Thursday, October 16, 2008

Small Syrinx, Big Pain, and Faulty Reasoning

Thanks for all your comments to my original post about small syrinxes (syringes) (from 2006).

I noticed that this post gets more comments than any other. Allow me to comment further:

We are in the dark ages of treatment for syringomyelia. There is a lack of education for physicians on what syringomyelia does to a person. The knowledge that is out there is flawed. The biggest problem with it is that physicians (especially neurologists, it seems) focus on the following faulty logic:
There exists patients who have a large syrinx and no symptoms.
Therefore a small syrinx does not cause symptoms.

This is simply incorrect deductive reasoning. It is like saying "there exists a woman who wears no shoes, therefore, all women don't wear shoes".

This pervasive knowledge that a small syrinx cannot cause symptoms is patently absurd. Take my example. I had dermatomal numbness in my pinky and ring finger. First we tried to rule everything else out. MS, vitamin deficiency, carpal/cubital tunnel syndrome. After all that, and a number of dismissals by my GP and neurologist, I insisted on a cervical MRI. My GP chided me for wasting money and perscribed an antidepressant (which never did help). Guess what the MRI showed; a syrinx at C7--the exact dermatome where my first symptoms occurred.

For those of you who have left comments on my original post with similar stories, here are a couple of tips for you:

- See a pain specialist if your other doctors aren't responsive to your needs.

- Shop around for a good primary physician or neurologist (good luck) who will listen to you.

- Try walking every day. Nothing strenuous--but get a pedometer and walk 2 miles every day if you can tolerate it.

- Avoid straining or heavy lifting. 15 lbs is a good limit for anyone with a symptomatic syrinx.

- Get involved--channel your pain into helping all of us who are afflicted with this painful condition and are getting poor medical care.

Also, see my post about pain medication I've tried for syringomyelia.

There are two parts to the posting. Consider printing them out and taking them to your doctor to discuss each drug. Neurontin is the #1 treatment for nerve pain from a symptomatic syrinx--but I've taken it for a couple of years now and it has some negatives. I don't think constant therapy with narcotics helps--and it may actually hurt (according to some of the brightest docs, e.g. Dr. Barth Green IIRC). They make you weak, depressed--that's the last thing we need. Episodic treatment is ok though. Sometimes you just need a break from intense pain.

The most effective drug for me has been dexamethasone, a potent steroid I first tried when I had detethering surgery (that drug seems to have helped more than the surgery). Unfortunately, this is not a drug you can take continually. I find it useful to treat occasional flare ups, but you may need something else to help you sleep--or you'll end up staring at the ceiling all night.

I look forward to hearing more comments from you. Remember: Positive Mental Attitude (PMA). ;-)