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Thursday, August 6, 2015

ready for September

I'm not posting an update on my Tampa trip (yet), due to some curveballs that got thrown my way these past few weeks and delayed our trip until the beginning of September. Such is life right? So here's all that's gone down in the last month and a half.

Shortly after my last post, Craig and I headed back to AZ Pain Specialists. Our goal in returning to the clinic, where I had seen Dr. McJunkin last year for medial branch nerve blocks at C2-C5 and dorsal root ganglion blocks) was to find out what regenerative treatment options they had in their arsenal. We had initially discussed platelet-rich plasma therapy (PRP) and stem-cell therapy but weren't sure they did that at the C1/C2 level (and it turns out they don't). We discussed a few other potential options to explore like peripheral nerve stimulators, which consists of actually implanting a device under the skin that produces a low voltage current, creating a sensation that blocks the brain's ability to sense the perceived pain. While I'm open to pretty much anything that has a chance at getting rid of my headache, this is one treatment that I just refuse to pursue (for a few reasons). We've discussed the actual research with my neurologist Dr. Dodick and for chronic headaches, the short and long-term outcomes really aren't good. But beyond that, I'm more certain than ever that I have a biomechanical/structural issue at the root of my pain that throwing some electrodes under my skin isn't going to fix. We did leave his office with another round of DRG blocks scheduled for a few weeks out though, as I seemed to have some questionable pain reduction in the following hours after last year's.

By early July, I had finished up my third or fourth prolotherapy session (from C2 and below) without progress. They would have expected at least some reduction in pain by this point, so we decided not to proceed with more sessions.

As I detailed in my last post, Craig and I finalized our trip to Florida for my consultation with neurosurgeon Dr. Franck, but had simultaneously stumbled upon a doctor in Chicago who specializes in regenerative therapies (including those in the upper cervical region). Craig got in contact with Dr. Hauser at Caring Medical , who, after reviewing my case, agreed it was worth flying out to see him. Here's two helpful videos of Dr. Hauser explaining how instability at C1/C2 (which we know I have from my digital motion x-ray) can compress the vertebral artery and cause chronic headaches originating from the suboccipital region. Side note: this is basically the same mechanism of pain that Dr. Franck targets, but obviously with less invasive techniques.

The approach Dr. Hauser uses to heal the ligaments at C1/C2 involves a combination of prolotherapy, stem-cell therapy, and PRP.

Lucky for us, he happens to have two offices - one just outside of Chicago and one in Ft. Meyers, FL, just two hours away from where I'll be seeing Dr. Franck. So we arranged my visits with both doctors during our trip at the end of July, just a few days after returning from our vacation with my family in Massachusetts.

Ahh, yes...about that vacation.

Craig and I flew into Boston on a Friday night. His plan was to be there about a week and I would stay closer to two. Even though I always look forward to annual vacations and holidays, they serve as a harsh reminder of another year passed without relief from my headache. Not to mention that they're supposed to be fun, social, relaxing; an self-inflicted expectation that makes my inevitable need to "leave early" from whenever I am or skip out on plans entirely all because of my intractable headache...that much more difficult to deal with.

I was so frustrated by my pain last summer that I told myself I wouldn't fly home again until my headache was gone. So this past Christmas was the first I ever spent away, but by the time this summer rolled around, I hadn't seen my dad or sister in a year (and only my mom for a few days last fall when she flew out to help take care of me during my ketamine infusion), so how could I keep enforcing a now clearly unsustainable rule? Our vacation was going to be low-key, though, so despite the anxiety I was feeling about my head, Craig and I were both looking forward to some time with my family, a few nights showing him around my college town in upstate NY, a day-trip to the Cape, some time at the beach, and some much-needed R&R.

On our first morning there, Craig, my mom, and I took our dog Zoe out for an easy hike in the woods by my parent's. The plan was to spend the rest of the day at my aunt and uncle's house for a family get-together, so when we got back from our hike mid-morning, I took a shower and got ready to leave. Mid-blow dry, I started feeling a bizarre ache in my left side...at first it felt like mild cramp but worsened by the minute and soon I was curled up on the couch in tears while Craig got directions to the closest hospital. When we arrived 20 minutes later, I was quickly ushered through the ER with apparent text-book symptoms of kidney stones. A CT scan soon confirmed that.

Kidney stones? What the f---?

The doctors gave me some narcotics, which got my flank pain under control and I spent a few hours on IV before being sent home. I was expected to pass the stones in a few days and prescribed more pain meds to stay comfortable until then. Craig and I ended up back in the ER in the middle of the night though, as the pain had gotten out of control again. This time, I was given a narcotic called Dilaudid, which helped my kidney stone pain but little did I know, would become my worst enemy over the next week.

We finally got back home early Sunday morning and tried to catch up on sleep. I was still feeling pretty shitty so spent most of the day in bed or on the couch. By Sunday night, things started to get really ugly for me as my headache started to climb beyond its normal baseline. The feeling of a drill going through my temples kept me up all Sunday night and by Monday morning it had reached an unbearable level. I couldn't eat or drink without throwing up, I couldn't sleep and I could barely talk because of the pain. Between my kidney stone discomfort, which wasn't exactly manageable at this point either, and the terrifying headache spike, we were back in the car to the hospital. This time we knew we needed to go straight to Mass General in Boston.

After a long few hours waiting in ER, I was given more pain meds and and later admitted overnight for observation. We had figured out at this point that I was having a rebound headache (layered on top of my normal headache) from the Dilaudid I had been given over the weekend. As uncomfortable as the whole kidney stone ordeal was at the point, I knew it was temporary...the pain I was feeling had an expiration date. My head, on the other hand, was a different story. I knew the increase in pain from the narcotic couldn't last forever, but I was also fully aware that I was in the best hospital in the country with a headache like I had never felt in my life and that I would be leaving the hospital in how ever many days with my headache. It made the whole situation feel more overwhelming than I can explain. Each time a doctor or nurse would ask, "what normally helps your headache at home?", I felt so helpless having to answer, "nothing, nothing helps it". By that point, Craig had been in communication with my Mayo neurologist, Dr. Dodick, who was then able to speak to the doctors at MGH and make some recommendations for my head. Finally, an IV drug called dihydroergotamine mesylate (DHE) seemed to get things under control. Speaking of Craig, if I had any ounce of doubt before this trip that he wasn't the best, most caring, loving, resilient human on the planet (which, for the record, I didn't), it's gone.

By Tuesday, I hadn't eaten and barely been able to drink since Saturday and that was definitely catching up with me too. I was on so many meds at that point that I'm not even sure what was making me sick but any sip of water that went in came straight back up along with plenty of dry heaving. Nice, huh? At some point on Tuesday morning, I woke up with a 103 fever, which was an obvious red flag for a blood infection. Apparently kidney stones can disrupt the whole filtration system enough that bacterial infections can occur. Later that afternoon, off I went to the OR to have a ureteral stent put in (which goes from kidney to bladder). This would stay in for a few weeks until I was finished my antibiotics and then I'd get both the stent and the stones taken out back home in AZ at Mayo Clinic.

I spent a few more rough nights in the hospital and finally got home Thursday night. I spent the next few days in recovery mode - slowly getting my appetite and energy back. My neck and upper back were in rough shape from from being in a hospital bed all week so I had a few massages scheduled, but my head took another turn for the worst on Monday after my first massage. We think I maybe still had some Dilaudid in my system or something. I realized when I arrived back in Phoenix on Tuesday that I had lost at least 10 lbs in 6 or 7 days, which had me feeling really drained.

In the whirlwind of the previous week and half, we hadn't really had time to deal with the obvious question of why the hell I had gotten kidney stones. They don't run in my family, I hydrate like a f-ing champ, I don't drink soda, I don't consume a ton of animal protein, I eat a completely unprocessed diet. The only thing that seems like a potential risk factor is that I consume a fair amount of high-oxalate foods like beets, spinach, and nuts, but could that really be the cause? I still don't know for sure what the reason is but during my consultation with the Mayo urologist the day after I got home, I found out that an anti-seizure medication I was on last summer for my headache, Topomax, is known to cause kidney stones. And even though this was a year ago, apparently the stones can take that long to develop. Awesome.

As I sat in the urologist's office that day, frustration with my headache was boiling over in the same way it had back in Boston when the doctors calmly asked what I take at home for pain relief. My eyes welled up with tears as the doctor walked me through the details of the incredibly routine procedure he'd be performing the following week...but not because I was afraid of getting a kidney stent taken out...What was really making me upset was how f-ing straightforward the whole thing was. I got kidney stones...they hurt, it sucked, I went to the hospital, I had a procedure, I took medicine, and in a few weeks it would all be behind me. That's how these things are supposed to work. So why, three and half years and over a hundred doctors later, do I still have a headache? No temporary pain, however bad it is, compares to the inescapable agony of chronic pain.

On Tuesday (two days ago), I went back to Mayo to get both the stones and the stent removed. Before surgery, they said there was a high probability that my ureter would be inflamed from the stones and another temporary stent would have to be implanted to keep it from closing up, but fortunately, when I woke up, I found out I was in the clear. In fact, the stones didn't seem to be there anymore (maybe broken down on their own) but whatever material they did recover will be tested to know for sure if the Topomax played a role.

Long story short, all of this nonsense is the reason the Tampa trip is pushed to next month (and also the reason I postponed the DRG blocks to a later date). I wanted to have a few weeks for my body to get back on track - to eat well, work out as much as I can tolerate - before beginning the regenerative therapy treatments. I'll be going into a neck brace for the 12 weeks of those treatments so mentally as much as physically, I needed a few weeks to decompress and get my shit together. And before FL, we also have a quick trip back to Austin for a follow up with dentist Dr. Ueckert and upper cervical PT Mark Strickland. I've been wearing my dental splint since we initially saw them back in January and need to figure out the next steps with that.

So...come on September, I'm ready for ya.