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Post-Surgical Rehabilitation Options Needed - California, 4-6 Weeks Duration - Severe ME

Discussion in 'General Treatment' started by EsetIsadore, Apr 8, 2018.

  1. EsetIsadore

    EsetIsadore

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    I’m wondering if anyone here with severe ME has gone to a rehabilitation facility within the US.

    Very soon, I will be heading to Los Angeles in order to receive a blood patch for a longterm CSF leak. We have just began a rapid search for a California-based rehabilitation facility that could care for me during the 4-8 week healing period afterwards, since I’ll need more than what my home environment can provide me.

    These environments are not designed for those of us with ME. We’re trying to figure out where I can go that my insurance will cover and that can be safe and truly healing for me.

    I’d love to hear from others with personal experiences!
     
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  2. alkt

    alkt Senior Member

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    I think rehabilitation is the wrong choice of words convalescence might actually be what your looking for .unless you actually want to do graded exercise .
     
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  3. EsetIsadore

    EsetIsadore

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    Convalescence is the goal. However, there are no such options within our medical system. Rehabilitation facilities are the closest we have in the US.
     
  4. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I think a lot of people are going to be confused by your use of the word "rehabilitation." I live in the US and I know that is what they are called and both parents have used them. They are especially helpful to patients convalescing from surgery.

    For your purposes you might get more responses by changing the title of your thread to "Need a place to convalesce 4-8 weeks near Los Angeles."

    I wonder if any of them have private rooms. Most of them are two-to-a-room.
     
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  5. EsetIsadore

    EsetIsadore

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    Thank you. I imagine that title change would be less triggering for others and may elicit more help.

    Unfortunately, while my primary need is to convalesce, my purpose in having to find a way to do this within a rehabilitation facility is because my spine will need to remain stable and I have a neurological condition(Hemiplegic Migraines) that means I cannot do this - even were I somewhere with a helping set of hands. I cannot envision any feasible way to receive the help I’ll need other than in one of these facilities.
     
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  6. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Even if you said "Need rehabilitation center in Los Angeles area to recuperate from spine surgery for 4-8 weeks" I think more people would understand your need and click on your post.

    There is one person who recently had to look for rehab centers in that area for her now deceased mother. There may be several others from that area. Adding a geographic location helps a lot.

    I hope everything goes well for you and you find the help you need.:thumbsup:
     
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  7. EsetIsadore

    EsetIsadore

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    How do I change a thread’s title?
     
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  8. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    To change the title:
    Go back to the first post. On the upper right it will say Thread Tools.
    Click on Thread Tools.
    Click on Edit Title.
    Type how you want your new title to read.
    :nerd:
     
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  9. EsetIsadore

    EsetIsadore

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    I’ve learned that there are three categories for aftercare considerations within the US medical system:

    1. Inpatient Acute Rehabilitation
    2. Inpatient Longterm Acute Care
    3. Inpatient Skilled Nursing

    I won’t likely qualify for category #1. This is likely for the best, as it requires more daily rehabilitation that, even in customized form, I can’t imagine handling. I’m seeking a safe, and ideally serene, option for the other two categories.
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    That was me and I noticed this post b/c the title said "California". I did a great deal of research on this for my mom and happy to help @EsetIsadore if I can? She stayed at a Skilled Nursing Facility (SNF) for approx three weeks post hospitalization until she passed away (in LA).

    This is pretty accurate.

    #1 is an acute rehab facility which requires a minimum of three hours of rehab per day. It is really for patients with acute injuries or post surgery who have the potential to get better and go home. Acute rehab includes PT, OT, Speech Therapy, etc.

    #2 is an LTACH, or long-term acute care hospital, and from your description you will most likely not qualify. It is mostly for patients on a ventilator, feeding tube, lung vacuum machine, wound vac machine, or attached to machines that require an actual hospital level of care. My mom's insurance denied this even though she'd had three surgeries and terminal cancer.

    #3 is a Skilled Nursing Facility (SNF) and is most likely the only level of care that your insurance will approve (unless you are private pay and that might change the scenario but we were not).

    I think this will be very challenging to find b/c even at the SNF, they really pushed my mom beyond what she was capable of doing and failed to understand that she had terminal cancer. It was not serene and was very loud with roommates, constant TV sets on, and constant commotion in the hallways. And yet when you needed help and pressed the call button, it was hard to get anyone to come to her room.

    There were medication errors and many miscommunications and this was with my family (three of us) with her advocating every single day. It would not have been a safe environment for an ME patient IMO (unless you had very mild ME and were there for rehab from surgery or another purpose). They will push you to do rehab or insurance will try to kick you out. And this was a SNF that had a 5-Star rating from Medicare and was the best of the 5-6 that we visited in person. Sorry to be so negative but wanted to be honest about my recent experience w/my mom.
     
  11. EsetIsadore

    EsetIsadore

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    Thank you, @Gingergrrl, for this generous and heartfelt reply. I’m so sorry for your loss, and also for the reality that your Mom wasn’t able to be in a more peaceful situation as she neared her passage.

    After a 6-night stay at Cedars, which was supremely taxing as only hospital stays can be, I was transferred to the California Rehabilitation Institute where I’ve now been for 10 nights. It took me all this time to get situated, engineer a restful enough environment to sleep, and teach the staff how to care for me.

    I felt I finally made progress, and then was informed they’re planning to transfer me. Where, I don’t yet know. As I understand it, they’re aiming for Longterm Subacute Care. I’m not able to be discharged to home right now and so find myself in a bizarrely powerless situation at present!
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    Thank you.

    It sounded from your first post that you are not from Los Angeles (or from CA?) and I was curious why you chose to come here for treatment or rehab? Do you have family here for support? My mom was not at Cedars but I am very familiar with it. She was denied the LTACH and then the Acute Rehab by her insurance. CRI (where you are now) has a great reputation but my understanding is that the daily rehab is extremely intense.

    Are you being transferred b/c you are not able to do the required rehab so your insurance wants to move you to a lower level of care (a skilled nursing facility or "SNF") or is it the opposite scenario that you require a higher level of care like an LTACH? When you said "long-term subacute care" I wasn't sure which one you meant. But I assuming this transfer is insurance driven?

    Can you find out more information re: WHY you are being transferred clinically and what your options are? It's a very powerless situation after having gone through it with my mom who truly should have been on hospice earlier if I could go back in time (but it was a very different situation than yours).
     
  13. EsetIsadore

    EsetIsadore

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    Thank you for taking the time, energy, and care to correspond! I’m from Chicago, and I have no family or network here. I came for the neurosurgeon, who’s the best in the world, really, for this particular condition. California happens to have a better array of neuro rehab options than Illinois, I’m learning too.

    I can’t believe it, but amazingly, with adaptations, I’ve held up to the therapies! The reasons for wanting to transfer me elsewhere are that I’ve met the goals of an acute care facility (even if not my goals or the goals of those both professional and personal at home) and insurance doesn’t want to keep paying for me here. My conditions are harder to justify to insurance in that sense and they’ve already covered the two weeks I’ve been here, which is a pretty typical length of stay for this level of care.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    That makes sense and we definitely do have some top surgeons here. I was hoping that you had family or someone here for support. Please let me know if I can be of any help.

    That is amazing!

    That's what I figured and insurance will rarely pay for these types of facilities b/c more expensive for them than a Skilled Nursing (SNF). You can appeal but sadly, you will probably not win.

    Did they tell you which SNF they want to transfer you to or give you a list? I may have visited some of them (for my mom). I would not even bother with any that are ranked below four or five stars from Medicare.
     

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