Bang!Zoom! Posted July 15, 2011 Share Posted July 15, 2011 My daughter has a large arachnoid cyst in her brain. It was discovered thru an MRI. We are going to see a neurologist to learn more very soon. I have a list of questions to ask, have studied high quality documents on this condition. I try *not* to read too much on it, it tends to scare me silly with the "what ifs". Has anyone here had any experience or exposure to children with this condition? Quote Link to comment Share on other sites More sharing options...
*LC Posted July 15, 2011 Share Posted July 15, 2011 If you have to have something in your brain that doesn't belong there, an arachnoid cyst is one of the better things to have. Of course, there isn't a lot of extra room in the brain, so anything that is large and doesn't belong can cause trouble. Is your daughter having trouble? Is that what led to the MRI? If she is having trouble then a neurologist is the right doctor to see. However, if this was found by coincidence and she isn't having neurological problems, then you want to see an experienced pediatric neurosurgeon who specializes in brain surgery. A neurologist will not be able to tell you whether the cyst can be removed or should be removed. (Actually, neurologists will tell you their opinion, which will sound like fact, and is likely to be wrong. We've had a couple of brain tumors in the family, and whatever the neurologist proved to be wrong.) I may have a contact for you; I'll have to check if that turned out to be the diagnosis of someone child's I know. Praying for good news for your daughter. Quote Link to comment Share on other sites More sharing options...
Bang!Zoom! Posted July 15, 2011 Author Share Posted July 15, 2011 She was having headaches and I became concerned. She did have a infant condition of hydrocephalus in the same area; at that time it wasn't at a stage where any intervention was required. Just let it be. Same with this, they say, let it be. Her symptoms are not stacking one on top of the other; there is no trigger or pattern to the headaches. My understanding right now is that they will let it be *unless* there is significant progress or reasoning to either fenestration (removal via brain surgery) or if the size begins to press on vital areas and functioning. Hers is located in the mid left center area, so that is not close to anything vital but...if it should grow, the first thing that would show would be optic. I'm expecting them to just say "leave it be" and go on our merry way with annual scans. But really anything could happen. It is really amazing how large they can become and not be known until an MRI for unrelated issues is done. She'll be going to Seattle Childrens in a few weeks for a checkup and more formal reading of the MRI (with contrast) by a neurologist. I understand at this point it is the echo style reading which led them to the conclusion this is a arachnoid cyst and is benign in nature. I've read also that the blood vessels that lay on the surface of the cyst can be an issue as well. Her overall everyday life is normal as can be, no signs of anything being neurologically amiss or delays, things of that nature. I've read a lot of studies saying this is more apt to cause symptoms of ADHD behavior as the most common result. I believe we are scheduled to have an overview by a neurologist and not a pediatric neurosurgeon. Interesting you bring that up. I'll be asking about the why's on that. Thank you for any prayer time you devote to her, I am rock solid with the power of prayer here. Quote Link to comment Share on other sites More sharing options...
Little Nyssa Posted July 15, 2011 Share Posted July 15, 2011 May God bless her and you! I do not have personal or family experience with the arachnoid cysts, but I can say something good about the doctors you are going to see: If you see Dr Ellenbogen (neurosurgeon), he is excellent. Quote Link to comment Share on other sites More sharing options...
LizzyBee Posted July 15, 2011 Share Posted July 15, 2011 My daughter has a large arachnoid cyst in her brain. It was discovered thru an MRI. We are going to see a neurologist to learn more very soon. I have a list of questions to ask, have studied high quality documents on this condition. I try *not* to read too much on it, it tends to scare me silly with the "what ifs". Has anyone here had any experience or exposure to children with this condition? I don't know anything about these cysts, but I'll pray for your daughter. I'm sorry you have to deal with this. :grouphug: Quote Link to comment Share on other sites More sharing options...
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