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Diagnosed with Colloid Cyst and looking for advice/experiences!

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    Diagnosed with Colloid Cyst and looking for advice/experiences!

    I was diagnosed in 2010, when I was 22) and shortly after my husband and I were married. I had a migraine for 3 days so my husband took me to the ER they found a "mass in the brain" and told me to follow up with a neurosurgeon and neurologist within the week. My neurosurgeon sent me for an MRI immediately and told me I had a colloid cyst. Everything happened very quickly and seemed very urgent. After my MRI my neurosurgeon said my cyst was small and I was extremely lucky because they are rarely found this early and that for now I would just need annual MRIs to)check growth with the possibility of surgery one day in the distant future. I did this for three years and everything was fine so he told me I could get MRIs every other year. In 2013 I got pregnant and had to skip my 2014 MRI. I got one in 2015 and he seemed a little concerned because it showed growth, he ordered another MRI for 6 months later, but I got pregnant again and never got it. I've been researching about it and finding all sorts of worrisome info that I never fully knew because my Dr had made me feel it wasn't a huge deal. Now I have two small children that I want to be around for! I'm looking for others' experience with treatment/monitoring. I'm curious how large your cyst was when surgery was recommended and how your recovery was. I've never really been scared about this before, but I want to be proactive and smart because of my babies, I want to be here for them! Thank you in advance for any info and insight you may have!

    Knowing is half the battle!


    Knowing that you have a colloid cyst is a good thing considering the alternative! Did they give dimensions on its growth? Some centers will operate on any cyst over 1 cm regardless of symptoms. The advisability of this varies. I believe that this practice is because we don't know of anyone dying from a colloid cyst smaller than 1 cm. When they operate to remove the colloid cyst, it's called a resection. Microsurgical approaches include the transfrontal surgical approach and the more traditional transcallosal surgical approach to name a few. And then you have the endoscopic resection of colloid cysts and all of its varied approaches.

    How are your symptoms now? Some centers are reluctant to operate on smaller cysts in the absence of symptoms. My headaches ceased after I was given a prescription for Decadron. I had to have a VP shunt put in in order to control the hydrocephalus after my resection. Recoveries are a mixed bag and also varies. Remember, proactive fear is the beginning of wisdom.

    Here is an old thread that documents some various sizes, etc. on our experiences.
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    Good luck and best of health,
    Last edited by Levi; 01-05-2017, 09:58 PM.