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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!

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