Ommaya Reservoir removal - Anyone experience this?

suzyszoo
suzyszoo Member Posts: 1
edited November 2022 in Leukemia #1
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!

Comments

  • karin17
    karin17 Member Posts: 1
    #2
    Hi! I am sorry that you are
    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
  • marrowmillionaire
    marrowmillionaire Member Posts: 1
    #3
    Omaya Removal
    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.
  • smelltheroses
    smelltheroses Member Posts: 2
    #4
    karin17 said:

    Hi! I am sorry that you are
    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

    omaya reservoir
    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.
  • FactoryStress
    FactoryStress Member Posts: 1
    #5
    Take it out or leave it in, you decide.

    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.

  • tspietrogallo
    tspietrogallo Member Posts: 3
    #6
    Ommaya Reservoir

    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.

  • Kimber G
    Kimber G Member Posts: 1
    edited November 2016 #7
    I got mine in 1989

    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?

  • satenama
    satenama Member Posts: 8 *
    #8
    https://csn.cancer.org/discussion/comment/1504611#Comment_1504611

    I'm sorry to tell you this, but unless your Ommaya reservoir has complications, it will never be removed. No surgeon will ever touch it because of the risk of bleeding on the brain and other risks. Your body's immune system will have encased it in protective layers of tissue (kind of like a pearl), so ripping all that extra tissue out would be a bloody mess in the brain. Of course, like many others, the MDs told me it would be removed after chemo, but I guess they felt ok lying to me because they didn't expect me to survive my Leukemia either. I'm so sorry to anyone who experienced this kind of physician deceit too, as I know the psychological struggles the Omaha has caused for me as a young female (oh, those backward conversations with the hair stylist, massage therapist, and new boyfriends), and now continues to cause me worries about the plastic's breakdown and complication in my brain as I advance in age. I've had my shunt since 1993. I also have been cancer free since 1994, just celebrated my 28th year F-You. I'm facing the realities now of long term side effects from 3.5 years of chemo tx on my body, but that's for a different post. Big hugs to all those who come here searching for answers, comfort, and hope.

  • satenama
    satenama Member Posts: 8 *
    #9
    https://csn.cancer.org/discussion/comment/1559880#Comment_1559880

    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.

  • satenama
    satenama Member Posts: 8 *
    #10
    https://csn.cancer.org/discussion/202622/ommaya-reservoir-removal-anyone-experience-this
    https://csn.cancer.org/discussion/comment/1701133#Comment_1701133
    https://csn.cancer.org/discussion/comment/1421249#Comment_1421249

    I'm sorry you were lied to about your Ommaya and as such your autonomy stolen from you, how ever noble the doctor's reasoning seems to them at the time. I was lied too, very similarly. I guess they never really expect us to be around in 5 years to complain about their deceit, and if we are we should be somehow grateful to them for preserving our hope and will. Having survived Leukemia treatment 28 years now, and had this shunt in my brain the whole time, I find that my personal Autonomy is most vehemently precious to me, and I give that respect to others in return. I've written my experience with Ommaya in a couple of posts on this subject thread here, so if that interests you, check them out. Take care, FactoryStress.

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