Let me introduce myself. My name is Tracey, I am a nurse up here in Canada, and am 18 months post-op of an endoscopic colloid cyst removal,
and 17 months from finding out that I have a reoccurring colloid cyst in the same location.
I am here to say to all of you that are going through this, that I am an example of how life can go on and although I have a constant headache (which is well treated with a medication I take nightly), and some memory deficit (I have gotten pretty good at covering that!), I have been able to get back to the life that I left pre-surgery.
I did not know that I was walking around with this marble in my head, growing and causing the headaches that I was getting used to and somehow ignoring, until finally I decided that I must be coming down with something that was causing a migraine that I had never experienced before, and I laid down to rest and fell unconscious, only to be found TWO days later in my home by paramedics, still unconscious with obstructive hydrocephalus. I awoke with a shunt that had been placed to drain the fluid but the cyst was missed. A month later when the headaches persisted, the culprit was found and later removed in a procedure, though higher risk, but agreed upon to clamp the shunt to create a larger space again to endoscopically remove the cyst once and for all. A month after that, a reocurring cyst was found in the same location.
I returned to work after each surgery, but have modified my responsibilities. I no longer feel comfortable to make patient care decisions, and feel much more efficient in the nursing management position that I am in now. I have had to learn that I am changed, and although I look and sound the same, I am not the same, and my friends and family can never understand that when I tell them I forgot something, it is not the same as the regular aging memory deficit. I get the distinct feeling sometime that I may know what it is like to have early-onset dementia. I have days where I am easily agitated, have a short fuse, and am irritable. I simply attribute these things to my ongoing headaches, that for the most part are manageable, but sometimes are not.
BUT, most days are great. I am thankful to be alive, grateful that I was found before I had severe brain damage, though having obstructive hydrocephalus for as long as I had it, unconscious for 2 days, shows that miracles do happen, I truly believe. I am grateful to be able to share my story with people who 'get it' like all of you, and maybe even with people who don't. I find comfort knowing that I am not alone, and also a sense that I need to share my story, that someone out there may be needing to know that THEY are not alone either.
Tracey