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Old 12-31-2014, 03:52 PM   #1
Jo'sMom
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Default Nothing to worry about?

My son had an MRI a few weeks ago that showed "multiple" colloid cysts, one that appears large, in the third ventricle. Because of the holidays no one will call us back and his symptoms are getting worse. The GP said it is "nothing to worry about." Huh? I don't even see anyone on this forum with "multiple" colloid cysts. And what I am reading tells me it IS something to worry about. I guess if things get too bad we will just have to go to the emergency room.

Can CSF displaced in the brain appear to an inexperienced MRI tech to be additional cysts?
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Old 01-01-2015, 01:15 PM   #2
Jo'sMom
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Default Need help

The last post I put here doesn't seem to have generated any response, so maybe I need to go into more detail.

My son is experiencing behavioral and physical symptoms that are connected with these cysts. They have been slowly growing worse for over two years. How concerned should I be, and does anyone know doctors with a good track record who can treat this?
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Old 01-01-2015, 01:23 PM   #3
Jo*mar
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Holidays are usually slower for replies..

You can use the search link to find key word info in older posts.
http://neurotalk.psychcentral.com/search.php


If looking for drs it helps to post your state or large cities that are nearby.

Or read thru past threads to see if drs in your area are named..

I merged the 2 threads so all information will be together for future replies..
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Old 01-01-2015, 01:25 PM   #4
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Hello Jo'sMom,

Welcome to the NeuroTalk Support Groups.

The forums are a little slow because of the holidays. I hope that someone who is familiar with colloid cysts drops by and sees your messages.

I'm sorry I am unable to help, but just wanted to say hello and wish you and your son all the best.
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Old 01-02-2015, 12:20 PM   #5
Jo'sMom
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Default Doctors

Thanks for replying to this.

We would be looking for doctors in the Denver area.
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Old 01-15-2015, 06:56 PM   #6
Anki
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Hi, dr. Michael Cusimano at St. Michael's hospital in Toronto removed my cyst in June. He did the best possible job, I recovered quickly, without pain, without memory issues, and I'm doing very well. The surgery was endoscopic. Best of luck in finding the right neurosurgeon, experienced in colloid cysts!
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Old 01-26-2015, 11:07 PM   #7
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Hi Jo's mom. One thing I have found is that many docs have never seen on of these cysts. As for having multiple cysts at once, I have not heard of that but my only knowledge of them is due to my own symptoms and surgeries. There are a couple of great pages on facebook reguarding these rare cysts. One is America's colloid cyst survivors and another is just colloid cyst survivors. First thing I can tell you is that you will have to be persistent and make them refer him to someone who is knowledgeable hopefully close to you. My surgeon is in bowling green, KY and he is awesome, but there are some at Emory and some who have seen others around the country. Take this seriously and be persistent. I want you to know that with removal we do pretty well. Fir a knowledgeable surgeon who has done these, they are fairly simple, concidering. However, a doc unfamiliar with them just sees a cyst and the thing was explained best to me like this. They are benign tumors in a malignant location. Please check out those sites and demand they send him to someone who has treated these before. Best wishes and prayers for a great outcome for your son and your family.
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Old 11-03-2015, 01:00 PM   #8
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Quote:
Originally Posted by Janeteve View Post
Hi Jo's mom. One thing I have found is that many docs have never seen on of these cysts. As for having multiple cysts at once, I have not heard of that but my only knowledge of them is due to my own symptoms and surgeries. There are a couple of great pages on facebook reguarding these rare cysts. One is America's colloid cyst survivors and another is just colloid cyst survivors. First thing I can tell you is that you will have to be persistent and make them refer him to someone who is knowledgeable hopefully close to you. My surgeon is in bowling green, KY and he is awesome, but there are some at Emory and some who have seen others around the country. Take this seriously and be persistent. I want you to know that with removal we do pretty well. Fir a knowledgeable surgeon who has done these, they are fairly simple, concidering. However, a doc unfamiliar with them just sees a cyst and the thing was explained best to me like this. They are benign tumors in a malignant location. Please check out those sites and demand they send him to someone who has treated these before. Best wishes and prayers for a great outcome for your son and your family.
Hi Janeteve, I was diagnosed with a colloid cyst about 4 months ago, I recently moved to Glasgow KY. I'm looking for a Dr in Bowling green. Would you mind telling me who your Dr is? I had a Dr in Louisville tell me to wait 6 months and wanted to give me a med that would make it grow. Very frustrated at this point.

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