Posterier fossa cyst?

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

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:
http://arachnoidcystnetwork.com/acanetwork/home.php

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

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.

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

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.