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Saturday, March 6, 2010

What is an Arachnoid Cyst?

Arachnoid cysts typically develop during development while inuterine. The arachnoid membrane will sometimes, and doctors don't really understand why, but it splits and the split portion will begin to fill with cerebral spinal fluid. The arachnoid membrane is a protective mebrane around the brain.

Sometimes the cerebral fluid, getting into the arachnoid membrane, will cause the membrane to grow and get larger, creating a cyst. Not all cysts grow. Many times it depends on whether or not membrane walls build within the cyst. These walls collect cerebral fluid beind them. The fluid can get trapped inside the walls, unable to find its way out, so the cyst will grow.

Depending on where the cyst develops, it can then begin to put pressure on the different areas of the brain. Mine, is a posterior fossa arachnoid cyst. It sits on the back of the brain and has grown, over the years, to bigger than a grapefruit. It consumes a very large portion of my brain. My brain has essentially grown around it over the years, and it expects the cyst to be there now. The cyst has caused my brain to shift up and forward. It has also pushed the back of the brain, where the cerebellum and brainstem are, downward. My optic chiasm is narrowed. This is where the optic nerves pass. My fourth ventricle is narrowed, as well as my pituitary gland is compromised.

I began to have symptoms in 2003 when I was 35. I noticed slight differences in myself, like I would forget things easily; lose my train of thought easily. I also had physical symptoms. One of the first signs something wasn't right was when I would wake up in the middle of the night and my head would be numb, just like if a limb lost feeling. I couldn't move my head off my pillow. Then that developed into my head aching, right at the back of the head where the cyst was. It would hurt after leaning it against a recliner, or the seat in the car. After that, things just spiraled fairly quickly downward. I began to get dizzy alot, forgetful, confused and unable to put things where was the dairy section in the grocery store I'd shopped in so many times. And does red mean stop or go on a stop light.

It was a frightening and unnerving feeling, especially because I didn't know what was causing these odd symptoms. I saw many doctors, had MRI's, and no one wanted to associate these odd symptoms with my cyst. Even I began to believe them, that there was something else going on other than the cyst. Or maybe, I was just crazy. But when I started getting paralyzed at night when I slept, waking up not able to move an arm, a leg, or a finger, I knew it had to be my cyst. I even stopped breathing in the night, now having sleep apnea. This, I found out later, was due to the cyst putting pressure on my brainstem, which controls your breathing.

Something was gravely wrong and I had to get to the bottom of it. With no one else to believe me, or even halfway listen to me, I had to became my own advocate. I had to take charge of my body and of me. I was going to get to the bottom of this, and I was going to find a doctor who believed me and didn't think I was cuck-koo. I was going to make someone listen to me, because the way I was feeling, I just knew that my time was running out. If I didn't get someone to help me with this cyst, I was surely going to die!


  1. How are you doing now? Did you have surgery?

  2. Hi,

    Sorry for the delay in response. I am hanging in there but still have a lot of issues. I am hopeful that this will be a better year. I have some things I want to do this year - healthwise - to help to get back to a better place and feeling better. So I am starting some things tomorrow (actually) and will keep a positive outlook that over time, I will get to feeling a little better.

    Tell me about yourself. Do you have a cyst?

    I wish you a healthy, happy and prosperous New Year. Thanks for checking in.


  3. Hi Maria,

    My name is Ashley, I was diagnosed with an Arachnoid cyst in the back of my brain last year. I don't remember the specific location...I was in a great deal of shock when the neurologist told me. Apparently mine has just showed up recently, I had had an MRI done as a child due to head trauma and constant migraines that the doctor at the time thought was seizures. I've been experiencing a lot of very distressing and uncomfortable symptoms for a long time now and this neurologist continues to tell me it has nothing to do with the cyst. Your blog has brought me comfort and inspiration that I am NOT alone, and I can do something about this. I am waiting now to get into my second opinion appt with a different neurologist. *^_^* Thank you so much for sharing your story with everyone!

  4. Hi Maria, my Name is Jessica, I have an arachnoid cyst too but mine is in the front right side of my head, I had Surgery to drain it a little under 2 years ago now. I am 18 and am concerned about how quickly my cyst might grow back as my surgeon said it more than likely would due to the fact that it was stage 3 .. Do you have any information for me as I'm struggling to find my own, and am worried because it has already given me Epilepsy...

  5. Hi, I was recently diagnosed with an arachnoid cyst behind my cerebellum. At first (about 5 years ago) I was told that this was not a big deal. I am having really vauge symptoms, pain, IBS, headaches, etc. and my new neuro thinks that my cyst could be the problem. It's almost 2 inches big and we are unsure yet if it is growing. Did you end up having surgery? If so, how was it? I have read some interesting articles about cyst removal and how it does actually help with symptoms. I don't understand why doctors are not looking more into cysts causing weird symptoms.

  6. Hi,
    I wanted to check in to see how you are. Have doctors done anything for you yet, or decided on anything? When my symptoms first started, they were very vague, too. I was never quite sure if what I was feeling was a symptom of something, or what. I talk about that in my book, "It's all in Your Head." Unfortunately my cyst was too large to remove. I had mine fenestrated-where they go in and knock down all the walls that develop inside and block the flow of CSF. The fluid gets trapped inside the walls and causes the cyst to grow.

    Please send an update. I'd be interested to hear where things stand with your cyst. Take care and praying you get answers and relief.


  7. Hi, I have a subarachnoid cyst on the left frontal lobe measuring 40.4mm x 32mm. Like you Maria I have recently started to get numbness in my head and arms at night and sleep apnea. I also get aura's and have been diagnosed with epilepsy (not sure why at 46yrs old). The Neurosurgeon refused to see me saying that the cyst was not causing my symptoms and that the epilepsy can just start???? I am deteriorating now especially as the severe headaches have started. Please advise me as I am at a loss.

  8. Hi,

    So sorry to hear about your troubles. Sounds so much like what I went through. There are many things they can diagnose you with and miss the "real" issues....the cyst. So many doctors want to say that these brain cysts do not cause problems. I got that so much and it was so clear that it was the issue. If you read my book, "It's all in Your Head," I personally think you will see a number of similarities with me and my situation.

    I don't know why so many doctors are so closed minded to the fact that these cysts can and do cause problems. I began to deteriorate quickly too, once the symptoms started. It was amazing and more amazing that I could see the obvious but no doctor could, or "would." If you have to....go doctor to doctor. See as many neurosurgeons as you need to, to find the one that understands brain cysts and will help you. Sounds like you may need a fenestration or something. Please keep me updated. Drop me a note and one last thing is to keep a diary of your symptoms. That will help you and the doctors to see a pattern.

    Good luck and do not give up! Keep me posted.

    You will be in my prayers.


  9. I had a cyst on the back of my brain it caused terrible pain it started when I was in my twenty's. I am 57 now have had 5 brain surgeries and each one seems to hurt worse than the previous one. In my thirties my headache started to become worse. In my forties they got even tougher at least one a day but when I got to be 54 I could no longer function every doctor I had seen for the ten previous years I complained about headache. There answer was it was stress even though I informed them I had a stress free life. there reply was everyone has stress. Well when I reached the end I stopped taking all my other meds cholesterol, blood pressure thyroid went to my doctor had the tests taken and told him I wanted to die. He finally ordered an MRI for my head he called the next week and asked me to come in. He apologized for not listening to me about my headache for thge last 3 years and told me I had an extremely large cyst on the back of my brain that was moving my brain forward and down to the right.
    I had my first surgery to remove my cyst it was terrible they cut to far down into my shoulder muscle and I had to wear a negative vacuum pump for 7 weeks. One week after getting the pump taken off I took out my lawn mower to cut the front yard the vibration did something to my scalp and woke up the next day with a large lump on the back of my head.
    O yea there also the nausea nothing really like it when the nurse hands you a little bag and you launch it across room.
    Seven weeks later my mother came down to visit me I live in Florida. Well wouldn't you know it the tube going to my brain got infected went right to my brain emergency surgery on a Sunday afternoon the surgeon told my girlfriend he did not think I would survive the night the infection was massive across my whole brain. Well I woke up at around 3am begging for my handgun so I could shot my head off all I got was a bag of ice. I now had a tube coming from my head to some kind of machine that was suppose to keep the fluid in my skull balanced well none off the nurses new how to use it so I read the directions and explained it to them. two weeks later I was taken in on a Friday so they could put in a new permanent drain in my brain. the one that was in there seemed to be a hiding place for the infection. Well Sunday evening came and a new nurse came into my room and I told Him to watch out for the tube coming from my head to the machine ten seconds later my head was drug across my pillow the dope had walked right into the tube. I asked him if he had heard me what I had told him he said he had so I asked him why it took only ten seconds to slam into the tube DUH then he walked into again I went Ballistic on him I looked at the tube which now the fluid had blood in it which it never had before he said its only pink that OK. I told him to call my doctor and tell him what happened he said no I asked my girlfriend to give me my cellphone I had his number. About an hour later a new nurse came in never so the Bull again. they took me for a CT I feel asleep woke up around 4am felt someone in my room my doctor told me he had to put the drain back ins came its right position. Tears out of my eyes it had only been2 days since they were last inside my head it was bad. Ten days later I had another surgery to put the tube inside and 3 days later I was out of the hospital. Two days later I was back in again the tube in my stomach cavity was to short and when I stood up it became disconnected. After 16 months of not feeling like I was getting any better I stopped at a farm stand that sold local honey started putting it on my toast with cinnamon 2 months later I started to come back to life its been 3 years since my last surgery i will never be the same as I was i still get headache daily some are pretty bad but most are just a pain.