For years, I tried to describe my symptoms to doctors (including neurologists) who were not familiar with brain injury, and believe me, it was frustrating. As my circle of friends in the brain injury world has grown, I have been both relieved that I am not the only one and appalled at some of the things doctors have told my friends.
Things like blatantly saying that their symptoms were impossible and suggesting that they were making them up. Or saying that they are just depressed or anxious and reading too much into their symptoms.
I've heard of doctors stating that concussion symptoms last only 6 months and anything after that must be caused by something else like fibromyalgia. Or even telling their patients that anything that hasn’t healed on it’s own in a year is likely permanent damage.
The list goes on and on, and has me wondering if these doctors ever studied the brain at all in their many years of schooling. My doctors had been somewhat understanding compared to some of the horror stories that I have heard from others.
It is tempting to step on my soapbox about how these doctors are one of the main reasons TBI patients feel hopeless and alone, but I will save that for another time. As you can imagine, there was such a relief that I felt when I finally found doctors who understood what I was going through on a daily basis and could even tell me why. They did specific testing that told us what was going on in my brain to cause these debilitating symptoms and had strategies on how to help me get better and improve my quality of life.
Here are some things I have learned through the process.
1.Go with your gut. You do not have to see the first doctor that you are referred to. It’s amazing how we will shop around for the best pest control service, repair man, or hairstylist but when it comes to our own health, we just think that the first doctor we are told to go see is the one we have to stick with. This is not true my friends. You are not just a patient, you are a paying customer and you deserve to get quality service. This might mean extra paperwork with your insurance company or driving a bit further to your appts, but believe me. It’s worth it.
2. Put together a team of professionals that are willing to work together to help you. No doctor knows it all, and the best ones will understand and acknowledge that. In fact, beware of doctors that make it seem like they know it all and they will be a “one stop shop” for your total treatment. These types of Doctors may feel threatened that you are seeing someone else for the same condition. Wisdom is found in a multitude of counselors, and in this case, healthcare professionals. Listen to them all intently and use your gut to make your own decisions about your next steps based on the information you have learned from all of them. Just an FYI: This doesn’t mean that when the doctor tells you something you don’t want to hear you find another one that gives you an easier option. Brain rehabilitation takes hard work and dedication. There is no magical pill or easy fix.
3. Understand that healthcare is a business. Whether you are seeing your primary care MD for a physical, going in for major surgery, or getting an adjustment from a chiropractor. Now I'm not saying that all doctors care about is money, but it important to understand that some of the advice they give can be influenced by how many patients they need to see on a daily basis, the pharmaceutical and supplements companies they are in business with and the fact that their health service to you is what is also putting food on the table for their families.
The following are common titles and keywords that may help you find the types of Doctors and other professionals who have helped me and so many other brain warriors. I will be going more into detail about each of these types of care providers in future posts as the title does not mean they are necessarily the best for your team.
But for now, here are some keywords that you might want to type into a search engine.
Functional or Chiropractic Neurology (DACNB) also try www.acnb.org
Integrative or Functional Medicine
Neuro Optometry or Behavioral Optometry or Rehabilitative Optometry (also try COVD.org to find providers in your area)
Neurofeedback (also try BCIA.org to find certified providers in your area)
Sound or Auditory Therapy
Vestibular Physical Therapy
Upper Cervical Chiropractic or NUCCA (also try NUCCA.org to find providers in your area)
Cranial Sacral Therapy
Transcranial Magnetic Stimulation
Speech Language Pathology and Occupational Therapy (Important to make sure they specialize in brain injury)
Warning: Based on my own personal experience as well as feedback from peers, neurologists and neuropsychologists can either be helpful or detrimental to your healing journey. There is a huge difference between the average neurologist or neuropsychologist and one who is actually certified in brain injury or at least familiar with it. My advice is to do some extra research on the front end, and find out if they are familiar with concussions, brain injury, and post concussion syndrome.
And remember... No matter what type of doctor you are seeing, If you go in for your first appointment and feel that your symptoms are not taken seriously or understood completely, continue your search for a more educated professional who understands.
They do exist, I promise!