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Thread: Need Urgent Help for Friend possible SCI

  1. #1
    Senior Member
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    Need Urgent Help for Friend possible SCI

    I need advice for a friend in Reno, Nevada. Background info, she's a 20 something female Veteran with PTSD and a leg injury. Leg will be amputated later this year, but for now she is in a wheelchair and has a service dog. I'm a C5 walking quad, Brown Sequard Syndrome, Asia D, so I've been in close contact with her for the last week trying to help her figure things out and explain everything that's been going on with her body, and giving her advice the best I can. We've now run into a brick wall and don't know what to do next. Here's what happened:

    Last Sunday, a week ago yesterday, she had a mishap doing adaptive skiing. Trying to get on the lift she got hung up and was hanging from the lift by her neck. Paramedics thought she had broke her neck and she was rushed to the (civilian) ER. The ER did a CT Scan and diagnosed her with a sprained spinal cord and sent her home with pain pills. On Monday she lost all feeling/sensation in her back, so she went back to the ER. They did an MRI and told her it was just nerve damage from being dragged along the snow under the lift, told her to up her dosage of Neurontin, and that feeling would probably come back in a week or so, and to follow up with a spine doctor. So she went home again. That night she start having problems emptying her bladder. By the next morning she could not empty it at all and was incontinent. She went back to the ER for the 3rd time. After sitting at the ER for hours, including in a room for several hours with no one doing anything, she grabbed some catheters out of a drawer and left. I don't agree with what she did, she should have stayed and waited until she was seen, but she was exhausted, stressed out, upset, and out of patience with everything. I can't change the fact that she left. She called me when she got home to find out how to cath and I was able to walk her through it and things stayed the same for the next few days. She would feel the urge to urinate, but was unable to make anything happen so she cathed. She also does not have control over her bowels. When she feels the urge she sits on the toilet until it works it's way out.

    She has been trying to get an appointment set up with a spine doctor at the VA, but from what I'm understanding, she hasn't been able to get through on the phone. I don't know the process of getting an appointment with the VA, so I'm not sure what's going on.I have been pushing her to go to a different ER since the one she has been going to just keeps sending her home. She's a veteran and has VA hospital privileges, but lives 4 hours away from the closest one, so that hasn't been an option. On Friday, her bladder started leaking between cathing, so I convinced her to go to another ER. She made the 4 hour drive to go to the nearest VA ER. When she got there, they refused to see her because of her service dog. After she pushed them quite a bit and quoted laws regarding service dogs, they put her in a room, gave her an injection of dilaudid, and started the process of diagnosing her. The plan was to do an MRI next and go from there. Next thing she knows, there are VA police in the room removing her neck brace and telling her she has to leave because of her service dog. She can either hand her service dog over to the police and be treated or leave the hospital. She refused to hand her service dog over to the police and rightly so...when you have a $10,000 piece of medical equipment, which a service dog is, you don't just hand it over to strangers, especially when it's something you need to use during that period of time. They kicked her out high on pain meds and exhausted with no sleep all night long and no answers. They did tell her that they thought her incontinence could be from taking the Tramadol she was given, but they never got around to doing the MRI to rule out SCI.

    So anyway, this is where we are at now. She left the hospital with no answers. We don't know if she has a spinal cord injury or what's going on. She still has no feeling in her back, her bowels are still the same, and her bladder is getting worse and worse. She doesn't know what to do now or how to get help or answers. She is kind of in denial...she has enough problems with out a spinal cord injury, so she kind of avoids the issue until it gets worse, like this new problem with her bladder. I spoke to my nurse at Shepherd Center who said it sounds like her sprain could be progressing to a more serious SCI since bowel and bladder issues are the hallmark symptom. Where does she go now? What does she do? Even if she gets through to the VA to set up an appointment to see a spine doctor, it could be weeks or months before she can actually be seen. What does she do in the meantime? She only has 5 catheters and her bladder is leaking quite a bit.

    I just don't know what to tell her to do now. Any advice or suggestions?

    Thanks!
    Tina
    C5-C7 Walking Quad - Very Incomplete
    Aug '03

  2. #2
    That is quite a story.

    There is a spinal cord injury nurse (KLD) on Care Cure Community, who works at a VA in or around Los Angeles. Hopefully, she will see this and will have some answers to help, especially regarding VA protocol and practice.

    Has she been seen by a neurologist? I know there is some disagreement about whether one should be treated by a neurologist or an orthopedist when a spinal cord injury is suspected. My preference is a team approach, but right now, she has got to try to make a case to see someone ASAP to get a definitive diagnosis and treatment plan. She may be doing herself harm and making her situation worse by not getting the proper care.

    All the best,
    GJ

  3. #3
    Is she in contact w/PVA (Paralyzed Veterans of America)? It often provides an advocate for injured service members as they attempt to access a confusing and complicated medical system. Use the link to access the PVA page. Click on "Get Support" tab and go to the "Medical Services" option as the tab pulls down. There are doctors and nurses who can help her access the VA system.

    http://www.pva.org/site/c.ajIRK9NJLc....BCBB/Home.htm

    I hope your friend finds the answers and help she needs. Keep us posted, eh?

    Also, the PVA should have info and a contact to sort out the VA ER personnel re: service dogs.

  4. #4
    I did a little browsing online.

    You mentioned that your friend lives in Reno, Nevada and has presumably has a VA ID card.
    The closest VA would be:
    [TABLE="width: 100%"]
    [TR]
    [TD]
    Reno
    [/TD]
    [TD]VA Sierra Nevada Health Care System
    1000 Locust Street
    Reno, NV 89502
    Phone: 775-786-7200 or (888)838-6256
    http://www.reno.va.gov

    They have an Emergency Room. Their website says they also have a Primary Care SCI outpatient clinic if it's eventually needed.
    Does she already have a VA Primary Care Physician at that facility? If not, their website has instructions for obtaining a doctor who can refer her to specialists while her spine evaluation is in progress. Can she get a copy of the initial MRI ? That might be helpful for comparison if a new one is obtained.
    With the exception of federal wilderness areas, federal facilities are not governed by the ADA. There is a policy regarding trained guide dogs and trained service dogs on VA property. http://www.va.gov/vhapublications/Vi...sp?pub_ID=2391
    If her dog doesn't meet the VA requirements, she might have to temporarily leave it in a friend or neighbor's care while she's being evaluated.
    I hope that your friend gets the help she needs.
















    [/TD]
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  5. #5
    All of the above responses are good. If she is unable to urinate that is considered a medical emergency and she should go to the ER.
    After that hopefully the ER will refer her to a neurologist to see what is going on, get a physical exam, MRI, EMG could be some diagnostics studies.

    If the symptoms are annoying but not life limiting, she should contact her primary care provider within the next1-2 weeks and get a physical exam then a referral to a neurologist.

    I also work at a VA and this is what I would recommend

    I wish her the best I am so sorry for her troubles.

    pbr

  6. #6
    Senior Member
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    Thanks everyone, and so sorry it has taken me so long to get back to this. I've had a crazy week. We did get her in contact with PVA and they are going to "pull some strings" to get her in to be seen by someone. I contacted Life After Spinal Cord Injury on Facebook (run by Uromed) and they got her in contact with PVA, so we are both so grateful to both groups. It's a relief to find someone who cares and is willing to help her get the care she needs. I have not checked in with her in a couple days due to my craziness, so I don't know if anything has been set up, yet. I will keep you posted on what happens as long as things don't get even crazier with me! haha

    As far as the SD issue, 2drwhofans is correct. Government facilities, including VA Hospitals, do not fall under the ADA, and it seems that even though there is a standard policy for service dogs, each Hospital has it's very own policy and there's really not much she can do when they decide to deny her service dog based on their past experience with another service dog who was not trained properly and was out of control, which is the reason they gave her for kicking her out with her perfectly behaved service dog.

    Thanks again, everyone! I appreciate the help and advice. Now just cross your fingers that this IS just temporary and she doesn't have to cath for the rest of her life or have things get even worse.
    Tina
    C5-C7 Walking Quad - Very Incomplete
    Aug '03

  7. #7
    Super Moderator Sue Pendleton's Avatar
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    She should probably call the PVA back and ask about getting a RSO on her case to help her jump the hoops faster. She is due a lot of benefits for her service and having an RSO to turn to and guide her through the maze will help her quality of life immensely. They can also help with other adaptive sports and educational benefits besides dealing with the medical part of the VA.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  8. #8
    2drwho - is correct. There is a VA hospital here in Reno, NV.

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