If you don’t know what your options are, you don’t have any.
SCI trauma is complicated. Obviously, the more you know about what’s going on the better – you can’t make good choices if you’re in the dark. So learn everything you can about SCI. It’s an extremely complex and risky medical situation, affecting multiple body systems. It’s emotionally complex – all the more so if you have no idea what to expect. It’s crazy expensive too – you’ll learn that soon enough.
SCI messes with the body in many ways. Early on, you need to learn to take care of skin, avoid infections, manage bladder and bowel functions, etc. We’ll look at a list of ailments that come with SCI, including chronic pain and spasticity. We’ll address the topic of sex.
For injuries in the upper part of the spinal cord, issues with breathing can be critical. Autonomic dysreflexia is a blood pressure issue that becomes a dangerous complication – all the more so because most doctors outside of the physical medicine area don’t know about it. It’s potentially lethal, so learn about this early, and save yourself a lot of aggravation.
SCI messes with the mind, too. Depression is often a major part of this, but to a large degree, it is treatable. There are no magic words to replace the loss, to make this go away, or to make sense of it. Counseling is a good thing if you can find it. Reclaiming yourself and your self-worth will be a work in progress.•
Get the First 90 Days book now. Download the SoCal book or the edition for the Rocky Mountain States. Read the basics, and follow up with resources that match your needs.
SOMEBODY NEEDS TO TAKE CHARGE
It’s obvious right away that this is a time to call in family and friends to help. No doubt your people are freaked out and lost in this new world, and no doubt they have been all over the Internet, trying to process the madness of this major traumatic event. If you’re lucky enough to have the First 90 Days book in hand, you will know how to dig deeper and faster, without having to sort through so much online noise.
Here’s some advice to family and friends of a newly injured person: Check the local and national resources. These places offer a lot of material, and some have staff that can help. The Reeve Foundation, for example, has trained resource specialists on call to handle inquiries related to paralysis (call toll-free 1-800-539-7309).
Get smart fast; someone needs to come forward and be the primary advocate for the patient. Someone needs to take charge of his or her interests, to be the point person, the hub of information, and in some cases, the nag. It’s not an easy time for anyone involved, but things are going to be decided in coming days that may make a big difference to the person dealing with SCI. In a perfect situation, a patient advocate would suddenly emerge to handle all of this, making sure the patient’s needs are top priority. You may be able to find private services that do this. You may have to take it on yourselves.
In most trauma hospital settings, a case manager or social worker comes into the picture once you’re basically stable and able to pay attention to important decisions ahead. One of the first things you have to address is where you are going next. Figuring out your next move begins right away. You will need to know details about your insurance coverage.
No insurance? You aren’t alone – half of the cases in a big national SCI database did not have insurance at the time of injury. Don’t worry, they can’t kick you out of the ER if you don’t have coverage, and there are good rehab options for all patients.
CHOOSING A REHAB
Get the First 90 Days book. Download it now. See the chapter on picking a rehab, beginning on page 48. There are dozens of inpatient rehab centers in SoCal and in the Rockies. They are not all the same. Try to get to a place that has a high volume of SCI cases, and one that has accreditation in rehab medicine. Rehab doesn’t last long so get the best you can.
Insurance dictates choice in many cases. You may not always get what you think is best. But you can appeal. You might make a case that the expert care you require is not available at the rehab the insurance company picked. See the First 90 Days book, page 64, for a discussion of appealing insurance coverage decisions.
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