Hi there,

This is my first time posting on this forum...or any forum for that matter. I see that there's been recent activity so I thought I would share my story and post a question here - see if anyone else's experience has been similar.

I was first diagnosed with a colloid cyst when I was 17. It was found incidentally on a CT scan through investigations for a seizure disorder. The cyst was managed conservatively until I was 23, when it cause hydrocephalus and had to be removed (cyst was 1.2cm x 1.4 cm). My surgeons chose to take a memory sparing approach, and they left about 3mm of residual cyst behind. This was back in 2001, when the common understanding of these cysts was that they likely would not grow back. On my last consult in December of 2001, my surgeon wished me to "have a nice life" as I left his office. The seizures stopped and I lived life for 13 years believing that was all behind me.

Well don't you know, it grew back (now 8mm)...and oddly, the seizures came back too. While there is not a lot of support to show that these seizures are related to the cyst, I am thankful that I've had them because they've let me know both times to be aware of the cyst and its symptoms...frankly though, I just want it out. I know there are surgeons who will resect asymptomatic cysts, but I've had a few consultations now and the predominant suggestion, since I've already had one craniotomy, is to wait it out and intervene when it becomes symptomatic. The second craniotomy carries increased risk.

My next MRI is coming up in two weeks. I'm pretty anxious. I tend not to get headaches but have started to get them. I feel tired all the time and congested. Does anyone else experience something similar? It's kinda like post-traumatic stress, I think.

Thanks for reading my post.