I would appreciate any information anyone could give me about colloid cyst surgery and shunting. My husband had to take me to the emergency room two weeks ago due to a 48+ hour headache that woke me up all night long and never went away. I have never had headaches before and I knew there was something wrong. I also learned not to just think you have a headache and dismiss it. My mother died one year ago Sept. 3 from a brain tumor that was caught way to late. (She went to a clinic because of a headache.) I have been diagnosed with a 7mm colloid cyst that is syptematic and I was told to consult a neurosurgeon and have it removed immediately. Well, they do not want to remove it due to the dangers and consequences. They want to put a double shunt in my head to drain my csf and hope that the cyst does not grow larger. If it does and there is a complete obstruction they will do an emergency craniotomy and remove the cyst and the shunts. It really just hit me today and I need some reassurance from anyone that has information about the double shunting. I was happier when I thought they could just go in and take it out and forget about it!

Hi Kae Lee, I had a colloid cyst removed in May of '06. I have had headaches for the last 20 years of my life but every Dr had their own take on them and I went through more diagnosis and treatments than I knew even existed and was even tossed out of one Dr office as a "drug seeker" because nothing seemed to work for them. In April of 06 I lost the use of my right arm, my thinking and speaking became muddled and unintelligible to me and everyone else, I was confused and my Dr sent me to the ER thinking "stroke". CT scan showed the cyst as well as the ventricles swelled and blocked off from circulating the csf, thus, hydrocephalus. We did an emergency brain surgery, removed the cyst through a small incision in the right front forehead and a burr hole through the upper right top of the head. The did an external drain for a couple of days, decided I did not need a shunt and released me. Exactly 30 days later, the same symptoms came back. In the ER again, CT scan showed ventricles swollen with csf all over again and blocked off with the scar tissue from the cyst being up there all those years and from the surgical scar tissue building. They put the shunt in that time. I have had it since. And hated it since. Not that I had a choice - they could have scraped off all of the scar tissue , along with the chance of taking some of the good gray matter, and not placed the shunt at all but there was no guarantee the scar tissue not grow back and with a vengeance and we would be back at square one again. And no guarantee that I would not lose some of my normal functions with some of the good gray matter going with it. The shunt is a horrible thing to live with. When the barometric pressure changes I suffer horribly. When a storm is about 24 hours off I can tell it is coming in as I get a headache from hell, I cant sleep it is so bad, I sometimes throw up with the pain, I now have seizures since the placement of the shunt, my cognitive functions are not what they once were. When I am talking I can't find the right words, I use words that are not the correct ones, or are not the word at all that I want or that sound like the word but are not even close to what word I need, I can't find the word at all sometimes, I dont spell like I used to (thank God for spell check!), I can't read like I used to, what used to take me two days to read now takes me months and half the time I can't remember what I have read and have to start over until it is so frustrating I give up on it and reading was my favorite past time pre-shunt, I foget where I put things so now have to put everything in a specific place each time it is used, can't cook as I can't remember where I am if using a recipe, may leave something on the stove or in the oven and walk away and start the house on fire, have to have the computer set on an alarm set to take medications, for appointments, can't drive now as I get lost in the town I grew up in, can't remember where I am going by the time I am in the car, don't shop since I can't remember what I need. I can['t even remember my pets names half of the time. It is horrible. I am 44 years old.
If you can live without the shunt(s) then I say do it as long as you can put it off! I have also heard that you cannot fly either as the barometric pressure is hell on the landings and/or take offs with some people, going on vacations is hard due to altitude and weather changes. There is something that is being done now that is cutting a hole in the floor of the ventricle so that they can drain that way. If this is an option for you then you should discuss it with your neuro or one that offers this since it is less invasive and does not need the shunt to work. I know also that the tubing of these shunts is very long, it goes into your body cavity by a foot and tangles all in your intestines. My gastro thought this was rather barbaric since it gets all tangled up in there as your intestines have to flip and flop to do their magic and this tubing tugs and pulls at your intestines and causes a lot of pain and problems that you have to take medications for also. I know if I ever have the chance I will have it removed and do the ventricle slit instead to see if I can't get rid of a gazillion problems that having the shunt has brought on. I am on social security disability now due to it. So, talk to your neuro about other options, research all other options anywhere you can before going down this awful path! Good luck to you with it. I wish I had known more when it happened to me - I had never heard of this when it hit me.

Hi there Kae Lee and USMCmom. I don't have the same condition that you do, but I noticed these was your first posts and I wanted to welcome you to NeuroTalk.

Do have a look around our other forums, and join in anywhere you feel comfortable.

I was diagnosed with a 16mm colloid cyst in July 2008. The two neurosurgeons I was recommended treating the hydrocephalus with a shunt instead of removing the cyst because of the risk of cyst removal. The risk of cyst removal is damage to the fornix which is where short term memory is stored. Both of these surgeons said they had seen people whose lives were devastated by short term memory loss. I chose to follow their advice because I knew that the shunt was a less invasive approach to treating my condition. On Aug. 7, 2008 I had a VP shunt placed. The surgeon was able to make a hole in the septum between the two lateral ventricles so the CSF would communicate and the two ventricles could be drained by one shunt. In two weeks following surgery I saw a dramatic improvement in my neurologic symptoms and by six weeks I felt I was fully recovered. I am the first person this surgeon had treated with a shunt. The other 30 to 50 people he has treated he removed the cyst and I know he saw some people have memory deficits. After seeing my positive outcome he is convinced that shunting is the best treatment for colloid cysts. I am not thrilled to now be shunt dependent, but I am thrilled to have my brain function including short term memory be intact. I am satisfied with my situation and expect to have a long future without shunt complications. I feel I made the best decision about treatment for my condition. Good luck with your decision.

Hi Janie and welcome to NeuroTalk. It's good to know that your shunt is working. I can imagine how good it must be to have your short term memory back, because I have MS and that's one of my problems.

I had to give up work last year as a nurse, because I was afraid of forgetting something important, and making a mistake that harmed some-one or even cost them their life. Not good!

Anyway.... I saw this was your first post and I wanted to say hi, and tell you welcome.

I believe the shunt is the worst way to go!!! I was diagnosed with a cc3rd ventricle in 6/6/05. After studying the literature extensively for two weeks I chose the more radical approach of stereotactic aspiration and removal. This surgery is by far more time (9-hr) vs shunt placement(2hr)., but after studying all the complications possible with shunts I still would do it again. That is, it has not been a rosy path after the surgery(3 years) but things are finally starting to turn around to the best.