Searching for Answers

[bethhessel]

New to this and searching for answers. My son was diagnosed with colloid cyst of third ventricle (4-5mm) in Aug after complaining of headaches, depression. We have been through battery of testing (neuropsych, neurologist) at the direction of Neurosurgeon to determine symptomatic/asymptomactic. We see the NS this Thursday. My son has been having increasing depressive behavior which he refers to as physchotic episodes - like a switch is flipped and he spirals downward into uncontrolled rage, anger, depression. Has anyone else ever experienced this with colloid cyst? My son had brain trauma (hemorage) at pre-term birth - 10 weeks early and a twin. Sorry to be so wordy in this post but we are trying to get our arms around the whole colloid cyst diagnosis and searching for answers.

[chunky]

Hi,
My name is Donna, I had a colloid cyst removed in 1972 and have been using this website for some time. Everyone here is caring and concerned and pretty educated in the world of colloid cysts. It sounds like you are in good hands for you son. We have had a lot of discussion on hereditary isues etc. No one knows for sure, but stay with the best MD's around and I haave found that the teaching centers are usually up on the latest breakthrough's. If he is young I would also stay in the children's hospital network at they are a sub- specialty that only treats children and are able to scale down the interventions to his needs and symptoms with the best of the best.
keep us updated we wil pray for you and your son.

[bethhessel]

Thanks for your reply. I have tried to get my hands on all of the info I can. There is not much info available. Talked to Barrow Inst, sent MRI's to MD Anderson, spoke with Mayo at first diagnosis. We are fortunate to have KU Med Center here in KC (teaching hospital) where our Neurosurgeon and Neurologist both practice. I am just so concerned about his latest behavior changes. This changes are more devasting than his headaches. Is this common with colloid cyst? I am so glad that I found this site - good to lnow we are not alone!!

[chunky]

I don't believe you said how old your son is, but any unusual behavior should be addressed by the treating MD"s and if this is new since you last saw your MD I would call them in the am and discuss the change you see in your son, don't wait until he gets worse, and describe what you have here and let them make a decision as to what you need to do. Best of luck to you ...be proactive in your son's care; it's is important to let your MD know of any changes in his behavior.
Donna

[bethhessel]

Donna: Thanks so much for your concern. I am calling the NS first thing in the morning to discuss these latest episodes and so thankful that we do have appt this Thrusday. These "episodes" are almost seizure-like how it comes on so rapidly. My son is 20, a beautiful, vibrant, talented artist. Many of his paintings have "things" in the head (painted before diagnosis) - kind of foretelling! Thank you again for your encouragement.

[chunky]

Yes something is not right don't forget to call today eventho you have an appt this week. They may want to see him today.
May God richly bless you and your son.
Donna

[Pearson]

I am 26 years old and in 1996 I had a colloid cyst removed. Before the surgery I was a maniac to say the least. Yes, I had similar behavioral changes that were very noticeable to ppl around me. GL and let us know how things turn out.

[chunky]

Hi How did it go and did you call the surgeon?
Donna

[bethhessel]

Yes I called the NS first thing yesterday and spoke with the nurse. He was going to speak with the NS and get back to me. (I did not hear anything). He also had me call the Neurologist - same thing. Hoping I will get some response today. I hate the waiting game in all of this!!

[Discododi]

Hi Bethhessel,
I have been following your post, and hoping the best for your son. I find it interesting your son is an artist. Yes, the paintings are foretelling as you describe them. Please tell your son he has a group that is very supportive of him, and wish him the best.

Please continue to share what his neurosurgeon advises, Thanks, Dodi

[bethhessel]

I am getting very frustrated trying to get the Neurosurgeon's nurse and Neurologist's nurse to return my call from yesterday. I have left messages again today and emailed the NS regarding the recent behavioral changes in my son. I will count myself lucky that we have an appt on Thursday.

[chunky]

The only advice I can give at this point is 1. to call him after hours and speak with the MD on call or if you don't feel comfortable doing that..keep a log of all the interventions when you called, who you talked too, what did they say, and date and time each intervention so the MD will see your efforts, when you are actually in the office and if he is worth his weight in gold he will address the poor response from his office.
Donna

[snowangel12066]

Hi , This is snowangel here . I have a short history on this page and am still in the discovery process also. I feel that what your son may be going through is anger and frustration with his newly diagnosed finding. Please know it is not easy being a rare brain tumor sufferer. See my posts at "Seeking Guidance". From what my doctors have to say this 6-7mm cyst is still in the watch and see phase . It is too small at this point to operate. I have had a second opinion done at Johns Hopkins and he seems to concur . GoodLuck and my prayers are with you and your son.

Snowangel:o