Dr. Edward Nieshoff

Sue Maus introducing Dr. Edward Nieshoff from the Rehab Institute of MIchigan at U of M. Someone from this group has been with us every year since the beginning.

I want to show you how to make the most of intensive treatment; for the record I have financial support from the Pfizer institute.

Our strategy #1 is to figure out how to optimize muscle strength. Everybody knows that sci causes severe loss of muscle bulk, and there are often metabolic changes that cause rapid fatigue, especially in weight-bearing muscles.

One reason for this is that hormones change after sci . . . men lose a lot of testosterone, and many of them suffer from Low T syndrome. They have decreased energy, sex drive, energy -- but check with your doctor & find out if this is affecting you.

If you have low T, get some. If you don't, think about a hormone called oxandrolone. It's been studied in men with HIV, helping improve strength, endurance, sense of well being . . . also in a study of patients with burns, who had an average of 28% lower hospital stays. The results were so good that they stopped the trials early. The drug increases protein build up. Another doctor worked with patients how have decubitus ulcers and found benefit for them.

This drug is powerful but not necessarily benign . . . there are multiple potential side effects, including liver damage, hepatic tumors, lipid changes, acne, oily skin, mood changes, trouble sleeping, trouble urinating, breast swelling, prolonged erections, deepenng of the voice, unusual hair growth, allergic reactions.

If you choose to take it, you need regular liver testing to make sure you're not one of the small number of people who end up looking like the person on the screen -- a grossly over-steroided guy with bicps bigger than his head, and don't even get me started on the shoulders.

Strategy #2: optimize the heart function. When you first get an sci and then try to get out of bed you pass out. This gradually goes away over the first several months. Your blood pressure drops when you go from lying to sitting or from sitting to standing. There are some people who just can't tolerate getting into a standing frame, though, ever. There are also people who experience what they call exertional hypotension, which is getting very low blood pressure due to exercise.

If either of those is you, there is a drug called Midodrine that has been shown to improve activity tolerance and uprightness tolerance.

It also helps with exertional hypotension. There are quad athletes who do a thing called "clamping" -- which, yeeks! -- clamp off the foley to make their blood pressure go up. Apparently it works. It actually gives them a big performance bump, but is of course not very safe. Using midodrine does the same thing without the danger of dysreflexia.

Who should get midodrine? Someone who doesn't get relief from wearing a belly binder, because it's never a good idea to start with the drug. Potential side effects are AD, headache, gooseflesh, urinary retention, allergic retention. If you take it and then lie down, these things are more likely to happen.

Another drug: Clonidine

It's an old-fashioned drug that was originally developed to treat hypertension. It's similar to Zanaflex. Some people experience more side effects, some get more benefits. it can have a paradoxical hypertensive effect . . . in a normal person the blood pressure will drop with this drug, but in some people with sci, the drug raises the blood pressure. Sometimes it's used to treat drops in blood pressure with standing or walking.

Some studies (not controlled and rigorous) have shown that it helps a very significant percentage of people with sci who have spasticity.

Showing a slide that references a study by GUERTIN in 2009 that showed benefit of other drugs in walking, but not clonidine.

Basically with clonidine, it's a mixed bag. Some people experience it like fairy dust, some have a bad reaction, but the scientific community has not landed on any coherent explanation of why, in either case.

He concludes by saying that the optimal treatment means a comprehensive subspecialty care regime plus a good therapy program.

Very good stuff -- informative and clear.