Diagnosed with a posterior fossa arachnoid cyst in my brain

We just found a posterior fossa arachnoid cyst on my 4 year old son. They are calling it incidental. However, he had low muscle tone as an infant, didn't walk until almost age 2 and now is found to have focal seizures. I am having a hard time finding a pediatric neurologist that believes my sons problems are connected to the cyst. Any suggestions? I am in the chicagoland area. Thanks!

Hm, maybe it might be worth your while to take a trip to St. Jude or Children's Hospital. I know that Children's Hospital is in Boston and that's not too bad a trip (used to take the train from there to Chicago) so that might be worth your while. Have oyu considered that?

I have been dealing with a posterior fossa cyst. It measures 16.43mm X 22.03 mm X 28.50 mm. I'm a 26 year old male and I found out about 3 years ago. I have been dealing with a fullness sensation behind and above my right ear. Thats directly where the cyst is as well. Sometimes sharp pain but mostly its accompanied by dizziness. I have seen nuerosurgeons who say this can't be the source of my problem and that my brain isn't being harmed by it. I have tried antidepressants like pamelor to stop the pain....along with keppra, topomax and a slew of others. I am going to start on nuerontin soon if pamelor won't help. This is so aggravating bc I haven't been able to work two years due to the symptoms. ARRGHH!!!

I was diagnosed with an arachnoid cyst in Feb. 2009. I cannot find a doctor that will treat me. I have headaches, dizziness, vision problems, confusion...i want to feel normal again. I want to be the best mom I can to my kids and right now all I can do is hurt and stay confused.

In a simple answer, YES!!! I was injured in 1995 at Ft. Knox and ended up with post-traumatic syringomyelia. Basically, I am an incomplete quad with lots of symptoms. But, in 2000, they found that I had developed an poterior fossa arachnoid cyst. They found it after I had starting having much more severe migraines that were more frequent and lasted much, much longer. The arachnoid cyst had never showed up on any of my previous MRIs or CTs. But, they performed another MRI after they could not figure out what was going on, and BOOM, there it was. Since then, I have also started having seizures, blindness, deafness, dizziness, and much more. My wife and I thought life was hell before with just the PTSM, but now, the added symptoms of the AC are driving us insane. I have enough problems just trying to deal with the symptoms of both conditions, but the stress of watching my wife and our children try to deal with it just kills me. One thing that we have done, and my doctors in Seattle said to keep doing it, is to research it all you can. We have found that we usually know more about both conditions than any of the doctors. Another great idea is to check with NINDS, one of the National Institutes of Health. They have great resources, and can help with finding a good doctor that might be able to help you. Trust me, I can understand fully about wanting to be the best parent you can be. We have three wonderful children from 10 to 15, and they have all grown up with their father having these conditions. I wish that they had not had to, but God has used it to their advantage. They are more understanding than most children their ages, when it comes to disabled people, and He has touched them in such a way as to give them great, caring hearts. It is difficult for me to have to stay home due to some symptom when one of our children have something going on like a soccer game, band concert, etc. But, we make due with what God gives us, and my wife, or one of our children take pictures and video of everything I miss. Plus, we try to spend as much quality time with each other as possible, which is not easy since we are constantly having to fight with the VA over a rating. What it comes down to is that we have been fighting with the VA over a rating for over 10 years. As a result, we barely make enough to get by each month, and would not if it were not for my parents and God. But, I hope that some of this info helps. I hope that you can find a great doctor that will be able to help you, and our prayers will be going out to you. God bless.

idaho, wow, thanks for your extensive post! Guest, yeah, you are definitely going to be in our thoughts and prayers. GOod luck to you and please keep us posted okay?

As an MRI researcher, I have seen these a couple times. They are not fatal. If they connect with the other regions of CSF, such as the fourth or lateral ventricles, they could lead to hydrocephalus and require resection. Otherwise, not something to worry about.

Arachnoid Cysts are not that uncommon. Many people are born with them and have other abnormalties associated with it, Other's develop them after brain trauma/injury. Many do not have symptoms...those who do find getting help and someone who believes that arachnoid cyst DO cause symptoms feels near impossible. My daughter suffered varies ailments throughout her life including dragging her left leg when walking, bladder and bowel problems, eye crossing and eventually her eye sight became so bad that she not only needed the glasses to see far away but needed bifocals as well, random vomitting as a young child that later became associated with headaches. Headaches were nearly everyday and turned into migraines. Behavioral issues, dizziness when laying down (which was later diagnosed as Nystagmus) and finally her vision began jumping all over the place (she could see, then couldn't see) I spent 8 1/2 yrs going from dr. to dr. trying to get it all figured out before we finally got our first MRI which revealed a 2inx1in Arachnoid Cyst in the 4th ventricle and extending into the Foramen Magendie and Luschka. I went through two surgeon's who felt that this was not the cause of her problems before I finally found someone who would help. He also felt alot of her symptoms weren't caused by the cyst but he did feel that a cyst that size in area about as big as a quarter deserved some treatment and hopefully would provide relief. She had a craniotomy to fenestrate, couldn't remove b/c it's to attatched, but hopes that this will do the trick and we can avoid a shunt. Immediately following surgery all those "unrelated symptoms" magically disappeared. She's doing amazing and finally enjoying life. Please if you have symptoms don't let them tell you they are unrelated, obviously check to make sure there is no underlaying cause but don't believe that it's all in head (technically it is...it's called a cyst). There is a wonderful website with lots of info and full of members suffering from Arachnoid cyst. We are here to help and support! You can find helpful info and doctors that have been a help to us. Check it out! It's an amazing group of people raising awareness and supporting each other!

***edited by moderator*** web addresses not allowed

Hi,i am 23 yasrs old and i have been having headaches since i was 20,i just had an mri and my results were....i have an INFLAIMED NERVE,and i also have a small CYST near it.i have to go in for another mri to see how thats going in three months....my inflaimed nerve has caused me to develope a condition called bells paulsey,i have had this since march.i have been experiencing long lasting headachs,and facial pain....if anyone has any advice or can help me in any way that would be verry helpful.....you can e-mail me at

***this post is edited by moderator *** *** private e-mails not allowed **
Please read our Terms of Use

I had one in the left side posterior fossa. I was having dizzy spells, loss of motor skills in left hand, head aches, migranes, vision problems, aches in my teeth. It was diagnosed after two years of seeing every specialist the military could send me to, and then a family phycisian in private practice outside the military ordered an MRI of the brain and there it was and 3cm large. The nuerologist sent me to a neurosurgeon and he wanted it out right away. They did a craniotomy and removed the cyst. Recovery was hell and I could not walk for a few months due to the dizzyness. I still have facial numbness, and loss of hearing on left side. I get pains where the surgury was, but for the most part feel better.

Good luck

I was diagnosed in October 2010 by CT. It was one inch. then i had an MRI done 2 1/2 weeks later and it grew to almost 2 inches by 2 inches. they said there wasn't anything to do about it. i have read that it can cause death if it busts around the spinal cord. my cyst is on and beside my brain stem.

I was diagnosed with a very large posterior fossa arachnoid cyst in 2004 and had a cyst fenestration in 2005. Four months later I had a shunt placed and subsequently my shunt overdrained. This caused brain sagging and a chiari malformation (where the brain stem herniates into the spine). I have lived through a lot. I live with a variety of symptoms from all of the problems and have had to find a new normal.

I have written a book on my experience and my journey and it will be out this fall, 2011. It is titled "It's all in Your Head," and I hope that it will help others who are on their own journey with a brain cyst or any chronic medical condition. I also have a blog that I give and share information regarding my experience and knowledge on brain cysts. You can follow it at ***edited by moderator*** web addresses not allowed
I wish everyone health and happiness. And most of all, pain free days.

One thing that has not been mentioned is seizures when it comes to posterior fossa arachnoid cysts . I am 35 and have a pea sized posterior fossa arachnoid cyst on the left cerebellar hemisphere. I started having seizures after an allergic reaction to a new medicine and when I continued having seizures after the medicine was out of my system my doctor had a ct done, nothing showed on that. Then we went on to an MRI and that's when the cyst was found. I'm also prone to headaches, dizziness, loss of balance and weakness on my right side when I've had a seizure.

Hi,

I have to disagree with the medical student's response. I was born with my posterior fossa arachnoid cyst. It was discovered originally at the age of 22. Over the years, it "did" grow so that by the time I was in my mid-thirties, it was a lot bigger. I was told by my world reknowned neurosurgeon that these cysts are known for building walls making the cyst, multi-septated. The CSF (cerebral spinal fluid) finds it way into these walled-off areas but cannot find its way out, hence, causing the cyst to grow. My cyst was more than double its original size by the time it started to show signs. The pressure was building and building by the time it was re-discovered, and it had begun to put pressure on the brain stem and cerebellum which gave me a lot of symptoms.....horrible symptoms; including, loss of memory, cognitive skills, I couldn't think straight at all....nothing made sense - I had terrible confusion. I had numbness throughout my body, primarily when I laid down due to the cyst putting pressure on my brainstem. I had terrible sleep apnea too. My neurosurgeon, Dr. Robert Spetzler, said that everything I described was exactly what these cysts can do. When he went in to fenestrate my cyst, over 200 cc's of fluid poured out. He said that I was under tremendous pressure. Ultimately I had to have a shunt placed to keep the pressure from building, and this was because the cyst had gotten so large that it pushed my brainstem downward and my cerebellum which then caused a blockage of the CSF's normal flow down the spine. Had the doctors I saw when my symptoms first started, had recognized all my symptoms as being related to the cyst, my neurosurgeon says that I could have prevented a lot that I had to live through. They could have operated before it had grown so big that it did the damage it ultimately did. But no o ne would believe me and no one wanted to tackle the problem. They also simply, "did not believe me," when I knew my body best.

I think, personally, that doctors get too fixated on the fact that these cysts are normally, and "should be asymptomatic" and "should not" cause problems. They don't want to think "out of the box," and think how they "can" and "do" cause problems for some. I have an uncle by marriage that was diagnosed with a brain cyst years ago. It was discovered by accident, and has, to this day, never had any symptoms or problems with his. He is nearing 70 years old and still lives symptom-free. I was not that lucky. There are many people who do have symtpoms from their cyst, and I think that there is no way of knowing who is going to have problems with their cyst, nor "when" they will. It can happen at any time and at any age.

I have written a book about my experience titled, "It's all in Your Head." It is due to be out (released) this fall. It tells my story of how I was diagnosed, and follows my story of what I went through with it....my diagnosis, my first surgery, my second surgery to place the shunt, and then all the trouble I had with my shunt and was ultimately diagnosed with brain sagging and a chiari malformation due to the shunt over draining. I hope and pray that my story helps others. "It's all in Your Head" will be out in the book stores in the fall. I will keep everyone updated.

Maria

I am 54 and my  posterior fossa arachnoid cyst was found in an MRI of my brain in 2010 because I was having a lot of vertigo and headaches. My Neurologist says not to worry about it  but I do. Especailly when I found the following information from the Mayo Clinic:

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 wreak havoc on the entire body.

This sure could explain a lot of things over the years, and I have an appointment with The Mayo Clinic in Rochester, MN.