Ommaya Reservoir removal - Anyone experience this?

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.

I've had my omaya reservoir 27 years for interthequal chemo for NHLymphoma stage 4, when I was about 19. I ended up needing an allogenic BMTransplant the next year. I don't really notice it, except for the bump on my head. I am being followed by the Dana Farber Survivorship program in Boston. Not one doctor, the

n or now, has mentioned removing it, perhaps because I'm asymptomatic maybe?

Hi, I've never known anyone with their Omaha longer than me. Nice to hear about you, Kimber. Mine was put in 1993 when I was also 19, diagnosed with Leukemia. I spoke to surgeons along the way of my life, and absolutely no one will remove the Ommaya under less than life threatening conditions. When explained why it makes sense. I just don't get the oncology doctors lying about how easy the removal following tx. So unnecessary to rob people of what little choice and control they have over what's being done to them. I've had a long time to get over that deceit, I really came here searching for any research or personal knowledge on the long term side effects and/or complications of the plastic apparatus being in the brain 20+ years. If you (or others who read my comment) care to share their experience I would be greatful. Directing me to any published studies on the long term morbidity and mortality of the Omaha would be great. I can't seem to find any. Thanks, and all the best to you Kimber.

To anyone:

In addition to long term side effects of Omaha Reservoir implant, I'm also trying to understand what I'm facing as a 28+year survivor of ALL Leukemia with 3.5 years of chemo tx. At some point, if we survive long enough, we stop worrying about the cancer relapse and start wondering about what the chemo has in store for us, as in secondary cancers and long term health complications, and even stunted life expectancy. Unfortunately, there isn't a lot of longitudinal research on survivors, and doctors answer our inquires about our future prospects with glassy eyed vagueness mumbling "not really sure." So annoying.

So far, I have migraines from the Ommaya, a cataract from massive doses of prednisone, pervasive tooth decay from all the vomiting, memory loss, aphasia, and eyesight impairment from the intrathecal chemo on the brain, permanent foot drop and neuropathy in my toes from Vincristine, bladder issues from Cisplatin, and psychological struggles from the existential horror of it all. I've been told to expect heart problems from the life time max dosage given of The Red Devil (Adriacmycin). I hope this info is helpful, not scary, to anyone with similar inquiries as my own.

Anyone coming across my comment who has had 20+ years of living with an Omega Reservoir and/or ALL Leukemia survivorship post chemo, or even 20+ years post treatment with any of the following chemotherapy drugs: Vincristine, Methotrexate, Cisplatine, Adriamycin, Bliomycin, 6-MP, Doxorubicin, Prednisone, etc I would really appreciate to hear candidly spoken, the long term side effects you or a loved one experienced, and/or research studies/journal articles you know of on this topic.

Simply being thankful we didn't die of cancer isn't enough anymore. Folks need to know what to expect from the treatments, once they've walked down the road away from their cancers a bit.

Big hugs to you Kimber, and anyone who finds their way to this comment looking for answers, comfort, or fellowship. For as long as I live to call myself a survivor, I am here for anyone who reaches out to me.