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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How large was you cyst and where was it located? I'm a 30 year old female and started having headaches about a week ago along with nausea. I went to my GP and be told me it was stress and post partum (I have a 6 month old). I asked him for an MRI and I have a 7cm anachroid cyst in my third ventricle. I'm very scared. I just found out yesterday and I'm going to make appointments with a few neurosurgeons in my area. Any advice or questions you would ask?
December 8, 2015 - 6:26amThis Comment
I don't know the exact size in inches or anything, I'm sure it's in the mound of doctor info I have. But, it's roughly 13 c, I think, it's on the left posterior fossa, a little over the cerebellum. I don't remember a lot of details. That was another problem I've had since the first surgery was recall, especially details. My long term memory has been booming though.
Advice, do a little homework on the neurosurgeons, the hospitals at which they work, their credentials, sucess rate. One mistake during surgery and that could be it. Ask about hydrocephalus. I know that was my major problem. The cyst itself may not be causing any issues and might just need monitoring.
Ask about a neuro psych test just to see where you stand. I don't know about you, but after finding out about my few mental issues and epilepsy, it occured to me that they might have caused issues through out my life. Social issues, learning issues. If you have issues learning or remembering, there may be alternative methods to try. Ask about any signs other that the cyst. Things for which to look as the years go by. It may be non problematic.
Anyhoo, that's what I can think of.
December 10, 2015 - 8:19pmThis Comment
Left ventricle *
December 8, 2015 - 6:44amThis Comment
My husband has a large left posterior fossa arachnoid cyst... No one seems concerned. He has had fatigue, breathing issues, severe headaches & neck locking. Bells palsy ten yrs ago. Now has 2 cervical discs issues. Thats how we found the cyst. They only want to worry about his c6-7. Is this due to a lack of experience with them because they are rare???
July 25, 2015 - 9:22pmThis Comment
Dear Anonymous: On November 18, 2015 I had a large arachnoid cyst removed from the posterior fossa area of my brain. I had all of the symptoms that your husband has. I've lived with these symptoms since 1987. I understand the frustration you and your family must be feeling. Please please seek out a neurosurgeon who understands arachnoid cysts and also comprehends that symptomatic cysts can have a significant number of symptoms which may be "unusual". That's because we are dealing with the "BRAIN". If you are anywhere near Texas, I would recommend without reservation: Dr. David Jimenez. He performs these types of surgeries everyday, all day. He's he first neurosurgeon I found that seemed to understand what the cyst was doing to my body and my life. Best of luck to you and your family.
December 5, 2015 - 4:20pmThis Comment
Can someone let me know what doctor to contact at duke or a number to call I am having similar symtoms and have a cyst in my cerabellum thanks for the help.
May 17, 2015 - 5:52amThis Comment
I would love to help more. I am better and renovating acyst.org. I am a 501-c and am working on making "A Protocol, That's All" for those of us that suffer from this nightmare.
March 21, 2014 - 3:17amThis Comment
Catherine- Could you help me find specialists for these cysts? Do you know of anyone in Atlanta GA?
February 13, 2016 - 8:44amSarah
This Comment
I recently found out that I have an arachnoid cyst on the right posterior fossa. The doctors tell me that it looks like I've had it my whole life. They discovered the cyst after the ER ordered a CT scan due to a nocturnal seizure. That was in April 2012. An MRI reveiled I also have hydrocepholus. And, the cyst is putting pressure on my brain stem. My brain stem is about half the size it should be. The neurologist put me on Keppra for the seizures and kept upping the dose every time I had a seizure. Now I'm at the max dose for my body weight.
July 29, 2012 - 12:42pmSince the discovery of the cyst I have had 5 or 6 more nocturnal seizures. The neuro surgeons tell me that the cyst shouldn't be causing seizures due to its location.
I was wondering if my sleeping on my back would cause increased pressure on the cyst and brain stem and would that trigger a seizure. Or any other ideas of possible triggers.
This Comment
Hi,
Thanks for writing. First, so sorry for all your troubles. Brain issues are so traumatic because we need and rely on our brains for everything having to do with our bodies. You have some similarities to my case. My arachnoid cyst is at the back of my brain and very large. It takes up over 1/3 of my brain. You may want to look into getting my book, "It's all in Your Head," Maria McCutchen....avail on Amazon and wherever books are sold. You can see what I went through, though even more has happened since writing it and now, it is believed that I may be having nocturnal seizures. I ahven't had that confirmed yet, but what I have found is that I have to sleep on my right side only. I cannot sleep on my back or my left side or I get these horrific symptoms that make me feel horrible.....extreme sudden dizziness, terrible weakness, I can't walk because I have no balance all of a sudden. I just have to roll over to my right side and let things settle down before I attempt to get up. I went through a divorce a year and a half ago after 13 years of marriage and two boys, due to my ex losing his compassion for what I was left to live with. Not to mention he was verbally, mentally and emotionally abusive. So that certainly didn't help my health. Anyways, a few years ago I decided to tell my story because it was such an unusual story and many doctors just blew me off, claiming these cysts are normally asymptomatic.
Anyway, there are a lot of similiarities I see, to your story. I would just keep searching for that one neurosurgeon who understands brain cysts. To me, that is your best bet. You can also follow my blog...www.arachnoidcystsupport.blogspot.com where I give bits and pieces of my story and helpful information for those who live with brain cysts. Things I've learned along the way.
You can also reach me personally at [email protected] if you ever need to talk or have any questions that I may be able to answer for you.
Take care, and don't give up. If I had given up....it would have been long ago and I wouldn't be here with my boys today. It may not seem like it, but things do get better and they can turn around. You just have to be persistent and work at finding the one doctor who will listen to you and believe you - believe in your case.
Take care,
Maria
July 29, 2012 - 2:40pmThis Comment