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Where to Find Best Whole Body Care for SCI

TomGTomG Member Posts: 1
My partner and I live in Boston. Though we are close to a number of highly esteemed hospitals, notably Mass General, it is very difficult to find her a provider who actually *specializes* in all matters related to SCI. Yes, she has a PCP, a physiatrist, and sees wound care/plastic surgeon providers, but it's not facilitated by one person whose practice is focused on SCI.  It's shocking how many providers and technicians are, I daresay, paralyzed with uncertainty when we show up for an appointment. 

Wound care in particular has been very trying for us. We're grateful for the help we've received, but I want to believe there is someone out there -- anywhere in the US -- who's doing more advanced care in the area of pressure ulcers. If anyone can highly recommend a gifted provider or clinic in the US worth reaching out to, we would be most grateful.


  • heatherkrillheatherkrill Moderator Posts: 67 Moderator
    10 Comments First Anniversary 5 Likes 5 Awesomes
    Yes, please, this is important information!  @TomG I'm going to try to repost this in another spot under medical or health and wellness to see if others will locate it there and have some responses.  Thank you for writing! 
  • heatherkrillheatherkrill Moderator Posts: 67 Moderator
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    @AskNurseLinda maybe you know how do copy @TomG's above question about wound care and total SCI care?  I'm not sure how to put something in a different category...Please help!  Thank you! 
  • AskNurseLindaAskNurseLinda Moderator, Information Specialist Posts: 108 Information Specialist
    25 Likes 10 Comments First Answer Name Dropper
    Hi, Tom G. and Heatherkrill, I can help with this issue, Tom. You are involved with all the individuals but the captain of the team is a specialist in spinal cord injury. A medically educated physiatrist is one who cares for individuals with physical rehabilitation needs. In particular, you would be seeking one who specializes in SCI. That is the question to ask when making the appointment, a physiatrist that specializes in SCI. The East Coast has many of them. Most work at rehabilitation centers but they have large outpatient clinics. In Boston, there are several rehabilitation centers including Spaulding, New England Regional Spinal Cord Center, Brigham and Women's, Tuft's and others. There are probably additional sites including physiatrists that work independently in the area. The SCI physiatrist will take care of the everyday spinal cord injury questions as well as refer you to specialist that work with individuals who have SCI and are familiar with their needs. 

    You are not alone in this process. But this will work out for you once you get into a system. To be sure you have coverage, call the number on the back of the insured's healthcare card and ask which service they contract. That way, you will be assured of payment as allotted by your payor either public or private. While on the line, ask for an insurance case manager. You can contact that person for payment of needed treatment and equipment. It is beneficial to have a good relationship with the insurance case manager. They can help you navigate your payor system. 

    The Paralysis Resource Center at the Christopher and Dana Reeve Paralysis Foundation have lists of SCI physiatrists in just about any area. Their services are without charge. https://www.christopherreeve.org/living-with-paralysis/about-the-paralysis-resource-center
    Nurse Linda

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