Outdated/Misleading SCI Information

Yes,...so very Yes. The people (therapists, for example) who were supposed to “know things” and clue me in when I was first injured, were very arrogant and inflexible in how they “graded” me on my lack of progress. I was overweight and had an 8-year-old shoulder injury. Months later, after I lost weight, my (forever) injured shoulder was - and has continued to be - able to drag my body in and out of bed. The “hurry up and do it” climate of the therapists could have caused my shoulder such permanent injury that I wouldn’t have been able to use it for my current independent living. Some people study, get certified, and get told that they are “state of the art” brilliant, when they really have no common sense, no appreciation for a long-term goal, and no humility to listen to the patient. Of course, the medical insurance time-line and their paychecks are their main motivation. Bad enough to be cut off from receiving therapy, but to be labeled a quitter or a failure is insult added to injury.

This wasn’t about actual nerve improvement, Lara, but it is about improving in an important skill. I hope it is close enough to what you were talking about.

Many doctors will only accept information out of medical journals. Those same doctors say that reading on-line forums, where the experience of thousands of SCId people resides, is a waste of time. I look for different docs when that happens.

I also think some doctors that don't specialize in SCI get frustrated with the challenges that come with it, and sometimes give up after awhile with the thought that what they've done is good enough. There are so many alternate therapies, homeopathic routes, etc. that can help. Everyone's injury is so different! What works for one patient won't for another.

I must have been lucky in that my physical therapist flat out told us that there's no such thing as a definitive book on spinal cord injuries. She told us that every injury, even those at the same level are very different just as each of us has different personalities. She said that over time we will know our body better than the doctors. I see it with my doctors and somehow manage to get my point across to them that my body isn't like others with the same injury. When I was first injured the doctor said that I could expect to live about 17 more years, well I've doubled that and still going fairly strong despite some infections. He also thought I was crazy about having sensation but after testing, he admitted he was wrong.