Hi everyone, I have been recently diagnosed with a 8 mm colloid cyst. The neurosurgeon suggests an open craniotomy to have it removed. This doesn't sound good ...If anyone could share the post surgery experience, it would be very helpful! Thank you so much! PS I am from Toronto.

Hi everyone, I decided to follow up the cyst. After one month, there is no change in size and the hydrocephalus is still mild. The doctor respects my decision, however he is concerned about the sudden death risk I'm taking. Next MRI will be in 3 months, and I'll post the result (hopefully I'll be fine until then).
All the best to everyone!

Hi, Anki!
I have a 5x10mm colloid cyst that I have also chosen to monitor, though my doctors have said they will remove it when I am ready. They found it last April and had another MRI in October. No growth, and still just mild hydrocephalus showing in my left ventricle. My symptoms are currently mild. It does make me nervous to wait, but I am more nervous about surgery.
I'm trying to get a referral to see the surgeons at UPMC in Pittsburg, PA. They do a special kind of endoscopic surgery that is less invasive than craniotomy and I am hoping I will be a good candidate for that. I wonder if anyone in Canada also does something similar, if that would be an option for your case. I know some cases require craniotomy in order to get all of the cyst removed.
How are you feeling?

Hello Anki, I'm so sorry to hear that you received this diagnosis because I can imagine the pain and other symptoms that you may have had that brought you to seek medical assistance. I had a large colloid cyst removed over fourteen years ago after fifteen years of misdiagnosis and neglect. Because of the size of mine and the amount of hydrocephalus that I had, my surgeon chose to do an open craniotomy, too, as that is the route that he was most skilled at doing. He got the whole cyst out, but the hydrocephalus could not be relieved for me because the cyst had been there too long and I needed to have shunts put in my head. Unfortunately, I did not have a very good post surgery experience as I suffered a stroke during surgery because, I'm told, the general surgeon assisting my neurosurgeon retracted to roughly and caused a hemorrhagic stroke. That being said, make sure you know your surgical team. Everyone doing your surgery should be certified to do neurosurgery. In other words, the surgeon assisting your neurosurgeon should be another neurosurgeon. My mother had her surgery for the same thing at a different hospital and with a different surgeon and had a much better outcome.

Take good care and I hope all turns out well for you.

Hi, thank you for your reply! I had a CT scan in March and the cyst is stable, same the hydro. However I fell more and more presure in my head and I'm becoming quite anxious. In the meantime, two othe neurosurgeons (one from Anadolu clinic in Turkey and another garanteed experienced from Romania) have recomended microsurgery intercallosal approach. I will go with endoscopic at St Michaels Toronto, sometime in June (just had the appointment this week). Your cyst would not be removed here, as they start operating on over 1cm only (if no symptoms). Mine is border, so they will do it...I'm very anxious too...thanks again, and all the best! I'll keep posting when I have news.

Thank you so much Ginger for your post! I was hoping that someone like you would write. The doctor that will do the endoscopic is the best in Toronto and some say in Canada. However, not sure who will assist and what control do I have over that. I'm grateful that he accepted me as his patient. How about your life during the years after the surgery, your memory and the headaches? Were you able to return to work, and after how long? Sorry, too many questions...thank you so much again! PS the fact that your mother had the same thing is super important as well, as I have a daughter, so she should always be aware of this.

Coming back with a revise, in order not to confuse people: the 2nd and 3rd opinions were :
"The selected approach is microsurgical *interhemispheric transcallosal way". Better to be specific than to write from memory...
Thanks again!

Hi LC,
How are you feeling? I now realize that your cyst is actually 10mm. Do you have any news?