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.
All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.
Add a Comment280 Comments
I had a lot of symptoms. Balance issues, blured vision, blood pressure was at stroke level, buzzing in my ears, insomnia, forgetful, i couldn't remember my age my birth date, childrens ages birth dates, address. Pain severe headaches. The pain was horrible, it would shoot from the back of my head around the side. I had numbness on my face, ear and side of my head. Most of these cysts do not grow or cause problems. Mine however was about the size of a golf ball and was pushing my brainstem forward. I hope you don't have these symptoms. Make sure you have it checked. I will look up the name of the surgery and post it.
November 8, 2014 - 7:22pmThis Comment
I have that. What were your symptoms specifically from the cyst? What type of surgery did you have and did it help?
November 8, 2014 - 12:33pmThis Comment
This is crazy I ordered rims from a guy out inArizona direct tire his name was RJ his wife had this and he said that surgeon is great I appreciate any help I'm lost imma call dr speltzer and see if he is experienced with children with this horrible thing my son also has other issues I just prey
September 10, 2014 - 6:05amThis Comment
Hello Anonymous,
This might be the doctor you were told about.
Robert F. Spetzler, MD, FACS. He is the director of Barrow Neurological Institute in Phoenix, Arizona and a Professor of Surgery, Section of Neurosurgery, at University of Arizona College of Medicine in Tucson, Arizona.
Dr. Robert Spetzler is a world-renowned neurosurgeon who specializes in cerebrovascular disease and skull base tumors.
Regards,
September 10, 2014 - 8:16amMaryann
This Comment
Yes, Dr. Spetzler is great. He is the chief neurosurgeon there at Barrorw's. I'm not for sure if he does pediatric neurosurgery or not, but if he happens to not, there are a lot of doctors in that group and have heard that they are all extremely good. I would trust any one of them.
Good luck. By the way, you are right....brain cysts are horrible! Mine has caused a world of grief for me over the years....well, that and my shunt. I just went through a few years of dealing with too low of CSF (cerebral spinal fluid). My shunt was over draining due to a leaky valve and the doctor I see at Duke now, here in NC, didn't pick up on it and just let me go downhill for the past few years. I was the one who had to request he do a spinal tap to measure my pressure, and it was then that they realized mine was way too low...almost bottomed out. Since May, I have had 5 spinal taps and surgery to clamp my shunt so it doesn't drain anymore. So, some doctors are just really good and knowledgeable with these cysts, while others are just not.
I have spent a lot of time researching everything to do with brain cysts, shunts, cerebral spinal fluid, etc., so that I can play an active role in my own healthcare. If I didn't, I'm not so sure I'd still be here today.
Let me know what you find out about Dr. Spetzler. If he can help your son and you decide to go that route, it's well worth the trip to Phoenix to let him help.
Maria
September 10, 2014 - 8:14amThis Comment
That's who done this others surgery is he experienced with children with these cyst
September 10, 2014 - 5:55amThis Comment
I. Have ur. Book brought it when I first found out about my son's condition i'm a nervous wreck I could lose him what doctor did you see in Phoenix I heard of another good one out in Arizona maybe is the same one I read a lot of your book and hurt knowing more about this condition I just feel like in West Virginia he won't get the care that he needs The day I found out was the day I stayed to be searching and I found your book on Amazon and brought it immediately thank you commenting I am just a mother trying to help her son I am concerned his sleep apnea is central it's every hour three times and hour 10 seconds each time but since the diagnosis of the cyst we're going to have it as sleep study reevaluated is there anything else I can do my son also has attention deficit hyperactivity disorder or behavior disorder defiance disorder and we believe that he has autism. I worry day in day out every day every second about him I get sick when I think about him having to have surgery on the back of the brain next appointment we have is with the ostomologist tomorrow just to check the pressure in the ice
September 9, 2014 - 9:53amThis Comment
Hi I am a single mom of a 6yr old son who was also diagnosed with a posterior fusso arachnoid cyst. It's 4cm big we're monitor ing it every 6mo and he also has central sleep apnea I am a nervous wreck I googled to find a mom dealing with the same thing I live in WV but wanting to take him to Boston children's hospital which are rated #1 in nuro surgery I'm in WV can anyone help he is my only child I love him and couldn't imagine being without him I worry day in and day out please help
September 9, 2014 - 6:27amThis Comment
HI,
I was reading your post and am sorry to hear that your son has this Posterior Fossa Arachnoid Cyst. I know it is frightening to hear your child has anything wrong with them, and is even more frightening when you know it is an issue having to do with the brain.
I have had mine all my life but did not start developing symptoms and problems with it until I was in my mid-thirties. My boys were 3 and 6 and it suddenly cut into my role of being the kind of mom I had always planned on being.....feeling terrible physically, countless doctors appts., surgeries, and on and on. Here it is 10 years later and I am still battling with brain issues related to the cyst and shunt I had to get.
One thing that caught my attention in your post is that your son has apnea. I also dealt with that before my cyst was fenestrated. Terrible apnea. I would wake-up in the middle of the night, coughing, choking and gasping for air. Although my apnea is better today, I still do deal with it at times.
When pressure builds in these cysts, it can put pressure on the brain stem (which controls your breathing), the cerebellum and many other parts of the brain. If you feel like Boston is the best place for you to take him, then I would. I lived in NM at the time, and found the best neurosurgeon, a world renowned neurosurgeon, was in Phoenix. So that is who I sent my records to and his response was that I needed surgery - a fenestration.
If you haven't been in contact with anyone in Boston yet, my advice to you is to start researching the neurosurgeons there and find out which one is most experienced with Arachnoid cysts. Whatever records and/or MRI's you have for your son, find out the protocol in getting them to the doctor to review. Some doctors will review them at no cost and give you their opinion, others may charge a fee to review. He then may want to see him in his office for a physical exam or maybe even a repeat of an MRI.
No matter what answers you get, if you are not satisfied with his/her response, move forward and keep searching to find a neurosurgeon that you "do" feel confident in and are comfortable with his suggestions for treatment, etc.
My book, "It's All in Your Head," chronicles my story and journey with my Arachnoid cyst. It's available on Amazon, through Barnes and Noble, etc. You may find it helpful to see what someone else has been through with it, and learn more about what these cysts are capable of. One thing I will tell you is that if you feel like this cyst is causing symptoms for your son....you've noticed changes in his behavior or physical and mental abilities, then don't let the doctors convince you that there isn't something wrong and that nothing can be done. Many will try to tell people these cysts are typically asymptomatic, but there are plenty of them that "do" cause problems....mine being one of them, and sounds like for your son as well.
Don't give up. Reassure your son often that it will be ok and you will get the answers you need.
All my best. Will say a prayer for your son and do post again as to how things are progressing for you and your son. If you ever have any questions, I'd be happy to try to answer them the best I can.
Sincerely,
Maria
September 9, 2014 - 7:03amThis Comment
My mouth dropped open when I read your post and just ordered your book through Amazon. I have the same condition, and in a very similar fashion to what you're describing I did not have any symptoms or issues until I hit about 31. I've had repeated visits to neurosurgeons and now two surgeries, both were unfortunately unsuccessful attempts at fenestration and shunt catheter. In both cases scar tissue took over and blocked the shunts and I continue to see growth in the cyst today. Its been a big interruption in my life and for my family - with symptoms that have steadily increased over time: headaches, nausea (especially worse first thing in the morning after laying down all night), lost sense of smell with a consistent phantom smell or "aura", exhaustion/lack of energy, and mood changes (although not sure if that's directly or indirectly caused).
I'm fascinated that I found this post (thank you for writing about it). Seems this is most common in children and I've found very few answers online or through the neurosurgeon opinions I've sought out. Very curious to read your book and to compare notes!
I'll check back on this post, please do feel free to reach out to me if you are interested in discussing further. I'd be happy to provide my experience or details on doctors/findings.
October 17, 2014 - 3:31pmThis Comment