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 Jürgen 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.

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.

an open letter to doctors

In the last two years, I've seen many of you. I'm not sure of the exact number at this point, and I would hate to insult you so early on by mistakenly including chiropractors or naturopaths in my tally (calm down, it's a joke) but let's just say it's more than an ideal number. Don't get me wrong, I have nothing against you. I respect your profession more than you know. I trust you with my life and I genuinely believe you when you say that your number one goal is to help people. But I think that in order to truly help people, you MUST be able to appreciate the user experience...to understand the patient perspective. Here we go.

1. When you yourself aren't able to provide us a solution, try to put your ego aside and help us find someone or something that can. If you really feel like there's nothing more you can do to help guide us in the right direction, please don't become an additional barrier or source of stress. For example, if we call your office to request our medical records, please don't refuse to send them, forcing us to go through a completely avoidable complaint process with the U.S. Office for Civil Rights.

2. Modernize your practice and communication. It's 2014. Fax machines are obsolete and email is a perfectly acceptable (and convenient) means of relaying information. Also, you don't need to be an award winning typist, but when you are charging us hundreds of dollars per hour, don't sit in front of us using using the hunt and peck one finger method to record your notes. Worse yet, please don't decide that a voice dictation method is more convenient for you and interrupt us every twelve seconds through the duration of our conversation to repeat what we have told you into your microphone. That actually may be the opposite of efficient.

3. Keep enough chairs in your waiting room for all of us to sit. If cigarette smokers tend to linger on the sidewalk outside your waiting room, consider finding a solution to this problem.

4. Don't let us perceive your annoyance if we express concern about the drugs you've recommended. You understand the reality and statistics of adverse side effects because you're the expert. We are not.

5. If you don't provide us with new patient paperwork before our appointment, don't fill out the paperwork for us during the first 20 minutes of our one hour appointment with you. If you insist on doing this, definitely don't charge us $450 per hour.

6. Manage your schedule. We're reasonable people, and most of us will understand that emergences happen and certain situations warrant extra time and attention (which we're actually grateful for!), which means the occasional two hours spent in a waiting room are inevitable. But if you are consistently running 45-90 minutes behind, perhaps it's time to reevaluate your scheduling capacity.

7. Open your mind and try not to judge. If you're an alternative medical practitioner, don't scoff at the conventional path we've pursued. If you're a conventional medical practitioner, don't roll your eyes at our experiences with alternative treatments. Just because you haven't read the research doesn't mean the data doesn't existence. The data not existing doesn't negate an opportunity for you to learn something that could help more of us down the road.

8. Be empathetic. And no, that doesn't require a psychology degree or mean that you need to hold our hand and sing kum ba yah. It means that you need to be able to see the world, even if just momentarily, through eyes other than your own. Maybe it's our boyfriend's perspective you need to adopt. Can you imagine what it would be like bringing your significant other to doctor after doctor after doctor without relief? What their state of mind must be like? Their level of frustration and exhaustion? At the risk of sounding golden-rule-ish, how would you want to be treated if you were sitting on the other side of the table?

9. Don't underestimate the power of body language. Make eye contact. Shake our hands when we come into your office. Use a purposeful tone of voice. Don't reach into your pocket to check your phone while we speak to you. If we start crying, try handing us a tissue box instead of immediately turning around or looking away because it makes you feel uncomfortable. There is no level of intellect, degree, or salary that excuses you from exercising these basic social skills.

10. For the love of *insert respective greater power*, do not interrupt us repeatedly (or anyone, for that matter) when we're speaking to you. Don't just hear our story, listen. Some parts may seem irrelevant and we apologize because we know you have a schedule to keep, so be able to tactfully keep our conversation focused and on track. If this isn't a skill you possess, practice it.

11. If we cry during our visit with you because we're in physical pain and frustrated that we're not making progress, don't diagnose us with a mood disorder and suggest a menu of anti-depressants to help us feel better. This will make us feel misunderstood and discouraged even more.

12. At the end of every visit, confirm that we're on board with the treatment plan you've put worth. Ask us if we have questions or concerns that weren't addressed.

13. Last but not least, let us know you’re on our team. I know you can't promise us that you'll have the magic bullet cure, but make a promise that you'll support us. Don't assume that we already have a team of people behind us. Trust me when I say that all we want is to be able to leave your office feeling less hopeless than when we arrived. Saying something as simple as “I'm committed to helping you” could be all it takes.

B-More, round 2...plus some unconditional happiness

Since I last wrote, post-first round of injections with Dr. Crutchfield, I have yet to feel any relief or changes in my symptoms. Frustrating, yes...but like I explained before, the "average" number of necessary injections is 2.36 so still room for hope that they could actually help. Dr. Crutchfield assured us last week that it's still worth going through with round 2. If I don't experience any changes after that, we'll reassess and likely not proceed with a third set.

So Craig and I fly back to Baltimore tomorrow for my Friday morning appointment. In addition to the injections, he'll also review the radiology report from the x-rays I had done yesterday here in Phoenix. We're hoping to see an improvement in the ligament instability at C1/C2, as a result of wearing that sweet neck brace these past 9 weeks. It's been tough forcing myself to keep it on when I haven't felt a sliver of improvement in my pain. Case in point - I pulled up next to a friend yesterday at a red light. We rolled down our windows and he yelled "where's your neck brace??" and I said, "oh, it's right here" as I reached into my bag, which was sitting in the passenger seat next to me. Like so many other things I've done in chasing down this headache, the lack of positive feedback (that I can FEEL, that is) is incredibly challenging to deal with. I liken it to the frustration of someone trying to lose weight, who exercises and eats well every single day and never ever sees their numbers shift...not even a tiny little bit. As more time passes, it becomes harder and harder for that person to stay motivated...to feel like the small steps they take every day are propelling them forward.

Well that's kind of a bummer mindset to get stuck in. Until a few weeks ago, Craig and I had a no-fail remedy for my bummed out feeling, and that was YouTube-ing videos of cute puppies (obviously). Somewhere along the line, I decided that it would just be easier if we got our own cute puppy and that would save us the trouble of sorting through all of the mediocre YouTube clips. Wearing Craig down wasn't an overnight process...it took relentless commitment and persistence. Given that I'm not working right now, I convinced him that if we ever wanted a dog (which we knew we both did), NOW was actually the perfect time. So I arranged for us to visit a litter of black and yellow lab puppies and once we saw this face, there was no turning back.

If you're friends with me on Facebook, this isn't breaking news because I've probably blown up your newsfeed over the last week or so (you can unfriend me, I'll understand). But our little Charlie girl truly is the most welcomed source of unconditional happiness for both Craig and I. It doesn't matter how shitty you feel...try looking at this and not smiling.

First visit with Dr. Crutchfield

Monday's visit with Dr. Crutchfield in Baltimore went as planned. Fortunately, he had already received ALL of my records back in January so at least it didn't feel like we were completely starting from scratch. Based on the examination and review of my fluoroscopic motion x-ray, he didn't see any signs of traumatic brain injury (always a good thing), and agreed that all symptoms are likely coming from the rocking of my C1/C2 vertebra and the consequent inflammation around my occipital nerve (also known as "occipital neuralgia"). By definition, occipital neuralgia is caused by the occipital nerve being trapped and irritated by the tendons of the back of the neck. Every time my head moves (which, let's face it...is pretty much all of the time, even when my activity level is modified) the nerve will be irritated and can cause a headache that extends over the top of the head to the temples and behind the eyes (exactly where I feel my pain).

The doc was so "impressed" by the clarity of my instability that he asked my permission to use the imaging for a presentation at an upcoming neurology conference. Knowing that some doctor (and ultimately, patient) out there could potentially learn from the journey I've been on, even if just from a single step, is at least a gratifying feeling.

So Dr. Crutchfield proceeded with the first round of injections as planned, which contained Lidocaine (a local anesthetic) and Kenalog (an anti-inflammatory corticosteroid). On the right side of my head (which is the better of the two) the needle slid right in, but on the left side I literally heard and felt the "crunch" of the needle going in...proof of just how inflamed the area is. Gross.

He reminded us that in his experience, it takes an average of 2.36 injections for patients in my situation to feel relief, with an ultimate success rate of 86%. I'll continue wearing the neck brace and before I head back to Baltimore for my second round of injections in about two weeks, I'll have another x-ray taken here in AZ. When Dr. Crutchfield looks at the x-ray, the instability should ideally be improved, given that I'll have been in the brace for 9 weeks by then. IF there's still too much mobility at that 9 week mark, we'll talk about another approach to PT to focus on my deep intrinsic neck muscles.

If the injections DON'T work, it could be because of accumulated scar tissue. If that's the case, he would refer me to one of his colleagues, Dr. Ducic at Georgetown University Hospital, who performs nerve decompression surgery. He's actually the surgeon who performed Brianna Scurry's surgery from that story I mentioned a few posts ago. That surgery has a 91% success rate. I REALLY don't want it to come to surgery, but still lots of hypotheticals between here and there so for right now, I'm trying just trying to take it one step at a time.

I left my appointment on Monday with prescriptions for three different medications, which I've been on now for a few days...
1. A Methylprednisone Dospak - the anti-inflammatory steroid
2. Tizanidine - a muscle relaxant to help my neck muscles calm down
3. Gabapentin (i.e. Neurontin) - an anti seizure drug to help bring the pain down (also the one I was on last summer and stopped taking because it made me feel like shit, but this is a much, much lower dose)

I'm not a huge fan of being on this stuff, but I've had to just accept that it's not a long term solution, but simply part of the process. When I expressed my concern about side effects to Craig, he reminded me of one possible side effect I hadn't mentioned...pain relief. Touché.

So, that's the update. In case you haven't figured this out by now, my body likes to make things interesting...so, no...I haven't yet felt any relief from the injections or medications this week. Given the statistic he provided about the average number of injections needed, I shouldn't feel too discouraged, although he did say that he would expect at least SOME relief to justify performing the next round. Right now we're waiting to hear back from him to figure out what to do if I don't experience any changes before the end of the month when we're scheduled to fly back to Baltimore.

Thanks all for reading...and for all of the love and support along the way :)