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Arachnoid Cyst of the Posterior Fossa
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Arachnoid Cyst of the Posterior Fossa

My 8 year old son as a large arachnoid cyst in the posterior fossa.  MRI confirms that it is in excess of 10 cm wide (they did not actually measure at its widest point but it is virtually from ear to ear) and 7 cm deep and it is applying some pressure to the cerebellum.  The cerebellum is towards the center of the brain rather than resting in the back where it should.

He has no real neurological problems and is actually extremely gifted.  He has suffered from severe headaches with vomitting about 3-5 times and month and less severe headaches daily.  The first neurologist indicated that we should forget about the cyst and that his headaches are migraines.  This doctor said that arachnoid cysts do not cause headaches and they do not grow.  This neurologist prescribed Topomax (topamax) to treat the migraines, which we tried while waiting for our second opinion appointment, and we have since stopped taking it.  Topomax (topamax) slowed his cognitive ability and his IQ dropped from a 158 to a 135 in a matter of three weeks.  He was very frustrated with this onset of confusion and inability to process information as he always had.

The second opinion neurologist advised us to stop the Topomax (topamax) and try a different migraine medicine. We are happy with this medicine because there are no side effects.  The severe (8-9) headaches that caused vomitting have decreased in severity and frequency.  He now has maybe one severe headache a month and it generally is only a 7.  He does, however, continue to have the "everyday" headaches (3-5) and those do not seem to be aided by the medication.  The second opinion neurologist wants to monitor to be sure it doesn't grow and wants to treat for migraines first and then see if he is responsive.  Because of the size of the cyst, there is a possibility of headaches and other symptoms.  If he is not responsive to migraine medicine, the my consider surgically treating the cyst.   Our follow up appointment follows a 6 month wait and is schedule for mid-October.

Meanwhile, he has reported to me that he is having difficulty reading.  He has always scored in the 99.9% in testing and is a very advanced reader.  This is new to us.  He says that he finds the words confusing, as if they appear to be different words than they are.  At first, I wondered if he was just reading to quickly and guessing what the words would be rather than actually reading them.  I told him to try slowing down as he read.  Since then, both his teacher and his school nurse have reached out to me with concerns over the same.  

I'm not sure if this is something that could even be related to the cyst?  

Any help/information you could provide would be very much appreciated!
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Avatar_m_tn
i dont know much about cysts, but i recently found out i have a small subarachnoid cyst of the posterior fossa.  so far i havent found any evidence whether or not this causes symptoms.  however i have developed progressing symptoms over the years which is why i got the cat scan.  i dont know if this is related or if this is something i always had, or is new.  sometimes people are born with them thought.  when i was 5 i was diagnosed with diffuse cerberlar dysfunction and adhd.  later they called it aspergers.  when i was 15 i developed psychotic and parkinsonian like symptoms.  i have also had seizures.  now im sleeping about 18 hours a day and have no energy to do much of anything.  however keep in mind that i may have something else not at all related to this because autism runs in my family which would seem that it is unlikely a cyst would genetically run in my family showing up in the same spot in the brain everytime.  tommorow i am going to the neurologist.  they will try to rule more things out that it might be such as wilsons disease.  i will let you know if i remember to repost what they say.
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1154293_tn?1271265798
Despite your doctors' claims, Arachnoid Cysts can cause the symptoms your son is having and AC's can grow.  I have a 5x5x9cm sub-arachnoid cyst that afects my mid-brain and cerebellum.  It's hard to tell if I even have a cerebellum when looking at my films.  I recommend you join the Arachnoid Cyst Friends group on Yahoo, the Arachnoid Cyst Awareness Network on the web, and the AC group on FACEBOOK to communicate with others who have AC's or have loved ones with AC's.   Most of us had been told that AC's don't cause symptoms because medical students are taught this in school.  In reality, there are many symptoms including:  headaches, lethargy, vomitting, eye misallignment, vertigo, tingling, mood changes, irritability, motor skills difficulty, dizziness, etc.  MY AC caused hydrocephalus, eye misalignment, poor motor skills, headaches, vomitting, etc.

Mark
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Avatar_n_tn
I to am surprised your first doctor told  you that this posterior fossa subarachnoid cyst did not cause headaches, or migraines.  I have suffered migraines most of my life, and had a CT scan that found this same type of cyst on the back of my brain too.  It is said we are born with them and they are formed in the uterous.  While the my cyst was found over ten years ago, other than the migraines, they are now just putting together other symptoms I have had which had continually grown worse over the years to be caused by this.  I have no appetite, I have almost always had to force feed myself but never know what to eat because there is no appetite, I have a radical heart rate change from laying to sitting and then to standing,  I get dizzy from this, I still have the migraines which often cause me to throw up, I get forgetful.... all sorts of things.  There is another site that explains this cyst well.  It can be found at: http://www.********.com/community/share/posterior-fossa-arachnoid-cyst-cyst-grows-back-brain-it-can-compromise-cerebellum-an....  The pertinent information in that article is:  "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."

I am glad you got a second opinion, and I hope this helps you further.  The good news is, with all the research I have done I find no report of death or a death rate from this.
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