Hi,
I have started my own blog and want everyone to know about it....it is www.arachnoidcystsupport.blogspot.com
Please follow me on arachnoid cyst questions, answers and concerns. You can email me with quesitons, too. I am a fellow arachnoid cyst survior. I have a very large posterior fossa arachnoid cyst, as well as now, I have a chiari malformation and my brain sags. My brain cyst was diagnosed back in '04, I had my surgeries in '05, and my brain sagging and chiari developed in '06.
These last two developments are due to my shunt overdraining for 6 months. I am a survivor! And now I have lots of insight and knowledge in the world of brain cysts. You can learn new information, get tidbits of news, and ask questions.
Please visit!
Thanks!
All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.
Add a Comment127 Comments
Hi Lee,
August 5, 2010 - 7:20pmWow! What a list of symptoms you've been enduring! Just sounds miserable. There is nothing more unnerving than having an array of weird symptoms with no one to put a name and/or pinpoint their origination for them. I remember that all so well, like it was yesterday. I too have been having weird symptoms lately. I have been under such a tremendous amount of stress, and am now sure that that was what was causing this, but for a few weeks I was getting what I think are nocturnal seizures. These would only happen at night, but when I slept, all of a sudden it would feel like someone was ringing my brain out. It would start at the base of the brain and move upward, this twisting feeling, my head would shake uncontrollably (not too hard or fast) but this bobbing (as I describe it), and then I would get extremely dizzy....even though I was lying down....just this room spinning dizziness, and then I would feel very nauseas and weak!! I could hardly walk. I was so scared, for about a week, to even go to sleep, so that I was losing sleep and feeling even worse due lack of sleep. They finally quit (knock on wood) about a week ago....but I have been under so much stress....finished my year long medical billing course, did a 3 week internship, packing a 3-story house alone, taking care of my boys, and am supposed to move this weekend. I'm not surprised that I was having something weird happen to me. My body was simply and is still...so exhausted, that it was giving up and out on me. The separation/divorce is stressful in itself, but to add all the other things to it, it almost unbearable. They scared me though. Especially when they happened on nights when my boys were with their dad and I was alone. I just keep trusting God that things are going to get better and easier.
Keep us posted as to what happens with you and I'll be interested too, to know what they find. Cysts are very peculiar things and cause similar problems in so many people, yet very different symptoms for individuals too. I'm sorry you're having to deal with these.
Talk to you soon and feel better-
Maria
This Comment
hi maria, until this morning i just haven't been myself and doing my best to not let on to others just how crappy i feel right now tho i'm not fooling my husband or mom. all my symptoms and the physical grief aside, i am somwhat stressed by our truck finally being paid off only to now have engine problems which we can't afford to fix. its a diesal which says it all. maria, what you descibe begining at the back of your head. was it painful like i describe? Come monday i'm looking up that dr in frisco. its closer to us and i'm done with trying to find a dr who does recognize. i found this one on the arachnoidcystawareness site. they also listed several others including the skull base instiutue in la. until the latest painful symptoms prsented i admit i was content to just leave well enough alone but i cannot fathom tying to live the rest of my life stuggling with headaches if you can call them headaches. nothing like i've ever experinced before. i get that feeling too sometimes that others decribe of my head bobbling, being to heavy for my neck to support or is it that my neck is suddenly weak and stuggling to support the weight of my head? not sure there. fatigue is plagueing me too off and on but i'm doing my best to grab all that i can of each day i wake to. i know God is with me which comforts me too and makes each day that much more of a blessing,. i'll be praying for you hon and hoping that life begins to settle down for you and each of us. take care n God bless lee
August 7, 2010 - 11:56amThis Comment
Hi Lee- So sorry to hear what you're going through. Please keep up posted. Pat
August 5, 2010 - 6:54pmThis Comment
thanks pat . tahke care lee
August 5, 2010 - 6:56pmThis Comment
Hi Deb,
Keep me posted on what happens and what the doctors say. How large is your cyst and where is it located? I don't understand these cysts because mine hasn't grown in three years and I felt great for about one year and now I have new symptoms. I'd be interested what your neurosurgeon has to say about these cysts, meaning can they stay the same size and patients develop new symptoms. If you find any of that out, let me know. If anyone else out there knows anything about that through a doctor or research I hope you respond and share.
Take care,
Debbie
August 5, 2010 - 6:24amThis Comment
Debbie, Since April 10th when the ac was discovered because of a dirtbike accident, we have been speaking with several neurosurgeons and neurologists at Barrows. The answers they give us often disagree with one another, and this week the neurosurgeon finally said they really don't know much of anything about these cysts for a certainty (and she specializes in these with papers published on them). So it seems we are in a world of theories - hence there are people pushing for more research. The neurosurgeon really feels my son was born with this cyst - but again she can not say with a certainty tho she is pretty convinced. Other than migrain like episodes starting about 5 years ago - in the beginning we could not point at other symptoms but in hindsight my son now relates things he thought as normal since he had them as long as he can remember. They don't know when it grew so big - are was it always this large? The past year he lost his full scholarship, said he couldn't read, study, remember, became more angry, etc. He also has told us for several years that he had something in his head. His first neurosurgeon told us the migrain episodes were nothing like migraines, that it was the cyst, etc. However, now after surgery the horrible episodes he now has neurologists are saying that he has always had migraines and the migraines had nothing to do with the cyst (even tho they contribute his current symptoms to the remaining large amount of fluid). So I write all this to say that we have had many conflicting answers. The greatest help in all of this has been the books I have read having to do with mild brain injury, after brain surgery, etc. which come from people's actual experiences.
August 5, 2010 - 11:23amThis Comment
Just wanted to make sure , you ladies did not have a problem with me, a guy, here on your blog...let me know if its a problem...ty
August 4, 2010 - 5:43pmThis Comment
Welcome Ray. I've been off a couple of days or I would have welcomed you to the site when you first posted. We're glad to have you with us. Pat
August 5, 2010 - 5:15pmThis Comment
Hi Ray, "I" don't have a problem with it. The more the merrier as far as I'm concerned. :)
August 4, 2010 - 6:27pmThis Comment
ty deb
August 4, 2010 - 6:41pmThis Comment