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Thursday, September 25, 2014

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.

Monday, September 22, 2014

C1 Nerve Root Block

Long day...but my C1 nerve root block (left side) is complete! So far, I'm not feeling any changes, but Dr. Chong has warned me that it could take up to a few days to kick in...so I'm trying to stay positive. Regardless of the outcome, the procedure will still serve as a helpful piece of information in trying to uncover the source of my headache moving forward. Depending how I feel in the next few days, we may also decide to proceed with the identical procedure on my right side next week.

Though I've had several nerve blocks/ablations done in the last 1.5 years, they've all been pretty low-risk outpatient procedures at various pain clinics. Today's procedure at Mayo Clinic felt a little different from the start, simply due to the greater risk of working at C1.

Allow me to explain with these 3 (somewhat humorous) things I learned today...

1. A C1 nerve root block has never been performed at Mayo Clinic (AZ or Rochester).
2. When you Google "C1 nerve root block", the first hit that appears...wait for it...MY BLOG. Not a medical journal. Not a pain clinic. Not a health organization. My blog.
3. When I was sitting in my hospital bed during recovery, I overheard a few doctors/nurses who were walking by say to each other... "There's NO room between the vertebral artery and C1!"

So, as you might imagine, our excitement was rivaled by some warranted anxiety. But Craig and I both felt incredibly confident in Dr. Chong and felt 100% certain the potential benefits far outweighed potential risks.

I checked in around noon and spent the next hour or so getting prepped by the nurses and meeting with the anesthesiology team that would be in the room "just in case". Originally, Dr. Chong hadn't planned on needing them available, but after planning for the procedure and consulting with some colleagues here at Mayo Scottsdale and in Rochester, MN he decided that would be best. The target space for the needle was very small and IF it had moved into the epidural space, I would have gone numb from the upper neck down, which would have stopped my breathing. If that was the case, they would have been there to intubate me. This consideration also changed the position I was in the table. Originally he was going to have my lie in a prone position, but I ended up propped up onto my right side so that they could have got to the leeds on my back in a shorter amount of time if there was a breathing emergency.

(Paparazzi snuck in)

Before he got started, Dr. Chong had Craig come into the OR to explain his exact plan of attack, complete with several helpful anatomy diagrams and cadaver images. I wish I could include the ones he showed us, but here's some visual to show you where the needle went...

Follow the arrows I stuck in there...

To give you a better sense of where the vertebral artery is in relation to that first vertebra, check this next one out. A needle accidentally hitting that would result in stroke...eek!

The procedure itself wasn't particularly painful (I had a little bit of sedative to take the edge off) but lasted longer than the other blocks I've had to date. Since it was performed with CT guidance, Dr. Chong used a contrast dye that allowed him to see exactly where he needed to be (which felt strangely hot as it shot through my body) and then injected the lidocaine and celestone bit by bit to ensure I was tolerating it well.

I'm back home now, feeling "normal" pain-wise and pretty groggy/in need of a good night's sleep. Hopefully I started feeling some changes in the next few days.

the best medicine

Friday, September 19, 2014

C1 nerve root block on Monday!

Yesterday I had my appointment with Dr. Chong, a vascular radiologist at Mayo Clinic. My neurologist, Dr. Dodick, had referred me to him to discuss a C1 nerve root block. In short, the visit went really well and we left with a plan of action that Craig and I are both feeling good about.

As he reviewed my radiology reports and we started discussing my "story", Dr. Chong reiterated to us that he isn't a headache specialist, or a even a pain specialist for that matter. He specializes in neurointervention. Basically, he puts needles in places that are hard to get to. And he's good at it.

As I've explained before, C1 blocks aren't common and that's because it's an area of prime real estate. The needle's target is a 2-3 mm space and Dr. Chong will perform the procedure under CT guidance (whereas my previous blocks/ablations have been under fluoroscopy). I mentioned in my last post that we needed to find out how much experience Dr. Chong has had with C1 nerve root blocks. He's only done a handful (which is a handful more than every other doctor) but his experience and expertise IS in using guided procedures to treat conditions like brain aneurysms, vascular malformations of the brain, etc. The way he explained it was that his experience/skill in the "how" of what he does is actually more important than there "where".

The procedure, which I'm scheduled to have THIS MONDAY (!!!) could potentially be both diagnostic and therapeutic. It will contain a short-acting anasthetic (lidacaine) and an anti-inflammatory (celestone). We'll start with just the left side this Monday, as he didn't want to do both sides in one day in case I didn't respond well.

The potential scenarios are as follows...

1. I start feeling pain relief in the first 24-48 hours, the pain cycle is finally broken, and my headache is gone forever. This scenario would kick ass, but what's more likely is...

2. I start feeling relief in the first 24-48 hours and my relief is temporary. The next step would then be for me to see Dr. Barry Birch, a spine surgeon at Mayo who would likely perform a permanent risotomy (where the nerve is actually cut). When we asked whether they'd consider a pulsed radiofrequency ablation like I had at C2-C5, Dr. Chong explained that although they're less invasive, RFs aren't quite as precise (i.e. safe).

3. I don't feel relief. Then we'll try the right side the next week.

4. I don't feel relief from either side. Then I'll be done with Dr. Chong and will loop back with Dr. Dodick to figure out next steps. (Dr. Chong is like a contractor here...basically being hired to perform a very specific task).

Lastly, Dr. Chong was NOT concerned at the basilar invagination from my MRI. He assured us that he actually sees this quite a bit and it doesn't worry him with me, simply because I have enough fluid surrounding my spinal cord in that area that appears to be "kinked". So that's great news.

I'll plan to update after Monday's procedure... Thanks for all the positive thoughts sent my way. They're felt and appreciated : )

Friday, September 5, 2014

September update

Yikes, that month flew by. My last post was a long one, with updates on my recent Rolfing treatment and cranial osteopathic treatments (both of which failed to yield any positive changes in my pain), as well as an outline of next steps, which included...

1. Seeing Dr. Dodick (my neurologist at Mayo Clinic) for a referral to his friend at UCLA who performs the C1 nerve root block.

2. Seeing Dr. McJunkin (my pain doctor at AZ Pain Specialists) to ask questions about the dorsal root ganglion ablation that he thought was warranted after a (somewhat?) positive response to the diagnostic dorsal root ganglion block I had a few months back, and find out more information about the regenerative therapies we've talked about with him in the past (stem cell therapy, PRP, etc.)

3. Address increasing hip pain with Tony, a PT at EXOS (in the chance that there's some dysfunction up the chain that's contributing to my headache).

I wasn't supposed to see Dr. Dodick until mid September, but thankfully he was able to get me in just before we left for our east coast trip to visit my family in August. Speaking of our trip, it was great to be home...we made it to my friends Heidi and Paul's amazing wedding, were able to spend time with some extended family, and vacationed our asses off at my aunt and uncle's ski house in beautiful Maine. Though I would have happily left my headache at home in Scottsdale, to shrivel up and die like the succulent cacti on my kitchen counter, the little fucker came along anyway. And as much I always love being home, the change in my normal daily routine was a bit tough on my pain. I don't think I fully appreciated how "low key" my lifestyle is these days until I was faced with a bit more stimulation...more activity, more commotion, more traveling, more talking, more listening, more socializing. So I found myself feeling more frustrated than ever, as I so, so desperately want to be able to do all of those things...to engage fully in the world without feeling like I need to go lay in a room by myself and cover my head with an ice pack and hope I can fall asleep for a while just to get a break from the pain. Comparing how I felt during this trip to the previous summer's Maine vacation, or even December when I was home last, was also a pretty harsh reminder of how my headache has worsened in the last year.

Cue the Debbie downer music, huh? But really, I do feel optimistic that we're getting close to a solution. We have to be, right?

So, back to my appointment with Dr. Dodick. He was still happy to refer me to Dr. Charles at UCLA for the C1 nerve root block procedure, but informed us of a new doctor right here at Mayo, Dr. Chong, who also does it. (Keep in mind that because C1 is such prime real estate and the margin for error is quite small compared to other levels of the spine, there are literally just a couple of doctors in the country that do it.) Dr. Chong is a vascular radiologist. I'm scheduled to see him for a consultation on September 18th, though him and Dr. Dodick have already discussed my case and it sounds like he's on board with the procedure.

Craig and I also spoke with Dr. Dodick about some additional pain management tools. He agrees that I'm pretty medicationed-out at this point, but told us about a new study he's in charge of that will be testing the effectiveness of TMS therapy on migraine/cluster headache patients. This is what the TMS device looks like...

TMS, or Transcranial Magnetic Stimulation uses a highly focused pulsed magnetic field, similar in type and strength to those produced by an MRI machine, to stimulate cortical neurons. Historically, it's been used in the treatment of depression but looks like it could be a promising therapy for the treatment of pain too, given that certain pain conditions involve very similar brain pathways as depression (ex: centralized pain, which Dr. Dodick thinks is at least part of what's going on me with). I don't technically qualify to participate in his study since my 24/7 headache isn't diagnosed as a migraine or cluster headache, but Dr. Dodick kindly offered to lend me a device to try out when they arrive next month. Worth a shot!

On to Dr. McJunkin... We went in to see him earlier this week. First, we expressed our concern around the risks of hypersentization of the dorsal root ganglion radiofrequency ablation (DRG RFA), which were communicated to us by Dr. Paicius, the pain doctor I saw in Newport Beach for a second opinion. To recall, Dr. Paicius instead wanted me to try another course of meds (Topomax and Cymbalta)...which I did for about 6 weeks without relief. Dr. McJunkin explained to us that DRG RFA is a "cold" RFA (less chance of neuritis) and that even if hypersensitivity occurred, it typically goes away in 8 weeks.

We also wanted to understand if and when the regenerative therapies would be appropriate - basically, what's the relationship between PRP, stem cell, and prolotherapy with the C1 nerve root block? His response was that they would essentially act as super powerful anti-inflammatories and agreed that it was reasonable for us to proceed with the C1 nerve root back, provided that Dr. Chong has done a fair number of these (I asked what number he'd be comfortable with and he said a a minimum of 10).

We discussed a few other potential options, like spinal cord stimulation (where a device actually gets implanted by your hip and stimulates the spinal cord and spinal nerves by tiny electrical impulses via a small electrical wire placed behind and just outside the spinal cord in the epidural space)...definitely NOT at the top of my list or his, and a sphenopalentine ganglion block (a transnasal procedure that blocks sympathetic activity by anesthetizing the SPG).

Lastly, we wanted to get his opinion on the basilar invagination from my MRI (remember I posted an image of the little "kink" in my spinal cord?) He thought it would be smart to see a neurosurgeon to get their take so referred me to Dr. Chang at Barrows.

We wrapped up the visit with this plan of attack
1. Have my C1 consult/likely procedure with Dr. Chong
2. Schedule a C2 DRG RFA.
3. Start exploring regenerative therapies, (probably stem cell first since he it's more powerful than PRP).

And finally...my hip...

I've been working with Tony at EXOS for a few weeks and my hip is actually FEELING BETTER. He's dry needled my psoas and also helped me establish some better glute activation exercises pre-workout that have made all the difference. This shouldn't seem so miraculous, but compared to my headache, treating a problem and then experiencing relief feels like actual magic. Even if my hip improvement hasn't translated to anything upstairs, I'm confident that all of the puzzle pieces are connected somehow. In the meantime, I'll settle for feeling strong on my mountain bike :)

More updates so come!