A few months ago, I started a new treatment protocol for traumatic brain injury (TBI) at the Regenerative Medicine Center in Pittsburgh. I faced many obstacles leading up to this treatment that had prevented me from exploring it much sooner in my recovery. I was told I couldn’t get better, to accept that this is the best I’ll ever get. This is a similar tune heard by many TBI sufferers and it shouldn’t be that way. I hope that my experience can bring some much needed light and perspective to both brain injury sufferers and medical providers alike.
To the medical providers: There is a way to help these patients get better. To the TBI sufferers: There is a light at the end of the tunnel.
In this post, you will learn the medical explanation of this treatment, my flawed experience with conventional medicine for treatment of TBI, my progress and reflection of all that has transpired since starting this new protocol just a few short months ago.
This post is a culmination of months and a huge feat for me as I have spent a lot of time listening, slowly writing, slowly reading, and re-reading in order to gain a deeper understanding of the science behind the treatment. I still have so much to learn! I knew more layers would be revealed as time went on and that there are still many layers to come, but I feel it is important to share this and spread this information. I was initially hesitant because I had this residual feeling from many other treatments in the past that had failed. I thought that maybe this was too good to be true. It turns out, this treatment is good and true! It has been an extremely humbling process.
Flashback to my first post about my initial trip to Pittsburgh, I first learned of the use of neurosteroids to treat TBI while listening to a few podcasts.
After hearing about this treatment in a podcast one year into my recovery, I posed the idea to several of my doctors which was essentially shunned. One doctor said to me, “I’m not sure hormones really play a role in brain injury recovery.” This had led me to suppress the idea that this could help me and was a real option. I brushed it aside as the reaction from my providers led me to feel like this was a crazy idea and one simply out of desperation.
Another year had passed and again, I heard another podcast about neuroendocrinology and this treatment. At that point, I felt so desperate and didn’t care what any of my current doctors thought about seeking this treatment. I discovered Dr. Valerie Donaldson who had completed a certification process in Neuroendocrinology TBI treatment protocols led by Dr. Mark Gordon, who developed them. Dr. Donaldson is also an expert in regenerative medicine and functional medicine so I attribute my success to all of her knowledge in many areas as well as the TBI protocols.
The Neurosteroid TBI Connection
Neuroendocrinology is the study of medicine that relates to the interaction between the endocrine system and nervous system. This focuses on the hormonal activity throughout the body that is regulated by the brain. Neurosteroids are hormones synthesized by the brain, regulating the growth of neurons as well as the connections and communicating system between the neurons. Neurosteroids act in target glands throughout the body such as the thyroid, adrenal glands and gonads (ovaries and testes).
There is primary and secondary injury following brain trauma. The primary injury leads to cellular damages, vascular damages, ischemia (restricted blood flow) and metabolic crisis. The secondary phase is riddled with complex processes, a toxic symphony leading to the fostering of a highly inflammatory state in the brain. The secondary effects from this process can present as symptoms even decades later, and by that point the association between the symptoms and the brain injury may have been lost, resulting in long-term suffering. Without identifying the underlying cause, healing potential is limited and inflammation continues.
The pituitary gland and hypothalamus are both key players in hormonal regulation. These two areas are easily impacted and highly vulnerable to brain injury. The hypothalamus resides between the pituitary gland and the inner brain, connecting the endocrine and nervous systems. Living at the base of the brain is the pituitary gland. It plays such a central role in the endocrine system that it gained the reputation of the “master gland.”
The hypothalamic-pituitary axis is the system that intertwines the central nervous system with the endocrine system. It has been found that TBI can lead to dysfunction of this axis, causing various hormonal abnormalities. In research, it is estimated that about 50-76% of TBI patients show some loss of pituitary neurosteroid function and suggests that 58% of these patients will recover within a year but the other 52% carry on to develop new deficiencies a year after the initial injury.1-3
Through research and working with thousands of TBI patients, Dr. Gordon found that neurosteroid hormone deficiency or insufficiency (low “normal” range) is often found in brain injury patients and the underlying cause of prolonged symptoms, with growth hormone abnormality being the most common. By properly addressing chronic inflammation, identifying the deficiencies and treating them, there has been great success getting brain trauma patients better with reproducible results. I had wondered if I could be one of those patients.
Neurosteroid deficiencies could mean reductions in any of the following: growth hormone, estrogen, pregnenolone, DHEA, progesterone, testosterone. While all of these play a huge role, growth hormone is of high importance because it is essentially the quarterback of so many functions in the body. If the level declines, the functions of the body start to decline too. Growth hormone is responsible for overseeing these functions: mood, stress, energy, memory, sleep, immune system, sex, circulation, bones, joints, weight, skin and hair.
Interestingly, the symptomatology that is a result of neuroendocrine dysfunction is the same symptomatology of that which is labeled post concussion syndrome. The symptoms include but are not limited to, memory loss, attention difficulties, insomnia, impaired cognition, fatigue, depression, anxiety, mood swings, personality changes. Instead of screening for and identifying such dysfunction, a patient may be labeled with post concussion syndrome and continue to suffer with many debilitating symptoms for years.
Dr. Gordon has had great success helping many veterans who have been diagnosed with PTSD by using these protocols and has found the root of that diagnosis is most often chronic inflammation and this dysfunction secondary to brain trauma. The issue is that these patients, such as myself, are treated with pharmaceutical medications for the symptoms but these pharmaceuticals do not address the underlying cause of inflammation and do not replenish the deficient neurosteroids.
This is not typically taught in medical studies. I wish I had known about this prior to my injury. Suggestions from Dr. Gordon and others about screening for this have come to light. Dr. Gordon recommends screening as soon as possible after TBI as a baseline, followed by hormone panels at 3, 6 and 12 months from the initial testing. Another suggestion is to order a hormone panel at 3 months post-injury if symptoms suggest neuroendocrine dysfunction or if there are delayed symptoms at any point up to 3 years post-injury.4-5
Despite the thousands of articles available demonstrating the connection between TBI and hormonal dysfunction for more than a decade, this is still a very under-diagnosed consequence of brain injury that is not typically screened for in patients. It’s hard to ignore such research and statistics and say that this would play no role in brain injury recovery.
Conventional Medicine Failures
I want to preface this section by saying, I do believe conventional medicine has a place and I also did have positive experiences with a select few providers in conventional medicine. This is a reflection of my own personal experience and failures of conventional medicine for the treatment of my traumatic brain injury. My frustrations and disappointments are valid and I feel it is important to share them as I felt I didn’t have a voice in this process for so long and I know many others have felt similarly. I am a prime example of a patient with chronic ailments that fell through the cracks of conventional medicine and I hope this can save another from this major fallout.
At some point during my recovery, my treatment started to feel redundant, like the same things were recommended over and over again. The end result was the same – I still felt miserable or even more miserable. It felt as if I were banging my head against a wall. It reminded me of Albert Einstein’s quote about insanity. I feel like that accurately sums up the treatment I received for over two years with the exception of a select few practitioners that provided meaningful benefit.
The definition of insanity is doing the same thing over and over again, and expecting different results.Albert Einstein
Throughout my recovery, I found that I, as a person, wasn’t being treated but rather my symptoms were being treated and, in the end, this helped foster the identity crisis I was already experiencing.
Unfortunately, I became faceless. The 13-year-old girl who had been seen for a head injury before my appointment was given the same treatment as me, just as the 40-year-old male who was seen after me. We were all the same. I know this after connecting with other TBI sufferers and hearing their experiences. It was as if the “individual” was taken out of the treatment plans.
I had seen dozens of specialists, each dissecting me to only peer inside one system. It reminds me of my days in the cadaver lab, as we dissected each system. Soon after the injury I was seeing 20 different providers for each symptom I was experiencing, none communicating with each other and so instead of a whole being I became this long list of symptoms. They were so zoomed in on one tiny part but never zoomed back out to look at the big picture, to look at how important it is for all of the intricate systems to work together again. The big picture was me as a person, but the big picture was also seeing that an underlying cause led to all of my residual ailments.
In my darkest moments, I was desperate for help. I was desperate to be heard. I was desperate to just be seen.
When I wasn’t making progress and wasn’t getting better, I was usually told a variety of things: “Try this new medication. Just give it more time. It’s all in your head. There is nothing more to offer you.” It felt like I was fending for myself because my providers gave up on me and my healing. This was so detrimental to my mental health to know that the very people who were supposed to help me gave up on me. The very people who were supposed to see me looked past me. I was crying out for help but couldn’t be heard.
I didn’t want to give up but this made me feel like maybe I should.
I’m one of the fortunate ones who did not give up. I thank my friends and family who helped carry me when I couldn’t carry myself. I continued to research more options and continued to present them to my doctors. Unfortunately, almost all of them did not believe the treatment options I was presenting to them were worth exploring. So, not only did it feel like they gave up on me and stopped offering me options, they also told me to stop exploring options too.
My providers who I was supposed to trust stopped problem-solving and advocating for me. They left that to me – the person working with an ineffective and dysfunctional brain, running on almost no energy like a car with its gas light on about to stall. I was fending for myself, working tirelessly with poor vision and depleted energy to get better.
The field of medicine is amazing and astounds me because it is ever-evolving and ever-changing. I became frustrated that my providers closed their minds off and stopped seeking new options and solutions. Aren’t we as medical providers supposed to be detectives of the human body? When did this change?
My treatment plan had been focused on symptomatic relief, and not full healing. This was because the thought process was that there was no room for improvement, no potential for full healing, and the only thing left to offer me was relieving the long list of symptoms I was left with. Unfortunately, most conventional medicine practices involve dishing out more and more medications. This typically leads to more medications being prescribed to combat the side effects from a medication initially prescribed.
Throughout my recovery, I had been on nearly 30 different medications, all with deleterious side effects. How does someone go from being on no medications to this? I was embarrassed to sit down every week to fill up my pill boxes because I couldn’t remember when to take the many pills I was on. These “treatments” only masked the symptoms and caused worsened effects. None of these different medications could have replenished my deficient levels of hormones!
The Start of Getting My Life Back
I did not expect my world to change when I walked into Dr. Donaldson’s office that day in February, but it did. That day is one I will never forget. It was the start of getting my life back.
The positive effects since then have been abundant. This visit started with a comprehensive lab work-up, a detailed history of treatments leading up to that point, my symptoms and my goals. The lab tests assessed how well the hypothalamic-pituitary axis was functioning and how the peripheral glands of the endocrine system were functioning. The treatment is individualized as no person is the same, just as no brain injury is the same.
How refreshing it was and is to be treated like a person and to not be placed in a bucket with every other patient and receive the same exact treatment. I am finally receiving an individualized treatment plan, and one that focuses on me as a whole. How refreshing to know that my doctor believes I can heal.
Dr. Donaldson’s lab work-up showed various significant and impressive hormonal deficiencies, more than I had anticipated. Instead of masking the symptoms with many pharmaceuticals, she works hard to identify the underlying cause and then treats accordingly by addressing inflammation, replenishing deficient hormones and providing additional support with nutraceuticals. Not only does she work hard to identify the underlying issues but works hard to put everything back together, to function in harmony as the body is supposed to.
This treatment protocol is multifaceted and ever-evolving. At each appointment, we go over everything in detail, determining if anything needs to be added or subtracted from the treatment protocol. Dr. Donaldson described it like a game of chess – a well thought out process, determining the next move to healing. I deeply appreciated this thought because where many providers would say there is nothing left that they can do for me or try the same thing on repeat to no avail, I know that Dr. Donaldson will not give up on me and is always thinking of what else can provide further benefit.
Shortly after I started a secretagogue to increase growth hormone production, I had the first glimmer of what quality sleep felt like again. I slept through the night for the first time in years. It felt like I had gone into a coma. I woke up and felt so strange that I had slept through the night that I moved my limbs to ensure I was in fact, alive. While my sleep is still a work in progress, I am deeply grateful for the spontaneous nights of sleep I have experienced since starting treatment.
Similarly, after starting testosterone replacement therapy, I had so much energy that I again felt strange. I felt like I could run a marathon. For the record, I would rather do any other activity than go running so that shows how exceptionally strange I felt. While I still experience fatigue, it has been refreshing to feel moments of energy again. I also noticed an improvement in mental clarity as well as a reduction in my nerve-related head and neck pain as testosterone helps to heal ligaments and joints.
One day recently, I started to develop an all too familiar migraine, one that would typically go on to last seven days straight and would not respond to any medications. It seemed like a miracle that the right dose of progesterone that Dr. Donaldson advised me to take rid the migraine completely within just a couple hours. After that, she said to me, “You are in control!” No provider has ever said that to me and that was one of the best and most empowering things to hear. For so long, I had felt like nothing was in my control.
I recently experienced the Light Portal at my last visit which I am now in love with based on my extremely positive and enlightening experience. This is an apparatus that uses light, color and sound, producing a profound and relaxing energy through the body. It is magical. I describe my full experience here. I look forward to future Light Portal sessions.
During my most recent visit, we also initiated exosome therapy. I am interested to see what benefits I may have. Derived from stem cells, exosomes are extracellular vesicles or tiny bubbles carrying genetic material and proteins. All living cells communicate with other cells and these are the messengers. They are like little envelopes, carrying important information that is released to promote cell repair, regeneration and healing.
Since beginning this treatment a few months ago, I have experienced the most progress I have since my injury, just over 2.5 years ago. Just the other day, I went on my first successful drive after countless failed attempts over the course of my recovery. And since then, I have gone on several more successful drives! Liberated just doesn’t cut it.
While I am still a work in progress, the newfound hope instilled in me brings me to tears. I know my recovery will continue to ebb and flow, but I now have a new perspective on what is possible. And I’m not letting anyone take that from me again.
An Evolution in Mindset
Aside from addressing my hormonal imbalances, chronic inflammation and the physical aspects, Dr. Donaldson has challenged me to change and evolve my perceptions about my limits. I didn’t realize until recently just how many limiting beliefs were instilled in me from this brain injury. It was a culmination of the injury and doctors telling me there wasn’t potential for improvement which then led to my own self-destructive thoughts and beliefs. The result was a lie that I convinced myself was true – an enormous lie that I couldn’t get better, that life as I once knew it was gone, that I would potentially never be able to work in medicine again.
“There is one grand lie – that we are limited. The only limits we have are the limits we believe.” Wayne Dyer
I was convinced I couldn’t get better because that’s what I was told. I tried so very hard to repel this belief but eventually, after hearing it over and over, I believed it and stored it within me. Even if my conscious mind said I will get better, the subconscious was holding onto that limiting belief, restricting me from my healing potential.
I’ve thought I’m not good enough or I’m not capable. Retaining new information is nearly impossible. The judgment of other people matters. My eyes are stuck like this. I can’t get better, therefore I am a failure. My brain is stuck like this. This is my new normal. This is the best I’ll ever get. These were messages sent to myself, restricting my potential. I hadn’t realized I was really doing this.
This evolution of mindset, in motion with other treatment modalities such as using neurosteroids where I am deficient, regenerative therapies, nutraceuticals and Light Portal has been a power force. While I still have a lot of progress to make, this has been a major kickstart to my healing.
A Reflection in Gratitude
How often do you walk into a doctor’s office and think, this person is going to change my life? How often do you walk into a doctor’s office and think, this person will end up feeling like family? For me, that’s rare. Truthfully, even as a medical provider myself, I had grown to hate going to appointments because they had become filled with despair and negativity. I left the appointments with immense anxiety and hopelessness. All of this changed at the Regenerative Medicine Center.
Throughout my career in the emergency department, I would receive a seemingly random positive experience review from a patient, describing how meaningful I was to them in that moment. It would often come as a surprise that I deeply affected that person and that I had left such a lasting impression. The effect you have on someone is more valuable than you may think.
You never know when someone will alter the course of your life for the better. And a lot of the time, you may not know just how great the impact or lasting impression you left on someone. It’s amazing and miraculous really that one interaction with someone has the power to change the course of your life. Think about how many people you may have touched deeply in your life but don’t ever know about it. Think about all the people who, in one moment or another, you felt so grateful for or still do and they don’t know it. This might have been a cashier at the grocery store, a nurse, someone you simply lost touch with but still think about, or even a stranger you struck up a brief conversation with. A simple, “Hello,” could be the start of an impression of a lifetime.
Sometimes we stop and express our gratitude but often we don’t because we might feel we don’t have time or, for me on various occasions, fear that it may be perceived as creepy to someone you don’t know deeply or just met. During so many moments of reflection about myself, life, love and the world, I think we should proclaim how we feel in those moments. Just that small expression may very well make the person’s day. We never know what burdens someone else may be carrying and that simple message could also be the thing that lifts their spirits and keeps them going.
I recently read a time capsule that I wrote in grade school when I was 9 years old. The time capsule included little prompts with a blank line after each one. We put them in an envelope addressed to ourselves to open five years later. I revisit it from time to time. One prompt read: Before I die, I hope __________. I wrote on the line: I say I love everybody. From a young age, I had this deep desire for everyone to feel love. I think it is so important, now more than ever, to share our gratitude and love and put it out into the world.
As I walked into the Regenerative Medicine Center that cold day in February, I was hopeless and desperate. To be completely honest, I didn’t have many expectations at that point in my recovery. I was desperate for help, to be heard, to be seen. It was in my darkest moment that I needed a lifeline and I got one.
I received help. I was heard. I was seen.
Dr. Donaldson altered the course of my life for the better. She is now associated with hope, light and all that is good. A lifeline. A connection I will never forget. She was a stranger, became my doctor and then became family. It’s amazing to think about how many people we may have touched deeply in our lives but don’t ever fully know about, so I wanted to take a moment to say, Dr. Donaldson has deeply touched mine and left a lasting mark on my heart and soul. She is a bright light, reminding me that healing is in fact, possible.
This is someone you want in your corner. This is someone who can get you your life back.
Someone asked me, “So, Dr. Donaldson is alternative medicine?” I replied, “Dr. Donaldson is an alternative to bad medicine.”
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2. Neuroendocrine dysfunction in the acute phase of traumatic brain injury, 2004, DOI: 10.1111/j.1365-2265.2004.02023.x
3. Acute and long-term pituitary insufficiency in traumatic brain injury: a prospective single-centre study, 2007, DOI: 10.1111/j.1365-2265.2007.02931.x
4. Neuroendocrine dysfunction following mild TBI: When to screen for it, 2014.
5. Traumatic Brain Injury, A Clinical Approach to Diagnosis and Treatment, 2016.
6. Neuropsychology and clinical neuroscience of persistent post-concussive syndrome, 2008, DOI: 10.10170S135561770808017X
7. Hypopituitarism After Multiple Concussions: A Retrospective Case Study in an Adolescent Male, 2007, PMID: 18060001
8. Pituitary function in subjects with mild traumatic brain injury: a review of literature and proposal of a screening strategy, 2010, DOI: 10.1007/s11102-009-0215-x
9. Neurobehavioral and quality of life changes associated with growth hormone insufficiency after complicated mild, moderate, or severe traumatic brain injury, 2006, DOI: 10.1089/neu.2006.23.928
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11. Neuroendocrine Dysfunction in a Young Athlete With Concussion A Case Report, 2017, DOI: 10.1097/JSM.0000000000000408