Over the past two and a half years, I have listened to hours and hours of TBI podcasts to learn more and seek out new treatment options. I heard one about neurosteroids and neuroendocrinology around one year following my injury. I already had a suspicion about six months after my injury that I had some sort of hormonal dysregulation going on. After trying over 20 different medications to treat my symptoms I felt even worse from the side effects. I was coming to the conclusion that these drugs were just bandaids, one layered over another, burying the underlying cause even deeper. Could this hormonal dysregulation be the root cause of all of this?
I had brought it up to several doctors who had dismissed it and essentially brushed it off. It seemed like this idea of addressing hormones was shunned. One doctor said to me, “I don’t think hormones really play a role in brain injury recovery.” Because it was dismissed by several doctors, I thought to myself, maybe that was a dumb idea thinking this could be what’s going on with me after all.
I sort of forgot about this until just a couple months ago when I again heard a podcast about addressing hormonal dysfunction and using neurosteroids to treat patients who had suffered TBI. It sounded like it was actually working, like there was so much success with this. The science was there for it. Could this actually work for me? I wasn’t going to bring this to my doctors because I felt like it would be dismissed again. At some point in my recovery, it truly felt like I was fending for myself. Even some of the new treatments I found on my own that actually did provide some positive improvements in my recovery were still brushed aside by some of my doctors.
After I heard of this treatment for a second time in a podcast, I thought, I need to find a doctor who is practicing this type of medicine for TBI. That’s when I found Dr. Valerie Donaldson in Pittsburgh, who completed a four-part certification process taught by Dr. Mark Gordon, pioneer of Neuroendocrinology TBI treatment protocols. I booked an appointment three weeks out and was elated because I didn’t even know if I would be able to get in. I was a little scared to commit to this TBI program because I was thinking, what if it doesn’t work? What if it turns out to be a huge failure or worse, what if it ends up hurting me and setting me back like other treatments? I would never know if I never tried, so I booked the first appointment. February 17, 2021, would be a good day to remember.
My Mom asked me two days before the appointment if we should postpone it because we were getting a huge snowstorm the next few days during the drive. I said, “Absolutely not, we need to make it to Pittsburgh tomorrow.” I couldn’t wait any longer because I was feeling so desperate and somehow it felt like this time would be different. I didn’t want to postpone this appointment even a day. At that point, I felt so desperate I may have even put on several snowsuits and started walking to Pittsburgh in the snowstorm. I was holding onto this thought that maybe this was the last part of my long journey to healing. This could be it. On the other hand, I was bracing myself in case history repeated itself and this was another failure in this journey like many before.
My Mom and I drove to Pittsburgh as planned. It did turn out as a blessing that the snowstorm held off during our driving hours. We drove the day before the appointment because I wouldn’t have been able to tolerate the drive there and back in one day. We stayed overnight which left me with nervous jitters like the night before a big game.
Something that has repeated itself throughout my recovery is that I’ve been treated like a constellation of symptoms rather than a person. 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 person I became this long list of symptoms. Each appointment was the same – check off the boxes and symptom score, tell me to come back in a month to do it all over again. Nothing new was being offered; I wondered why I was even going anymore. It’s like they gave up on me and weren’t able to offer me any more options to get better. This contributed to my identity crisis. I was struggling to know who I was anymore all while not being treated like a person. It was like kicking me while I was down. This changed in Pittsburgh.
I woke up the next morning – appointment day. I was hoping my insomnia would give me a break, but I only got a couple hours of sleep in. I was nervous, excited, exhausted, foggy. Time seemed to move slowly that morning and I was getting antsy to leave the hotel to go to the appointment.
We made it to the doctor’s office. I stood outside, staring at it, taking a big breath in. “Please let this help me,” I said aloud. It felt almost like I was pleading. I’ve prayed during my recovery but I haven’t felt like my prayers have been answered. I’ve struggled with the reason for all of this, if there is one. We walked into a cute, little office where we were greeted by the secretary with kindness. I was first taken back to have my blood drawn for testing and then joined my Mom back out in the waiting area. I sat there, a little fidgety, until we were called back. I could suddenly hear and feel the presence of my heartbeat. My Mom and I walked back into the doctor’s office.
We were greeted warmly by Dr. Donaldson and took a seat in the two chairs before her at her desk. She was comforting to talk to and I was met with so much empathy, kindness and understanding. Quickly, my nervousness and anxiety melted away. My heart became calm. Her knowledge was extremely humbling. I had said to her that I wanted her to implant all of her knowledge into my brain. When I described something I was experiencing, I didn’t feel degraded but rather understood. I was not being dismissed which had become a norm at many appointments leading up to this.
I walked into my appointment thinking the most impressive thing about the doctor would be her credentials and list of certifications (Internal Medicine, Emergency Medicine, Anti-Aging Medicine, Functional Medicine, Regenerative Medicine) but I left with the most impressive thing being her compassion, empathy, knowledge and ability to make me feel like I was actually being cared for and understood. I felt like I was in the right hands, that would actually do no harm. Not only that but the fact that she was able to bring me hope. And I so desperately needed that to keep going. This was an important reminder that compassion and empathy go a long way and at just the right moment, might be the thing that can bring a person out of a dark and lonely hole. She made me feel like I would be okay. And there are no words for that.
I left the office feeling lighter, like a weight was lifted off my shoulders. I was so overcome with emotion that happy tears streamed down my face. That day made me realize just how dispirited I had become. My visit with Dr. Donaldson provided hope for the first time in two years. It felt like I wouldn’t have to fend for myself anymore.
I felt not only like a person but a person who would get through this. When Dr. Donaldson said she would get me better and I would heal, I believed it because it was genuine. I trusted her. My trust with medical providers through this time period was hindered, leaving me skeptical and wondering if they really cared about my outcome at all. Leaving this appointment with that trust and hope was everything.
This glimmer of hope brought a positive feeling in me that I can’t fully articulate – a refreshing feeling that I had forgotten existed. I don’t want to get my hopes up too high because after seeking so many treatments over the past couple years with many downfalls and setbacks, it’s hard to fully let go of that. I have a really good feeling about this, though. To feel understood and like a whole person rather than a list of symptoms is a rarity these days and I felt that and continue to feel that in appointments with Dr. Donaldson. For now, my spirits are back and I’m going to ride this good wave as I continue in this program and hopefully ride it all the way to full healing.
After going to nearly 300 appointments and seeing my fair share of doctors over the past two and a half years, it had become common for follow up visits with those doctors to be filled with anxiety, stress and even dread. I have not felt this way with Dr. Donaldson. On the contrary, I look forward to my appointments with her and that speaks volumes. I am going to explain what this treatment consists of and this journey further in a future blog post as I continue along.
I am so grateful for Dr. Donaldson. There was a light in Pittsburgh that I so desperately needed. And I have a feeling, it’s just going to get brighter.