The Arachnoid Cyst Foundation

PLEASE show you really give a fuck and donate all those extra bucks! your time, enegry and any effort into helping me. I am 501(c)

We Are Not Like Other People

Thanks to Curt for supporting us with his funnies. He has an epidermoid cyst and we are brain surgery buddies.

Now that you are reading this you are either a patient or someone who loves a patient. Let me warn you. Stand back watch out and remember one thing only... YOU HAVE BRAIN DAMAGE. YOU DO NOT UNDERSTAND WHAT OTHER PEOPLE ARE SAYING TO YOU SOMETIMES OR WHERE THEY ARE COMING FROM.

This isn't bad or wrong or anything because they sure as hell can't understand where you are coming from and how much effort it takes just to communicate. You are just different. Accept it and move on. Make the potty mouth and freaky things that come out of your mouth part of your personality. It's much easier than trying to fit in.

This is not up for debate G** D****... oh sh*t... not another cuss word coming out of my mouth. Turrets Shmorettes try living with brain damage. Anything coming in is going to get NEGATIVELY REINFORCED FROM SOCIETY AROUND YOU. It's easier to attach to a strong negative emotion than regular steady ones. Parents: remember that one time you yelled at your AC child and they cried and cried and cried? They don't forget that stuff EVER. We have a different file structure than most people and have these insane memories (or at least I do). When you lose your temper and yell they blame themselves and feel unloved. You have to learn how to discipline your AC child a different way than you would other children. Hopefully when I get some what better I can go to school and write books for us and provide a better guide.

It has taken me 31 years to articulate the problems I have been having. AC children can not tell you that their body is burning or other things because they don't have the knowledge or words nor do they know what it's like to be "normal" . They just know they are different and they have different perceptions than their friends, classmates and peers.

If you are a patient read, read, read... Educating yourself is the best defense. Ignorance may be bliss but it won't help you understand your body. The best books are self help and classics to keep your mind challenged but watch out for junk. Anything from keeping you from being reminded 24/7 that you have this thing lodged in your head and it hurts and there is no cure and you just keep trying to live your life with a smile on your face dancing laughing pretending that your life is care free while you slowly start to feel your nerves burn where "The brain doesn't feel..." except maybe where your NERVE ROOTS are. Read those funny Steven King books like the one about the brother still in the other's head and laugh at them because they don't really understand what it's like to have sensory overload all the time from a congenital abnormality inside your head. Carrion Comfort by Dan Simmons is also another favorite of mine.

Children with Cysts

Found a cyst in your unborn child?

Consider abortion. This is not a moral debate. It's not about YOU but the life and health of YOUR CHILD. Do your own research. If you want to have a child with an incurable degenerative disease then that's your right. I want you to consider other things such as the expenses of dealing with brain surgeries (emotional and monitarily), drugs, long term treatment, mental health issues as most people with this disease die at their own hands. Think about it long and hard because your baby might not have the life you want for it. Make another baby that will be healthy. There are doctors that will tell you anything but a patient will tell you what it's like to live through this especially when you become symptomatic.

If you have a young child with this disease hateful temper tantrums are just a par for the course. The teenage years of surging hormones are priceless. I can't tell you how many door jambs I busted but I was very volatile and uncontrollable at times. If you can teach your child how to channel their anger and rage at a young age you will help them learn skills necessary to develop like a "normal" kid.

This is why I think you have deeper feelings inside your body and are functioning at your core level. This is why you are SO EMOTIONAL or not emotional at all. It all depends on where your cyst is and what it's pushing on. Your senses are being overloaded all the time by everything going on around you. It's best to be serene, calm, and emotionally stable as much as possible because you will have emotional flare ups largely due to people and the tantrums are akin to an atom bomb explosion and it comes from no where. You can learn to control your environment to a certain extent but you should learn to share your life too(!) because at sometime you need support.Try not to let people take advantage of you. This is a common complaint I hear from other brain damaged people too because healthy people will use you. Don't let them!

What You Can Do...

Let's concentrate on good things. You can swim and should swim as much as possible. For those of us with Middle Cranial Fossa Cysts sex can be out of this world unless you are on too much Neurontin (Sappho was right when she said orgasms were seizures) Build up your muscles so they can carry your body. The slimmer you are the easier you are on your brain and spinal cord. This is hard for a lot of us because no matter what we eat we all have little jelly bellies. I don't know if this is a nervous system condition or what. Maybe it depends on where your cyst is.

Swimming is key because you can stay in shape without things pushing or pulling on your body. Art therapy is strongly recommended and even something like Tai Chi will help them find their center. Do not give your child "special" treatment but teach them self- discipline by getting them into a routine (this might control the ADD), get them interested in computers (so they have something that can keep them busy and safe... comfortable longevity is what we are shooting for here) and let them watch strange movies to develop their minds. Have them keep journals and teach them it's OK to write everything they feel because this will be an invaluable tool someday to treat this disease.

Sleeping is one of the first pleasures you will have in life. When you can sleep soundly and rest your body you will have a clearer mind. It is not unusual for a teen to sleep up to 14 hours a day. That's about all you have in this life that is yours and if you learn this early on you will be far ahead of the game. If you learn to tap into your own well being then you might not need to use prozac or other drugs that mess with your head. This is a very Eastern way of thinking which is healthy and relaxing.

You are going to have to develop coping skills your family and friends will not understand. This includes learning how to use your mind while you are in pain or negotiating time to better feel your body and it's natural changes.

You need to build up a support network because there are times you are going to fall down. If you are in the early stages of your disease it's nice to go to counseling to learn coping skills for the hard knocks and believe me they DO HIT YOU HARD. It's nice to have a "normal" life but it's more important to be healthy.

Life is too short to live unfulfilled. Find people that you can admire, like Helen Keller or Samantha Scolemerio. There are a lot of people out there suffering like you do and if we do not talk about it then more and more people are going to suffer from loneliness and hurt and die from this awful disease at their own hands.

Don't ever let your health insurance lapse or be smart enough to be poor so that you can get SSI. I think the #1 profession to go into would be teaching because of the benefits even if you become disabled you have a nice safety net. Try and go to college if you can because you can go for free through your Vocational Rehabilitation Center in your state or for practically nothing if you qualify (and you will if you have an AC). They will pay for you to be trained in a certain field and you get to chose a profession well. I recommend Business, too, because it always helps to have a Business Education in today's Economy. (Watching the market fall 1/3 in 1998 in Russia led me to understand the fragility of every economy and the backlash it had on ours even today).

Can I Have A Normal Life?

That depends on what you deem "normal".
You will be in a perpetual state of confusion.

This disease is a progressive degenerative disease. That means it happens in stages. Slowly over time. There are certain things you can do from preventing further degeneration to your system. I would like there to be a stem cell study for us to repair the damage done to the root cells of the nervous system. After doing a lot of research I think there is hope in that "cure". Just because you have had your cyst drained or shunted doesn't mean you aren't going to experience some of these symptoms on some level as this disease progresses. We don't know what happens long term but "they" say the things you are feeling are not "due to the cyst" which is a total lie. Everything has to do with your brain which is where your cyst IS.

You can fly but I am here to tell you you will hurt yourself. You can scuba dive but I promise coming up is painful because of the pressure change. I have sought out so many remedies... homeopathic, herbal, pharmaceutical, Marijuana. The only thing I am willing to try next is trepanation and go to Mexico and have it done to see if it helps relieve the symptoms of being over crowded. Some woman at the brain tumor conference showed me her "trap door" and I was jealous because more blood was moving around in her brain. People with brain cancer do not have the same kind of symptoms we have. They do not hurt.

'Learning To Live With Medication'
or
'On Becoming A Junkie'

Females

My cyst is over my pituitary gland so it has done some funny things to my system like irregular periods and painful cramps so I was on the pill for a while. I do not recommend taking drugs that you don't need because you will be on other things that are going to be hard to your system. I recommend the use of condoms over the use of female contraceptives (you never know if you are going to have a baby but I think this would be too damaging to your already taxed system) because if you take a shot of something like Depo Provera you could develop cysts in your female organs (like I did). Be careful with drugs because they can be a weapon.

You will be on drugs forever. Which drugs you use is your choice. I have chosen to veer away from hard street drugs because once you have been on morphine why bother with impure junk? I am a firm believer in utilizing medical marijuana but only after you have graduated from college or are in the process (I first found relief when I was 24. I now consume THC butter for optimal results and once I started feeling the pain relief it offered, I chose to move from Kentucky where I was a criminal - even though my Grandfather used to grow it when he was young (not all slaves picked cotton) - to California where I am a patient.

The longer you stay off medication the more healthy your body will be. I went cold turkey for a while and kidded one of the nurses that I was pretending to be healthy for a while because I was sick of the doctors not knowing what was happening to my body. She laughed and said she had never heard that joke before because so many people were trying to be sick. I was on Inderal for a long time but I think it added to the depression of living with this thing. You might have to go on mood stabilizers which can be a good thing because drugs like Elavil allow you to sleep and give you great deep tissue repair. It takes a long time to figure out which drugs are right for you. For a long time I could ease the nerve pain I had by taking vitamin B6. That would keep my hands from waking me up in the morning because they had fallen asleep. Now I am on Neurontin which keeps the feelings of electrified nerves from settling down and Vicodan for pain because I am always in a tremendous amount of pain no matter what I am doing. I have been living with this disease for 13 years now.

I don't see the harm in trying Marijuana but I think it's more important to eat it because it settles the body and I even asked the pot Doc if cabbinoids break the blood/brain barrier and he is getting back to me. You can also make tea, butter and brownies the list goes on and on. I think a large number of us agree that smoking cigarettes is a can help sometimes because it constricts the blood vessels and allows the blood to fit through narrow passages easier. You do not have migraines, you have something that is rare and hard to treat. Do not take migraine meds as they may be more hazardous than helpful.

I talked with one of us that has been recently diagnosed with Fibromylegia which can be caused by the compression on the root nerves. She is taking Viox and I recommend that you get check out by a Rheumatologist so we can figure out if this is a symptom of our disease or a cause to our pain.

You have got to take extra care of your kidneys and liver because this disease may cause other weird things to flair up in your body. Some people get diabetes. Other people have kidney problems. There are a slew of reports on MEDLINE.

I think having one of these things is like being on acid all the time. Your perceptions are altered and you "feel" people around you. Sometimes you can read their minds and sometimes you just know things about those around you because you are so sensitive... you are a big nerve.

Watch The Pressure

#1 Rule of photography.
Do not Photograph into the sun.

Rule #1 DO NOT FLY IN A PLANE. I reiterate DO NOT FLY UNLESS YOU HAVE TO. My most recent journey hurt so much and I lost sensations in my hands from the high pressure system. (it's like smoking... it won't kill ya the first time but the more you do it the more it hurts) This is VERY IMPORTANT KIDDIES.When you fly in a plane you start to tear your Pia matter because of the constant pressure changes that makes the fluid move around and compress so that when you land the pressure returns to normal. You should fly wisely. (Think of it like you would a rubber band ball. If you stretch too much of one it's going to snap or stretch out too much or dry rot.) This causes microscopic adhesions on all the tissues involved. THIS HURTS A LOT. Last time Was on a plane I could feel my spinal cord wiggle at the bottom where there is supposed to be a tail. Maybe it was the vicodan but I think it was my body's way of telling me that the pressure was too great. You have got to do everything you can do to keep your brain from tearing on the inside because then it becomes harder to hold up your body as you age because those nerves that are attached to your extremities will not be supported by your brain (Think of it like a puppet with strings and if you cut one of the strings...) There is one cell membrane of your arachnoid cyst against the Pia Matter and the Dura matter and like I said I think the arachnoid membrane is what carries the electrical impulses around your body. When these paths are blocked by cysts the electricity has to reroute itself somewhere inside you brain tissue and this also does something of which I am unsure of.

Marie Vortex Springs 1999

Rule #2 Give up the hopes of scuba diving for same reason as flying. Although the pressure change can feel nice it is really damaging to your head. This means no roller coasters, free fall rides which are scary enough as it is, no rides that jerk your head around (the tea cups and hurricanes should be as far as you go), no more diving, and exercise... there is a long list of things you should never try... bungee jumping, bowling, tennis, anything that causes an impact on your body.

It's important to remember that you can do a lot more when you are young and you have to do them if you have the strength and can do so. As you age it get harder and harder.