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!
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I have a friend who was driving over to get his tires rotated on his car Dec, 7 2012. He started getting the Mother of all Headaches and it was as if the shades were being pulled down. He had a seizure luckily he was going at idle speed. The MRI and CT Scan revealed that he had Hydrocephlus and an Arachnoid Cyst. By the way one PA decribed it. The cyst is at the back of the brain. The doctors put him on 750 mg of Keppra twice a day. He did not like the side effects so eventually they weaned him off. He was off Keppra then on April 21, 2013 he had another seizure at church. So they put him on 1000 mg of Keppra twice a day. This seemed to help but on August 4th. He had another seizure so they put him on 1500 mg of Keppra twice a day. He switched neurologists to one who specializes in Epilipsy. This friend is taking 100 mg of Lamotergine twice a day and 500 mg of Keppra twice a day. So far knock on wood he is doing well. Also he did a comparison between the three seizures and he did have Caffiene, with all three seizures, With the first two he had stress and also was putting artificial sugar in his coffee. Since then he has cut down on the caffiene, quit the artificial sweetners, and make sure he drinks more water.
February 10, 2014 - 8:35amHe has been cutting down on the processed foods he eats. Other then that is there a diet he can go on ? Are there certain foods we need to avoid
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I too have recently been diagnosed with arachnoid cyst on the lower right side of my brain. I have a childhood history of spinal meningitis and hydrocephalus, not sure if it has anything to do with it. I am 47 and in recent years I have suffered from severe depression and Panic Attacks, I have also been diagnosed with Fibromyalgia due to my widespread bone, muscle and joint pain. Waiting to go for the MRI as soon as the preauthorization from the Ins. co. I don't seem to have the courage and positive attitude I once had, been out of work and in pain since August 2010. Hoping resolving this problem will bring me back to my whitty and happy self. Unrelated but adding to my issues is neck and lower lumbar disc issues... Just want to be able to pick up and carry my grandkids when they come along... Thanks for giving me a place to share my thoughts.
March 21, 2012 - 11:19amThis Comment
Hi Larry,
I was reading your post and you sound like you have some similarities to my situation. I have a very large cyst as well, though mine is a posterior fossa arachnoid cyst....on the back of the brain and measures at least 1/3 of my brain size. It takes up the entire back postion of the brain and wraps around to the right. I had the cyst fenestrated in 2005 in Phoenix at Barrows Neurological Center and had a shunt put in 4 months later. Mine was too large to remove, unfortunately.
Months later my shunt overdrained, due to certain doctors and their refusal to listen to me, which caused my brain to sag and for me to develop a chiari malformation.
All of these problems cause me to live with pain, terrible balance problems, vision disturbances, fatigue, my short term memory is shot. I could never work outside the home again either, nor can I fly. To add insult to injury, I just went through a divorce this past year...my ex-husband (not to go into it too much), but he lost his compassion for what I was left to deal with and it all only increased his anger management issues, his drinking etc. So now, on my own and living with my symptoms, I am a single mom of two boys....10 and 13. It's been a tough time. I lost my health insurance due to the divorce and had to wait 6 months before I applied with Inclusive Health of North Carolina, which I just got two months ago.
Now....to add insult to injury, I think I may be having night time seizures. I have to sleep on my right side only. If I sleep on my back or left side, I get the symptoms, so need to see my doc.
I wrote my story and just had it published this year. It's called "It's all in Your Head," and is available through Barnes and Noble and Amazon. I wanted to help others who may be going through similar situations. Maybe you will want to read it sometime and hope it will help to see that you are not alone.
Anyway, I feel your pain...literally. Everything you describe, I can relate to. I don't know many doctors on the east coast...I go to Duke, myself, to Dr. Allan Friedman. Duke is an awesome facility and have wonderful docs there. But I know how hard it is to travel.
I started this following on brain cysts here on EmpowHer a couple years ago because I know how alone I felt going through my situation in '05, and there was no where I could find online, to get answers or communicate with others about it.
I would love to hear how you do and what type of treatment you find. Maybe you'll get my book and hopefully it will help you relate and give you hope. Please do keep in touch and update. Godd luck to you and God bless!
Maria
December 14, 2011 - 4:45amThis Comment
Hi, My name is Larry I'm 49 years old and I was diagnosed with a large arachnoid cyst in Feb of 2011. It is in the left middle cranial fossa. It measures 6.6 x5.4x9.5 cm. I have had surgery and had a vp shunt put in in March of this year. I also had sinus surgery in May of this year. I am still in extreme pain, headaches every day and can not do much. The Dr told me today that I should expect my pain level to only be reduced to a 5 or 6 out of 10 and that I would never be able to work again. I have had the shunt adjusted several times but I have not found that to reduce the pain to an acceptable level. On a scale of 1-10 I am probably at between a 6 or 7 most of the time. I was a carpenter and have lost the ability to measure and calculate figures accurately. I have short term memory trouble and I feel like I am very easily overwhelmed. It has also made me have an almost explosive temper which is very unlike me. I thank God for my wife that she has been able to put up with me and take care of me through this horrific ordeal. I lost my insurance a few months ago so now I have no other choice but to be on NYS medicaid. I found the Skull Base Institute in Los Angeles California which actually completely removes these large cysts. Does anyone know of anyone in NY that will do that same surgery. NYS medicaid will not allow me to go to CA. Also I have heard flying can be a painful experience for someone with an arachnoid cyst. Thanks for your time. Larry
December 13, 2011 - 6:38pmThis Comment
Does anyone know if a returning arachnoid cyst of the posterior fossa acts the same as the first time...are symptoms the same or different?
December 5, 2011 - 8:40pmThis Comment
Hi,
I read your question and my answer to that is yes. I had returning issues and everytime mine started acting up, the symptoms were even worse than when it first came about. I know everyone is different...but that was my situation and my story.
Good luck to you.
December 6, 2011 - 7:13amMaria
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I live in Sydney Australia, my 20 year old daughter has just been diagnosed with an arachnoid cyst. she started having symptoms at the the age of approx. 11 years old. My family doctor didn't take it seriously and had her take an x-ray, of course it didn't show anything and my family doc put it down to that she had a problem with her glands. You would think him being a doctor that the next thing to do would be having a CT scan to see if the problem exists under her skull.
For the last 3 months she lost most of her vision in her left eye as well a visual lump that seems to have gotten bigger. I went to 3 doctors who didnt take it seriously and made her do a ultra sound, of cause nothing abnormal showed up. It took 2 more doctor appointment to finally one sent her to have a CT scan. And there it was almost 5cm x 3.5 cm, it was scary as i didn't know much about these cyst. In my daughters case the cyst has actually pushed on the skull making it protrude which makes her look like she has a bump just above her eye.
She got put on a waiting list to see a neurosurgeons approx. 6 weeks. At one time she had so much pain that she ended up in hospital at Westmed, they had so many people ahead that they just gave her a needle so she could stop vomiting and 2 prodene tablets and we went home. Since then I have taken her to Concord hospital, they were more humane about her condition. She has since seen a neurosurgeons. At her appointment, his concern was more for her eye sight problems, trying to avoid talking about her cyst.
Reading stories on the internet prior to her appointment left me feeling that this wouldn't happen in Australia, surly if you are have an appointment with a neurosurgeon it means that surgery is the only option left. He came out and told us that he was not thinking of offering surgery as an option, just by looking at the scans. He made her feel that the discomfort and pressure could not be caused by this cyst. I asked for pain relief since him being a specialist in his field and he could not offer any, that she should go and talk to her family doctor. He did offer her to have an MRI, but that is 6 weeks away. I have done one recently privately, and it gave the exact size being 40 x 35mm, slightly smaller. Does anyone know any doctors in Australia who have knowledge and have personally dealt with arachnoid cyst, i would really appreciate any information for my daughters wellbeing. God bless.
May 19, 2011 - 11:15pmThis Comment
I would seek out neurosurgeons at Children's National Hospital's neurosurgery team or Boston's Children's Hospital where they have a team of seven pediatric neurosurgeons some of whom have expertise in arachnoid cysts. Also Boston has a thing called Grand Rounds where you can obtain an opinion and a plan for her care and it is done all online. You upload your scans that the hospital can provide you and all her records, then I am told that the entire team of neurosurgeons reviews your case at one time together. Once they recommend a care plan, you may have to travel to Boston for treatment. I think you go to where the best pediatrics nuerosurgeons practice even if it is inconvenient. My child has a large AC and we are doing this for our son.
Good luck.
February 19, 2016 - 8:31pmThis Comment
Well Nov 8th, my consultation at SkullBase....I'll keep you informed...finally a light shining in the darkness....
October 26, 2010 - 7:06pmThis Comment
Hi Ray - Glad you're getting a consult and hope it goes well. Keep us posted, and let us know how it goes ! Pat
October 27, 2010 - 5:05pmThis Comment