I really need some help and can not find out much about this cyst that I have...after going blind in my left eye, and losing most of my hearing in my left ear, I was told I had this cyst...it is suppose to be rare, my doctor wants me to wait until it is a little bigger to do surgery...why I don't understand..the symptoms are terrible, dizzness, lose of balance, and I can no longer even drive and I feel like a walking time bomb...I don't even know what to expect to know it is time to even go to the emergency room if needed to...I have already survived one brain tumor in the frontal lobe...so this makes me very afraid of this one...I was ignored when I had the other one and was just given nerve pills...only through an emergency did they find the first one...I am fifty and now completely disabled..I am so hoping anyone can help me...I can find no support groups anywere..
thanks for listening to me..
The Following User Says Thank You to Sandi001 For This Useful Post: smwarren1 (06-08-2011)
I had a colloid cyst of the third ventricle surgically removed Nov. 2000. I awoke one morning with the worst headache I had had to date, went into the bathroom, and could not see from my left eye. I was later told the cyst was pushing on the optic nerve. I was rushed into emergency surgery, and the cyst was removed. I went through 1 month in patient rehab, and nine additional months out-patient rehab. The very scary thing about colloid cysts are that they can cause "sudden death" because of the cyst blocking the third ventricle obstructing the flow of CSF.
From my research, these cysts are rare, but I have had contact with at least three people who have had them removed. There are support groups out there, but most are for other brain tumors. If you have any questions you think I may be able to answer, please don't hesitate to post them. I wish you the best of luck, Dodi
Thank you so much Dodi for talking to me...you are the only one I have found with this, I am so sorry for all that you went through and so hope you are doing better...my surgeon sent me to an eye specialist and the blindness is permanent..the damage had already been done...I had the other tumor several years ago, and had to have emergency surgery then...I had complained about headaches for several years but all they did was give me nerve pills and tell it was depression...I was afraid that was going to happen again...my problems started in May went I almost passed out at the wheel of my car, then I got to were I couldn't drive at all..the last drive I attemped put me in a ditch so that was all it took, I guess what scares me the most is I live in the country, (which I love), but I am alone and can't drive, and I am afraid I will not be able to tell when it is time to go to the emergency room when needed...my doctor has scheduled another mri in April, he thinks I will be okay until then...but the symptoms really stress me out...I just felt really alone in this..you will never know how much you made my day replying to this..I have tried in vain to find others but have been unable to..if I may ask you, did you have alot of headaches before you had the one that made you go to the hospital...I have headaches all of my life and alot of them put me to bed...how about your balance? mine has gotten pretty bad....okay I have taken up enough of your time, once again thank you very much..
Dodi, once again thank you..the other tumor, was in my frontal lobe and it was benign, I can't remember the name of it...it took me almost a year to get back upon my feet...but never dreamed of ever having any more problems again, my doctor did say this one had nothing to do with the other one...and as far as seeing another doctor, he is the only neurosurgeon in my little town, I do trust him as he saved my life before, I was not suppose to come out of surgery alive but because of him and I believe God above I did...sometimes we have a language barrier, he is from another country and I don't always understand him the way I should, but the next time I see him I am going to write down questions so I don't forget to ask...I do have memory problems, did this happen to you? I decided if I have to I guess I can call 911, sometimes I think I let my imagination get the best of me..but just finding someone else who has had this has helped me alot...My panic is not as bad..how have you been doing since your surgery after the therapy? do you have regular cat-scan? Did you have to have a shut put in also? how did they do yours? I was hoping they wouldn't have to remove any of the skull this time...okay enough questions..thank you so much for talking to me..you have made my life a whole lot easier for me...
Dodi and Jaye, I have been really sick and not able to get back here till now...my sister is calling the doctor for me and trying to get me back in to see him...IMO this thing is killing me...the symptons are just getting worse, I had a couple of days I couldn't even get out of the bed...my other incision is probably just like the two of you...yes I have a grand canyon too..LOL the other tumor was the size of a golf ball and I was also born with it too...I guess I was shocked that I could ever have trouble again..but then from my life experiences I do everything in two's...I just want this thing out of my head...sometimes I have afraid I imagine these things because it is on my mind so much of the time...the other was an emergency situation and I didn't have time to worry about it...I will try to come back tomorrow and respond more..I have extremem tiredness also.. thanks for talking to me..both of you...
I am 6 1-2 months out from my colloid cyst removal. I am wondering if I can ask for your support. I have posted here before, when I was a lot worse off. I am gradually improving and I know that intellectually - I just can't seem to "organize" stuff in my brain or figure things out like I used to. Is this normal with brain surgery? and will it ever get back to "normal". I appreciate you all so very much, there is virtually NO other help online. THANK YOU, PR