Chiari and Syringomyelia Handbook

The Chiari and Syringomyelia Foundation recently posted a very informative book on Chiari Malformation (CM) and Syringomyelia (SM). It is over 40 pages of writing by the best and brightest physicians on the subject. It includes pictures, and is a free download, or you can buy a printed copy for cheap. Thanks to Dr. Batzdorf and others who put this book together.

Chiari and Syringomyelia Handbook.

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). ;-)

Pain Exhibit

A collection of art expressing pain.

Expressing feelings of chronic pain can be difficult. If one were to just verbalize their feelings of chronic pain, it would no doubt sound like incessant complaining. Most friends and family would have a hard time dealing with such behavior. Instead, most people with chronic pain try to put on a happy face, and it works: Most people with chronic pain look perfectly normal. They are trying to fit in and live their lives, even though they may sometimes wish they were dead.

Pain treatments can improve quality of life for chronic pain sufferers, but getting the right amount of treatment is very difficult. Many patients do not want to constantly complain to their doctor in fear of being seen as lazy or just drug-seeking. Prescription drug abusers have created a stigma to seeking pain treatment. Personal pride and reluctance to using drugs are also barriers to treatment.

Because of these things, suffering with chronic pain is very frustrating. You're dammed if you talk about it, you're dammed if you don't. Verbalization of chronic pain just doesn't work.

Expressing Pain Through Art

A friend sent me a link to the Pain Exhibit, which seeks a non-verbal way to express chronic pain:

The PAIN Exhibit is an educational, visual arts exhibit from artists with chronic pain with their art expressing some facet of the pain experience. The mission of the PAIN Exhibit is to educate healthcare providers and the public about chronic pain through art; and to give voice to the many who suffer in abject silence.

Very cool.

How to Add CSF Fundraising Button to your site/blog.

One easy way to help raise funds for Chiari and Syringomyelia research is to place this fund raising button on your website or blog.

All you have to do is post this HTML text in your site where you'd like the button to appear:

<a href="http://www.csfinfo.org/donation.php">
<img src="http://www.csfinfo.org/images/csf-button.gif"/></a>

If you have a blog here on blogger.com, follow these directions:

1. Log in and click on the Layout tab of your blog's dashboard.
2. Click Add a Page Element where you want to add the button.
3. Choose the HTML/Javascript option.
4. Copy and paste the above HTML into the content field and save it.

Any questions?

Another paper on Adult Tethered Cord Syndrome: Yamada et al. 2004

This paper, "Symptomatic protocols for adult tethered cord syndrome", discusses symptoms unique to a diagnosis of tethered cord syndrome (TCS). For example, some positive symptoms are the inability to lie on your back for long, or how bending slightly over the sink to shave or brush your teeth causes symptoms.

Authors: Shokei Yamada1; Javed Siddiqi2; Daniel J. Won2; Daniel K. Kido3; Anthony Hadden1; John Spitalieri2; Bruce A. Everett4; Chinyere G. Obasi4; Todd M. Goldenberg4; Lynton G.F. Giles5; Shoko M. Yamada6

Source: Neurological Research, Volume 26, Number 7, October 2004 , pp. 741-744(4)

Abstract:
Diagnosis of tethered cord syndrome (TCS) is complicated because anatomical information is not adequate for this task. For example, recent studies have shown that the combination of an elongated cord and a thick filum terminale, demonstrated by MRI or at operation, is no longer an essential feature for the diagnosis of TCS. For TCS diagnosis, emphasis should rather be on its characteristic symptomatology and accentuated by postural changes, since TCS is a functional disorder of the lumbosacral spinal cord. In this report, the authors present the list of signs and symptoms pertinent to TCS in adult and late teenage patients to serve as a diagnostic means.

Here is a link to my copy of the paper: PDF.

How chronic pain harms brain function

I ran into another interesting article on chronic pain today. Some researchers at Northwestern University used functional MRI scanning to show that brains of those with chronic back pain are stuck in a sort of full-throttle mode of operation, even for simple tasks.
Here's the wire story:

By Julie Steenhuysen Tue Feb 5, 5:50 PM ET

CHICAGO (Reuters) - Brain scans of people in chronic pain show a state of constant activity in areas that should be at rest, U.S. researchers said on Tuesday, a finding that could help explain why pain patients have higher rates of depression, anxiety and other disorders.

They said chronic pain seems to alter the way people process information that is unrelated to pain.

"It seems that enduring pain for a long time affects brain function in response to even minimally demanding attention tasks completely unrelated to pain," the researchers wrote in the Journal of Neuroscience.

Continue reading on Yahoo News or, if you want to read the actual research paper, there is a PDF here:

Beyond Feeling: Chronic Pain Hurts the Brain, Disrupting
the Default-Mode Network Dynamics
Marwan N. Baliki,1 Paul Y. Geha,1 A. Vania Apkarian,1,2,3,4 and Dante R. Chialvo1

Scientists find key drug to treat chronic pain

I read a story today about how scientists are seeing promise treating chronic pain with a new type of drug. This drug is called L-838,417, and it is a subtype selective GABA_a antagonist.

In english, this means it works on our type of spinal chronic pain like Valium, but with fewer side effects. It also remains effective longer, whereas our bodies quickly build a tolerance to drugs like Valium.

This story was especially interesting to me because I recently found that Valium works great for my chronic pain. I was treated with this drug after my surgery and it not only relaxed my muscles (which can be really tight after back surgery!)--but it helped my pain quite a bit. This was realized as some of my pain returned after coming off of the drug.

Read the full story here.

How did my detethering surgery go?

The surgery went well. The wound healed up really nicely and I haven't had any complications (e.g. CSF leak).



Surgical wound from my detethering (lysis of filum) surgery. Most people's wounds will be larger; my neurosurgeon specializes in doing this operation with a very small incision. Photo taken in December about one week post-op.

The harder question is how did the surgery help my symptoms, and will it halt the progression of syringomyelia.

The short answer is that it is too early to say. Week three of my recovery, I was feeling wonderful. I had such a reduction in pain that I was giddy. I was able to tolerate sitting in a recliner, which I couldn't before surgery (it would make my arms or legs go numb and cause pain). Kicking back in the chair felt really good (I usually stand up all day in front of a computer). Unfortunately, after sitting for an hour or two one day, I started getting leg symptoms again. Since then, I've gone back to feeling more like I did before surgery. My leg pain comes back occasionally (woke me up last night at 3am). My feet and calves feel numb much of the day. My thoracic spine and neck are a little tight. I have nerve pain in my arms sometimes.

It is expected that one's symptoms will ebb and flow after surgery. It just takes some time.

Mentally, it is really tough to be teased with the prospect of less pain and weakness, only to have it return again. I'm just trying to be positive and patient. Time will tell.

In the meanwhile I've been taking it easy and making a point to walk 2-3 miles a day. Walking felt really good last week, but this week it hurts some. So it goes.

Intraoperative photo of filum lysis (filum terminale detethering surgery)

I had my filum lysis (detethering) surgery on December 12th. Here is a picture from the surgery, along with my explanation.

Intraoperative picture of tight filum terminale before cutting. The filum is the tissue which connects the bottom of the spinal cord to the sacrum (tail bone). This one was abnormally tight. The small metal hooks are holding the spinal sac (dura) open. The metal hook is pulling on the filum terminale, which is about to be cut. This opening is in the lumbar spine.



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