One of the most important things you can do either prior to leaving rehab or just after leaving is to find good physicians in your area that will help manage your loved one’s spinal cord injury.
However, when looking for physicians, you may quickly find that there is no one in your area that specializes in spinal cord injuries. Or you may find that the ones that do, may not accept your insurance.
This shouldn’t (and won’t) prevent you from putting together a good team of doctors to help your loved one manage his or her injury.
Prior to reaching out to any specialists, you should reach out to your loved one’s primary care physician. He or she should know what happened and, if possible, should see the patient just after release from rehab. If anything, this is a good check-in with a physician in your area that you knows the patient’s history. Also, it’s a good idea to send copies of the medical records from the patient’s stay in rehab to the patient’s PCP.
Most insurance companies require the primary care physician (PCP) to make referrals to specialists so having an initial appointment just after release from rehab will help establish a baseline with your PCP. Note: If your loved one does not have a PCP, immediately get one. Individuals with spinal cord injuries need routine checkups in addition to other physician and hospital visits during the year.
During the visit with the PCP, a discussion should be had regarding the team of physicians/specialists that are needed for the patient with the SCI. This team should include the following, at a minimum (if possible); a physiatrist, a urologist, a physical therapist, and a counselor/therapist.
Physiatrists are certified as specialists in rehabilitation medicine by the American Board of Physical Medicine and Rehabilitation. Physiatrists are nerve, muscle and bone experts and treat injuries or illnesses that affect how you move. A lot of physiatrists work with a team of physicians and may have access to specialists who have worked with patients with physical disabilities. If possible, start with finding a physiatrist and find out who they may suggest for additional specialties. Physiatrists will typically be in charge of the main medication that patients with SCIs take on a daily basis; baclofen (or at least ours is…).
Urologists have specialized knowledge and skill regarding the urinary tract and most SCI patients will need someone who specializes in this area of the body. Urologists are especially important for those with indwelling catheters which may require routine maintenance and evaluation. It’s also incredibly important to evaluate kidney function due to the types and amount of medication the patients must take to function.
Physical therapists may not seem like a likely requirement for some patients who have been told that they “will never move again.” But if you can find one in your area that will work with the function your loved one has, go for it. Movement is incredibly important for those with SCIs and has been shown to be incredibly beneficial for the patient. Some PTs are limited by insurance policies (number of visits, improvement in patient) so find out if you can pay out of pocket for additional appointments and body work.
Counselors/therapists are obviously extremely important. Your PCP should know all depression/anxiety medication the patient is taking but finding someone to talk to about your injury will go a long way towards overall healing. See How To… Find a counselor for more information.
Ensuring that your loved one has the best care is crucial towards living a full and healthy life. Physicians in your area most likely will not know the intricacies of spinal cord injuries but do not let this stop you from making appointments. As a caregiver (or patient), you may have to educate them so be prepared when going to visits. Do not be afraid to speak up and educate the physician on SCIs. It will only help the patient/physician relationship and the patient’s health.
Also, do not be afraid to find a new doctor. If you initially see a urologist that doesn’t listen or understand, find a new one. It is incredibly important to see physicians that make you feel comfortable since you will be much more willing to see them and stay healthy.