NeuroTalk Support Groups - One Centimeter Colloid Cyst

Quote:

Originally Posted by Allison1968 (Post 319958)

Hi Tomc & Houston: I was diagnosed with a 5cm colloid cyst in January, and my nuerosurgeon refuses to remove it. I don't have hydrocephalus, but I have horrible migrane headaches. How did your surgeon's remove yours? What did you say or do to get them to do it?

sorry I haven't replied in so long, I miss-placed where this forum was....and the post.

Ok...here the inside line I have....

call 1-800-233-2771 or email (cedars nero department)

this can be a do it yourself program most of the time it is...

I mean DO-IT-YOURSELF...do not rely on your doctor to refer you to a sec review, sometimes you need to find the "other doctor" to call yours, in this case this other doctor would be....

your nero's professor at UCLA...

just mention his name to your current nero, just say that either you...or him need to send your MRI's to ceder's to be reviewed, AND give your doctor the above information (cedars nero department does this for free btw), and add if he/she bulks at this idea (which I have had ONE do) just drop down where you had the mri done and request a copy of the cat scan and mri on film and on CD.

one quick way to do it, is to send a copy of the CD to a "file farm" host where for a limited time a copy of it would be avaible for who you want to review it can down load it....

once you cleared the deck with the legal issues and what not ie permission forms and paper work at cedars for the review.

his name is Keith L. Black, and most if not all nero's I have met seem to understand who you want to do the 2ed review, the ones I have met out side of cedars have his home phone on speed dial on their cell phones, and will completely treat you "differently" once you drop that name on them.

now my experience with my own problem, (the above lesson comes from helping a friend with their brain tumor) was more around the lines of....

I had this headache, I just recovered from collapsing in the shower, this being post op for a colon repair after my appendix ruptured and emploded and got infected that released plegmen in to my "gut" -X- ten months to kill the infection for they could fix the hole in my colon + four weeks post op at the time of my collapse.

so i go into see my primary, who had a stand in...because mine was on "vacation"

the first thing was they wanted to give me pills, and I told the doctor, sorry if your gonna give me pills for a pain I would really like you to know what is causing the pain, i rather not have you guessing at what's causing it. let's warm up some of the nice machines we have in this hospital and for a change send me into it and get a real good idea before we try to kill the pain with out knowing the cause....

well ....as unbelievable as this story can go from there....

exerts from a "dated post"

I have learned two things in my life, (A) you never assume anything, (b) most always doctors treat the symptom and not the cause of the condition.
if you want to die, go to the XXXXX Emergency room in Rochester, N.Y., they work off assumptions and not proven medical test like a HEAD CT. a simple test, that i begged for many times, but the doctors chose to assume they knew best. (idiots!)
So, here is what happen....

8-19
I started experiencing a server headache, and a stiff neck, took some Tylenol and blamed my blood pressure meds.

8-20: Genny goes to work, I take a shower hoping that it will take away my stiff neck, and this pain that has settled in the back of my skull, my head begins to feel like an over inflated tire.

During my shower, my leg muscle felt as if they belong to a marathon runner after running a 30k marathon, I found myself sitting on the floor of the tub, I knew this wasn’t normal as I sat and contemplated what to do next that day.

Learning from past mistakes with my appendix, I drove to my doctor to explain to him what had happen, and after insisting on a head c/t he gave in.

Arriving at the lab, I was told they where book till the following noon the next day.

8-21: I arrive at the lab the next day, my neck still stiff and my headache still hurting I get my cat scan. Funny how this till like the other times in the CT scan, I could see the booth where the tec’s are watching the screens that have turned their little room an array of different colors.

First there was only one tec, so it seemed a little routine. Next their was two tec’s and a doctor, the cat scan continues to run, the first tec and the doc are now leaning over the desk try to see something, before it is there, and when it must be in full view, on tec has his hand on his jaw, the other keeps looking at the screen and to the doctor pointing at the screen and the doctor reaches for a phone and begins talking to someone that he called.

The cat scan machine stops, I dread what coming next, I waiting for them to explain the effects of this fluid that they call contrast, the little pre recorded explanation doesn’t begin and I close my eyes trying to figure if it something with the machine or is it something with me, I opt out that there is an electrical problem with the machine. I open my eyes to look in the booth, there is now three doctors talking to each other in a circle and the two tecs are still amazed at the what it is they are watching, I hope that what they are paying so much attention to is either a new porn video or a football game.

A nurse comes in and begins to extract me from the CT, I ask about the contrast and why the CT scan had been aborted, is the machine broke, what’s wrong I ask.

Still the doctors talk and the tec watch the screens as the nurse explains that they didn’t need to use the contrast, and how I should count my self lucky because it makes you dehydrated anyways, she ask me to not follow rather walk with her to my little room down the hall, she gives me an elbow to hold on to as a jester.

There is a look that a person can give you, and if you are good at reading faces, you completely understand what they are saying.

I was lead down a hallway to my little room where this doctor arrives to tell me that I have a problem, he gives me the details and they will want to admit me in to the hospital.

As I am waiting for a wheelchair for my ride to the ER, I decide to call genny at work because now she should be back from her lunch hour.

I explain to her some of the details and how they are getting ready to admit me to the ER for I can be admitted into the hospital, if she wants she may want to come to the hospital.

I’m wheeled across the hospital to the ER, where I am giving an over flow operating crash room, this really makes me wonder as to what is about to happen, and if genny now well be able to find me.

I already know this routine, I experienced it before with a friend, so I begin making a list, they will do an MRI, then admit me and they will probably operate on me tonight, I will be giving a room and sent home tomorrow after lunch, I wondered if genny would be able to pick me up or if maybe I should think about having my bike brought down and locked in front of the surgie center for when I get out tomorrow, I all so wonder what they have planned for lunch.

Genny arrives with the er doctor who now explains this completely differently, he explains to me that the lab (three doctors and two tec’s) over exonerated the results of my cat scan and this is something that they have seen before and not to worry, after your released from the ER make an appointment with this neurosurgeon he will probably just treat you on an out patient bases.

I get released from the ER, Genny is just completely miffed, I explain to her that she was not there in the lab, you need to talk to that doctor. She drives me around to my truck where I go to the parking median get a big pretty rock for my rock garden and I put it in the back of my truck and drive home, wondering how many rocks am I going to get this time around, how can this happen to me after what I all ready had to deal with….hello?? hey dude…are you listening to me need a little attention down here, what now!

We get home and I am left sitting wondering, what the hell just happen, what am I going to do now, why and the hell did I drive home, why did I bend over to pick up that rock, who’s right, who’s wrong…genny wants me to make the appointment with the neurosurgeon, who is he…I never heard of him, I want to call the “fellows” of nero that I know, this is ridicules, my mine travels a hundred miles an hour.

I make the call, then go out doors and get my gorilla glue from the garage, I noticed my new bird bath toppled over and I think this glue will fix it, what in the hell happen, these doctor remind me of a base ball game, the ER docotor is on 3rd base, the Lab crew is on 1st and I am the pitcher…..who….who, who and the, my mind wonders as I fix my bird bath in the front yard.

Status, we know what is broke, what we need to know is what is till working, is a line I remember from Apollo 13, I kind of apply that to everything.

I know I have to completely different view of the same catscan, and I have an er department who has all ready laid out my treatment options, sent me home with out further testing (MRI) and now, unbelievable as it is, I am sitting in my front yard with gorilla glue drying on my finger tips fixing a bird bath I found along side the road.

So what should I do, what have I learned, what is it I should do, I get up and walk in to the house, I pick up the phone and call the nero I just got off the phone with, genny freaks out as I tell the doctor on the other end of the phone that I was canceling my appointment for the next day. I need time to think.

8-22, I awake still with my headache, going over the short list of my problems and remembering the past 9 months, just what does this hand hold for me, what are my options, what do I know. THINK!

I know I can just call that lab and get a cd and the films of my cat scan, I know how to read them, I know what it is I want to look for, why didn’t I do this in the ER, man what a dump mistake that was, I should have ask the ER doctor show me the films, rather or not he would is another story, I drift off thinking about that show ER where a brother of a patent brutally beats one of the doctors in a bathroom while he is taking a

Yea, that’s not an option either.

So I call the lab, I want those films.

A couple of hours pass, I arrive at the hospital where the lab is, I get my film and the CD and I step out in the hallway and begin looking at them in using the skylight. My hart drops, the lab was right and the ER was wrong, I see what it is that they have been talking about and I give it a name, Jr

I go home and call my doctor, had a couple of question like first off: what in the hell happen yesterday….what I need you to do is refer me to a nero, he gives me a number and I call it, we talk and he say the report can be faxed to him he would call me back.

He calls me back, tells me I am beyond his skills and he will refer me onto another doctor, he gives me a number. This goes on with three more neurosurgeons till the last one say I think you need to go to strong I have a number for you to call.

So I call the number, and make an appointment for Friday the 24th.

8-23 was spent in the twilight zone, I remember the Er doctor calling me, to explain to me that he wasn’t an intern, I countered with well I never called you that doctor but I know your not a neurosurgeon and you didn’t have one to read my scans for you either, you just read the reading report and left it at that with out a follow up MRI, and if I can draw your attention to a time back not to long ago you failed me then also, your not getting another chance doctor, you, your ER or your hospital.

8-24, I meet my new neurosurgeons, and their nurse, we talk about my case in detail and we explorer different options, they explain the want me to come to strong on 8-27 to get a detailed 3D- CT/MRI

I tell them that I have one already set up for Saturday the 25th at the lab at unity, and they just explain to me that their MRI is better and is more detailed, and we need you in our machine for we can program the computer for your operation which will be next Friday, as they say…this is what we do and we have the equipment to do it with the lab has nothing like what we have.

I look at them and just say, well then, ok…. did you say it a 3d Ct/MRI, and they both said yes, and I explained to them how I knew the gentleman out in LA that invented and perfected it, yea his name is Keith L. Black, I am sure you know him.

Like I said earlier, you can just look at someone faces and tell what they are thinking.

So today is the 8/26th, tomorrow the sun will come up and I am yet again going to go to another hospital in less than year for preparations for another major operation, how many time can I get stuck behind the 8 ball like this and be able to move out of it way, I really don’t know, but I do know as long as I am alive, no matter how bad it gets I have only one thing to do and that is to recover, no matter what, that’s how I was raised, get knocked down…you get back up.

I have a rare brain tumor, it is benign ad it is called a colloid cyst. It has developed at the base of my brain at the stem, this area is called the Monroe, it has devolved in a vertical ventricle, which is rare and it is blocking the cerebral fluid from exiting the my brain and down my spine and causing an excessive build up of fluid and pressure on my brain and collapsing the 3erd and 4th ventricles (where this thing belongs BTW) and has dilated the left side ventricles all together, sounds rather gross but that’s what is going on…

In order to remove it they have to travel the complex passages of my brain from the top all the way down to the bottom of my brain in order to do this.

I have a lot of good things on my side, I have recovered from my appendix, I am in fairly good shape and I have a good support team and many friends.

Monday 8-27 strong hospital

tada I am still here....

hey went to surgeons, via a taxi type limo golf cart that ran me from the front door all the way through the hospital right to my doctors office.

Talk about curbside service, and they have a guy park your car for you also...

SO, genny nerves have been untwisted just meeting the doctor, we found out that my tumor is the size of a grape, and it is an odd bugger that they may deal with 2 maybe 3 times a year, rare as he said is to have it in where it is at, my operation…my brain surgery will be approximately 4 to 5 hours.

They are 95% sure that it is benign, the only way to know is to biopsy it and remove it (going to cover this with the doctor in a little bit more detail but).

This type of tumor/cyst is solo blamed for causing sudden death in what would appear to be a normal healthy person, if I would have taking my first optioning to leave it and shunt the fluid off my brain, the tumor/Cyst would continue to grow and would kill me if it wasn’t treated one way or the other. (Death is not a factor here people and my math skills suck so…)

Got a ride in a extremely tight tube called and MRI that lasted three and a half hours, my lab work wasn’t processed before the start of the mri and when it came time to admin some intervenes dye….

So 45 min to an hour turns into 3 and a half hours stuck in a tube, no music just the cooling fans, and the standby chirp of the MRI, which I would like to say sound like an old Atari game piped into a surround sound system backed up by a pneumatic jack hammer, thank god for ear plugs.

After this fun at the MRI machine they turned me lose, genny drove down from work stayed with me for doctor consult and I told her they had me booked up all afternoon with test so being she was around the corner from work, she left afterwards, it was better for her nerves and mine, leaving me to explore the hospital. Neat place.

(Note to self, make sure you get an MRI done, the MRI lab is the only lab in the hospital that will validate your parking sub, not the doctors, not the blood lab, just the MRI people, and they will not cover the valet parking.)

So I am home yet again, “yuppie” the dogs, the cats the three birds and the herd of fish seem pretty ok with this so far.

Genny and I talked about how when my head would start hurting real bad, the girls would pin me down, no matter where I was, it has been going on since February, odd little fact but true and it was noted in the er report the one night I went in, I was sitting on the side of my bed. and my dogs pushed me down, I woke up later when I realized genny was taking my blood pressure and getting me around to go to the hospital (bp 206/153)

Looking back both the girls get freaked out if they are not right with me, one or the other is always in the same room, or yard with me at all times, layla and George are at my feet right now, layla is not sleeping rather seating and staring at me…

8-28/

Test/test/and more test/ problem
Went to Strong hospital again today, more blood test, ekg, and cardio ultra sounds, talk about giving a guy a ounce over!

there was a delivery delay with the machine that was programed for my operation, my operation was on 9/5/07 and I was released on 9/6/07