Danger of "Innovative" SCI Treatments

Recently I saw a post on a Facebook group for a high schooler recently paralyzed in a gymnastics stunt. She was discharged from the hospital around Christmas and recently was released from her neck collar. With so many similarities I was eager to follow her progress. The recent post stated she and her parents went to Mexico for exciting treatments "not approved by the FDA." It went on to say she was being injected through her belly button with stem cells.

Red flags flew up for several reasons. First, I don't like the idea of going abroad for treatments medical professionals in the States won't perform. Second, I don't like the idea of some doctor abroad injecting biological material in somebody. Third, from what I understand there's no way for stem cells injected in the belly button to migrate to the spinal cord.

I expressed my concerns to the Miami Project. Their response:

Thank you for contacting us and for your concern about the stem cells.  There are no proven treatments utilizing any kind of stem cell so far and as you know there are several experimental “treatments” being introduced for purchase without a valid clinical trial program being completed, leaving their safety and efficacy untested.  This is a great concern to researchers, clinicians, and most importantly people with paralysis.  It is unethical to charge people money for unproven medical treatments.  It is important to remind your friend that any cells that are put into your her can never be removed and it will exclude her from participating in valid clinical trials.

Another important point from her response:

There are three main reasons why a person might feel better that are unrelated to the actual stem cell treatment: the “placebo effect”, accompanying treatments, and natural fluctuations of the disease or condition. The intense desire or belief that a treatment will work can cause a person to feel like it has and to even experience positive physical changes, such as improved movement or less pain. This phenomenon is called the placebo effect. Even having a positive conversation with a doctor can cause a person to feel improvement. Likewise, other techniques offered along with stem cell treatment—such as changes to diet, relaxation, physical therapy, medication, etc.—may make a person feel better in a way that is unrelated to the stem cells. Also, the severity of symptoms of many conditions can change over time, resulting in either temporary improvement or decline, which can complicate the interpretation of the effectiveness of treatments. These factors are so widespread that without testing in a controlled clinical study, where a group that receives a treatment is carefully compared against a group that does not receive this treatment, it is very difficult to determine the real effect of any therapy. Be wary of clinics that measure or advertise their results primarily through patient testimonials.

These are extremely important points we need to understand and educate our peers on.

We who live with spinal cord injury and other neuromuscular conditions understand the peculiar nature of the central nervous system: no two injuries result in the same exact symptoms. As the body heals over days, weeks, or years improvements come and go. In the first year particularly the body recovers significantly.

If you really want to walk again, the best route is to join a trial going on at research organizations like the Miami Project. Active participation in physical treatment goes a long way toward rehabilitation, maximizing the body's potential. These efforts benefit individuals and future recipients of treatment.