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Ommaya Reservoir removal - Anyone experience this?

Posts: 1
Joined: Oct 2010

I received chemo back in 2004 both through a catheter and an ommaya reservoir. The catheter stopped working shortly after my chemo was finished, so it was removed. The ommaya reservoir remains in my head today. I am giving serious thought to having it removed, but I'm worried about scheduling 'elective' surgery. My doctor recommends having it removed because he said it probably is non-functional anymore anyway. I'd like to know if anyone has had an ommaya removed, and how the procedure went. I have a full head of hair again, and would assume a patch would have to be shaved away for this procedure too, but I'm not sure yet. Any comments are welcome!

Posts: 1
Joined: Sep 2010

Hi! I am sorry that you are having to consider surgery. My husband has AML that has spread to his spinal fluid, and he had an ommaya placed last week. We were told that this had to stay in for the rest of his life, unless it was causing him trouble, like infection or pain. The surgeons explained that removing the ommaya would be more risk than what it would be worth. I am not sure if this helps! When you had your ommaya placed, how many days after surgery did you still have a headache? My husband still has a pretty wicked headache, and is sensitive to light and sound, not sure if this is normal. Best of luck in your decision! I hope that since you are considering having it removed that it means your cancer-free!!!! That would be great

smelltheroses's picture
Posts: 2
Joined: Jan 2012

i had an omaya reservoir put in before starting chemotherapy in January of 2010. Although I am now in remission my doctor has advised me that it has to remain in my head as the surgery is very risky. I wish I had known that before. I was very upset at the prospect of having this in my head for the rest of my life.

Posts: 1
Joined: May 2011

Hi, I had a relapse of acute lymphatic leukemia in March 2000. It came back in my spinal fluid. I had to receive multiple chemo treatments in the fluid so they put in an ommaya. I later had a BMT and have been cancer free/remissioin since August 2000. I've had mine in the whole time and it hasn't bothered me at all. There is just a knot on my scalp where they placed it. Mine didn't work right from day one for some reason. My doc said as long as it wasn't bothering me or causing trouble they would just leave it in. Taking it out would be more trouble and an unnecissary surgery. Over 11 years and it hasn't hurt anything staying in.

FactoryStress's picture
Posts: 1
Joined: Nov 2013

It's been over 7 years since they put this lump of plastic in my head. I asked all the questions, of course. When does this thing get taken out of me? Will this thing desolve in me? How long will it take for the plastic to start breaking down? What does the tube go into and how long is the tube? Will it hurt later on? Blah blah blah. They did show the device to me before it went in tho..... Im ooooh Aaaaawwwwing........ All I ever got was a, I don't know" answer. But they did tell me that after 5 years they would look me over and determine if it can come out or not. Bunch of bull! It's NEVER/EVER intended to come out. They placed mine in the smallest ventrical they could find and tell me that I'll most likely die or sustain brain damage from the removal. So then why tell me that they'd reevaluate me in 5 years? To give me false hope I suppose. they used it to remove my spinal fluid to teat and to administer chemo into me. 6ml spinal fluid out & 6ml chemo in. First tine was ok, then the rest if the treatments like this were oure hell! This damn thing always makes me feel as if ants live under my skin, crawling in between my scalp and skull In the resy area.  I also get the biggest migraine headaches at times, especially during hot temps. They told me that this procedure is usually given to older folks that don't have that long to live and  they would just die with it in their head , so they wouldn't have to worry a out it coming out anyway! Sorry my post won't bring you peace of mind, but that's the straight talk from what I have to deal with in my world. I'll hit 8 years in May.  Good luck to you and I hope you find the answer you're looking for. I'd like for this thing out of MY head.

Posts: 3
Joined: Jun 2015

My Oncologist asks each time i go for follow up when I'm going to have this port removed. "At first I was afraid..." then, the neurosurgeons office was so unavailable as to make it nearly impossible to have removed. When I asked if it were risky to have it removed, the reply was, "it's way easier to take out than it was to put in." Providers need to get it together and communicate better, return messages/calls and answer questions fully.

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