain was missing. And the part of the brain that they could see was squished and spread out. The cyst caused hydrocephalus,seizure disorder,loss of brain function. Kyser also has a damaged hypothalamus due to the cyst the hypothalamus controls hormorns,growth,temperature and a ton more. The cyst is putting pressure on the brain stem and pushing it over because of this he can no longer suck,swallow or breath properly. Every smile,coo and movment he does is a spasm in his brain. He spent his first 3 months of life in the hospital he is currently home on hospice. Kyser will eventually gain his Angel wings due to this horrible medical condition the Arachniod cyst . They doctors can not do anything with the cyst because its so large if they mess with it he will pass away sooner. We need to stand together and find a cure!

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Frankie was dxed in April of 2014, just a month ago. Here's his story.

 

 

 

 

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Im 17yr old girl when I was in 8th grade

I had cronic headaces for 2 months straight the doctors told me that it was just my allergies...Sooo one day I couldnt take it any more and I just blacked out at home... I was taken to the childrens hospital and there I was told that I had a ruptured arachnoid cyst.

It was right above my right ear near the top of my head. They had given me steroids for the pain which had bad weight affects and they had schedule an appointment for surgery...

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is 12 years old, the youngest of 3.  My first son Michael died of non hodgkin's lymphoma 14 years ago when he was 4.  Meagan was born just short of 2 years of losing Michael.
 
Anyway, Meg has been in sever crippling bouts of pain for over 2 years now.  At first I thought it might hormonal just like many of you probably thought.  But soon into these horrific ordeals I realized that this was something bad.  I pushed to get her a MRI.  That's when they came back with Arachnoid Cyst, hers is 4.9cmx4.9cmx3cm, its pushing the left cerebellum to the front of her head.  Its also eroding the back of the inside of her skull where it sits.

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I Promise I'm going to send my story....I just haven't had the time.  His name is Hoobie.  He's my grandson. 
 
He's five now - was 2 when the cyst was discovered.

He was seeing spider webs, and wanted the sun to go down and the lights turned off - said he had a worm in his head.  He began wiping his forehead constantly.

His pediatrician ordered an MRI as a second thought.

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I've been looking at your website on and off for around 9 months.  I have 7 year old twins - one of which has an AC and the other has down syndrome (no AC).  How did we find out..  my son started to drag his right leg when running and his right foot's position was way to the right.  The orthopedist thought he might have a tethered spinal cord... well, we found out about the arachnoid cyst through the full spinal MRI.
 
As mentioned in the subject, his AC is located in the most popular place and it's about the size of a plum.
It explains so much that we've been through with him... yet, it's still hard to believe that all the below symptoms can be contributed to the cyst.  I know that you wanted a list of symptoms so here goes:

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is 7 years old. 

He was diagnosed with a "brain tumor" in Feb 2002. 

Located in the center of the brain surrounding the pituitary stalk.  He had surgery the same month for removal of this "tumor"--pathology came back inconclusive and his "tumor" was called and arachnoid cyst.

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