I had a colloid cyst removed approximately 6 years ago. However, I still suffer from frequent headaches and lightheadedness. My most recent MRI (done over a year ago) showed nothing abnormal. I just found out yesterday that my brother, who never had surgery for his colloid cyst (it was supposed to be getting smaller on its own), now has 3 cysts. My questions are: How rare/common is it for cysts to appear? Could I be developing new cysts? Should I have another MRI?
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.
Colloid cysts are benign intraventricular lesions, usually arising from the 3rd ventricule, and consisting of a capsule of collagenous tissue with “viscous material insude”. Patients usually present with headaches, symptoms or/and signs of increased intracranial pressure, and sometimes focal neurologic manifestations. If the cyst happens to block the CSF fluid outlet, these may lead to changes in mental status an even coma.
The cause of these cysts is not known, and no chromosomal abnormalities have been reported. There are cases of familial colloid cysts, as what seems to be your case.
There is no exact description about recurrence rates, the rate at which the cyst grows, and the frequency new cysts develop. However there are cases in which new cysts happen to appear, but even though it is rare, the example you provide tells us that this happens.
Treatment is surgical excision, and most of the time there is no recurrence, but as I said this may happen.
Based on this information, patients may need regular follow ups, and may need regular imaging follow up. However there is no stablished guideline for this.
I cannot really tell you if your cyst may recur or if you will develop new ones. I think you should discuss this with your neurologist or neurosurgeon, and consider repeat imaging to make sure no new cysts are forming.
I hope this is useful. Good luck.
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