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Posterier fossa cyst?

By September 21, 2010 - 11:51am
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I have a 16 year old with no previous health problems but acid reflux and asthma. She was in a car accident in June 09 and started having major headaches! I took her to her PCP and they said it was post concussion headaches that can last up to a year. Take 800mg of Motrin every time she got a headace. Well the motrin wasn't helping. We had a CT scan done in July 09 since the headaches were getting to be everyday all day. Well something came back on the CT so they sent us to have a MRI in Aug09. By this time she was having headaches so bad that she had what I call the "drunk walk and talk" she would walk to the side and slurr talking and even blackout on a drop of a dime. Well when we got the results back from the MRI the said it was a posterier fossa cyst nothing to worry about she has probably had it all her life. Sometimes they grow and sometimes they dont. So my first question was is that what is causing her headaches. The dr said no...So we went on our way taking motrin daily twice a day for like 2 months until her stomach just couldn't handle it anymore and it wasn't working at all. By this time we had been to the ER twice with such bad migraines she couldn't function and was passing out. The ER referred us to the neuro surgeon. The neuro surgeon said we want you to see a headache specialist and us. By this time we had three dr to see for her headaches. Each one says something else. One blames the post concussion and the other says cyst. It is starting to drive me crazy!!! She has since had to drop out of school and get her GED due to the headaches and the school suggested she drop out since she passed out in the hall like 8 times the first 2 months of school. She takes preventive meds topamax, and verapmil( maybe spelled wrong) daily and hydroxizyne (spelled wrong I am sure) for mild headaches and maxalt for major headaches. Everytime we go they up or down her dose due to side effects with them. The headaches are still weekly most of the time 4 times a week. It messes with her moods, sleep, eating, activity and overall physicall health. Can anyone please give me some advise as to what I can do to make this better for her. They keep telling her she will just have to deal with headaches the rest of her life. Is there anything they can do? No dr will give me a straight answer at all. They all want to blaim the other however post concussion headaches usually stop at a year and we are way beyond a year since the accident. Any advise would be greatly appreciated at this point. My other question is do they not do any blood work to test for cancer when they see these cyst on these kids brains? I mean my grandmother died of brain cancer but the dr said we go by the shape of it. REALLY? I am so lost and confussed ...

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EmpowHER Guest

my son has A fossa cyst on th left side of his brain sitting on his brain stem . a cyst is basically when damage has happened to the brain either by a bleed or something that happened during pregnancy .and it then becomes what they call a fluid filled space . (fossa cyst ) the normal trement for it is to leave it unless its causing medical problems then if it is they can put in a shunt to drain the fluid and relive the pressure on the brain. unfortantley for my son there is nothing more that can be done, as his is is sitting on his brain stem if he gets increased crainel pressure that pushes on his brain stem then he will die and its too dangerous to operate if your not happy with the way things are with your child fight untill you are because something has to be causing the headaches , good luck

October 6, 2010 - 1:06am
(reply to Anonymous)

Thank you ...i am so sorry that your son is having to go through this too. It is hard to watch a child be in so much pain. My daughters is sitting right at spot where the neck and head meet. You just reminded me I am not crazy for feeling like I do. Thank you!!! I am putting in a referral to get a second opinion and new treatment. Prevenative meds dont work on the headaches. They are only causing to many side effects. No child should have to lay in bed for 4 days like mine did last week with a headache. I pray that your son will be ok! I will keep you in my prayers...and thanks again for letting me know.

October 8, 2010 - 6:35am
Expert HERWriter Guide Blogger

Hi bratsmom - Thanks for coming to EmpowHER for information. It can be difficult to find information about arachnoid cysts but you've come to the right place as we have several members who are dealing with this directly or have children who have these cysts. You may want to join our support group which can be found at https://www.empowher.com/groups/arachnoid-cyst-support-group

In terms of finding information on physicians I suggest you join the Arachnoid Cyst Awareness Network, the founder is an EmpowHER member and is also a member of the support group. They can be found at:

You'll find these women and men are very supportive.
Take care,

September 21, 2010 - 5:11pm

I can understand your frustration, especially if the neuro surgeon is saying that the headaches are just headaches...but the only "treatment" is daily medicine to prevent the headaches. (and, the medication isn't working and is no longer covered by insurance). It is good to hear that they are "watchful waiting" for the cyst, so that does sound like it is being taken care of.

I will see what information I can find for you. Hang in there, and we'll talk again soon.

September 21, 2010 - 1:07pm
(reply to Alison Beaver)

thank you!

September 21, 2010 - 1:10pm

Is this the type of cyst she has been diagnosed with: https://www.empowher.com/community/share/posterior-fossa-arachnoid-cyst-cyst-grows-back-brain-it-can-compromise-cerebellum-an

September 21, 2010 - 12:20pm
(reply to Alison Beaver)

yes that is the one she has been diagnosed with.

September 21, 2010 - 1:03pm

I am so sorry you, and your daughter, are going through this.

I will see if we have any medical experts whom we can ask, even though you may not want another doctor's opinion. However, I am wondering what the headache specialist said specifically. What did the neuro surgeon say specifically? You provided general information that they are blaming it on post-concussion, or on the cyst. Either way, have they offered treatment options beyond medications that are not working effectively?

I will also conduct some research to see what I can find, just to add to your arsenal of information.

There are procedures that can remove cysts in the brain; has this been offered as an option? Please know that none of our medical experts would be able to tell you definitively if her disabling headaches are caused by the cyst, post-concussion, or some combination.

Lastly, have you considered getting a second opinion from either another neurologist or headache specialist (are they are neurologist as well?). I know the last thing you both want is another doctor in the mix, but from your description, it does not sound like you are being given treatment options.

September 21, 2010 - 12:19pm
(reply to Alison Beaver)

The headache specialist said they are stress migraines due to post concussion. The neuro surgeon said that headaches are not related with posterier fossa cyst. The neurologist said they are headaches and we need to keep an eye on the cyst. The only thing that they tell us is to take prevenative meds daily. They dont seem to do any good. Now her insurance is no longer covering maxalt so we don't know what that is going to do. They said it isn't growing but no one will give a straight answer on why she is still having major headaches. I fully understand that none of your sources can give me a definite diagnosis. I have considered getting a second opinion however I am not sure how to go about that or where to go in my area since we are at the Children's hospital here. Any suggestions would be greatly appreciated.

September 21, 2010 - 1:01pm
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