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Thread: Spinal cord tumor

  1. #1

    Spinal cord tumor

    Any idea if this is true or not? Recently my friend was told she has a tumor on her spine and it was cancer. No more info than that other then they gave her radiation and has just been laying in different transitional hosp, nursing homes and now hospice for 3 months. She feels great and is in great spirits. They give her no meds and she has no pain. I told her to get another opinion. She says she was told if she seeks another opinion or treatment outside of the hospice she will be kicked out. This does not sound right. She is in Torrance, Ca. Can anyone offer an suggestions as to where I can go to get the right info for her. I am her only family. Extreme pain started at work, could not rise, finally was able to and go home. Took a few days off from work, pain got worse and she was transported to local BIG hosp. It has been no info or help from then on. Plus she has to pay $6,000 for the hospice care. Where do I start to help her get another opinion.
    Helga

  2. #2
    Important to know what kind of spinal cord tumor, and if it is a primary or metastatic tumor. Has seen been seen by a neuro-oncologist?

    What insurance does she have? Is she on Medicare?

    It is true she will have to come off hospice care if she pursues more treatment, but if it will save her life, then that may be needed. Is the bill for hospice if she leaves hospice now or for the future? She can always get recertified for hospice again in the future if she finds no answers elsewhere.

    In the Torrance area, she really is not going to find really expert care for a condition like this. I would be looking for help at Cedars-Sinai in LA or at UCLA.

    (KLD)

  3. #3
    Thank you. She has Healthcare Partners. Because they told her " You have 6 months, get your affairs in order" she gave up her car and apt because of stairs. Where would she go to live while seeking treatment/2nd opinions? My house won't work either and she has no family. I really appreciate your help.
    Helga

  4. #4
    Is she on inpatient hospice? She can live in a regular nursing home bed if she cannot get her own place...even a studio apt. Was she private paying for inpatient hospice care or was her insurance covering this? I assume that this is an HMO, correct?

    Is she eligible for Medicaid? SSDI? Medicare?

    (KLD)

  5. #5
    Must have spread from somewhere else/ I don't know of any spinal cord tumor that they would just give you 6 months. Or could be in other organs also.??
    CWO

  6. #6
    Sorry your friend is ailing. If you are the only person advocating for her, I believe you can discuss with her the possibility of naming you 'power of attorney'. There is also some kind of document to enable you to talk with the medical staff about her care. There must be a social worker there who could be helpful to you in coordinating her needs and letting you know about what kind of "release of information" would enable you to discuss things about her.

    Don't know if it's possible but it would be great if you could travel to her to help.

  7. #7
    Thank you. Yes I plan on going down there Tuesday to see her. She told me, she was told 2 days ago she now has a pressure sore (3) and" it's no quite a 4". If it doesn't get better then you will have to be transferred as we can not take care of that for you."
    I told her to request a transfer to hospital where she can see a wound care specialist, get a LAF mattress and start eating protein. She is eating very little because someone else has to clean up her bum. REALLY!
    All they do is scrub it and put some sort of paste on it. This paste dries and next time they peel it off and add more,
    Would you know how I could go about getting her to rehab hospital that knows spinal issues and possible teach her to turn over as she has NO clue as to how to do this because she was told "the tumor is preventing her from lifting her legs.
    I am so anxious to see her and hopefully get her out of there to a better medical situation.
    Helga

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