hello, my beautiful son has an arachnoid cyst in his left temporal lobe.
i didn't know until recently when he became very ill when it ruptured but he has been symptomatic for some time i just didn't understand until now. he is almost 3and a half.
he had a craniotomy fenestration 5 weeks ago in america and is more comfortable now. we are waiting to see if he will need a shunt.
i am trying to understand as much as i can about this condition and i would love to connect with others who live with someone, or they themselves, have a symptomatic arachnoid cyst.
i am a full time stay at home mother and a solo parent for 90% of the time. (my husband works in america, the children and i live in the caribbean). so i am with my son literally every moment of his life so far. and yet i didn't realize how uncomfortable he was for much of his life. i just unconditionally accepted him for who he was. i think he is amazing. but yes, different from any other child or person i have ever known in many ways.
i would like to have others to talk with who also love someone with this condition (even if it's yourself) and who can also express how they feel and experiences that living with ac brings.
thank you, namaste
my email is [email protected] if you would like to communicate privately. it would be great to talk with real people who are touched by this. i live on a very small island with not many people so my chances of meeting anyone who understands my awesome son or how he feels are slim! but it would mean alot to us. thanks!