Arachnoid Cyst Support Group Join this Group

Welcome and Introductions

By Pat Elliott Expert HERWriter Guide Blogger August 7, 2010 - 8:24am

Hi and welcome to the Arachnoid Cyst support group! This is a place where those who have a cyst, or are caring for a family member, can come together to share information and provide support for each other. This is YOUR group and the activities and content will depend on what's on your minds, the questions that you'd like help with and the tips you think will be of benefit to others.

I'm starting the group because, as an EmpowHER Moderator, I have seen many of you mention how hard it has been to find 1) information and 2) other human beings with the same condition. While I do not have an arachnoid cyst, I do have a rare form of cancer (chronic myelogenous leukemia) and I know what it's like to have to search for reliable information and what it felt like the first time I actually met another person with my same condition.

I sincerely hope this group will help all you feel less alone, just as I have found the online groups for CML patients to be of great benefit to me.

Please feel free to introduce yourselves and let us know what you'd like to accomplish with this group.

Take care,
Pat

Empowered

By Pat Elliott Expert HERWriter Guide Blogger October 19, 2010 - 5:08pm

Hi Maria and welcome to the group. Since EmpowHER is a site for adult women most of the people who come to our site are concerned about adults but we do have a few mothers of children with cysts.
You may also want to check out the Arachnoid Cyst Awareness Network whose founder is an EmpowHER member. You can find information at http://arachnoidcystnetwork.com/acanetwork/home.php

We look forward to hearing from you and sharing with you.
Pat

October 19, 2010 - 5:08pm

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By ChrishesMomma October 19, 2010 - 12:37pm

Hi all!
My name is Maria and my 3 month old son was just diagnosed last week with a 5.4 x 7.8 x10 cm arachnoid cyst. It is the size and shape of a lemon and is in the left cerebral hemisphere. It is squishing it brain over into the right side which is causing hydrocephaly, a block of flow of CSF and intercranial pressure. Fortunately, he has not presented with any neurological symptoms as his fontanel is still open and allowing the brain to expand. He will be having his shunt put in this Thursday or Friday at CHOP and his neurosurgeons are Dr. Storm and Dr. Sutton. Although I'm scared and unsure of what the future holds for my baby, the Doctors remain positive and think he will have a normal life with no restrictions. I would love to hear from anyone and everyone but am really eager to hear from other parents of young children who unfortunately are also going through this to trade stories and provide support for one another. If other younf children have had shunts put in, I'm curious to know what to look for during recovery and if there were any complications (I hope not :( ) The Dr. told me it is a 20 minute procedure with a 2 day max stay in the hospital. Sounds too good to be true!

Thanks for your time and help in advance and hoping you or your loved one is at peace!
Maria

October 19, 2010 - 12:37pm