Spinal Cords Gone Wild

Neurontin Withdrawl.. Was it helping or not? (Part 1)

2011-01-05T12:09:00.000-08:00

In this post, I share ongoing experiences with ceasing to take gabapentin. Hopefully this information is helpful to others in my situation.

I had a two week vacation this year and decided, partially by accident, to stop taking gabapentin (Neurontin). I have been taking it for years for nerve pain and muscle spasm associated with syringomyelia. I knew coming off gabapentin would be disruptive to my life. It is an anti-seizure drug which can cause seizures if you discontinue it too quickly--even if you don't have epilepsy. At the dose I was taking this wasn't a big risk, but any time I've forgotten to take it I definitely get crabby and my muscles start tensing up.

Why Did I stop taking Neurontin

I'm not sure if it was helping anymore. When I first started taking it (300mg 3x/day), it helped considerably with muscle tightness and nerve pain. I could concentrate better because of the pain reduction. It is one of those drugs you get used to, though. After taking it for a few years, I wasn't sure if it was still helping, of if it just made me feel normal, and the withdrawals sucked.

I was concerned about side effects. I can always use better concentration and short term memory. I wanted to see if how my cognitive function fared without gabapentin. I also have other symptoms I wanted rule out as being caused by gabapentin. This is tricky as spinal cord disease pretty much causes symptoms all over (everything is connected to it). I wondered if things like irregular heartbeat, chest pain, rashes, mood swings, etc. were at all caused by the drug.

I am sick of the mood swings. Gabapentin really affects my mood. When it is time to take the next dose I'm often an asshole, despite my best efforts to be nice. Which is worse, the mood swings caused by taking gabapentin, or those caused by chronic and varying pain. We shall see.

How did I gently adjust to zero dosage?
I used lorazepam and occasional dexamethasone for a week or so. The hard part was after ceasing all of it.

How is it going so far?
It has been about three weeks without any gabapentin. Now that I'm taking nothing but vitamins and ibuprofen, I have to say it is pretty rough. Considering I usually feel like crap this is not a big adjustment, but some things are worse.
My mood is better at times, and worse at times. Yesterday I was not nice because I was miserable. Besides that I feel like my mood has been more stable. Less "4 pm asshole effect".
Muscle tightness is a bitch now. I thought it was bad before but my sholders and neck are so tight it is hard to turn my head.

What is next?
I'm going to try and hang tough for another month and a half, at which point I may try a lower dosage of gabapentin, or maybe some of the other related drugs such as Keppra (Levetiracetam). Meanwhile, I'll go for walks 3 times a day, and try to stretch and meditate. Leave a comment with any other good tips.

Research Tackles Scar Tissue Formation in Spinal Cord Injuries

2009-11-06T10:40:00.000-08:00

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...

2009-06-16T13:41:00.000-07:00

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

2008-12-10T14:55:00.000-08:00

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

2008-10-16T12:45:00.000-07:00

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

2008-06-18T11:27:00.000-07:00

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.

2008-04-14T12:44:00.001-07:00

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:

Log in and click on the Layout tab of your blog's dashboard.
Click Add a Page Element where you want to add the button.
Choose the HTML/Javascript option.
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

2008-02-19T17:13:00.000-08:00

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

2008-02-06T12:00:00.000-08:00

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

2008-01-16T14:36:00.000-08:00

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?

2008-01-09T10:57:00.000-08:00

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)

2008-01-08T10:43:00.001-08:00

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?

2007-12-04T00:15:00.000-08:00

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

2007-12-04T00:08:00.000-08:00

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

2007-12-03T23:38:00.000-08:00

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

2007-11-30T15:13:00.000-08:00

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

2007-11-13T10:09:00.000-08:00

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:

Clinical: Are my symptoms bad enough or progressing fast enough to justify moderate risk?
Research: What are the published success rates with SFT surgery as a therapy for my type of syringomyelia.
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

2007-10-30T16:40:00.001-07:00

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

2007-10-29T16:01:00.000-07:00

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

2007-10-25T15:59:00.000-07:00

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

2007-07-13T15:44:00.000-07:00

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.

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.

MRIs: That will be $3000 plus $10 if you want to see it.

2007-07-13T13:32:00.000-07:00

A quick rant about a pet-peeve of mine. Last year I spent thousands on MRIs. I never received a CD or a personal copy of the images. This year I plan on seeing a new neurosurgeon. All the neurosurgeons I've seen so far request that you "hand carry all films". This is because they don't want the hassle of handling your records when they'll probably only see you once.

When I just faxed in a request for a CD containing my latest MRI images, the records staff insisted on charging me $10 to get a "personal copy" of my images. It is not that I cannot afford the ten dollars. I just feel insulted that they provide records free of charge to other physicians, but must charge me even for the first copy I receive.

I told them to ask their neurosurgeons why they require their patients to hand-carry films. Then, I said, feel free to bill my insurance.

A Small Syrinx can cause Big Problems: Tell the doctors

2006-05-05T00:18:00.000-07:00

Someone on the asap.org message boards started a thread asking people with "small" syrinxes to report their symptoms. I decided to post my response here, along with extra late night rambling.
Many of us struggle with physicians who seem to believe that symptoms correlate strongly with syrinx size, even though there is no supporting research. I say the patient's own senses are a powerful diagnostic tool; listen to your patient.

I have 3-4mm syrinx at widest.. c4-c7 and t4-t12.. No chiari visible on brain mri. (diagnosis 8/2005).

I have gone from being very athletic and active to struggling to walk at times (poor proprioception, weakness in legs)

I have pain in the neck (from c7 up), and a lot of muscle spacticity/tightness long my spine and in my legs. I have headaches with pressure sensation in head and neck. Almost constant throbbing sensation in head and neck. A numb patch in throat comes and goes and I have trouble swallowing sometimes. For a while, I had some annoying frequent urination and leaking sensations. I often have weak/shaky legs, numbness in feet, heels, hands, elbows (comes and goes).

It is *hard* to find a doctor who believes that the syrinx (or its cause) is the root of my symptoms, even though the cervical location is consistent with the numbness in my hands and arms, my first warning symptom. Although I was in tears in pain multiple times last week, my neurologist will only prescribe neurontin and a little flexeril if I beg.. She doesn't seem to believe that my syrinx(s) causes the symptoms I'm reporting. She told me I should see a PCP if I have "tight muscles" because she's a "nerve doctor". This spacticity is messing up my body. I exercise and stretch an hour a day.

No neurologists or PCPs specialize in SM, so finding a doctor who will treat appropriately is trial and error. I don't want to be popping pills, but I don't want to feel like dying either. Surgical treatment of SM without ACM is just starting to show some minimal promise. We need to improve this situation...

Web button for fundraising

2006-04-19T21:55:00.000-07:00

You may have noticed the button I just added to this site.

I invite any fellow bloggers or website authors to steal it and use it to help raise funds for ASAP. You can steal the image and link, or just paste this HTML into your blog (which hosts the image of my unreliable home server):

<a href="http://asap.org/donation.html"><img src="http://smnw.selfip.org/asap-button.png"></a>

Highlights from my Spine MRIs

2006-03-29T22:42:00.000-08:00

Click on images to enlarge.

First up, we have a lovely (axial T2-weighted) cervical spine MRI image showing my cervical syrinx. The donut looking thing in the middle is my spinal cord. The hole in the middle is the syrinx. The syrinx is a gap filled with cerebral-spinal fluid (CSF) which has been forced into my spinal cord by some sinister and yet unidentified force. These first couple of images are axial slices. That means they're 2-d slices made in the plane parallel to the floor if we were standing up. To simplify, it's the same cross section you'd see if you chopped someone's head clean off at the neck.

Next on our lovely slide show we have another axial slice, this time lower in the thoracic spine. Again you can see a white dot in the center of my spinal cord. This is my long-skinny thoracic (middle back) syrinx which runs about from T4 through T12.

Now on to the sagittal images. These slices are taken in the sagittal plane, which is what you'd see if you sliced someone clean in half from head to toe. This is a (T2) MRI of my cspine again. This time you can see the dark spinal cord coming down from the brain (to the right of the vertebrae and discs). You'll notice the white bubble in the center of it around C4-C6. That's the same syrinx that looks like a donut in the first picture. This talk of donuts is making me hungry.

Next we have a sagittal (T2) mri of my thoracic spine. Look for the thin white line in the dark spinal cord. When I first heard I had another syrinx from T4-T12, I was upset; that sounds really long. I felt a little bit better when I saw that it's fairly thin. It does get a little bit wider as it settles around T12, but it's hard to find in the MRI images.

This is a sagittal image (T2) from my thoracic and lumbar spine (lower back). Of note are the white line in the spinal cord at the top, and the seen-better-days L5-S1 disc at the bottom. It's turning black and it should be white; it's degenerative and bulging. Many people with SM experience multiple DDD (degenerative disc disease) and disc herniations. My guess is that it is from muscle spacticity. My paraspinal muscles and neck muscles just don't relax. They are way to tight.

Finally, here is a link to a movie which shows a sequence of axial cervical spine (neck) images. It moves from my upper back towards my head, one image per second.

t2-ax-cspine.avi

(Right-click on the link, choose "Save As", and save it to your Desktop. Then, open it from there.)

Enjoy. This stuff is putting me to sleep and giving me a headache. Good night. Zzzzzzz....

Starting a Support Group. Who, Me?

2006-03-26T19:23:00.000-08:00

Today I explain why I'm starting a support group, something I've never considered before.

Dealing with Syringomyelia over the last couple of years has had its difficult moments. I've gone from being an accomplished hiker and mountain biker to struggling to walk at times. I used to take my health and ability to concentrate for granted. Now I'm thankful whenever I can move or concentrate on something without the distraction of pain.

I do not suffer without support. I am so fortunate to have married the girl of my dreams last year, expanding my family with more people who care about me. I am so thankful for all my friends and family; they are a wonderful support system for me.

Why, then, is it difficult to talk to them about my condition? Why would I ever need more support than what I have now?

For one thing, it is hard to explain the cereberal spinal fluid dynamics of hydromyelia to someone when they just want to know why you're not going hiking like you usually would. A simplified explanation often falls short. "Just take some ibuprofen if your neck hurts," or "come on, tough it out," are likely to be responses. My friends and family care about me, but I need to explain the predicament I'm in so they can understand. If I say "I have a disease and it's bad so I can't do stuff," that only piques curiosity.

To be honest, I do not mind explaining my condition to people. In fact, I need to vent about it on a regular basis. I start to feel a little alienated, however, when I explain what is wrong with me. Suddenly they understand, and that makes me different. It is hard to explain what I mean.

I also think about the people I talk to about this. My wonderful wife takes the brunt of my complaints and worries with stride, but it is hard on her. She feels bad because she cannot solve my problems. She cares about me deeply and when I talk of pain, she feels it too. When she is sad, it makes me sad. You can see how this could become a cycle of negative moods.

To break this cycle, to help those I love, and to help myself, I've decided to start a support group. I will volunteer my time to help people in my area with syringomyelia and chiari malformation meet and talk. Those who suffer need extraordinary support, and I believe they can help keep balance in their own social lives by getting together.

I threw up a web site for the new Syringomyelia and Chiari Northwest Support Group today, let me know what you think.

A Neurosurgeon Who Knows What a Cine MRI Is

2006-03-23T20:53:00.000-08:00

On Monday I saw a new neurosurgeon, Dr. V, at Harborview/UW Spine. Dr. V is a younger physician who studied with Dr. E, a top expert in Chiari malformations and hydromyelia (a.k.a. syringomyelia). It was refreshing to talk with a neurosurgeon who was informed on the latest research in my condition.

The first neurosurgeon I saw back in July of 2005, however, was not as familiar with it. Dr. S, at Swedish Hospital, basically said that my SM could be worse, but it was not curable. He said this without looking at my brain MRI (which Dr. Y's office did not forward to him). He suggested I get a full spine MRI in six months or so, and we called it a day.

Not curable, huh? If I wasn't such a self-preserving geek I may have taken that as the gospel and moved on.

Recent wisdom on syringomyelia (SM), however, indicates that a syrinx does not usually occur on its own; there typically is another condition which forces the cerebrospinal fluid (CSF) into the spinal cord. Furthermore, if you remove the primary condition, the syrinx may resolve or shrink. About 90% of the cases of SM are secondary to an Chiari malformation (CM), where the lower brain plugs the base of the skull like a cork, forcing CSF into the spinal cord.

Consistant with my luck, I have the rarer form of SM. My MRIs do not show a Chiari malformation. There does not appear to be a lack of space at the cervico-medullary junction. I do, however, have some of the symptoms of CM. CM can affect things innervated not by the spinal cord, but by one of the crainial nerves. This is due to the pressure and compression parts of the brain are subjected to with CM. Since my syrinx only goes as high as C5, it should not be causing some of my symptoms, such as nystagmus (twitching eyeball), or the numb patch in the back of my throat, or the difficulty swallowing, each of which come and go. These symptoms are exascerbated by bending over (increasing intracranial pressure). I also get "pressure" headaches in the base of my skull, temples, and so on.

I had a couple of decent head injuries (head hits metal post and head hits concrete, don't try at home). These can cause a small bleed in the brain, which is known to cause scarring and arachnoiditis. Basically, my body would respond to the trauma by growing new membranes or scar tissue which attach to the brain. This tissue can block CSF flow.

Knowing all this, and reading some of the latest research on CM and SM, I began to think I needed to have a CSF flow study to see if we can find any CSF flow obstructions. Cine MRI, a technology developed to visualize blood flow through the heart, is being applied to diagnose syringomyelia.

When I mentioned Cine MRI to my first neurosurgeon, Mr. S, he indicated that he'd heard about it, but remained pessimistic. From the little I know, performing and interpreting the results of a Cine MRI makes reading a regular MRI seem easy (which it is not). I imagine Mr. S just didn't have personal experience with Cine MRIs.

As I worked through the admissions and referral process to get into UW/Harborview Spine, I hoped that they had a neurosurgeon who knew how to use Cine MRI to analyze CSF flow. When Dr. V suggested I do a flow study, without me even mentioning it, I was very happy.

Neurontin (gabapentin) for Pain and Spacticity

2006-03-10T20:16:00.000-08:00

One of the first things we did when I started seeing my new neurologist (Dr. D) was to reevaluate any medications I was taking and see if we could improve the management of my pain and muscle tightness (spacticity). At the time, I was taking minimum-dose Paxil (10mg/day), and Vicodin. I was taking the Paxil because I still had some left from my old primary care physician (PCP) Dr. M, who thought my strange neurological symptoms may be due to depression. The Paxil never did help my pain and neurological symptoms. It may have helped me sleep and kept me happier as I dealt with chronic pain, but it never served its intended purpose. We decided I should quit taking it. Second, we looked at my use of Vicodin to manage pain. I complained about the side effects of Vicodin. I was taking it daily for pain, but would wait until I got home from work if at all possible. I would take the lowest dosage possible, but I still experienced grogginess, an exascerbation of my weakness symptoms, and feelings of depression. Being a narcotic, Vicodin tended to make me feel like crap mood-wise if I took it for very long. It really was not the right drug for the job.

Dr. D prescribed Neurontin for me, and I initially took 300mg once and then twice a day. At first I felt euphoric and woozy, but those side-effects wore off within 3-4 days. As I got used to Neurontin, I found that it was much better at managing my pain, and caused fewer side effects compared to Vicodin. I quit taking Vicodin regularly; my pain level was usually tolerable.

While I was taking Neurontin (300mg) only twice a day, I noticed my pain would usually come back in the two to three hours before my next dose. I started taking Vicodin again occasionally after work. I also was still having problems with spacticity. Even though I spent over an hour a day stretching, and had a stand-up desk at work, the back and joint pain from my ever-tightening muscles was a serious problem.

At my next follow-up appointment with Dr. D a month later, I told her how I was doing. We decided that I should start taking the Neurontin three times a day for pain. I mentioned I was having a hard time with spacticity still, and she prescribed a short-term muscle relaxant for me to try out (forget the name now, will fill in later).

Over the next week I started taking the muscle relaxant before bed and increased my neurontin dosage to 300mg three times a day. Although I'd be a little light-headed at work in the morning at first, I had the best week I've had for a long time. I almost felt normal for most of the day. It was wonderful. I sent Dr. D a memo thanking her for listening to me and making a big difference in my symptoms. As my body became used to the increased dose of neurontin, and as I quit taking the muscle relaxant, some of the relief I had faded. I continue to do well, however. I am more productive at work, and happier at home.

Success: A new doctor, a new city.

2006-02-02T23:51:00.000-08:00

After wading through the admission beaucracy for OHSU, I finally got scheduled for an appt with Dr. D.. After finally getting Dr. Y in Seattle to send a referral, I was quickly admitted to see my new Neurologist. Upon visiting OHSU for the first time today, I was amazed to see how big the Portland campus is. I'm glad to say that my first appointment with Dr. D. went very well. She listened to me, and was professional and yet personable. We both have a similarly silly sense of humor and the appointment was actually somewhat fun. I think I passed the basic neuro. exam as usual, and she scheduled me for complete spine MRIs, which I completed this evening. I had the joy of laying as still as possible for over two hours in a noisy tube (don't swallow, and don't scratch your face even though it itches like mad). I returned to the Hostel we're staying at in Portland around 10pm. My (newly married and getting used to the word) wife was already in bed. I didn't feel like laying down at all after that MRI marathon, so I went out for a pint of tasty beer at the local McMenamins pub, and now I'm heading to bed. With a job interview starting around 8:00 am, and a medical fun fest the rest of the day, it was a long but good day.

Calling Dr. Y's Boss: Give me a referral please.

2006-01-25T14:41:00.000-08:00

I was stuck in a tough spot. My old neurologist, Dr. Y in Seattle, had refused to give me a referral to OHSU Neurology. OHSU Neurology had refused my PCP's referral after a bunch of time and effort. What to do?

I decided to call the P.clinic where Dr. Y practices and explain my problem to a manager or someone who would listen. After reaching a curt (rude) dead end with Dr. Y's office the last couple times I tried to call, I really didn't want to call them again.

Luckily, I got ahold of a friendly, professional care manager, Ms. BW, at the P.clinic. She listened to my story and went and talked to Dr. Y's office. She got them to do the referral and called me back within the half hour. Yay, I get to go through the OSHU referral hoops again. I suppose putting Dr. Y's office through that process is punishment enough for being rude to a patient. Ha ha.

I wonder if Dr. Y read my letter yet. In a way I feel a tiny bit bad for being such a squeaky wheel. I hate to complain in general. When it comes to getting healthcare, unfortunately, you sometimes have to escalate issues and file complaints. The stakes are too high to just give up.

OHSU Neurology: Clinic Manager Calls Me Back

2006-01-25T13:13:00.000-08:00

I just got a call back from Jean an OSHU Neurology. I explained the difficulties I had with his office, as described in my previous post. He was apologetic but ultimately unhelpful. To summarize our conversation:

OSHU Neurology does not take referrals from Primary Care Physicians, only from other Neurologists.
He refused to give his manager's name and number, which I requested should I need to esclate the issue further.
He apologised that his staff failed to tell me that I needed a referral from my Neurologist.
I agreed that it was useful for a new neurologist to have the notes from an old doctor, so they don't have to start over. I mentioned, however, that all there was to know was my diagnosis and history of symptoms, which were provided. I only saw my old neuro Dr. Y once after diagnosis, and Dr. Y refused to do any more referrals.

So I have a new neurologist who won't take patients without the old neurologist's referral, and an old neurologist who refused to do a referral. How is that for focusing on the patient?
What would you do next?

OHSU Neurology: Beaucracy ad adsurdum

2006-01-25T11:38:00.000-08:00

My current health care plan is this:

Get a neurologist in Portland (where I'm moving to) and get a full MRI work-up.

See a specialist neurosurgeon in Seattle.

The neurosurgeons are on board and ready to see me. They'd prefer that I get a full set of new MRI's done first, but they are willing to order the films if they have to. I'll need a good local neurosurgeon to help me manage my SM in Portland anyways, so I decided to find a neurologist before seeing the neurosurgeons.
This should be a straightforward task. I have a solid diagnosis of a serious neurological condition, so there's no doubt I need a neurologist.
I decided to go to OHSU's neurology clinic since they are probably the biggest center in Portland. Unfortunately, getting in to see a neurologist at OHSU is near impossible. They have the most absurd and useless admissions process I've ever seen. Here is what has happened so far:

I called the main OHSU neurology line and said I needed a new neurologist in Portland for my diagnosis of Syringomyelia. They told me to have my doctor call this number (503-494-7967, see ohsu.com) for referral instructions.
January 18, 2006: I called Dr. Y's office in Seattle and requested a referral to OHSU neurology, giving them the voice number to call for instructions. Dr. Y's office latter called me back and said they will not do the referral (after already doing two to UW and OHSU neuroSurgery) in an rude tone.
January 19, 2006: I called my PCP Dr. M and requested a referral to OHSU neurology.
January 23, 2006: I'd heard nothing from OHSU Neurology or Dr. M, so I called Dr. M's office to see how the referral was going. His staff was on top of it, but they were getting zero response from OSHU Neurology despite leaving two messages and waiting two days.
January 23, 2006: I called the main OHSU Neurology line and explained that I was having difficulty with their referral process. I also had called the number they gave me for referral and was told to leave a message. I asked for the name and number of the Supervisor. The staffer said that I should avoid calling the supervisor and creating a "messy situation", and that she would instead tell the woman in charge of the (503-494-7967 part of the clinic) referrals to call my doctor back. I kept my tone professional, politely asking again for the name and number of the supervisor, just in case I should need it. (Jean Ellis 503-494-2286) I then hung up and waited.
January 24, 2006: I called my PCP Dr. M. They finally got a response from OHSU Neurology. They said that OHSU requires the referral to be mailed, not faxed, and that they would fax a reply and mail the referral immediately.
January 25, 2006: Roxy from Dr. M's office called. They received a fax (no phone call) that said that I need to follow up with my Neurologist in Eugene (none such person exists) first. WTF!?
January 25, 2006, ~11:20 am: I called the OHSU Neurology "supervisor" Jean Ellis at 503-494-2286 and got his voice mail. I left my name and number and asked him to please call me back ASAP, preferrably today.

Ahh, another fun day dealing with healthcare beaucracy. Isn't it amazing!? It's even more fun when you're in pain. Yay.

Fed up with Doctor Y's Office: The Letter

2006-01-23T22:23:00.000-08:00

Before leaving Seattle to get married and go on a long sabbatical/vacation, I saw my (former) neurologist Dr. Y. We discussed my recent diagnosis of Syringomyelia, and I told him I'll need help managing it while travelling. He seemed to agree, but when I called him from abroad and from NYC his office was less than helpful. I felt fed up and let down and I was in pain. After returning to the west coast, I wrote this letter to Dr. Y which I will send tomorrow.

Censored version with names removed
From Patient: A
To: Dr. B Y Fax: xxx.680.2246

January 23, 2006

Dr. Y,

You may recall my vacation plans from our last appointment: I married in August in Oregon and then my wife and I have been traveling (US and EU). We are currently travelling across the US and plan on settling in Portland. Travel has been difficult at times with a chronic, painful condition, but I'm thankful to be able to do so.

I called your office on December 7, 2005 from NY to give you an update on my condition (it'd been almost 3 months) and ask for a massage prescription. I was very disappointed with the lack of care I received from your office. I had told you I would be traveling and may need to call from the road. I realize that there are limitations to what you are able to do without your patient present. I entrusted you to be the primary physician to help me deal with my difficult neuro. condition. I discovered that, because I happened to be away from Seattle, I had nobody to turn to for help with my painful condition. All I was told was that “if its that bad, go to the ER”. I do not feel this is appropriate; I have a chronic condition, not an emergency, and the ER is quite expensive. Massage is effective treatment for spasticity, and there is no contraindication here. This was unacceptable. My doctor friends told me to find a new neurologist and I agreed.

What I expect from my neurologist is a strong ally in dealing with Syringo Myelia (SM). I am grateful that you were able to help me diagnose SM, and appreciate your past efforts to listen to me.

On January 18, 2006, I called and requested a referral to the OHSU neurology clinic in Portland, where I plan on living. You refused to give a referral even though you diagnosed the condition. Wonderful. Thanks for the help.

I will try to send a book titled “Contents Under Pressure” in the hopes that it will educate you and your staff about just how difficult it is for the patient to find quality care with a rare neurological disorder such as SM. Very few doctors (only neurosurgeons, really) understand the condition, you have to get a referral to see a specialist, and the health establishment presents numerous obstacles to the patient who is in a lot of pain and slowly loosing motor control. I'm only 30 years old. Just try to imagine it.

I felt that you should receive this feedback first.

Sincerely,

name
cell
email

I ordered two more copies of Contents Under Pressure, one of which I will send to his office and urge them to read. The book portrays some of the frustrations people face dealing with the health care beaucracy when they have a rare, difficult to diagnose disease such as SM. The author actually does not have a syrinx, but he has a related condition called Chiari Malformation.

Introduction

2006-01-23T16:26:00.000-08:00

In 2005, I was diagnosed with a rare spinal cord disease called Syringo Myelia (SM). From the ASAP website:

What is syringomyelia?
(sear-IN-go-my-EEL-ya)
Syringomyelia, often referred to as SM, is a chronic disorder involving the spinal cord. For reasons that are only now being understood, cerebrospinal fluid enters the spinal cord, forming a cavity known as a syrinx. (Doctors sometimes use other words such as cyst, hydromyelia or syringohydromyelia) This syrinx often expands and elongates over time, destroying the center of the spinal cord. As the nerve fibers inside the spinal cord are damaged, a wide variety of symptoms can occur, depending upon the size and location of the syrinx.

Syringo Myelia (SM) has presented a number of challenges already:

Getting a diagnosis is very difficult. My Primary Care Physician (PCM), Dr. M, basically told me there was nothing wrong with me and treated me for depression. The symptoms vary quite a bit, and the condition is rare, so few know about it.
Finding a specialist. Neurosurgeons are the experts when it comes to SM. Finding one who knows the latest research on the condition is not easy. A neurosurgeon is needed to evaluate the condition and see if it can be fixed, and a neurologist is needed for management of the symptoms.
Seeing a good specialist (neurologist + neurosurgeon). The health care system is difficult to navigate. You need a referral to see a specialist (even if your insurance doesn't require it). My neurologist, Dr. Y in Seattle, has actually refused to refer me to a new neurologist in Portland. Today OHSU neurology told me that a referral from my primary doctor (PCP) would probably not be good enough. Some medical staffers are courteous and professional (e.g. Dr. M's office), others can be downright rude and unhelpful (e.g. Dr. Y's office).
I haven't made it past step 3. yet, because I've been getting the run-around from doctors for the last month. Good thing I pay $350 /mo. for health insurance!

Syringomyelia (SM) is a serious condition. It typically causes chronic severe pain, numbness, loss of sensation. It can also cause paralysis, stabbing chest pains, eye problems, crippling muscle spacticity, and joint damage. Knowing that, you'd think doctors and their staff would take you seriously. You'd think.

This blog is a way for me to vent about some of the bullshit I go through as I try to find good healthcare for this rare condition. I hope to spread awareness and urge the beaucratic health care system to refocus on the patient.