Hi,
I have just joined. I have been looking for feedback and I may be able to help.
I had a colloid cyst removed 8 years ago, about the size of a walnut, with obstructive hydrocephalus. I since successfully returned to full time work. The Professor at the time thought he had total removal. Over the past 2 years I have had bouts of "illness" and found the cyst had regrown to about 1cm. I developed further symptoms and I am now recovering after surgery in March. I know I am lucky to be here and if anyone has any questions I am happy to share my experience.

Hi Nellie, the removals in your case were done endoscopic or open? As mine was done endoscopic, there is more risk for the cyst to regrow. Thx a lot!

Hi Anki,
I have had a second craniotomy, in March and they have inserted a convertible Ommaya reservoir. The cyst has been successfully removed but they were unable to totally remove the capsule due to the blood vessels close by. I saw the surgeon about 7 weeks post surgery and he was pleased with my progress, saying that many people are not even out of hospital at this stage. Physically I am doing well. I felt very sick this time initially and with positional room spinning. My mobility is pretty good as it became acutely worse pre surgery, walking like a drunk on a bad day. I am still coming to terms with what has happened but I am feeling better and hope to return to work in a couple of months. I do have to concentrate harder, no change there, I do get tired though. I hope you continue to feel well and remain cyst free. These cysts are very rare (0.5%-1% of all brain tumours I believe) with a wide variety of vague symptoms. I have no doubt that I would not be here if I had not had surgery (I can tell you more about that if you want) I am happy to answer any further questions, hope it helps? Take care.
Nellie

Thank you Nellie! A blod vessel was draping my cyst as well, so part of it could not be removed. I can only pray and hope that it won't regrow. Oh my...kind of scary...
Thx again for sharing and I wish you all the best!

Hi Anki,
I know what you feel and I wish us both a long happy cyst free time !

Be well.
Nellie.

I am very sorry to hear that you had to go through a second operation for your cyst. I also am in the same boat in that not all of my tumor could be removed because it was entangled with bloodvessels. My Nero cauterized the root of the lesion before he closed.Wonder if this same procedure was used in your surgery? Tom

Hi Tom,
I don't think they cauterised mine, not sure. They have managed to remove all of the cyst but not the capsule, so I think it will be, wait and see. My scan was good post surgery, though there was a small subdural bleed that is resolving. I am doing well now after, another spell in hospital with Ataxia. I still wake up with what I call fuzzy heads though the electric shocks in my legs appear to be settling down. My speech is better though slower when tired and I do get fatigued. I have just started back to work part time.
I hope and wish you well.
Nellie.

Hello,

I am touching base after a few years now. Somehow I am still here.
I have now had 2 Craniotomies and resection of a colloid cyst in the 3rd ventricle with obstructive hydrocephalus. I had a VP shunt and I would like people to know I had a bad reaction to the shunt. It took months to convince my consultant to believe I had a reaction. Finally he removed the shunt and I now have yearly scans to monitor the cyst growth( as they could not remove the capsule due to bleeding) and hydrocephalus.
I take each day as it comes and do pretty well.
It is good to have a forum to get information and support.
A lot more has happened besides but I am hoping to be able to contribute in some small way.