Hello everyone i hope im posting in the right place
A month ago i was diag with the above cyst ive had headaches most of my life
And recently they have gotten worse now im vomiting passing out weakness on one side of my body and unable to hold a job. Ive been to a university hospital an they give me the run around one neuro surgeon actually chuckled wen he told me i had this my whole life. Now im back in another hospital been here 5 days this surgeon talked about surgery then changed his mind now im a lab rat for seizure meds this one dont work lets try another what can i do to get this fixed i understad the risks but i would give anything for even a hint of a normal life

Broken down in missouri

Hi there Gulfwardoc, and welcome to NeuroTalk.

I don't have the same condition that you do, but we have other members who post questions about their own Arachnoid Cysts.

Although it's quite OK to post here in this forum, I think you may get more feedback in either of the following 2 places .... or even both for more exposure. I did a quick search and found information about the cysts here:

Arnold Chiari Malformation & Syringomyelia : http://neurotalk.psychcentral.com/forum71.html

Hydrocephalus : http://neurotalk.psychcentral.com/forum14.html

Here's the results of the search I did for you. You might want to go through and see if any of their questions and answers offer you any assistance. http://neurotalk.psychcentral.com/se...arachnoid+cyst

Yes, those types of cysts are the type that are known to have been around since birth, but if they are causing symptoms, well, that means a change is afoot.
They used to drain them but then they just refilled (like any cyst) but now they remove all or part of the outer membrane so it cannot re-form.
If you check around, you should be able to find a doctor who is competent and will know how to treat it.

I had a posterior fossa Arachnoid Cyst, and I eventually had fenestration surgery 12 years ago. So, I know about the pain and other problems they can cause! Many Neurosurgeons/Neurologists say they have been there all your life, and that is mostly true, but they can grow over the years and eventually cause many problems, like you are having now.
You need to try and find a Neurosurgeon who will take you and your symptoms seriously, and possibly operate. But I know that is not always easy, and I can't really help you with names of good neurosurgeons, because I live in Australia.
Best wishes,
~Jaime~

Hello--my name is hutch and I am new to this site. I am 49 years old and they first found my posterior fossa arachnoid cyst back in 92. 2 years after I had a cervical laminectomy. They also told me that I probably had this since birth and it was not the cause of my problems. I have always had migraines since a child, mostly brought on by heat or exersion. I always had ear pain--writers cramp--and mood problems. In the past 4 yrs or so I have developed many new neuro issues. I have been diagnosed with partial epilepsy, cervical dystonia, vocal cord dysphonia, mieniers disease and possible Meiges syndrome---also of note I got bells palsy in 1980 after the birth of my first child. In my research I have found there is a link between my arachnoid cyst and my facial palsy. A few doctors over the years questioned whether it was bells, because I never recovered from it. I spent 23 years trying all kinds of anti depressants---and none of them worked. I am now on Lamictal (anti-siezure). I feel better then I ever have, but not 100% but much better. It took all this time to find out I was having seizures. I have been going to John Hopkins for all my neurological issues and am being followed by a Neuro surgeon there. I just saw him a week ago for a follow up MRI. It has not changed in size. I asked him how I have a golf ball size cyst in my brain---a whole slew of neuro problems--yet nothing is connected to each other. My surgeons response was: There is a big piece of the puzzle missing with me, and right now he does not feel confident that he could help me because the harm he could cause over rides the benefit that would occur do to the surgery. He said brain surgery is not a piece of cake and I said---either are my symtoms. The surgeon said that at another time the puzzle piece might jump out at him and he may feel differently down the road?? This has all been frustrating, so I certainly know how you feel. I love John Hopkins---they have been wonderful to me, and have worked hard to figure me out. I was recently told about the Chiari Institute which is located around the country. I live in PA so I would go to the one in Great Neck NY. I have a call into them to see If I could make an appointment. All the do is work on malformations of the brain. I don't know if you have a place like that near you? The reason your doctor changed his mind might be because it is a very bad location on your brain and is dangerous. I agree with you---I would be willing to take the chance just to possibly have a somewhat normal life. I wish you all the best--Keep in touch and I will let you know if anything comes up positive with my AC. Take good care----hutch