In this post, I’m going to write about the therapies and doctors that have helped me, with a brief explanation of each experience. I didn’t find the best specialists until at least after a year of trying various therapies and searching for solutions without success. Over the past few years I’ve had several conversations and learned a lot from people who deal with PPCS/TBI or have experienced it. From them and from my experience, I’ve noticed that in each region (of a state, country, world), the constellation of doctors who specialize in PPCS/TBI is different. Once we find a good doctor, we can often find more through them.

My guides and healers are organized according to my perception of how much they supported me in recovery:

1. EMDR (Eye Movement Desensitization and Reprocessing) therapy with a psychologist whose specialty is working with people with brain trauma (stroke, TBI, etc.) – I started this therapy more than a year after the accident. I was significantly affected by the emotional aspect, so having a specialist who could guide me to understand and process emotions was crucial. He helps me accept and live within my new reality, supports the mental and emotional healing, and believes in my abilities to grow and improve even when I can’t. My husband would say that this person is the one who helps me the most.
2. A Naturopath who also specializes in Concussion and TBI – This doctor treats my symptoms directly and also takes on the role of case coordinator for me. I found her a year ago and have been able to relax ever since because I know that she is a specialist who can take the reins of coordinating all the doctors, medications, supplements, etc. She tells me what treatment should be the priority at any given time, based on the capacity of my nervous system and brain.
3. Ophthalmologist specialized in Concussion and TBI – This doctor was able to correctly diagnose the vision problems I was living with. She also prescribed me glasses that are helpful to relax my vision. After having seen 3 different opticians, and still suffering from dizziness and visual over-stimulation, she was able to diagnose and chart a recovery path that suited my realities.
4. Vision Therapy – My vision therapist works in the same office as the ophthalmologist. She is also very knowledgeable about head trauma and has been giving me therapies for both the visual nervous system (syntonic phototherapy) and for eye muscle coordination. I go every two weeks and will be going for over a year. I do exercises at home and am slowly experiencing improvement. Before it would strain my eyes just making a sandwich. Now I can spend 30 minutes in the kitchen or even driving on the highway!
5. A Educational Kinesiologist – There aren’t many like this woman. She has a very unique practice. But I think her methods overlap quite a bit with occupational therapy and other therapies for people with dyslexia, ADHD, down syndrome, and more conditions. She was the first person I saw visibly emotionally affected by my situation. She had suffered a severe concussion herself years before mine and clearly knew the situation I was in. She taught my husband and I some exercises to calm the nervous system and also recommended SSP (Safe and Sound Protocol) which was the first step in decreasing the auditory hypersensitivity that prevented me from doing everyday activities such as chewing crunchy foods. She also educated me quite a bit about the situation I was in.
6. Physical Therapy – Although it is 6th on this list, this modality is essential. Again, it has to be a physio who knows something about concussion and traumatic brain injury. In my case, my therapist has helped me with balance, and we are spending a lot of time on strengthening my neck. Whiplash is not always talked about as part of TBI, but the two conditions go hand-in-hand very often. For me, that has meant that I have to work hard on rebuilding the inner muscles of my neck. When I started, the physio told me that when I walk I look like a bobblehead toy because my neck just doesn’t have much strength. Slowly I am getting better.
7. Nucca / Atlas adjustment – This is a chiropractic treatment specializing in the C1 and C2 vertebrae. It turns out that when I fell, both vertebrae were slightly twisted. I have been on this treatment for 5 or 6 months and it has been instrumental in improving my vision, digestion, and hearing hypersensitivity. The neck pain that had been with me for over two years is also gone.
8. Audiologist – For some reason, treating phonophobia is one of the last symptoms to be treated. I tried to deal with this over a year ago – I went to an audiologist and was told I had perfect hearing. I was told about a hyperacusis specialist. I saw her and she prescribed specialized hearing aids, but after miscommunication with insurance, this was left unfinished. Finally, a few months ago, another doctor recommended I see an audiologist…again someone specializing in TBI/ADHD/autism/sensory procession disorder. She is another practitioner who understands the situation and is slowly treating me to get the neurological systems of the brain/ears/eyes back together.
9. Functional Neurology – I went to a functional neurology clinic before doing the treatments recommended above. I went because they admitted me without delay and I was desperate. Since it is a little-known specialty, they don’t take insurance in the US – and that’s partly why they were able to see me quickly. They helped me with balance and vision, but I should have done other therapies first. In my opinion, functional neurology should be something you do after trying other options. One very good thing that happened because of my time with them is that they recommended me the EMDR psychologist.

Other modalities I have tried:

1. Red light therapy (photobiomodulation): I used a “happy helmet”, as the doctor called it, for the first time at the functional neurology clinic. During the week I spent at their clinic, when my brain was extremely tired and needed a “pep”, I was given the Vielight Gamma helmet or I laid on a bed of red lights. I don’t quite understand how red light therapy works, but after using the Gamma helmet, I felt my personality come back “online” for the first time since the accident – even if only temporarily. We decided to buy a Vielight Duo (Gamma and Alpha waves) for brain recovery at home. I used it 2/3 times a week before. Now maybe 1-2 times a month. Since the Vielight website says the helmet is for Alzheimer’s, PTSD, etc. relief, I’m keeping it for life.
2. Craniosacral therapy – Worth it with ONLY with someone who also understands concussion/TBI. Otherwise, I found it pretty useless.
3. Hyperbaric chamber – They say it helps a lot with oxygen uptake. Sometimes I came out feeling better. Other times the same.
4. Acupuncture – I don’t like needles, but I understand that it sometimes helps calm the nervous system.
5. Massage – worth it to feel good once in a while.
6. Traditional Chinese medicine – gave me hope and some energy, but it has to be supplemental.
7. Speech therapy – told me I didn’t need it. I disagree. My memory was very slow, especially working memory (remembering things from 30 seconds ago when the brain has moved on to focus on something else). Additionally, I was often mispronouncing words accidentally, using similar but different consonants. And finally, I was frustratingly slow at remembering names. I always have been, but it literally took me 3 months to consistenly say the right name between two players on my soccer team!