C1 nerve root block update and first visit to Freedom Pain Hospital

Well, 4 days post-procedure and no changes to report...other than an exceptionally painful last couple of days, which been pretty disheartening to say the least. I haven't yet decided whether to try the C1 nerve root block on the right side yet. We're still waiting to hear back from my neurologist, Dr. Dodick to get his opinion.

Meanwhile, we've been pursuing some other steps, as usual. Last week, we had a conversation with Craig's colleague, Dr. Sugarman (EXOS' director of applied neuroscience) about the therapeutic use of ketamine for chronic pain. You've probably heard of ketamine as an anesthetic, and depending how well versed you are in street drugs (a weak point for me, admittedly), you may be familiar with its reputation as a party drug with dissociative properties that provide hallucinogenic effects.

By blocking NMDA receptors for glutamate (different mechanisms than most anti-depressants), ketamine provides some promising therapeutic benefits, particularly in the treatment of depression and certain pain disorders like complex regional pain syndrome, which typically includes some element of central pain. I've explained this before but central pain is a neurological conditional, caused by damage or malfunction of the central nervous system, which over time causes a sensitization of the pain system. Basically what this means is that you could sustain an injury (in my case, bike accident) and have a very tangible "cause of pain" (let's say in my case it was a ligament instability, nerve irritation, etc.) and over time, the body adapts becomes sensitized to the pain. At some point, the mechanism of pain could be totally gone, or perhaps partially gone (i.e. ligaments heal, inflammation goes away), but the pain switch is still "turned on", if that makes sense.

Because it's been suspected for quite a while (particularly by Dr. Dodick) that central pain is playing some role in my headache, it seems logical that we'd have nothing to lose by treating central pain in any way possible. I have tried some things (Botox, medication, etc.) without result, but that doesn't mean that Ketamine doesn't deserve a chance to work its magic.

So in our research over the last week, we happened to stumble upon an integrative clinic here in Scottsdale, Freedom Pain Hospital, that performs Ketamine Infusion Therapy. This afternoon Craig and I went to meet with the medical director, Dr. Natalie Strand. The appointment went really well and we decided that a course of infusions was definitely worth a shot. I have to see a cardiologist and psychologist next week, per their clearance protocol, to get medical approval and should start treatment in just a few weeks. Dr. Strand explained that it's going to be a bit of a guessing game, simply because they don't really treat patients with exactly my condition. She suspects I'll need a stronger dose than migraine patients (which is generally one day) but less than complex regional pain patients (which is generally 10 days of 4 hour treatments). I think I'll be starting with 3-5 days, but may modify depending upon my response.

In today's visit, we also discussed the experiences I've had with occipital blocks. I've had these injections with at least 3 other neurologists over the past 1.5 years without relief, but we collectively thought it was odd that I've never felt numbing throughout my head after the injections (which I should feel). Craig and I always suspected that I was just resistant to lidocaine, but Dr. Strand said that there is a chance the nerve itself was never directly targeted. She suggested we try another round, but this time she'll inject over a "field" of space in the back of my head, which guarantees that the nerve will be covered. If I feel any kind of change with that procedure, we'll go from there. Fortunately, we were able to schedule it for tomorrow morning. If I have a positive response to the occipital blocks, we may try doing them again after I start the ketamine infusions. That way, we're targeting a peripheral pain source with the injections and a central pain source with the ketamine at the same time. More than likely, there's a peripheral and centralized pain contribution occurring, so this should provide an even stronger chance of attacking it.

More updates to come after tomorrow's visit.

Annnnd, breathe.