Colloid cyst survivor

[chunky]

Hi Everyone, I am not new to this site and I had a sign in name in the past but forgot my password so I needed to re-register...go figure. In 1971 I underwent a craniotomy for a colloid cyst in my 3rd ventricle. I went to an MD with symptoms fo profound headaces, tunnel vision and "bumpy" later diagnosed as scintillating scotoma with bilateral papilledema. my children were 6, 5 and 2 year old twins... The MD I saw took the "test papers" ie: xrays, lab request and threw them into the trash stating there was nothing wrong withme. He decided I was over worked with 4 little kids working nights as an RN in CCU and therefore needed to cut back. He also told me not to "doctor hop"... Well ...thankful for a pushy husband I had my eyes examined and was immediately sent to a neurosurgeon with surgery set to take place in the next 3 days; it was a holiday weekend. He allowed me to get things in order in case I didn't come home. This was in the days where I had to have a lumbar puncture daily for 3 weeks straight as they did not have ways to decrease the brain pressure that is available today. I also had burr holes done before they performed the ventriculogram to finally find the cyst.
I had a profound short term memory deficit. I was in a 4 bed ward and my room mates would orient me daily as the neuro team was outside discussing my case. AND as soon as the MD walked in I forgot the date, his name and where I was. When asked what was new I would always answer there is a war in Viet Nam. We had just moved here from another city and I kept saying the wrong state and city.. I would go for a walk and would forget which room was mine. After discharge I had a baby sitter for one week and my husband took a week off then I was on my own...
I was given a medical release to return to work in 6 months but decided that I felt too insecure and waited another 6 months before I returned to the bedside. I am grateful for this website as it reminds me that God has a plan for my life and he allowed me to go thru it as I reached out to HIM. I am still working today altho semi-retired and on SS retirement benefits. I worked in critical care for 26 years post op and am blessed that I was able to return to gainful employment. Today I am a case manager for injured workers in hopes that they are treated well and return gainful employment too!! That is my story I wanted to share. Don't give up it does get better with time..
Chunky!!

[BambiVA]

Chunky, boy things must of changed since your surgery in 1971! I know they have since my surgery in 2003.

I can remember my first visit with my neurosurgeon Oct 2003. We have NEVER heard of a colloid cyst. My husband and I both thought they would go in with some sort of laser and zap it out. Needless to say we were both surprised about the craniotomy I was about to have. I still speak to some doctors and nurses that have not heard of a colloid cyst. Your story reminds me of mine I went into surgery election day and not knowing who became president, the nurses kept asking who was president I really did not know at that time. I also kept forgetting which hospital I was in until I started reading their badges with the hospital name on it.


Thank You for sharing your story it will give us all hope and the ones about to have the surgery the hope that things will turn back to normal soon.

~Bambi~

[chunky]

coninued saga from 1972 Colloid cyst removal My 4 year old was my little memory stik. He would let me know if they had had lunch or dessert. I would sit with my husband and while watching TV I would ask him at least once an hour "honey was my tumor benign." and he patient said yes honey it was benign. One of my neighbors would introduce me to her friends this so and so and added" she repeats herself a lot" shortley thereafter I stayed in the house until I felt more secure... I would write out a check for a bill twice without realizing what I was doing...
My how time files....
Chunky

[Somersetlass]

Hi Chunky,

Not sure if I like your new name...I remember you from before the 'Crash', but I can't remember what your old name was!
Anyway, I am glad that you are back and doing well, it helps the new people here to hear from people like yourself who have 'been there, done that' and are still here to tell the tale.
Take care,
Tracy.

[chunky]

Hi Chunky,

Not sure if I like your new name...I remember you from before the 'Crash', but I can't remember what your old name was!
Anyway, I am glad that you are back and doing well, it helps the new people here to hear from people like yourself who have 'been there, done that' and are still here to tell the tale.
Take care,
Tracy.
THE NAME Chunky was given to me by my husband when we were going steady back in 1960 and believe me at the time I was not "chunky"...but the name stuck with me and I use it as my new sign in name at braintalk..

[dka_palmer]

Hello,

I am also new to this site, but it was some time ago that I had my colloid cyst removed. In 1991 I was 15 years old when I had mine removed.
I suffered from the usual symptoms such as headaches etc...
I went to the doctor 2 weeks before I was to start my Sophmore year of high school, to check on the head aches. That day I saw my doctor, ophthalmologist, Neurologist, had a CT Scan and an MRI. By 6:00 that night I was diagnosed with the Colloid Cyst of the 3rd ventricle, and the next morning I was in surgery 'Craniotomy'.
I had the typical memory problems, and struggles that followed, especially being in the middle of my high school years, but I have since recovered and lead a rather normal life.
At this point in my life I work as an Analyst for a software company in Atlanta, GA. I am married and have two beautiful children.
I only found this site a couple of months ago, but I think that it is great to have a place where we can go to find and share support for eachother.

dka

[chunky]

Hello,

I am also new to this site, but it was some time ago that I had my colloid cyst removed. In 1991 I was 15 years old when I had mine removed.
I suffered from the usual symptoms such as headaches etc...
I went to the doctor 2 weeks before I was to start my Sophmore year of high school, to check on the head aches. That day I saw my doctor, ophthalmologist, Neurologist, had a CT Scan and an MRI. By 6:00 that night I was diagnosed with the Colloid Cyst of the 3rd ventricle, and the next morning I was in surgery 'Craniotomy'.
I had the typical memory problems, and struggles that followed, especially being in the middle of my high school years, but I have since recovered and lead a rather normal life.
At this point in my life I work as an Analyst for a software company in Atlanta, GA. I am married and have two beautiful children.
I only found this site a couple of months ago, but I think that it is great to have a place where we can go to find and share support for eachother.

dka

Welcome to the site I found it by accident too and it has been a great comfort to communicate with people who have been thru the same thing some worse than others. I am 25 years post-op and posted my story as colloid cyst suvivior last month.. Welcome to the elite survivors. Thankful to the internet.!!!
D

[mrsjerome]

My husband had his surgery in Jan of 2001. He had been having difficulty with balance felt like something was pushing him to one side. He did not have headaches. He was sent to a neurologist in the beginning part of Dec. 2000. He had an MRI taken and we thought everything was ok. as we did not hear from the dr. We called but the receptionest told us the dr. would talk to us on our next appointment in early January right after the holidays. He was 66 years old at the time and working part time and functioning well except for the balance problem. When we went to the Jan appointment the Dr. asked why he didn't go for the MRI. Well to make a long story short the Mri was sent to his other office and not the one we were seeing him in. The dr. called us the next day to come in and view the MRI There it was a colloid cyst the size of a grape in the middle of his brain. He told us it was no big deal. Then referred us to a neurosurgeon. The neurosurgeon he referred us to did not do the surgery as he left it to his young dr. working in his practice. He told us that it was only about a 3 hour procedure and that it should go ok. although they don't guarantee any surgery. But we were led to believe there would be no problems. He was scheduled for the surgery on a Wednesday and the Dr. told us he would probably be home to watch the super bowl on that Sunday. He also told us if he did not have that surgery he could just fall over dead and then there would be nothing any one could do for him. Well this just scarred the daylights out of us. So we proceeded to have the surgery. At first after the surgery the Dr. said everything went well that the cyst just popped out and he should be ok. He had been scheduled to have that surgery at 9 in the morning but it was delayed until 3 in the afternoon because these drs. had an emergency surgery they needed to do. I went home about 9 that evening figuring everthing was ok. I no sooner got home then the hospital calls to tell me my husband had just suffered a grand mal seizure and had weakness on his left side. The next day the dr. now tells me that he had to move the right side of his brain over to get at the cyst but he put him on dilantin for the seizure and he should be okay Then I learn that a vein also had to be cut so there was a slight brain bleed causing these complications In other words what he really had was a right brain stroke At the time his whole left side was numb. If hind sight was 20/20 and I knew as much about this procedure as I know now I would have made sure to have gotten another opinion and chosen a physician with some expertise in these types of conditions.I think this neurosurgeon was just not experienced enough . My Husband was in the ICU unit for 2 weeks and then went to the re-hab floor for another 6 weeks where he received occupational physical and speech therapy. also he developed a DVT in his left leg and had a filter put in . That leg had swelled up like a balloon from the weakness on that side. After he was discharged he continued to go for physical and speech therapy for another 3 months. He also broke his hand in a fall because no one had told us that the dilantin level in his blood needed to be monitored. They finally took him off of the dilantin and put him on another anti seizure medication. He has had numerous health problems that we have been dealing with since. This is what happened to my husband as a result of this surgery. I don't want to discourage other people with these colloid cysts from not having surgery as it can be dangerous to leave it go. Most of the people are diagnosed at a much earlier age than my husband was and were having more pronounced symptoms than my husband. The chances of this happening to anyone else is slim if you have a neurosurgeon experienced in these matters. We have never heard of colloid cysts before this happened so it is good just to post on this board with people that are familiar with this procedure. Just wanted to give some imput into what happened to my husband
Sincerely mrsjerome

[chunky]

Just wanted to give some imput into what happened to my husband
Sincerely mrsjerome[/QUOTE]

Hi mrsjerome; wow what an experience!!! I am soo sorry to hear about the outcome of your husband. When my MD finally believed my story and saw that it was serious he called a local surgeon and I started to cry and indicated I wanted to go to a medical center where someone was around most of the hours; ie: residents interns etc. At that time the smaller hospitals were not as well staffed as they are today with qualified neurosurgeons. I was fortunate to have the Chief of Neurosurgery at a teaching hospital. but it was not easy as I said.. daily lumbar punctures for 3 weeks done by the residents and interns. but that was my choice and it was a good one. Having 4 small children was my surgeon's biggest worry ie: feeding them you know the usual stuff with bringing up kids. They all survived and are successful adults today. There is not easy path to colloid cysts and they are often overlooked or underestimated as to what the outcomes could be....
D