Live with a Cyst ?

[Marc1968]

Hello everybody

In July I went to the Doctors with really bad head aches and Sickness. The sort of headaches that debilitates you its so sore.

I was then sent o a neurologist at my local hospital (just in case), and given some migraine medication and a given a CT Scan (just in case) !!

I had the scan and was told that my doctor wanted to have a quick chat ?

He passed me over to a neurosurgeon, who told me I had a colloid cyst in the third ventircal. "Go home and we shall organize a MRI scan and then call you back in " he said

Three weeks later I had the scan and was told that the Cyst was not causing the symptoms and that i was to go back to the doctor in six months time !

Mean while i am a hard working self employed business owner with four small children who is to sick to work three days in seven :(

Sorry to sound frustrated, i'm sure the doctor knows better, but has any body else lived with these things for any length of time ?

Are there two distinct types - symptomatic and asymptomatic ?

Is there anything I should be looking out for ? My wife recons my memory is worse and i feel tired a lot of the time, perhaps that just having 4 young kids :)

On the good side when I dont have the headaches I feel fine, and wonder if it was just all in my imagination.

Sorry I have just seen how long this post is, but having such a rare illness there are so few people to talk to about it, who understand it.

Many thanks in anticipation of any help.

[USMCmom]

Hi Marc - please see my reply to Kae Lee regarding having these cysts and what I went through with mine. They do make you tired and sick and living with them is not easy. I am surprised you were left with yours when it is obviously causing you symptoms. I was told that when they do start causing symptoms (symptomatic) they want to take them out as that is when you can drop into a coma and die within hours. I went to the Barrow Neurological Institute in Phoenix Arizona, one of the best nuerological institutes in the nation. When they gave you the scan, what they were looking for was to see if your ventricles were blocked off and your csf fluid could not get through, thus causing you to have obstructive hydrocephalus. This is what my colloid cyst eventually did and why it was removed. I had the sick headaches for 20 years, complained of feeling like one of my eyeballs was trying to burst out of my head, was treated for migraines, cluster headaches, tension headaches and just about every kind of headache and medication out there that has ever been invented for headaches through the years. None of it ever worked for me, just had to let the damn headache work it's course. My neurosurgeon told me that what was happening in all those years was that cyst would get in a position to block off the fluids, cause the headache and then, for what ever reason, I would find just the right position of my head and/or neck, and the cyst would swing free again and the fluids were able to move freely again and the headache would go away.
Now that I have a VP shunt in my brain I have masive headaches when the barometric pressure changes, like when a storm is brewing. You hould start to keep notes on when your headaches happen - time of day, time of month, if there is extra stress going on at home, work, etc., if they wake you from sleep, what helps, what does not help, all factors of them (does the light hurt, are you sensitive to smells, sounds, colors, certain foods, etc.), moon phase and any thing else you can think of putting in your "headache diary". Sounds weird, I know, but the more you know about the what, when, why, where and how's of them, the more you can share with your Dr and the more he has to work with. I saw one neuro who said there is no such thing as a "normal" headache, or tension or cluster or anything else, all headaches were migraines. And supposedly barometric pressure affects migraines. You need to get a second opinion on your cyst as you would with any other very important health issue and start reading up on them more - there is a lot of information out there about them and a surprising amount of people, like us, who have or have had them. I would be happy to share info with you if you would like more. Hope you are feeling better soon!

[Janie 54]

I agree with USMCMOM in that you should get a second opinion. I had a 16mm Colloid cyst diagnosed in July 2008 that caused significant hydrocephalus. I had various neurologic symptoms including fatigue, short term memory deficits
and unsteady walking. The neurosurgeons I saw recommended a VP shunt to treat the hydrocephalus because it is a less invasive procedure that removing the cyst. Cyst removal can cause permanent damage to the fornix in the brain and loss of short term memory. I chose to follow their advice and now have a VP shunt and still have the cyst in my third ventricle. I saw dramatic improvement of my symptoms two weeks following the surgery, and by six weeks I felt fully recovered. I know that I am dependent upon the shunt to control the hydrocephalus, but I am grateful to have recovered all my brain function and have an intact short term memory. I feel that I made the best decision to treat my condition. Good luck with your decision to treat your colloid cyst.