An arachnoid cyst is a fluid filled sac that develops primarily in the uterus during the development of the brain and skull. The arachnoid membrane of the brain splits, and the split space fills with fluid known as cerebral spinal fluid. The fluid will enter the split area, but it cannot escape at the same rate as it enters. Because of this, the cyst will grow over time. The growth rate depends on many factors, but even as it grows, more times than not, the cyst will remain asymptomatic. This means that generally, an arachnoid cyst will not cause any symptoms.
Arachnoid cysts can grow anywhere on the brain with the primary areas being the side of the brain, and the top of the brain. When a cyst forms on the back of the brain, this is called a posterior fossa arachnoid cyst. A posterior fossa arachnoid cyst can create pressure on the brain stem and the cerebellum. These are extremely vital organs of the brain and they both produce tremendous functions that are required to live.
The brain stem controls a lot of our everyday functions that we do not even think about. One thing it controls is our body temperature. It controls our diaphragm for breathing, and it is where our hunger and thirst are controlled. It is also the path in which all our nerves leave the brain and travel throughout the body. The brain stem controls our pain, it is also where the nausea center is based, and it plays a role in the regulation of our hearts.
The cerebellum; on the other hand, helps control our balance. It plays a role in the reflex of our muscles, and plays a major role in our motor skills. Both parts of the brain have their very specific tasks, and when either one is compromised, it can reek havoc on the entire body.
If treatment is needed for an arachnoid cyst, usually the first choice is a fenestration of the cyst. This means going into the brain with a wand and opening up any walls that may have formed inside the cyst. These walls trap the fluid inside the cyst. The idea of this procedure is to get all the cerebral spinal fluid flowing in and out of the cyst efficiently so that the cyst does not continue to grow. If this procedure does not work, a neurosurgeon may decide to put a shunt in. A shunt helps to keep the cyst draining and not allow fluid to build up inside. If the cyst is small enough and in a space on the brain that is not too dangerous to remove, the neurosurgeon may be able to remove it altogether.
Symptoms can show themselves in many ways; from balance problems, nausea, vomiting, headaches, even seizures. Many cysts are discovered on accident when having a scan for another reason. They can be seen on Cat Scan, but the preferred diagnostic test for a brain cyst, is an MRI.
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Hi Ray - I'm very encouraged by your comments and the way you're taking charge of things. I'm so glad that you found us! Please keep us posted. Pat
August 30, 2010 - 5:07pmThis Comment
Hi Ray,
Reading your post brings back so many memories for me...the fog, the sleeping upright, the never-ending pressure. Gosh I hope you can get the help you obviously really need. I'll never forget after my fenestration surgery, how when I looked up and saw the TV in my hospital room, and how clear it looked after having all the pressure removed from my head, how exicted I was to finally feel like I was back in the land of the living....the fog had lifted! I hope that soon you can experience it. Keep us informed. And just keep sleeping upright if it helps....getting some sleep in an upright position is better than no sleep, or waking up gasping for air all night long. My upright position also helped my numbness. Lying flat caused more pressure on my brainstem and cerebellum and caused me to get numb head-to-toe. I felt paralyzied. So just incase that is on it's way next for you...I'd recommend staying at a good angle at night.
Take care and good luck. Please, keep us updated.
maria
August 29, 2010 - 8:26pmThis Comment
Hi all, Well after reading here about the many different doctors that are out there for us to see, I have contacted those near to me, Duke, Barrows and Skull Base for 2nd opinions......What I have taken from these posts, other than the wonderful information of course, is the knowledge, that if I dont take charge of this situation and make this an issue with my doctors at kaiser, nothing would ever change. As of now I am completely off seizure meds. My brain fog has cleared, ( all my symptoms are still with me) and I feel ready for the fight...Like maria I am at the point where I have to sleep upright as the apnea keeps me up all night when my head is lowered to level. The pressure in my head is intense and my memory and cognative skills are impared....but....I feel that there is finally a light at the end of this long dark tunnel.Hopefully its not a train coming my way.....Thank you Maria for this blog, yours' and all the others who post their stories give hope to those of us still struggling with this condition....I'll try to keep you informed on the outcome....Thank you once again all...Ray
August 29, 2010 - 7:56pmThis Comment
My daughter was born with left anterior arachnoid in the temporal fossa it measured 2.5 cm. at birth.
She spent 4 weeks in the nicu due to breathing problems, rapid heart rate (SVT), and she lost 400 ccs of blood at birth.
No one told me she had the cyst. I happened to read it in her medical records about a week ago.
I have taken my daughter to numerous doctors and specialists for many years trying to get her help. She is currently 12 y/o.
She has suffered from the following:
poor balance
poor coordination
suicidal thoughts since 4 years of age
extreme emotional outbursts, sad and anger,but doesn't know why
poor social skills/trouble communicating and interacting with others
some impaired cognitive funtion
headaches
over all not feeling well a lot...can't explain how she feels
pettite mal seizures
insonmia
language processing disorders
She's had many diagnosis's including PDD NOS, Mood disorder, Depression, Selective Mutism, Cognitive Disorder NOS, Recepitve/Expressive Language disorder
I was told when she was 6 by a psychologist that it appeared as though she was having pettite mal seizures. He told me there was no treatment and no worries with it and not to do anything as they will go away.
I thought they went away cuz I didn't notice the same symptoms. She used to appear to slip out of reality for a short time and it was more obvious.
I had her tested again recently for the language issues and I was told she appears to be having seizures and I need to take her to neurologist.
I have had 3 doctors that have known about her cyst for 12 years and not one of them told me. I went and talked to my pediatrician and he told me her symptoms are not related to the cyst and he would not order an MRI.
I don't see left anterior arachnoids anywhere online. They all seem to be in the middle or the left posterior.
Are her symptoms consistent with a cyst in the same location as hers? I'm trying to find someone to do an MRI so we can see if it's grown or not or if it's still there.
My daughter has suffered for 12 years from not only birth trauma but these ongoing issues. I want her to experience what it's like to be normal and have her gain some self esteem and enjoy life. I don't know where to go from here. I don't want to waste time going to 20 different doctors.
How do i find out ahead of time if they believe arachnoid cysts can cause symptoms?
August 18, 2010 - 10:27pmThis Comment
so sorry to hear all that you have gone though. My son had a posterior fossa arachnoid cyst. I can tell you that the most important thing is finding the right DR. Look in your area for a nero surg that has either had experiance wth cyst or has had training in the mid west the peds dr out there seem to have atleast seen these types of things. My son had many of the same symptoms as your daughter (but not the seizures). My son had his cyst surg june 16 and is doing great his dr says that the best age to do surg for these is when the children are teens (they still recover well but can explain what is going on better to the drs) If you are in FL my sons dr is (name removed by EmpowHER Moderator.) he is with Arnold Palmer Childerns Hosp. Hope you find a dr that is good in your area. Keeps us all Updated. And remember that a mother knows their child better than anyone keep going till you find a dr that listens.
August 19, 2010 - 7:16pmThis Comment
Hi,
I am very sorry to hear about your daughter. It sounds like you both have been living with so much all these years. To me, just someone who has lived through this myself, it does sound like symptoms of the cyst. As far as finding someone that does believe that brain cysts can cause these problems, it does take some work and effort....sending copies of her records and a summary of what all has been going on with her over the years. Neurosurgeons, to me, are the best ones to approach on these matters. Neurologists are not as familiar with, in mine, my father's, and many other people's opinions. Neurosurgeons have more training in, and more information on brain cysts. If you are willing to look outside your area for help, search neurosurgeons for surrounding areas and states. Pull them and the hospitals they are on-staff with up online and research them. You can talk to the office manager of the group and get their feedback on which doctor in their group more deals with arachnoid cysts. Many times, the chief neurosurgeon is the more well-rounded doctor who deals with an array of problems, but not always. If it were me, that is the route I'd go. I would just start tackling the different facilities in the surrounding area and find neurosurgery groups and contact them. It may take sending her records to several doctors, but surely someone will be willing to see her and know enough about these cysts to help get you pointed in the right direction.
The symptoms you describe for her....many are of what I dealt with, so it's hard for me to sit here and think that the cyst isn't the culprit. I hope you can find someone to help her. Don't give up. It would be amazing if she could get to live life more normally and know what it feels like to have days where she doesn't have to live with at least (so many) of these symptoms.
Keep us posted and good luck!
August 19, 2010 - 3:39amMaria
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Hi wanted to update everyone my 13 yr son had a large posterior fossa arachnoid cyst. It well have been 6 weeks since his surgery this wed. He is recovering very well somethings are still up and down. But for the most part all is good. I have been on this site since I started trying to find out more after my sons cyst was found. From what I learn from his ped. nuro surg he was luck. In the dr experience the results and recovery seems to be the best for teens (their still growing but they can explain their symtoms) The advice I would give to all going through this is find the right dr for your case(check if the dr has work with cysts before that was the key to getting my sons RIGHT dr) Will update again after his follow up MRI and check with his surg. And remember to keep the faith
July 26, 2010 - 9:29pmThis Comment
Anon - Thanks for the update on your son, it's good to know he's recovering well. I hope that you are taking some time for yourself, as his caregiver, and that you are doing well. Thanks for the good advice, and please stay in touch.
July 27, 2010 - 5:18pmTake care,
Pat
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Hello - I just found this site and it's very interesting. Please excuse this long message but I am hoping for some advice and figure I should give all the history first. Last fall I was diagnosed with an arachnoid cyst in the postererior of the cranial fossa measuring 46 mm X 39 mm. I've had bad balance since my teens and have never had any type of muscle memory - hopeless at all sports, after five years of dance classes could never remember a dance routine and could never do turns (I'd fall down), and despite 10 years of horseback riding would fall off so often I had my orthopedic surgeon's number memorized at 14.
In high school I started having really bad headaches starting from behind my ears - right where my glasses touched the skin back there . They thought at the time it was due to swelling of my lymph nodes and the glasses rubbing against them so they removed the nodes behind my ears. I never noticed any real difference but the headaches became fairly rare once I hit my 20's- I'm 57 now. I can remember a period about 20 years ago when I would suddenly get intense vertigo - the room would spin terribly - and the only solution was to knock myself out on Valium and sleep for a few hours until it went away. This went away on its own after about 4 months.
Last fall I discovered I had osteoarthritis in my cervical vertabrae and they saw the bottom of the cyst in my MRI. Then I had a brain MRI and they saw the size - 46 X 39 mm - and noted that it had split a portion of my cerebellum away from the rest of my brain and shoved it down my spinal cord.
As a sympton of the arthritis, I was told that the osteopytes were squeezing nerves and this was the cause of the severe pain I was having in my neck and shoulders. I had also lost some feeling in my right arm and hand as well as coordination - I could barely write. With some physical therapy and lots of stretching I've got all the feeling back and most of the coordination but the pain remains. I take about 45 - 60 mg of oxycodone daily for the pain.
Lately, I have been having the headaches again at the base of my skull and going behind my eyes - pressure type headaches that despite all those painkillers can send me to bed for 1 - 3 days. I had a CAT Scan and I have some fluid in my sinuses but nothing significant.
Now comes my question and request for advice. Could these headaches be caused by the cyst? Could it have started growing again? After all these years? And could the shoulder and back pain also be connected to the cyst? The neurologist and neurosurgeons I've seen have told me the cyst is benign and should be left as it is. I'm fine with that but if it's connected to these other symptoms I'd really like to do something about it. Any thoughts?
July 25, 2010 - 3:45amhamp
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Hi Hamp,
July 27, 2010 - 5:38pmSorry to hear about all your trouble. It sounds like you have really been put through the ringer over the years as well as have developed some tough coping skills to have gotten through what you have.
My name is Maria and I am the one who started this following on arachnoid cysts, primarily because when I was going through (and still going through) all my trouble, I felt like I had no one to help...no one to listen, and no one to bounce ideas off of. I didn't know where or who to turn to. There was no support. I am so glad to see so many people coming here to get support and bounce their questions off of others who have been through similar situations.
Like you, I was told that my cyst could not be causing the problems I was having because they are "usually" asymptomatic. Well usually means just that....that normally you wouldn't expect them to cause problems, but they "can", cause problems....and mine did. Mine was compressing the brain stem and cerebellum and had shifted my skull up and forward, compromised my pituitary gland, and narrowed my optic chiasm (where all the optic nerves pass). They could not remove it or I would die, so they fenestrated it....opened it up so that all the cerebral spinal fluid freely passed through the cyst and did not get hung up in the walls and cause it to grow and gain pressure. This worked for about 3 months, then I had to have a shunt put in.
It was hard finding a doc who would listen to me and believe me about all my odd symptoms..the pressure in my head, the full body numbness when I slept, memory problems, the horrible fog I lived in, cognitive deficits, and a hundred other symptoms. I mean my cyst is huge....how could it NOT be the cause of so many neurological issues. That is what I had to keep asking myself, and every time I answered myself, the answer was obvious....it was my cyst. How could you have such a large foreign object growing on your brain and not have problems? It is a foreign object that does not belong there, and if organs and parts of the brain are shifting to make room for it....wah lah. There's your answer. And I knew it was the cyst for sure once the first surgery was over and I could once again see, think, focus, didn't have near the numbness at night when I slept....so many things relieved by the surgery. That was my answer....and all the doctors that tried to tell me the cyst was not the culprit, but named 15 other things it could be.....were wrong.
I tell people to listen to their heart and their better judgement. If you think the cyst could be causing your problems, because only you know what you are feeling, how things used to be, what has changed, etc., then see 15 different neurosurgeons if you have to. I saw three before my surgery but would have seen more until I found the one who believed me, and had the knowledge about these types of situations to know it was the cyst. So many docs today, do not know enough about them to make those kind of judgement calls. They go by the textbooks that say they are normally asymptomatic. So who are the ones who do not fall under the "normally asymptomatic" list? Well, I was one.
Keep searching, and keep an open mind. If you feel like the cyst is responsible for a lot or all of your symptoms, keep looking. See as many neurosugeons as you need to. Keep record of all your symptoms...changes, etc. And good luck. Don't give up on yourself or the medical field. You will find the right doc who will help you....you may just have to "find" him.
Keep us updated.
Good luck-
Maria
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