NeuroTalk Support Groups - Colloid Cyst/Brain Shunt

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Colloid Cyst (https://www.neurotalk.org/colloid-cyst/)

- - Colloid Cyst/Brain Shunt (https://www.neurotalk.org/colloid-cyst/19037-colloid-cyst-brain-shunt.html)

JustJanie,
My memory loss was very profound at first. I did, however, remember my son and my husband during everything. I just could not recall what we spoke about 2 minutes prior.

I had 1 month in-patient speech and occupational therapies, and an additional nine months 0ut patient therapies to help me re-learn how to program my memory. My therapists worked together to devise a system that would help re-train my brain to remember basic tasks. They had me use what we called a "memory book". It was a basic spiral notebook I carried everywhere with me. I was to jot down date, time, and specific info to help "jar" my memory. At first, I was quite elaborate in my writing. I then found it very time consuming to re-read. I then started to write down short reminders that were to get my brain working again. Low and behold, it did! It took some time, but now, as long as I have had plenty of sleep, my memory is pretty darn good. I don't have the "glitches" I used to have. (They were sort of like black holes in space.)

Please be very encouraging with your son. Tell him it will get better as his brain heals from the trauma. Time really does help.

I can really relate to you writing your son can not remember if he ate, etc. I made a simple graph for myself and hung it on my refrigerater to remind me either to eat or tell me if I had already eaten.

Please know my surgery was in 2000. I have had quite a bit of recovery time, and realize this will probably be one of those life long quests.

I wish the best for your son, and your family. Don't give up. Tell him you love him often, and be proud of his accomplishments, Dodi

Quote:

Originally Posted by justjanie (Post 187683)

Hello All! I was wondering if anyone has or has a loved one that has severe short term memory loss from the removal of a colloid cyst. My sons cyst was 8millimeters when they found and removed it. The dr said it needed to be removed right away because we know he did not have it 3 years ago when he had a series of scans and the such done do to his dentist finding an unrelated tumor in his jaw at that time. So the fact that it was not there 3 years ago and now then it was and was pretty large for a short period of time to have grown was the concern. The cyst turned out to be vascular fed (which the 1st surgeon missed on the scans for some reason) and in the process of removing it my son went in to arrest but only for a moment. They changed from the endoscopic surgery to a craniotomy immediatly but the damage was done none the less. My son has not been able to return to school, needs constant supervision. He can't remember hardly anything(if he ate, what color is his toothbrush, if we went anywhere today etc). We are going to rehabilitation 5 days a week 3 hours a day and there has been some improvement but only small steps forward. I just don't know what to expect or what to do to help him more. Has anyone been through this and gotten better?

I thought I would pass along some very positive feelings. I underwent surgery for a CC at age 58. In contradiction to what the literature says both my short and long term memory were affected. I struggelled with this for quite some time. I started with simple PT like walking a straight line, went to flying radio controlled planes(many crashes) and reread my textbooks(many times). These have all helped me,BUT BE PATIENT-IT TAKES TIME. Post NS, now 3 1/2 years, things are going much better. It is an exponential function!

:confused:Hello
It's been a while since I have been on here... I had a VPshunt put IN (FIRST TIME) of AUG of 2008 (it will be a year here in about a week!) ALL year since this shunt was placed I have had HORRIBLE sickness:( I had pains with my adominal area at first then the headaches came! Since then, on and off mostly on- I have been getting REALLY sick with Headaches BAD headaches ! I am way more worse off now then even before the shunt was put in. It feels like ever since the beginning my body wanted to or is rejecting it! Anyways, for the last 6 months whenever I would get sick it would start off with chills-headache-REALLY BAD FREEZING COLD CHILLS Than BAMM! The worst headache you could EVER imagine! Followed with temps from 100 to 102! When I get like this I cant really talk, open my eyes, or even walk by myself & my head throbs to my heart beat which is heavy & hard pounds? And the weirdest thing : This lasts EVERY time for about 5 to 6 hours then its gone like I am fine! It also comes right out of the blue so i cant really plan ANYTHING in my life! I have went into the hospital with this atleast 4 times because the head pain was SOOO BAD I could NOT handel it & BELIEVE me this pain I get is QUITE often & I just try to deal with it:( I have had my shunt Tapped 4 times and every time it came back infected-but the infection they found was not a type of infection that is found in a shunt???? Yeah, EVERY DOCTOR TELLS ME SOMETHING DIFFERENT! I honestly have NO clue of whats going on with me! The last time I was in the hospital here in town, they finally decided to send me to the Cleveland Clinic. When I was there they gave me another shunt TAP and blood cultures...ONCE AGAIN, Nothing grew in ANY of my cultures! And my tap was normal. But yes I was on antibiotics the intire time I was in the hospital. When they told me to leave cause I was fine & they didnt see anything wrong with me-I was home for about 16 days until the headache & fevers came back! Now that its been about 28 days since I am home I have been sick like that 5 different times! And the last time it lasted for 2 days & was the worst yet! I am sapposed to go back to the Cleveland Clinic to have my surgery redone! The Doctor/Brain Surgen there thinks I am having problems like this due to NOT having my cyst taken out in the first place! My Brain Surgen here NEVER took out my cyst that is right smack in the middle of my brain (third ventrical) and just gave me a BIOLATTERAL VP SHUNT. I guess that means I have 2 shunts in my head then gathered at my side...I freak out EVERYDAY knowing that I have this-I mean, I can feel it and its been going on a year and I am STILL having pains where the holes are in my head and down my neck & laying down and all that etc. I dont do much and I DONT live life like I used to in ANY way:( IM ALWAYS SICK! So...the Clinic thinks that I should just get this cyst taken out-Having a 1 time risk then a lifetime of risks with a shunt! I was also told that I may need to get a shunt after my cyst is taken out-for that happens sometimes:( And then again, I can be normal & live life normally with no shunt ever again! I also know that there are a TON of risks & THAT SCARES ME SOOOOOOOOO BAD! As in DEATH, loss of speach, memory,etc. Has ANYONE here had BRAIN SURGERY AT THE CLEVELAND CLINIC? I do know that CLEVELAND CLINIC is the WORLDS 6th BEST HOSPITAL FOR BRAIN SURGERY- BUT I WOULD LIKE TO TALK TO SOMEONE WHOS GONE THREW IT FROM THERE!!!! OR HAS ANYONE ON HERE HAD THE PROBLEMS LIKE I AM HAVING- HAS ANYONE HAD A cyst & it stayed in & just had a SHUNT PUT IN THEN HAD PROBLEMS TO GET JUST THE CYST TAKEN OUT AFTERWARDS????? I REALLY need to talk to people about this! I dont know what I should do! Should I just go for it? because I DO NOT WANT THIS OR ANOTHER SHUNT IN ME EVER AGAIN!!!!PLEASE ANSWER THIS SOMEONE! I THANKYOU:)

Problems After Surgery

Quote:

Originally Posted by MissHollyInAz (Post 95705)

Hello All
I became a member in April of '07 as soon as I found out I had a colloid cyst and had it removed. The tumor was removed 100% and all was well. Then about a month later I started getting the headache again that I had before the surgery. After suffering with it for about a half a day I called the surgeon and they sent me back to the ER. Once there (or should I say 7 hours later!) I got a new CT scan and lo and behold! Where the tumor had been removed built up so much scar tissue during healing that it sealed off the ventricle again! So, I now have a permanent shunt in the brain.
Now, I was never told this was a possibility and only after it happened was I told it "sometimes" happens. Has anyone else ever had this happen? What are the pro's and con's of having the permanent shunt? Please, I would love to hear from all that have a brain shunt and the experiences, both good and bad, that I may expect! I do know the shunt surgery was by far worse than the original tumor removal as far as the pain level and the healing is going. I am just curious though if I will be able to see this tubing running down my neck and chest for the rest of my life, what happens if I get in an accident and damage this tubing? Will the back of my head always feel like there is a huge wad of something underneath my skin? Please, please help!
Thanks so much!

Dear Miss Holly,
My husband had a colloid cyst removed last Oct. after the surgery he felt great. He began to go to the gym, and he was getting back to his old self. He always had alot of energy, and liked to do alot of things.

About a month after surgery he began to lose his energy again, could hardly get up off the couch to go to work. After he got off work he was right back lying down on the couch again. Now the headaches have started again, and he had a spell of passing out. I got him to the ER where they did a CT Scan and they said it was normal, but he says he feels like he did before.

Is this the same symptoms you had before they had to place the shunt???
My name is Alicia, I would really like to know, we have an appt. with the surgeon next friday.....Thank You, Alicia

Quote:

Originally Posted by glittergirl (Post 543696)

Hi,I'm a agent orange sprayed Vietnam veteran and trying to see if I can find a connection between my daily migraines,Agent Orange and the colloid cyst I had removed in 2003. My doctors found my colloid cyst while doing a MRI trying to find the source of my headaches,which I had been telling everyone were "sinus headaches" for years.I was given 2 options,1 sit and watch the cyst and see if it grew or caused more problems ,or have it taken out.2 weeks later it was removed,I had 32 staples and a titanium plate over my skull and it was removed.I was only in the hospital 1 day, and I didn't have to worry that one day I might just fall down and start shaking and cause more problems.The unfortunate part is that I still have headaches which worsened and became daily,but at least the cyst is gone.