Research Tackles Scar Tissue Formation in Spinal Cord Injuries

Today on Slashdot there is a story about some research that has found a way to mitigate spinal cord scar tissue formation if not actually remove it after it has formed. The approach is to use a stabilized enzyme that helps remove the scar tissue. The Reuters story also mentions that this is but one small piece of the complicated puzzle which is trying to repair spinal cord injury. Many other advances have to happen for repair to be viable, but this discovery is a step in the right direction.

Great article on cord tethering...

The term "tethered cord" is overloaded with two meanings. This is article about spinal cords which have scar tissue (or adhesive arachnoiditis) attaching them to the dura at any level, not about the controversial "occult tight filum terminale" tethered cord.

This article, Untethering the Invisible Knot, follows a group of patients with varying degrees of partial paralysis as they try cord detethering sugery to try to preserve or restore neurologic function.

What I like about this article is the stories of strong people who are living with spinal cord injuries (SCI). I also like the realistic reports of surgical outcomes. I feel like most neurosurgeons have a excessively optimistic view of their outcomes, which is reflected in the very positive statistics they report. When you talk to patients, you get a different view of surgical outcomes.

I believe any intradural spine surgery is very risky, and that the scarring and inflammation caused by the surgery often negate any initially positive results.

If I may get on the soapbox for a moment, I'd like to urge neurosurgeons to be more scientific about their outcomes. Having a neutral third party doing pre- and post-surgical assessments would yield a more accurate picture of true patient outcomes. I know this is easier said than done but I've found the current set of outcome data presented by neurosurgeons to be, at times, significantly optimistic.

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.



Click To Enlarge

Explain Syringomyelia to Friends: Part 3: Why This Surgery?

This is the third blog entry where I explain why I'm having spinal detethering surgery to family and friends.

Syringomyelia can be caused by multiple different things. In my case, we believe it is being caused abnormal tension on my cord. Here is my understanding of why we are treating syringomyelia--which effects much of my spinal cord--by simply snipping the filum at the bottom (pasted from recent email):

Children born with obvious spina bifida are well known in
medicine, and treated young. However, tethered cord is not
a black-or-white condition. Children with borderline
("occult") spina bifida (a.k.a. occult tethered cord) are
sometimes treated by experts like Dr. W. Adults who
have grown up with spina bifida occulta (me) may not have
serious symptoms until mid age--when more cord damage has
accumulated. Most of these adults are diagnosed with
chronic pain syndromes like fibromyalgia or if they have
syringomyelia (SM) on an MRI, "idiopathic" SM. Most slowly
deteriorate without help, because adult-onset tethered cord
is not widely understood. This is changing (see research links
on lower right of my blog).

Dr. X takes advantage of the gap between vertebra to
minimize bone removal in the lumbar spine; he/she doesn't do a
full laminectomy. She only needs about an 8mm cut of the
dura (spinal sac). She says the procedure takes her about
half an hour. She has done thousands of the procedures
with very few complications. She considers my case
straight-forward, and expects I would have relief of some pain and
numbness. She reports that %90+ of patients like me have
neurologic improvement after detethering. I told her I'm
not getting my hopes up, but I'd be happy just to stabilize
my condition.

As I said in that email, my main hope is just to stabilze my condition, so I don't keep getting worse. There is a little permanent damage to my spinal cord, so I probably won't be back to the old crazy-endurance-sports me. About six months to a year after surgery, I should have a good idea of how it worked.

Explain Syringomyelia to Friends: Part Two, My History

This is the second blog entry where I explain to my family and friends the history of my spinal cord problems (syringomyelia) and why I'm having surgery.

Read Part One: The Surgery here.

I don't like to complain, but it is time I explained this to my friends and family.

For the last 3-4 years, I've been having increasing difficulty. What started out as a sore foot and then back pain ended up also including numbness, weakness, and for the last couple of years, constant pain.

I've had a lot of symptoms all over, so finding a diagnosis was difficult. MRIs in 2005 of my cervical (neck) spinal cord revealed a syrinx; a fluid-filled cavity in the center of my cord.

Cervical MRIs showing syrinx in spinal cord.

This condition is called syringomyelia (SM), and it was later found in lower parts of my spinal cord as well.

Now that I knew I had syringomyelia (SM), I had to find out why. SM is always caused by something else; it is the effect of something causing damage to your spinal cord. I didn't have the most common cause of SM (chiari malformation). I was told multiple times that it
was uncurable, so in 2006 I concentrated on working and living my life. My prognosis was a slow neurologic decline and chronic, sometimes severe, pain.

People often say, "don't take your health for granted", and I learned why. I was thankful that I didn't have something more deadly, but it was really hard to adjust. Going from running 30 miles a week, mountain biking, snowboarding, hiking, etc., to struggling to walk at times, was tough mentally. With a positive attitute and a lot of support, I dealt with it.

In the mean time, I was active volunteering and keeping up with the latest research. I met many of the top neurosurgeons in the country for this condition. The fact was, adult neurosurgeons didn't understand how to treat my type of SM.

This year (2007), I think I found an answer. In October, we flew to New York to see some experts, and they thought they might know what is causing the damage to my cord. It is a long an complicated story, but multiple neurosurgeons (3) now believe that my spinal cord is tethered
at the bottom. Being strung too tight has damaged my spinal cord over the years, and it is starting to show.

Read Part Three: Theory of Treatment.

Explain Syringomyelia to Friends: Part One, My Surgery

This is the first blog entry where I explain to family and friends what is wrong with my spine and why I'm getting surgery.

The Surgery
I am having the bottom of my spinal cord detethered by having my filum terminale cut. This filum is a thin cord at the bottom end of our spinal cords which does not contain any nerve, but anchors the spinal cord to your "tailbone", the sacrum.

The surgery is minimal as far as neurosurgery goes. I will have an L4 laminotomy (removal of part of the bone at the back of a lower vertebra). Some muscles and stuff will be moved aside, and then the dura (the sack that holds your spinal cord and fluid) will be opened. The neurosurgeon will find the filum amongst a bunch of nerve roots, and then cut it. I will be closed up, and the procedure will be done in an hour or so.

The neurosurgeon doing the procedure is very good at doing it in a very small space. The risks are low, but are primarly due to the fact that the dura is opened, exposing cerebral spinal fluid (CSF), and exposing nerve roots. The most common complication is a post-op CSF leak, which I hope we will avoid.

Read Part Two: History of my Struggles

Posted more research on Tethered Cord Syndrome

I just posted two more links to recent papers on Tethered Cord Syndrome:

• [paper] Tethered Cord Syndrome: An Updated Review


• [paper] Section of the terminal filum for occult tethered cord syndrome: toward a scientific answer

These can always be found on the links section on the lower right of this blog.

Whether or not to Detether

Now that I have a diagnosis of "occult" tethered cord syndrome (TCS), and I'm a candidate for a detethering (SFT) surgery, I have to make the decision whether or not to detether.

This is a tough decision, and I am taking a three-pronged approach to solving it:

1. Clinical: Are my symptoms bad enough or progressing fast enough to justify moderate risk?
2. Research: What are the published success rates with SFT surgery as a therapy for my type of syringomyelia.
3. Networking: What do patients who've had the SFT surgery have to say about it?

I've solved the first problem; my symptoms and progression warrant moderate surgical risk (as much as I hate to say it). The second problem is tricky, as the idea of tethered cord syndrome (TCS) which becomes symptomatic in adulthood (possibly causing terminal syringomyelia) is a new idea. (See Related Links on this site for recent research). Still, I'm reading, talking to physicians, and learning about current research.

The third prong of my decision-making attack relies on talking with patients who have had the SFT surgery. This is where I need your help.

Tell Me About Your SFT Surgery

There are two ways you can share your surgical story with me. First, you can send me a private message by clicking on my profile, and using the Email link on the left. The other option is to share your thoughts with all my readers by leaving a comment at the bottom of this article. This has the benefit of helping others who may be trying to make this decision.

I've also added a couple of (unscientific) polls which you can vote on if you've had the SFT surgery.

Trip to the Chiari Institute: Part Two: I am a Candidate

Announcing my Candidacy

Continued from part one...

After talking with the neurologist and then the neurosurgeon, I was informed that I was a candidate for detethering surgery. I was handed a card with a number I could call to schedule the surgery.

Wow. After years of searching for a diagnosis, and then being told repeatedly that there was no treatment or cure, suddenly someone thinks they can help.

I had been training myself not to get my hopes up, so I'd be disappointed when I was, again, told I could not be helped. I was working hard on accepting a slow neurological decline and a life of constant pain. Now, suddenly I was given a chance at stabilizing my condition. With that chance comes the weight of a decision that I can't make easily; should I have surgery, before my spinal cord is damaged much more, or should I not take the risk and be thankful for the function that I have now.

Trip to the Chiari Institute: Part One: Miscommunication

Clarification: this article is being misquoted as saying that I went ahead with the surgery and was positive about it. One, I did not have surgery at TCI due to these obvious issues with them. Two I'm not positive about the outcome of this surgery in my case even though I had another excellent surgeon do it. That other surgeon has a much less invasive approach so if anything my results should have been better. However, the surgery did not live up to the hugely positive claims made by TCI. I was left in much the same condition as before.

Introduction: The Chiari Institute

As of today, 2007, there are only a hand full of neurologists and neurosurgeons in the United States who specialize in Syringomyelia (SM), Chiari Malformation, and related disorders. In Long Island, New York, there is a center, called The Chiari Institute, which specializes in treating these disorders. The Chiari Institute is so well known among Chiari and SM patients, that people just call it TCI, and you know what they are talking about.

The good thing about TCI is that they know these diseases, and they have a lot of practice with their specific surgical treatments. On the other hand, they are very busy and it takes a lot of patience to get an appointment.

Why I Went to TCI

I decided to go to The Chiari Institute because I had met and talked to two physicians who worked there, at the ASAP medical conferences over the last two years. In specific, I talked with Dr. B, who was a neurosurgeon that recognized my symptoms as a possible case of Occult Tethered Cord Sydrome (TCS).

I had been looking for the cause of my SM, and no experts so far were able to explain it (beyond conjecture that it is idiopatic, congenital, and uncurable). When Dr. B had me walk on my heels, and had my wife pull on my legs, the symptoms it elicited were a perfect match.

Thus, I decided to fly myself and my wife out to New York to meet with Dr. B.

Miscommunication: We've changed your Neurosurgeon

We arrived at TCI early on October 22, 2007. After sitting down with a nurse and giving a detailed symptom and treatment history, she told us that I will not be seeing Dr. Bolognese, because he is out of town for a conference.

What?

This was after I explicitly said that I was coming exactly to see this physician, and that I was to know ahead of time if this was going to be a problem. I even had confirmation via email that I was going to see Dr. B. I had just spent thousands of dollars to come to TCI and get fresh MRIs, so we were not happy about this.

Part Two: Treating Neuropathic Pain Without Cognitive Deficit

As promised, I will review some of the medications I have tried for treating my neuropathic (nerve) pain associated with syringomyelia. Although it varies a lot from person to person, the type of pain I experience may be similiar to that which people with Chiari Malformation, Tethered Cord Syndrome, post-herpetic or diabetic neuralgia might experience.

I'll stress again that each person responds differently to medication, and that diet and exercise are the first line of defense in managing such an illness.

Here are the medications I've tried, in chronological order, along with a final grade (A-F) as to how helpful they were overall.

Paxil: F
When I originally started having neurological symptoms such as numbness and weakness, my primary care physician (PCP) stated that I must just be depressed, and wanted me to try taking Paxil.
Pain Relief: Paxil did not help my pain levels, although I took it for about a year.
Motivation: Paxil made me sleepy, ambivalent about life, and very unmotivated.
Cognition: If anything, my concentration was worse with Paxil.
Other Thoughts: Paxil did not help with my pain and other neuro. symptoms. It did make me occasionally manic, which was a bit fun I suppose. It lessened my libido, IIRC.

Vicodin: C
Narcotics are not very helpful with neuropathic pain. They do help you sleep, and can be useful occasionally to take a break from overwhelming discomfort. Vicodin midly worsened my concentration, and made me feel a little depressed if I took it for more than a day or two.

Neurontin (Gabapentin): B
Pain Relief: Neurontin was very helpful when I first started taking it. I could concentrate much better at work because it reduced my pain significantly. Your body seems to get used to it, however, even if you increase the dose. It feels like it still helps, but not as much as when I first started it.
Motivation: Not much of an effect, slightly sleepier.
Cognition: Tolerable, but seems to hurt short term memory a bit.
Other Thoughts: Very addictive in that withdrawls are painful. It is an anti-seisure drug, and if you quit taking a large amount quickly, you can actually induce seisures, or so I've heard. When I forget to take a dose before bed, I have crazy nightmares and sweats.

SNRIs: Effexor and Cymbalta: C-
I tried both Effexor and Cymbalta, which are similar anti-depressant drugs also used for treating neuropathic pain. One theory is that chronic pain causes depletion of certain neurotransmitters, and these reuptake inhibitors help restore the balance, making you feel better.
Pain Relief: Cymbalta was great for my pain, but I was an idiot, when I wasn't vomiting.
Motivation: These drugs made it a struggle to get out of bed and stay focused-- similiar to how I felt on Paxil, but with some pain relief at least.
Cognition: Wee! Happy times! I'm stupid! For me, these drugs made it hard to concentrate on work.
Other Thoughts: Effexor made me vomit when I started or increased a dose. I discontinued it in one week. When I tried Cymbalta, I added an anti-nausea drug, which at least let me avoid vomiting. I hung in there for a good month, and had pain relief. Even after the nausea faded, I still couldn't concentrate on work, so I quit taking it. If I didn't have a job, I'd try it again.

TCA #1: Nortriptyline: D
Nortriptyline is an old, second-generation Tricyclic Antidepressant that has found some off-label use for chronic pain and neuralgia.
Pain Relief: I didn't notice much pain reduction from Nortriptyline, which might have changed if I took it longer or at a higher dose.
Motivation: This one made me sleepy and less motivated.
Cognition: I felt foggy and less alert on Nortriptyline.
Other Thoughts: You need to take these drugs for some time (say, a month) before noticing their full impact. After trying this one for two weeks, we knew that the sleepiness would be untolerable, even if I did attain pain relief. I decided to try Desipramine instead.

TCA #2: Desipramine: B- ?
Desipramine works better for me than Nortriptyline. After working up to a 50mg dose over five weeks, I seem to be noticing a reduction in pain complaints. The side effects are tolerable: dry mouth, constipation, trouble sleeping (for a couple days any time I increase the dose), slight fogginess. Desipramine seems to have the energizing feeling I felt with the SNRIs (Cymbalta, etc.) without the sleepiness and ambivalence I experience on SRIs (Paxil, also SNRIs, Nortriptyline).
Pain Relief: Seems to be a bit better at five weeks, 50mg.
Motivation: Seems unaffected.
Cognition: A bit foggy/air-headed, but tolerable.
Other Thoughts: Everybody reacts differently to these medicines. This one works OK for me so far.


More to come
I finish this article when I get time.

Treating Neuropathic Pain without Cognitive Deficit: A Trial and Error Evaluation of Drugs

Disclaimer: Drugs are not the only way to manage pain. Exercise, relaxation techniques, as well as behavioral and phychological links, should all be explored. For serious cases of pain such as spinal cord injury, however, medicine is an invaluable tool to improve quality of life.

Central Neuropathic Pain: The Problem
Treating neuropathic pain is a challenging problem. Reducing pain without creating an imbicile zombie is even more challenging. There are number of aspects that make treatment difficult:

• "Pain" is a complex and unique target: Spinal cord injury/disease, for instance causes more than just a classic "funny bone" shooting pain sensation. There can be increased muscle tone (spacticity), burning, vibrating, throbbing, or stabbing sensations, and so on. In a case like Chiari Malformation or Arachnoiditis, there can be transient, local, increased intracranial or subarachnoid pressure. That is, your head or neck can be throbbing, and neural tissues *are* being impacted.


• Everybody responds to drugs differently.
As an oversimplification, your biochemistry is as unique as your fingerprints. A drug which relieves pain for one person's may only make another sick.


• Different people have different requirements. Some people would be happy to trade some short-term memory or alertness for pain relief. Others may have careers with little room for such concessions.
  


• Many pain medications affect reasoning, memory, mood, motivation, and energy level.


• Pain is subjective. This is obvious, but the fact that it is our perception of pain, and not just its cause (pathogenesis) that we wish to treat, makes the process more complicated. (If don't feel a pinch, did it happen?)

Requirements For Finding Helpful Medicines
Because of the variability in treating each case of "pain", finding drugs which help is largely a trial-and-error process. Finding a medicine which helps improve perception of pain thus requires:

• Knowing which drugs to try.You can't try every drug known to man, you must narrow your search.


• Trying until something helps. A helpful medicine is one which causes relief from pain while having tolerable side-effects.
  

My Personal Requirements
My pain management goals are, most important first:

• Improve cognition.My pain, untreated, greatly diminishes my ability to be productive at my highly-cerebral job. Try completing a long division math problem while someone slowly stabs you and you'll know what I mean. Research has shown that chronic pain causes cognitive problems ([1], [2]). In fact, chronic pain actually causes your brain to shrink over time.


• Reduce my level of suffering, or perceived pain.

Basically, I want to reduce suffering without causing cognitive issues. This is a balancing act, as reduction of pain definately helps my concentration and reasoning, but many medicines make me tired, foggy, or affect my memory.

What Worked or Didn't Work for Me?
Stay tuned for my next post, where I'll present a history of which medicines I've tried, and how they worked for me. Some made me sleep all day. Others kept me awake all night. Some made me violently ill (barf-o-rama).

Read part two.