My 14 year old daughter was just diagnosed with a "giant" arachnoid cyst. We took her to the GP after having an ongoing headache for 2 months. After an MRI we were told that she had a cyst measuring 3.1cm/6.2cm/11cm that was located in the posterior fossa. We were referred to a Neurosurgeon that has just reported back to us that this is "normal" for our daughter and that her symptoms are not the result of the cyst because there is no hydrocephalus or compression on her brain. She has also been having tingling in her arms & legs and often experience pain in her lower legs. Once we did some research on the arachnoid cyst it seemed to make sense that these symptoms were related to the cyst. Guess we were wrong???? As I have read other sites/messages there certainly seems to be a common link. There haven't been any new postings on this site in quite some time so I was wondering if there is any NEW information. We have read that there are some new "endroscopic" procedures that some neurosurgeons are using on arachnoid cysts and have had some good success. We currently have an appointment with a second neurosurgeon to get his opinion as well. We aren't pushing for surgery but would like some answers as to why our daughter is experiencing these symptoms and what we can excpect for her future (ie.. get worse/same/improve). Would like to hear from anyone who might have some input.
Last edited by w8rmmom; 06-23-2007 at 01:52 PM.
Im sorry to hear that. And that is HUGE! anything in the brain is too large! there is no room for anything EXTRA! I say, dont always listen to the docs. I have a small pituitary mass and god awful headaches as well as other I know with brain tumors. We all complain of headaches. Well there are supposively little or no pain sensory nerves in the brain (I believe I read that somewhere) so of course unless there is major compression , the docs cant find what else could be causing headaches. They like to blame stress, depression...ect; When I think they need to be doing a little more research. Granted, they know aa bit about the brain, but they will even tell ya, they dont know it all. They need to find the relationship between having something there that is not supposed to be and how it is causing headaches! Believe your daughter...There are too many people including myself going through the "headache" problem...alot of us have been found to have tumors, mass, cyst ect; but the docs keep tellin us "NO RELATION".pardon my french, but they are full of ****!, ill post a link here to show you how many people are being told this and have a mass of sorts. If I an still find the link! In the meantime, demand something for your daughters headaches...Imetrex..I myself..take reg tylenol and sometimes helps, sometimes does not....brb
I agree that more research needs to be done, but keep in mind that the last thing a patient should want is surgery, let alone neurosurgery, that does nothing for the symptoms. I'm sure that there is a surgeon that can remove the cyst, but if the patient still has her original symptoms, is it worth the risks of a high-risk procedure?
To the OP, see what the second opinion says. It might be worth seeing a neurologist as well. Arachnoid cysts are often incidental, even big ones! It may have been there since birth, and you are only seeing it now because you got the scan.
No need, I will just assume by your answer . Although I do agree that nuerosurgery is not something to just jump head first into ( no pun intended ) But I do believe there is a relationship between a mass (any size) in the brain/head and headches/migraines. I think docs are missing something very important, because they are so headstrong about "textbook" rather than listening to the many patients complaining of headaches! OR...They really do understand, but coping with a headaches verses brain surgery.....Of course they would much rather try to help your headaches. And Im sure admitting this as the cause of headaches would only cause everyone who suffers a tension headache to assume they have a tumor/cyst/mass.
I was diagnosed yesterday with a arachnoid cyst and the neurosurgeon I saw also said to wait. He wants to repeat the MRI in 4 weeks to see if it is growing. He said it isn't close to anything and is small enough right now not to cause any problems unless it continues to fill with fluid. My cyst is about 1 1/2 cm about the size of an dry pinto bean. So we wait and hope that the symtoms will get better and the cyst will not fill with my fluid. I hope that you got some answers.
hello my husband was diagnosed with a dermoid tumor which is a mass with hair,teeth,nails in it it is also in his posterior fossa it is the size of a half dollar the neuro doc says it is very rare to be there less then 1% have been documented i need a specialist who specializes in that part of the brain any suggestions.
Last edited by moderator2; 08-08-2007 at 04:52 AM.
I was diagnosed with a prepontine arachnoid cyst three years ago. It was imaged on a MRI. I have had cranial pressure for years but now it is worse. I am also having memory and cognitive problems. My neurosurgeon said not to be concerned unless I started having personality changes. How do you judge that? I have been having suicidal thoughts for a while but am not sure what to do. I also had the Gamma Knife surgery for Trigeminal Neuralgia 3 years ago and have facial numbness as a result. I had Anterior Cervical Discectomy with fusion 8 months ago and still have neck pain and numbness from that. When does it stop? Sorry, just tired of it.
I have just joined this forum today. I have participated in other forums where people have given their stories about suffering with an Arachnoid Cyst, but many are unable to get the treatment or operation they needed. I'm not here to give any advice on the subject, I just wanted to share my experience.
My Arachnoid Cyst was discovered in '97 after having an MRI. (But I had many other tests before that, and nothing showed up!) Then my Neurosurgeon had me in hospital for the operation within 2 months of the MRI scan. Maybe it is probably the quickest reaction you've ever heard of? But it was after nearly 2 years of trying to find answers! My Neurosurgeon took all my symptoms seriously, and especially so, once he saw the MRI results. My cyst was in the posterior fossa, and my Neurosurgeon had no hesitation in operating. At the time, I knew nothing about Arachnoid Cysts, and didn't have the net to research them, like I do now. I didn't even want an operation, but I was told it had to be done!
So, the stories I've read recently on other forums about people who have an Arachnoid Cyst, have the MRIs to prove it, and no one will operate or give other treatment for their symptoms, seemed rather strange to me at first. But that was because I had no trouble convincing my Neurosurgeon that I needed an operation...the MRI results convinced him instead!
Anyway, that is just a short version of my story! lol