Stem Cell Update, Motherhood, 8.5 Year Summary, Post-Concussion Syndrome + New Treatments

Doesn't that title just have such a nice ring to it? 

Hello! I've missed you! I've been wanting to catch you all up on here for a while now but it turns out that finding big chunks of time to sit down and write can be tricky with a new baby. Who knew? So, I've resorted to a new approach: type like a madwoman in 15 minutes increments until this post is complete. Apologies in advance if it reads as choppy as it was written! 

Speaking of that newborn life...(before I get into the most recent updates, including a recap of our trip to Grand Cayman in the fall for my bone marrow aspiration and some new treatments on the horizon)...

Last time I posted was in March 2019 and I was four months pregnant. Today, our baby girl, Ryan Grace, is four months old! Wow. What a whirlwind it is has been, in all of the best possible ways! She's a strong, healthy, happy babe with bright blue eyes and a full head of hair. Craig and I (and Charlie) are so deeply in love. 

Has my head pain made new parenthood extra challenging? In some ways...yes, absolutely. Without a doubt. But you know how sometimes a light gets turned on in a room that you didn't even realized was dimmed? That's the best way to describe it. 

That being said, the entire journey into motherhood has been such a stark reminder of just how severe my physical pain has become over the last 8.5 years. Truth be told,  I loved being pregnant. I loved that I was able to grow and nourish Ryan; to witness and appreciate this ultimate capability of my body...a body I had mounting reason to otherwise resent. 

The hardest part of it all? My head, unequivocally so. The real kicker here though is that pregnancy didn't actually make it worse. We're talking just baseline pain. Perhaps a blessing in disguise (or a silver lining? or a desperate grasp at optimism?) was my tolerance for discomfort. When I'd hear others mamas-to-be lamenting the physical struggles of pregnancy, it reminded me that "oh right, most people don't feel unrelenting pain every second of the day." I was smart about it, for sure, but I was able to maintain my daily 6am EXOS workouts through the entirety of pregnancy. I even lifted the morning before my due date, going into labor that night (which I also credit a very easy postpartum recovery to). But even so, I went to sleep every night with two icepacks situated on each temple...just as I've done every night before and every night since. 

And I don't say any of that to minimize the challenges of growing, birthing, or raising a human. Clearly that shit is hard. But, "hard" is all relative, isn't it? 

Even as I approached my unmedicated labor and birth, my greatest fear was not the pain of pushing a baby out of me. I was afraid of an ungodly spike in my head pain, similar to my experience with my Topomax-induced kidney stones-turned blood infection that landed me in Mass General several years back. It seems that when my body is under any kind of extreme stress, it takes my headache from bad to so much worse. 

And it sure did! Forty hours of labor took an incredible toll on my head. But for the first time, I was experiencing secondary pain that carried with it something unfamiliar and magical: a light at the end of the tunnel. Holding Ryan in my arms. That made getting through it, headache and all, worth every ounce of agony. 

Side note, if you or any expecting parents you know could benefit from this nugget, check out Evidence-Based Birth! Having so little control over my pain levels twenty four hours a day, it was important for me to eliminate, or at least mitigate, as many stressors as possible throughout pregnancy and childbirth. Craig and I wanted to feel informed and empowered to make the best decisions along the way; decisions that aligned with our values and were rooted in evidence-based medicine (which surprisingly, is not always reflected in standard of care in most U.S. hospitals). Over the last decade, we've learned the importance of advocating for yourself as a patient and being a smart consumer of healthcare. So Craig and I took that class early on and feel it was instrumental in preparing us for a natural childbirth. We really can't say enough good things about it.

So, now I'm on the other side of the "fourth trimester." Days - even the ones that feel infinitely long - morph into weeks that just continue flying by. Craig and I are finding our footing as parents, our girl is thriving, and I'm looking ahead to my upcoming treatments with a renowned sense of hope...and let's be honest...plea to the universe that I can finally gain some traction on my quest for relief. 

Craig is such an incredible Dad, just as I knew he would be. Though I don't recommend chronic pain as a prerequisite to parenthood, my headache journey has made Craig and I such a rock solid team. He is hands down, the strongest, most loving, supportive partner I could ever ask for. This little lady sure is a lucky one. 

So before diving in to what I'm currently doing and have scheduled for the coming months, I thought it might be helpful to include a summary to date. Since I've been communicating with a few new practitioners over the last month and even revisiting some "previously checked boxes," I've found a step back (because 8 years, holy shit) to be helpful. 

Here goes...

January 2020 

I have been suffering from a severe and intractable 24/7 headache for the last 8.5 years following a mountain bike accident. The bike wreck was non-contact in nature. I attempted to ride over a tree that had fallen across the trail but my front tire hit the tree, my bike immediately stopped, and I was pitched off to the side. I did not go over my handlebars and did not hit my head. I know understand the mechanism of injury to be more whiplash in nature. The day following the wreck, I developed severe vertigo and vomiting, which lasted about a week. The vertigo continued, especially with rapid head movement, but resolved gradually over the next six months.

A few weeks after the initial bike accident, I started developing neck tightness and intermittent headaches which increased over time in frequency, length, and severity. I also developed a significant TMJ popping after the accident, which has since resolved. My headache progressed to 24/7 pain in October 2012. The pain covers my entire head, including my occipital, temporal, sphenoid, frontal, and supraorbital regions. I have always felt that the pain has been driven by something in my upper cervical/lower occipital region. On a scale of 1-10, my “normal” pain ranges from a 6-9 and has become progressively debilitating over the past several years. I stopped working in 2013 due to my pain. 

At this point I have seen over 150 practitioners of varying disciplines:

• Physical Therapists
• Neurologists
• Spinal Surgeons
• Neurosurgeons
• Pain Management Doctors
• Naturopathic Physicians
• Osteopathic Physicians
• Neuro-optometrist
• Dietitians
• Massage Therapists/Soft Tissue Specialists
• Chiropractors
• Chinese Medicine Doctors
• Psychologists
• Mind-Body Practitioners
• Functional Neurology Chiropractors
• Dentists/TMJ Specialists
• Orthodontist
• Energy healer
• Medical Intuitive

I have tried a myriad of therapies, none of which provided any repeatable relief:

Medications, including 

• NSAIDS
• Gabapentin
• Topamax
• Lymbril
• Cymbalta
• Benzodiazepine
• Dilaudid
• Toradol
• Zofran
• Cambia
• Miloxicam
• Tramadol
• Tizanidine
• Methylprednisone Dosepack
• Migraine infusions
• Ketamine infusions
• Medical marijuana
• Lose Dose Naltrexone (LDN)
• Magnesium infusions
• Butterbur
• Gliacin
• + tons of supplements

A host of non-invasive treatments, including...

• Cefaly migraine device
• Vagal Nerve Stimulator 
• Eneura Transcranial magnetic stimulation
• Corrective Exercise
• Manual Therapy
• Craniosacral Therapy
• Brain Integration therapy
• Biofeedback
• Immobilization (soft and hard neck collars)
• Myofascial Release
• Active Release Technique (A.R.T.)
• Scraping
• Trigger Point Release
• PRI Therapy (Postural Restoration Institute)
• Ozone Infusions
• NUCCA Chiropractic
• Anti-inflammatory Diet
• Ketogenic Diet
• Atlas-Orthogonal Chiropractic
• Gravitational Pattern Alignment (GPA) Chiropractic
• EMDR
• Craniosacral Therapy
• Eastern Acupuncture
• Western Acupuncture
• Cupping
• Dry Needling
• Ultrasound
• Neurofeedback
• Cold Laser
•  Infrared Sauna
• Hypnosis
• E-stim
• Hyperbaric Oxygen Therapy
• Cryotherapy

And a number of more invasive procedures, including:

• Botox injections
• Trigger point injections 
• Prolozonetherapy
• Prolotherapy
• Platelet-Rich Plasma Therapy (PRP)
• C1 nerve root block
• Medial branch nerve blocks (bilateral c2-c7)
• Pulsed radiofrequency medial branch nerve ablation- bilateral c2-7
• Dorsal root ganglion block
• Sphenopalatine blocks
• Occipital field block
• Supraorbital block
• C1/C2 fusion and craniectomy 
• Occipital nerve decompression/excision surgeries 

Up until 2017, the only definitive diagnosis I'd received was from Dr Joel Frank, a neurosurgeon in Tampa, FL. He identified compromised alar and transverse ligaments with an upright MRI and severe C1/2 instability with a digital motion x-ray. The DMX showed 7.5 mm of excursion on my right side and 10 mm on the left. Also included in his findings was cerebellar tonsillar ectopia and C1 capsular synovitis with associated compression on my brain stem (which was thought to be restricting cerebral spinal fluid flow).

In 2015, Dr Frank performed a C1/2 fusion and craniectomy. Two 4 mm diameter titanium screws were guided from the insertion points to connect C1 and C2. Two square cm of bone from my occipital skull base were removed. In addition to the screws, they also added bone matrix material (with stem cells from a donor), directly on C1 and C2 to help create a bony fusion. He had performed the procedure on 150 patients with similar histories and imaging as mine with all but one experiencing a reduction in symptoms, but unfortunately, I didn't get any relief from the procedure. I have completely recovered from the surgery with no activity limitations, but since the surgery, my pain has gotten progressively worse.

My neurologist at Mayo Clinic (Dr David Dodick) has always believed my pain to be due to central sensitization, but I've always felt very strongly that something is still wrong in neck. I can point to specific spots on my neck and the base of my skull where I feel the pain is coming from.

In 2017, I saw a plastic surgeon in San Francisco, Dr. Ziv Peled, who specializes in the treatment of occipital neuralgia headaches/migraines with peripheral nerve surgery. After a very positive response to a series of diagnostic occipital nerve blocks, I underwent a decompression of both my right and left greater occipital nerves, right and left lesser occipital nerves, and an excision of both right and left third occipital nerves. A few months later, I underwent excision of my left lesser occipital nerve. Unfortunately, my head pain persisted, along with what can only be described as a chronic tightness/spasm throughout my neck (specifically my splenius capitis, semisplenius capitis, rectus capitis, and obliquus capitis).

In 2018, I traveled to CO to see Dr. Centeno at the Centeno-Schultz Clinic (founders of Regenexx). He performed a series of blocks (under guidance) in my CO-C1 and C1-C2 facet joints and along with review of my updated DMX and physical exam, determined that there was clear damage to my C1-C2 facet capsules (the fluid he injected leaked right out of the joint space). I soon returned to CO to have Dr. Centeno perform PRP injections into those joints as a first step. During that procedure, the leaky joints had started to fuse (likely as a result of the anti-inflammatory included in he diagnostic block, which was a good thing). Unfortunately, the PRP didn't provide relief so we decided to move forward with a cultured stem cell procedure. I had to take a big break before beginning treatment because I (thankfully!!) got pregnant in 2019.

In November 2019, I traveled to Dr. Centeno's practice in Grand Cayman, where, unlike in the U.S. per some wonky FDA regulations, he's able to culture stem cells for longer than a single day (making them more potent and effective). The purpose of this first trip was just to extract the stem cells via a bone marrow aspiration in my hip. After being isolated from the bone marrow, they're cultured to larger numbers and after the culturing process, are thoroughly tested for quality assurance, including testing for sterility and karyotype analysis to ensure they're safe and healthy for reinjection. 

So off we went to the Caribbean. Ryan traveled like a champ, earning her first passport stamp at just seven weeks old! The procedure wasn't bad at all. I opted for just a local anesthetic since I'm breastfeeding and didn't want to deal with anything else passing through my system. The only real discomfort I felt was some bone soreness a few days after (small price to pay). 

Craig, Ryan, and I will head back there in March for the actual treatment. Dr. Centeno will reinject my stem cells into my C1-C2 facet joints, along with my superficial cervical plexus. To summarize Dr. Centeno's explanation of its relevance in chronic headache patients: the superficial cervical plexus is a network of nerve fibers that originates from the upper neck spinal nerves. It exits the body behind the sternocleidomastoid muscle (SCM) and travels to: 

1. Back of the head - the plexus gives rise to the lesser occipital nerve 

2. Side of the neck - the transverse cervical nerve also comes from this spot 

3. Near the collar bone - the supraclavicular nerves also come from here 

4. Ear/front of ear the back of the temple 

Irritation of the superficial cervical plexus can contribute to pain in the back of the head, pain in the side to front of the neck, and collar bone area pain. The plexus can become irritated by an overly tight SCM, as a result of injured C1-C2 facet joints. Story certainly checks out for me, so worth a shot (pun intended) to include it in this treatment. 

Here's a visual I found helpful. (source) 

Now for some additional developments. 

Earlier this month, thanks to the referral of a tenacious fellow chronic pain warrior-turned-friend, I consulted telephonically with a new physician in Columbus, OH, Dr. Cooper. At Dr. Cooper's practice, NeuroRadiance Health Initiative, he uses an integrative approach to treat patients suffering from a variety of neurological issues, from neurodegenerative disease to traumatic brain injuries and other headache/migraine conditions. 

Dr. Cooper underwent a thorough review of all of my neck and brain imaging to date and saw some things that have never been called out before. Most notably, he believes there is thinning (not atrophy) of my brain's parietal cortex. In other words, the MRI signal that is coming from the existing parietal cortex is decreased with respect to normal, but the volume of tissue and cortex there is okay. The theory here would be that there is less blood flow to these areas of my brain than the other brain regions and thus it shows up differently. This gives us reason to believe that although I may not have hit my head on an outside force in that bike wreck, my brain very much hit the inside of my skull pretty damn hard. This is essentially (at least in part) a post-concussion condition. With that said, Dr. Cooper believes my current symptoms could very well be a combination of a traumatic neck injury (which I've known to be true) AND a traumatic brain injury. And because I've never struck the perfect balance of treatment for both, perhaps that is why I've never gained any real traction in my recovery. 

One of his primary treatment modalities is near infrared laser therapy, or photobiomodulation. This is a Class 4 laser that uses light energy to penetrate 3-5 cm through the scalp into the neurons' mitochondria for energy (ATP). The goal in treating specific areas of the brain is to increase blood flow and help the tissue create new blood vessels. 

I'm still learning about how this all works and its potential application for me, and still consulting with Dr. Cooper (who has been incredibly generous and resourceful with his time), but here's his overview of how photobiomodulation can decrease inflammation and improve pain levels: 

Reduces Inflammation

PBM is a particularly powerful anti-inflammatory agent because it affects the inflammatory process in 3 different ways:

1. Increases certain components of the inflammatory cascade (macrophages, lymphocytes, neutrophils). This accelerates the process of inflammation which in turn leads to more rapid resolution of inflammation
2. Increases levels of the powerful anti-oxidant Superoxide Dismutase (SOD) in living tissues, which helps resolve high levels of inflammatory free radicals that contribute to the pain and severity of inflammation.
3. Decreases Interleukin-1 and other agents (cytokines) responsible for producing and prolonging inflammation

Pain Relief

The reason PBM is so effective at decreasing pain and has so many clinical studies confirming its efficacy against pain of many different types from many different causes is because it works against pain through FIVE different mechanisms:

1. Decreases bradykinin – this decreases overall nerve sensitivity and ’pain pathways’
2. Stabilizes and normalizes ion channels that become ‘out of balance’ and contribute to pain
3. Releases endorphins – the body’s natural analgesic
4. Releases enkephalins – related to endorphins and contributes to pain relief
5. Blocks synaptic pain signals – decreases sensitivity of many types of nerve fibers In order for photons of light energy to have biological effects, they must first be absorbed by biological/living tissues.

Of course, there's no guarantee this will help me, but given that my current symptoms could, at least in part, still be driven by post-concussion syndrome and considering how low-risk/non-invasive the therapy is, how could I not try? 

In addition to treating my brain, it could even be quite beneficial to target to my upper cervical spine, where those damaged facet joints are getting reinjected. In fact, there's even research showing laser application to significantly increase in proliferation in vitro to the mesenchymal stem cells (MSCs) isolated from bone barrow or cardiac stem cells." In other words, the laser helps activate cells to create the right kind of environment for the stem cells to succeed in. No plans have been finalized yet, but we're thinking it'll make the most sense to travel to Ohio AFTER my reinjection for a series of treatments with Dr. Cooper. Logically, that seems to make the most sense to maximize my stem cell treatment. We'd stay there for a week and get in two treatments per day for five days before reassessing future treatment. 

Through all these discussions, Craig and I decided, just sort of as an experiment, to try some class 4 laser treatments here in town (at Arizona K-Laser Neuropathy Center) while we wait for March to roll around. I have been treated with this kind of laser before in physical therapy, but we figured a series of concentrated sessions (right now, 3 per week) would be worth a shot. This doctor has been treating just my general c-spine area; it's not a targeted brain-approach like it will be with Dr. Cooper. 

And there's one final therapy that I'm just beginning to explore right now, called Frequency Specific Microcurrent (FSM). This was another referral from the friend mentioned before, who recently was treated by the founder, Dr. Carolyn McMakin, with some really positive outcomes. 

Microcurrent is a technique for treating pain by using low-level electrical current. A frequency is the rate at which a sound wave or electronic pulse is produced (measured in hertz) and various frequencies can be used to potentially reduce inflammation, repair tissue, and reduce pain. One explanation of how FSM works, according to the Cleveland Clinic, is by potentially increasing the production of ATP - by as much as 500% in damaged tissues! (ATP is the major source of energy for all cellular reactions in the body). 

It's a modality used by chiropractors and physical therapists but what I'm learning is that different conditions (including post-concussion syndrome and facet joint injuries) require very specific frequencies and protocols so it seems like it's worth seeing someone who has a high level of training and experience with those. I'll plan to dedicate an upcoming post to this soon because I've only had a phone consultation with a local physician, Dr. Sosnowski, and am scheduled to see her for my first treatment in a couple of weeks. In the meantime, I'll plan to chip away at some literature I have access to: two publications written by Dr. McMakin - Frequency Specific Microcurrent in Pain Management and her more patient-geared book, The Resonance Effect: How Frequency Specific Microcurrent in Changing Modern Medicine. The latter was recommended to me by Dr. Sosnowski, as she herself suffered from chronic headaches (also after a mountain bike accident!) and is a case study in the book. Pretty wild, huh? I'm really looking forward to seeing her. 

Okay, nap time is ticking away and Ryan's music class departure time is fast approaching so time to wrap this up. As always, just doing my best to piece this ridiculous puzzle together. One day at a time. I'm hopeful that sharing it can help someone else along the way, as others' stories continue to do for me.