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my daughter has a posterior fossa arachnoid cyst in the brain

By November 16, 2010 - 9:01am
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My daughter who is now 22 & was diagnosed with a posterior fossa arachnoid cyst earlier this year. It is at the top of the spinal cord, sprouts off the top of the spinal cord in the skull behind the brain stem and behind the cerebellum. It has exerted enough pressure to cause changes in the bone behind it. It is about the size of the tip of the fore finger (several cm). She has severe adhd, overly accute hearing, dizziness at times, extreme fatigue, increasing back/neck/tail bone pain (she has moderate scoliosis which developed in adolescence), feels uncontrollably cold on a daily basis, reports nausea, sleep problems, excessive thirst, blood sugar problems and has frequent anxiety. The neurosurgeon, and neurologist we've seen say that none of her unusual sympstoms are due to the arachnoid cyst as it isn't invading any brain structures. When asked why it would produce changes in the bone at the back of the skull I was told it was due to pressure. However, they deny any effects from this pressure. I have watched my daughter struggle with so many issues and they are worsening. Ideas?

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We heard from another user who is dealing with a brain cyst. Here is what she wanted to tell you: "...keep seeking advice and the knowledge of doctors. Just because one doctor does not agree with a certain finding, doesn't mean another will. Sometimes the only things we have are our judgment, common sense and, gut feelings. Despite being told over and over againt that m sysmptoms could in no way be related to my cyst, I just knew they had to be. I began to take these doctor's diagnosis' with a grain of salt, and pursued my quest to find someone who knew without a doubt that these cysts were capable of what I was living with. I found him.
These cysts, any brain cyst, is rare. So many doctors do not fully understand them and what they are capable of that it may take seeing several to many different doctors to find the one who knows...who gets it. My suggestion would be to not give up, especially if you think or are questioning whether or not the cyst could be a role in the symptoms her daughter lives with. Neurosurgeons tend to be the most knowledgable in brain cysts. Neurologist typcially just do not have the training in brain cysts that neurosurgeons do. If it were my daughter, I would start my hunt to find a neurosurgeon who has a lot of experience in brain cysts. I would also start a diary of her daughter's symptoms, documenting everything from frequency of a symptom, degree, etc. Anything you can think of to write and document is helpful. The more you have documented, the easier it may be for your doctor to piece the puzzle together.
Good luck-
I hope her experience can be helpful for you. Let us know how else we may be able to help and how you're daughter is doing.

March 11, 2011 - 7:14am
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Concerned Mom - Thanks for sharing your story and your concern for your daughter. As Alison mentioned we've heard from several others who have been dealing with arachnoid cysts, and you may find it helpful to read their posts.

I would also like to invite you to join our arachnoid cyst support group which you can find at https://www.empowher.com/groups/arachnoid-cyst-support-group and also recommend a support group founded by an EmpowHER member, the Arachnoid Cyst Awareness Network, which is at http://arachnoidcystnetwork.com/acanetwork/.

Several patients have described symptoms like your daughter's and have worked with doctors who told them that the cyst did not cause the symptoms as well as doctors who helped them. You will likely be able to get good information from other patients as well as information on physicians who specialize in this area. We wish the best for both you and your daughter.

Take care,

November 16, 2010 - 5:08pm

I am so sorry to hear that your daughter is struggling with so many issues. Would she find this information helpful (they are stories from a woman with a similar condition):

- Posterior Fossa Arachnoid Cyst
- Rare condition has wreaked havoc on my life...
- Need Support for posterior fossa arachnoid cyst

November 16, 2010 - 2:32pm
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