NYT on Zamboni "liberation"

Today's NYT presents a piece about the Zamboni "liberation" procedure as a case study in patient use of the internet:

The controversy has exposed the deep frustration of many people with this incurable, disabling disease, who feel that research has let them down. It is a case study in the power of the Internet to inform and unite angry patients—which may be a double-edged sword. Pressure from activists helped persuade the Multiple Sclerosis Society to pay for studies of Dr. Zamboni’s theory, but the Internet buzz has also created an avid market for a therapy that is still unproved.

“It’s eye-opening the way this group of patients has grabbed hold of the social-networking technology,” said Dr. Simon, an interventional radiologist at JFK Medical Center in Edison, N.J. “They’ve taken this to a level I’ve not seen in other patients. Patients used to read an article or two. Now, they’re actually seeing procedures on YouTube. Is this the future of medicine?”

If there was a cure for MS, I'd be in a hurry, too. But the only way to know if this CCSVI is for real is to wait for the scientists.

Try Googling 'CCSVI' and you'll find plenty of people who already want to sell you the miracle cure: No waiting! Top docs in India! A woman described in the NYT managed to pursuade an interventional radiologist in the US to perform the procedure, for about $10,000:

Although it was, technically, an experimental procedure, Dr. Simon said he did not have to ask his hospital for permission to perform it. The details were similar to other procedures that interventional radiologists do every day. It is not uncommon for them to take a device approved for one purpose and use it for another, like putting a bile-duct stent into a blood vessel — a practice called “off-label” use, which the Food and Drug Administration allows. Interventional radiology, Dr. Simon said, is an “off-label specialty” that depends on innovation and adaptability.

Eh, not quite

Let's sum up: the condom catheter, or "Texas catheter" (I wonder why that is) is a pain in the ass to get set up, might lead to a bladder infection, and could be a serious hit to your self-esteem. For me, it isn't right for daily use, but I think there might be occasions for which it would be a big help. Maybe for travel or events where one might not be able to get to the bathroom for long while.

I guess if there were any magic-bullet interventions out there, they probably would have been fired by now.

A few hitches

1. I am blessed with a dually-dysfunctional bladder: it wants to let stuff out when I want to hold it in, but it won't empty completely when I ask it to. I can usually persuade it to empty most of the way by gently pressing on and massaging it with my hand. That's fine when I'm standing at a urinal, but when I'm at my desk it might look a little weird. The upshot is that the bag will be happy to catch whatever my bladder decides to let out, but in order to truly empty I'll still need to adjourn to the men's room. If I don't, I run the risk of developing a bladder infection--something I haven't had a problem with yet.

2. I need to figure out how to keep the bag up by my knee instead of down by my ankle. As the bag fills, of course, it gets heavier and starts creeping down and pulls at the "condom."

3. Walking with a fullish bag, especially one that's slid down a bit, causes an audible gurgling/sloshing sound.

OK, that was weird

I suppose after a while, I will learn not to panic at the sensation of something warm running down my leg. It's going to take some time, though.

It felt a little odd to lock myself into a stall in the bathroom, prop my foot on the toilet, pull the cuff of my pants up, and release the valve on the bottom of the bag. But maybe not quite as odd as locking myself into a stall to change my own diaper 3 times during a work day.

It feels, and looks, sorta precarious, just sorta taped on there, connected to some tubing that leads to a bag on my shin.

I'm really, really self-conscious today

A casual Friday in summer seems like a good day for one's first try with an external catheter, or what the packing calls an "incontinence management device" (IMD). Today, I'm experimenting with a device called the GeeWhiz, an award-winning variation on the condom catheter. In a nutshell, it differs from the usual setup in that the "condom" is held in place not just by taping around the outside but also by a piece of double-sided sticky silicone on the inside as well. (You can see a creepy diagram here) We'll see if this clever design is worth the added expense--a 10-pack of daily use kits plus a leg bag and bed bag costs $59.95 + $10 shipping.

Putting the thing on wasn't too bad, but if I'm going to use this thing on a regular basis, I'm definitely going to need to give myself a trim in that region. And the tube that extends to the leg bag is definitely visible through my khakis.

Summer

Summer ain't what it used to be. I've still got the fishing boat, mainly because it was easier to ignore it than to sell it, but I haven't been back out since May. My hope is that I'll be able to persuade my wife to join me for a few lazy afternoons when it's not too hot. And I'm resigned to putting a little more money into it to fix a few small annoyances.

I'm also resigned to making some adjustments in my own life. I caved in and ordered a condom catheter set-up, having reached the point where I'm having to change pads 3 or more times a day. I'm hoping it will save me a few trips to the bathroom during the work day. I'm also hoping I can figure out how to keep my gut working properly--I'm going to see a new GI doc next month. If I can get my plumbing issues under control, I think I stand a much better chance of staying in the work force. If not, I could end up trying to get disability benefits based not on crushing fatigue, cognitive decline, or neuropathic pain, but on the basis of a hyperactive bladder and a lazy colon. I can't think of a more annoying end to my career.