Pre - Newport trip

I haven't posted an update after my trip last week because we're currently in a bit of a strategizing phase.

Last Monday, Craig and I flew back to Baltimore for my third visit with Dr. Crutchfield. I wasn't quite sure what to expect, given the lack of progress I've made with the occipital injections thus far, but the plan was to get the third round and get his take on whether my response to the dorsal root ganglion diagnostic blocks warranted the radiofrequency ablation by my docs here in Phoenix. Once we were in the office, Dr. Crutchfield decided that it didn't make sense for him to proceed with the injections (which was fine with us because we know the likelihood of relief drops significantly after he first, and especially the second one).

Dr. Crutchfield also said that he did NOT think it was a good idea to do the dorsal root ganglion ablations (at least at this stage of the game), citing the much higher risk of more serious damage. It's always kind of tough to have two well-respected doctors echoing different opinions about the most appropriate (and safe) course of action.

Dr. Crutchfield explained that he believes the source of pain could very well be coming from the nerve roots at C1 and C2 and recommended that we go after those with steroid injections. It's not easy to find physicians that work this high up in the cervical spine, simply because it's prime real estate. If the needle misses by the smallest bit, you could easily injure the carotid or vertebral arteries and that is NOT something you want to mess with (think paralysis, etc.) He has a doctor in Baltimore that he knows does it, but we had actually just reached out to one of my former neurologists at Mayo Clinic and got the name of a doc at UCLA who is recognized as one of the very few who work that high up in the spine.

So we actually left Baltimore feeling pretty encouraged. Though one of Craig's colleague with a contact at UCLA, Craig was able to connect with this doctor there last week. Unfortunately, after reviewing my history, he did NOT think that the nerve root blocks were appropriate and instead recommended some headache center in Chicago.

Ahhhhhhh. Maybe that would be less overwhelming if my baseline wasn't already a groundhog day headache.

Anyway, the set-in-stone plan right now is to travel to Newport Beach next Monday for my 10 day physical therapy visit at Wetzler PT. There's still a chance we could be seeing a doc in another department at UCLA while we're there, but that's TBD. There's also a chance that I could be seeing another pain doctor for an additional opinion in Newport Beach (someone that a friend is putting us in touch with this week).

So, there you go. Now the REAL question is...

What would I do without this puppy to keep me on my toes (and laughing) every day??

dorsal root ganglion blocks

Good morning friends. I haven't posted in a few weeks because I've been a little busy hanging out at the Surgery Center of Scottsdale. Hah, but seriously, I've been there 4 times in the last week and a half.

Last week, I started with two medial branch blocks at C2-C5. They like to perform the left and right sides on separate days because the blocks can interfere with proprioception. The procedure itself isn't too painful. I opted out of sedation for both because I don't like feeling groggy afterward but mostly because you can't eat for 6 hours prior (hah!). After the doc injects a numbing agent, he injects the 3 spots with saline and some type of steroidal anti-inflammatory. These injections were just meant to be diagnostic, meaning that if they provided some temporary relief in the next few hours (or potentially even day or so since the steroid can take longer to kick in), we have some indication of the pain source and could proceed with the radiofrequency ablations.

Unfortunately, I hadn't yet experienced any changes in my 6.5-7/10 pain levels when I returned the next morning to have my right side done and by the time I returned to AZ Pain Specislists for my post-procedure consult later in the week, I had no changes to report on the second side either. Bummer.

Our next step, as explained in my previous post, was another set of diagnostic blocks, this time of the dorsal ganglion root at C1/C2. To recap, the dorsal root ganglion blocks the root of the nerve just as it exits the spinal column (including the same image again because it's a good visual). The "ganglion" is essentially a cluster of nerve cell bodies in a dorsal root (a branch of a nerve carrying mostly sensory signals into the spinal cord).

This past Monday, I had the DGR block on my left side. I returned to see my doctor that afternoon to discuss my (lack of) response and determined that we'd move forward with the second side. The only changes I experienced were in the middle of the night on Monday, when I woke up from my sleep in pretty excruciating pain. It turns out it's not that unexpected for the procedure to elicit this response. So with dwindling patience, I was back on the table Tuesday morning for the right side.

I had started physical therapy at EXOS last week and we'd decided that since I hadn't any soft-tissue work in my traps/neck for a while, it would be worth trying to incorporate back into my rehab. I had a massage scheduled at EXOS with Eric on Tuesday to work on all of those deep neck muscles. My sternocleidomastoid, scalenes, splenius capitus, splenius cervicis, etc. were incredibly lit up, as usual, so he focused on trying to alleviate trigger points in these areas.

I went to bed Tuesday with my normal pain levels and then...

WAIT FOR IT.....

Wednesday morning I woke up in MUCH, MUCH LESS pain. I think I told Craig I was down to a 4, which may not seem a lot less than than a 6 or 7, but when you're in pain 24/7, every tenth of a point is absolutely significant. Between the blocks and soft-tissue work, it was hard to know exactly what had created the change. When I went back to see Dr. McJunkin on Thursday, he felt confident that the right side block had provided us some key information about the pain source and recommended that we proceed with the radiofrequency ablation. I was already scheduled to see Eric for another session on Friday so we all agreed that how I responded to that treatment (likely on Saturday) could confirm whether it was the massage or the block that gave me some degree of relief on Wednesday.

So after a very painful Friday, I woke up this morning without a break in pain. I know there is some major dysfunction in my soft-tissue but perhaps this could mean that the pain-spasm-pain cycle just doesn't start with the spasm and the RF could help to break the cycle. I'm trying to remember that each step, whether it works or doesn't, is an additional piece of information that takes me closer to the solution. But holy shit, that is not easy to do.

The dorsal root ganglion RF will likely be scheduled for the week after next. In the meantime, Craig and I fly back out to Baltimore for my third and final round of occipital injections with Dr. Crutchfield this coming Monday. We're also scheduled for a 10 day trip to Newport Beach, CA at the beginning of May to see Gail Wetzler, PT, who is the mentor of Veronika, the PT and visceral manipulation practitioner that I've seen here in Phoenix for a while. I have a series of sessions with her spread out over the course of our visit. At least I'll be able to squeeze some beach time into that one!

Thanks for reading! And one more things... if you are physically able to do something active today, go do it! We never fully appreciate how lucky we are to have something (like physical health) until it's put to the test. I know that when my head stops hurting, I'm going to wake up every morning feeling so grateful that I'm pain free. (Then go for a mountain bike ride.)

Recap of second Baltimore visit + AZ Pain Specialists

First off, I hope my post earlier this week didn't come across as overly negative. While each of patient perspective take-aways I included were inspired by my first-hand experience with pain doctors, neurologists, etc. I should have also mentioned that over the past few years, I've seen some of the very best practitioners in the world, including doctors and therapists with an exceptional bedside manner and eagerness to help me in whatever way possible. It's those practitioners who have the set the bar so high, which I am incredibly grateful for. Honestly, my biggest frustration comes from thinking about all of the patients out there in pain who don't have the same resources at their disposal and unrelenting support that I've been so fortunate to have. I absolutely don't take for granted being able to fly across the country for a procedure from a highly renowned neurologist or knowing that if one thing doesn't work out, my boyfriend's also using his (incredibly helpful) personal and professional network to line up the next thing, or being able to choose a superior physical therapist or physcian who doesn't take insurance over a mediocre one that does. But...I think it's fair to say that out of the 100 million Americans suffering from chronic pain, I'm the exception. The bottom line is, if you're in pain and want to get out of pain, you shouldn't have to go through hell to get there.

Anyway, I do have a few updates since my last trip to Dr. Crutchfield in Baltimore last Friday for my second round of injections. I arrived feeling a bit discouraged, since I haven't had any relief after the first several weeks before...but we kept reminding ourselves that *2.36* was the average number so it wasn't unrealistic to think that it could take up to 3 rounds for progress to be made. I usually don't have too hard of a time adjusting to the change in time zones but our 3 AM (MDT) wakeup call added a nice touch of exhaustion to an already emotionally stressful day. Craig and I were able to squeeze in a workout at the hotel gym and during my :30/:30 sprints on the Airdyne, I actually found myself closing my eyes for brief naps during my rest intervals. That was a first.

So after physically examining my neck, Dr. Crutchfield decided that he would only inject the right side this time. He thought the left side felt better to him (trigger point wise), which was frustrating for me because I've always felt (and still do) about 70-75% of my pain coming from the left side. When I explained that I haven't felt any different taking the muscle relaxant, anti-inflammatory, or anti-seizure drug (for pain), he wrote me a prescription for a new drug called Amitriptyline, which is an anti-depressant commonly used to help with chronic pain and also suggested that I start some PT now focused on strengthening my deep neck muscles that have now been even more turned off over the last few months in the collar.

We couldn't review my post-neck collar x-rays to check on progress with my C1/C2 instability as planned because he hadn't received them yet, but we did talk about a few potential future scenarios:

1. If my headache goes away after the 2nd or 3rd injection...well, it's gone and then we celebrate.
2. If my headache goes away after the 2nd or 3rd injection TEMPORARILY, then I would be a potential candidate for a occipital nerve decompression surgery and would we consult with Dr. Ducic, the plastic surgeon who performs it.
3. If my pain continues to remain unchanged, then... ah, we try to figure out what to do next?

Craig and I left the visit ready to give the second round a fighting chance with plans to return in another 2.5 weeks but also wanted to get the ball rolling on a few other fronts, just in case.

First off, I scheduled a visit with my ND, Dr. Popiel this past Tuesday to get his input on the situation. I had filled my prescription for Amitriptyline but hadn't taken it yet and wanted to ask him if he thought there was anything, supplement wise (or least more natural) that may have the same effect. He did write me a prescription for Limbrel, an osteoarthritis drug that he's seen provide pain relief to patients with fibromyalgia so thought it may be worth a shot. We also chatted with Dr. Popiel about Prolotherapy, which I think I mentioned on here a few months ago. Prolotherapy (short for "proliferation therapy") involves injecting an otherwise non-pharmacological and non-active irritant solution into the body, generally in the region of tendons or ligaments for the purpose of strengthening weakened connective tissue and alleviating musculoskeletal pain. It seems like it's mostly NDs and chiropractors that use it, so most conventional docs either don't know too much about it or don't seem to think too highly of it (in my experience). We all agreed that it was worth keeping on the table as a potential option, depending how a few other things go first, which leads me to my next new appointment this week at Arizona Pain Specialists.

We were connected to Dr. Tory McJunkin, MD at at Arizona Pain Specialists by our (very helpful and generous) neighbor, Bret, and had a refreshingly positive visit with him on Wednesday. Earlier in the week, I had picked up my own copy of my x-ray report, which found no abnormalities in my c-spine. On the one hand, this is great news and leads us to believe that the cervical collar did allow my joints to stabilize...but on the other hand, we can't forget that the original imaging was a motion x-ray, so we're not exactly comparing apples to apples (though Dr. Crutchfield did say a static view would be sufficient?). After hearing the relevant points of my last 2.5 years and reviewing radiology reports, Dr. McJunkin, Craig and myself were all on the same page. We've attacked my occipital region with injections and we've attached C3-C5 with injections and nerve ablations, but we haven't quite tackled what's below the occipital region and above C3-C5 (invasively, that is) -- which is indeed the area that I've always felt the pain originating from. So the takeaway recommendations from our conversation were...

1. See a neurosurgeon to make sure there's not something going on at C1/C2. Nerve blocks at C1/C2 aren't something to mess around with. He told us he's only performed two in his career. One of the reasons it's considered higher risk a smaller margin for error in placement of the needle, given the proximity of the vertebral artery.

2. Start with a medial branch nerve block (diagnostic) at C2-C5, one side at a time. If the response to these blocks provided temporary relief (within hours), we'd proceed with a radiofrequency nerve ablation (RFA). This wouldn't be a pulsed RFA like the one I had with Dr. Schurgin back in December, because Dr. McJunkin has had better success performing non-pulsed, lower temp ablations (70 degrees C vs. 90).

3. IF I still have pain after that, there's a chance it really is coming from a different place, so we'll try another diagnostic procedure - a C1/C2 dorsal root ganglion block, which is an injection used to block the root of the nerve just as it exits the spinal column...ideally to help identify the origin of pain. We'd go one side at a time again on this block and IF it provides temporary relief, we'd move forward with colder (or less hot) RF C1/C2 injection.

4. If the dorsal root ganglion block isn't successful, we'd consider a sphenopalentine ganglion block. This is actually located kind of superficially towards the back of the face.

We also discussed some regenerative treatment options that Dr. McJunkin thinks may be worth pursuing. Prolotherapy is considered to be a regenerative treatment, but he told us that in his experience, something called platelet rich plasma therapy (PRP) is more effective. Here's a quick explanation of PRP from his website...

Platelet rich plasma begins by drawing some of the patient’s own blood. This blood is placed in a special type of centrifuge and spun until it separates into three layers. The top layer contains only plasma with very few cells. The bottom layer contains concentrated red blood cells — cells responsible for transporting oxygen and nutrients throughout the body. In between those layers is a middle layer containing concentrated platelets. This middle layer — called platelet rich plasma — is separated from the other components of the blood in the centrifuge.
How does it work?

Platelets are best known for their role in wound closure. When you get cut, platelets help stop the bleeding so that long term healing can begin. Platelets are also important to long term healing. Platelets contain 1100 biologically active proteins, including many involved in the regeneration of tissues. PRP also contains growth factors that support the growth of new tissues. Together these proteins and growth factors are responsible for healing various injuries. By concentrating them in platelet rich plasma and then injecting this concentrate at the site of an injury, we are delivering a concentrated dose of the body’s healing ability where it is needed the most.

The other regenerative treatment option we learned about is called Amniogenic Flograf Therapy. This essentially consists of injecting my C-spine with amniotic fluid that's been taken from healthy C-section births. The idea is that it helps to regenerate tissue by improving inflammation and immune response. Amniotic membrane tissues also contain collagen matrices, which can function as a sort of scaffolding in the healing process, as well as stem cells, which are capable of differentiating into many different types of body cells.

SO, luckily we were able to schedule the first medial branch diagnostics for yesterday morning and this morning (one one the left and one on the right). I experienced no relief on the left side, and maybe a tiny bit of reduction on the right, but not sure yet if it's significant (I was a 7/10 when I woke up and would say I'm at a 6.5/10 post-procedure). Based on our conversation, it sounds like the next step will be the dorsal root ganglion blocks, which haven't been scheduled yet but will hopefully be very soon.

Seriously universe...let's wrap this thing up. I have shit to do.