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Sunday, May 18, 2014

CA update

Craig and I returned on Wednesday from our 10 day road trip to sunny So Cal. We stayed in Newport Beach, where I was scheduled for five physical therapy sessions with integrative manual therapist, Gail Wetzler, and one tentative appointment with a new pain doctor, Dr. Paicius at Newport Beach Headache & Pain. To recap, the goal of getting in to see Dr. Paicius was to get a second (or maybe fourth?) opinion on the following...

1. Dorsal root ganglion blocks at C1/C2 provided some relief the following day (for part of the day) on the left side only so Dr. McJunkin wanted to do a DRG ablation.
2. Dr. Crutchfield said risk of doing DRG ablation outweighs possible benefit and didn't think it's a good idea. Occipital injections also didn't work with Dr. Crutchfield so he recommended finding someone that does steroid injections at C1/C2.
3. Dr. Dodick at Mayo points us in direction of doc at UCLA who is the only one he knows that works that high in cervical spine. Doc at UCLA says absolutely not the right course of treatment.

Clearly, we welcomed another opinion so we're pretty happy when Dr. Paicius' office called to come in on our second day in town. He listened carefully to everything I'd been through and been told and gave us his pretty clear cut recommendation.

- The "chronic pain" component of what I'm experiencing needs to be addressed with medication. This means not doing the DRG block, due to the risk of permanent nerve damage that could make the pain I'm experiencing now seem like a walk in the park. It's important to understand that chronic pain is unique in that it literally changes the brain...functionally, structurally, and chemically. It doesn't mean the pain stimulus isn't there anymore, but it doesn't necessarily need to be there anymore. This part isn't news to me, but this time seems like... what other choice do I have?

- I'll try two medications (Cymbalta and Topomax) for 3-4 weeks. If they're helpful (measured by 30-70% improvement), I'll continue taking them for 1 year. The idea of being on meds still freaks me out a little, but he really stressed how much safer they are than sticking needles into your upper cervical spine. I get it.

-If the medications don't work (had to ask), the only procedure he suggested pursuing is something called peripheral stimulation with electricity. This would consist of percutaneous placement of an electrode in the painful area of the head. After a trial of 2-5 days, the electrode is removed, and depending on the success, the electrode can be permanently implanted. Yikes...

So I've been on the medication now for about 10 days. So far, I haven't felt any decrease in pain...though I have experienced some negative (yet common) side effects like drowsiness, nausea, and loss of appetite since the scheduled boost in my daily dosage a few days ago. On Friday he told me to go back down to my original dose so I'm hoping those symptoms won't last.

And now an update on the PT front...

My first session with Gail was more of an evaluation, so I basically had four treatment sessions with her. I may add some more details in here once she sends us her notes but the gist of what she found was a pattern of adaptive shortening and compression on my right side, from my skull down to my sacrum. She felt a torsion through my skull (which Ron Hruska, PT at Postural Restoration Institute in Nebraska also thought a few months ago) and that this may be responsible for the dysfunction in my upper cervical spine. It would also explain the chronic lengthening of my left side (right shortens, left stretches) which is where my upper trap and neck muscles are in constant spasm yet unresponsive to all of the bodywork I've had.

Gail worked on opening and realigning my cranial sutures but by the end of my final session, I hadn't yet felt any changes. She recommended that along with Veronika using Gail's findings back in Phoenix to continue treatments, I also see a cranial osteopath from A.T. Still who may be better able to address the cranial issues. We also discussed the potential of coming back out to Newport Beach to try prolotherapy with a doctor that she knows who performs it under guidance (which not everyone does).

Despite the circumstances, Newport Beach is beautiful and certainly not a bad place to spend 10 days. Craig's time was split working, but we soaked up as much of our pseudo-vaca as possible. I walked every day on the beach, lounged by the pool, and even found a local Pilates studio to get my fix. We were able to visit with Craig's brother Matt and his husband Chris, who live in Hollywood, and met up with USMNT coach J├╝rgen Klinsmann for coffee (awesome guy).

So all in all, not the miracle trip that I was crossing my fingers for, but definitely a step forward. I would be lying if I said that I don't get incredibly discouraged but that's where this guy comes in to keep my head up and my eyes on the prize. When the idea of my headache ever going away feels out of reach, he tells me that I don't have to believe that it will..I just have to believe the he believes.

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