<-- Choose a category and a story name on the left.
I The Arachnoid Cyst Foundation was rattling around in my head when I met Samantha J. Scolamiero in 1998 after my mother died and she said I should start some group for my type of brain tumor. I discovered braintrust.org and Sama and I both had brain surgery the same year. The website took off in 2003. Some of these pages are so outdated I apologize.
Please donate to our foundation if you have found any useful information please donate what you can so that will help us print brochures and discover other methods of assisting you with newsletters? Interviews?
If you are a parent you will NOT be happy with the long term stories of suffering. I never in my wildest dreams could fathom that there were so many people allowed to suffer on the planet from one horrific ailment that can cause even worse diseases. There is no funding (if you can help me get that going then please let me know) so what you see here is the love of everyone suffering desiring to get answers and to offer you support for what you are going through, answer questions and point you in the right direction to get the care you need.
Since 1989 I've spent years searching for the perfect doctor I have come up with very few names as experts that have done many Arachnoid Cyst surgeries with high success rates and telling you why you are having some of the problems you do which is dealt with a protocol if arachnoid cyst operation or not? Physical Therapy? Pain Management? .
Please e-mail me if you would like assistance finding a doctor that is right for you. PLEASE help us grow by giving yourself a voice or even better by keeping a journal or post in the forum that would help MORE people. There are constant requests for materials and I can't afford to put all the information together, consult and advocate unless you can assist us by helping us grow, print materials for a newsletter, fundraising, or do research or write congress. If you find a link to more research or can help in any way please do please e-mail me.
They are real people's accounts of their every day existence. It has taken some people many attempts to write their story. Because we look "normal" people can not see that there is subtle damage done with every heart beat as we age. Those that love you truly know from what they observe what is wrong with you and how your temper tantrums run, how your frustration for understanding is viewed as a lack of paying attention and going off in the middle of a sentence or repeating yourself repeatedly displays how your thinking keeps spinning in a cycle and can leave you stuck in a rage for days because of the pressure in your head.
The most heart breaking stories are of the children, for which I dedicate my life to trying to establish a protocol, putting together something that you can understand and ways that I have learned how to live so that you get the most out of life. Hearing of a baby lying on the floor hitting his head screaming "OW! OW! OW!" crushes me. No matter what I go though I keep thinking of the little ones that don't know how to articulate what they are going through because I was born with mine too. There are 2 classifications of these rare brain tumors, arachnoid and sub-arachnoid. Sub-arachnoid sits on the level that feeds the blood to the brain and causes a slew of other problems as it's closer to the pia mater.
you have a cyst on the left side of your brain you likely to be a pussy
cat and you might have problems with your heart.
If your cyst is in the center of your brain you will have problems with your pituitary gland, vision, mobility and be sensitive to temperature and have explosive temper tantrums. There are also vision problems that you can have as well as endocrine problems.
When the cyst is in the posterior fossa you have GOT to get medical attention from QUALIFIED Physicians. No ifs, ands or buts. Posterior fossa cysts are one of the two most damaging kinds because of the structures underneath such as the cerebellum and brain stem and can cause other diseases.
You need a team of people to help you though HOWEVER YOU ARE YOUR OWN BEST ADVOCATE
(I will call your docs if you need help). A good therapist that has
hopefully suffered from trauma, a neurologist that has other AC
patients, a pain specialist, a neurosurgeon that is a specialists such as pituitary neurosurgeons, a
physical therapist to ease the pain of discomfort, a rheumatologist, an
endocrinologist to monitor your hormone levels (we need this data for
all of us), and a great GP.
This is all the info I have surmised from reading your stories and talking to over 150 patients on the phone. Please include your number when you write so I can speak with you.
This is not to take the place of medical advice but here for you to have the ammo you need to fight for your life and for you to understand that YOU ARE NOT ALONE. We hope that you will take from this site understanding for all of your options be that waiting for you cyst to become symptomatic* (and it will, sad to say, I promise you that because I've never heard of someone getting "better" from leaving these things alone), having a shunt isn't a great idea because the protein clogs the tubs so you need "adjustments" but once you get past 7 cm I would consider this option, aspiration (key-hole surgery which is just a band-aid surgery and when you need surgery you only want it once), fenestration, excision or LASER removal (THE ONLY SURGERIES RECOMMENDED), or the latest news in drugs that will help you through the day. GET TO A PAIN DOCTOR IF YOU SUFFER FROM PAIN BECAUSE A NEUROLOGIST WON'T GIVE YOU NARCOTICS. Just explain that you have a cyst on the root of your nervous system and you will get the drugs so the first thought in the morning isn't "I can't stand the pain, I want to die."
After being paralyzed, myself, from the neck down for 4 hours I decided to try to make you realize that if you don't have these things removed from your brain you will eventually suffer long term central nervous system damage which will cause a slew of other problems and can cause you new diseases such as Syringomyelia, a demylenating disease such as Multiple Sclerosis, Psychosis, Dementia, adhesive arachnoiditis syndrome, diabetes, liver and kidney and other connective tissue disorders. YOU CAN DIE IN SURGERY. We lost Ang. When all people are diagnosed with any horrific illness it took a lot of info before the medical profession recognized how to treat the symptoms. We are all we have got. Help me with this protocol. (sorry there are painful truths that need to be faced)
I need all of you to send me your info so I can finish up this book!!! Perferrably on youtube.com We are all suffering and if our voices are not heard who cares? Your family won't write congress because they don't understand. You look perfectly normal. The only thing wrong is that burning sensation that feels like your worst sunburn that sits on your muscles and bones that never goes away.
Don't you wish you were a dog? Why if I were a dog then maybe someone would start to take me seriously. Like understating there are MICRO ABRASIONS in MY ARACHNOID MEMBRANE that CAUSE LESIONS from the Pressure. Take that to your doctor. It's nice to know some animals get better treatment than humans do.
"If the dog is moving its head a lot the cranial cervical region is especially effected in these dogs because it's a highly constrained area which is subject to activity which causes micro traumas which in turn causes inflammation which in turn causes the adhesions and hence enlargement of the sub-arachnoid space which might be involved in the creation of the cyst."
It therefore seems reasonable, at the present state of knowledge and until further studies clarify the origin and natural history of these cysts, to treat them as early as possible in order to prevent gross developmental deficits.
Do you care about your life? Did you know we are NOT on the list for new law concerning the benign brain tumor act? Have you bothered to write your congress wo/man? If YOU don't care about yourself anymore how about those kiddies? Do you think it's fair for them to have to suffer or walk through life the way you have and hear "it's all in your head"? Don't they deserve to be educated about their disease? Do you think they should have the honor of being a "hypochondriac" like you have been ? If you don't care, who will?
Inability to sleep at night
Pain cause by inflammation (Arachnoiditis?)
Memory, Concentation and Thinking problems
Intracranial Hypertension (too much cerebreal spinal fluid)
Easy to bruise, hard to heal
Problems with strange auto immune disorders (getting shingles or mono at early ages)
Visual disturbances (lightening, electric fish)
Sensitivity to light and bad smells
Inability to comprehend complex social situations
Tinnitus- Whooshing sounds due to HIP (High Intracranial Pressure)
Numbness and tingling mixed with weakness of limbs(Paresthesia)
Memory problems (did I already say that?)
Short Term Memory problem
Over Stimulation is a problem (if your AC child is acting out this is a reason. Calm them down by taking them aside and just talking to them or read to them so they can calm down again.)
Sensitivity to Noise and Light
Hormone imbalances can cause:
Liver enzymes to be elevated
(such as low Coritsol or too much Prolactin not enough Growth Horomone)
Overweight due to medication (a glutten free diet will change this)
Most of all I am trying to get you to understand that you need to KNOW YOUR RIGHTS as a patient. Just because things are fine now doesn't mean you won't suffer MORE in the future. Just because a doctor doesn't understand what to do with you doesn't mean he has to be mean to you because he doesn't know or can't recognize this complex syndrome we all suffer from. Don't pay him if you disagree with his advice and tell him why you refuse to pay. If you can take a pair of shoes back because you didn't like the color you shouldn't have to pay for some jerk's opinion. The only way we can make them understand the severity of our disease is to hurt them in the pocketbook. If you aren't getting treatment why should they get paid?