One of the most frustrating aspects of having a concussion was navigating the medical system afterwards to get the right help for my recovery.
Usually, when you have a medical problem, you go to the doctor and they diagnose you and give you something for that problem or refer you to a consultant. However, this was not the case initially after my concussion. I seemed to have entered a never-ending labyrinth of twists and turns and dead ends, all made extra challenging because of my head injury and struggling to articulate myself!
It seems a common experience is that people are left wondering what to do next without clear guidance. It seems that although GPs have a broad training on medical conditions, there are areas where they don’t have specific in-depth knowledge, and concussion seems to be one of them. I do think this is changing, though, as concussion continues to become a higher profile concern, but there is still a long way to go.
Over time, thankfully, I was able to find the right help. I want to share below some ways to communicate better with medical professionals to make your path to recovery smoother.
1) Learn as much as you can about concussions and their symptoms.
It may be difficult for you to use a screen and search online, so do ask someone to help you with this if possible. The UK charity, Headway – www.headway.org.uk – has some excellent resources, including a leaflet specifically to give to your doctor on concussion and post-concussion syndrome. There are other national brain injury and concussion organisations in different regions and countries, so search online for one near you. A quick Google search on ‘concussion’ and’ post-concussion syndrome’ will also show you plenty of books, blogs and websites on the topic. You can print off or make notes on anything relevant to you and show it to and discuss it with your doctor at your next appointment.
2) Make sure you have an MRI or a CT scan, especially if you weren’t given one in A&E when you first had your injury.
Many people don’t go to the hospital after a head injury and only go to their doctor sometime later when they notice their symptoms (as in my case). A scan shows whether or not there is any bleeding or swelling on the brain or if there’s a fracture to the skull. If your scan doesn’t show any visible damage, then it doesn't mean you don't have a concussion, as the damage can be undetectable on standard scans. Functional MRI (fMRI) scans may be more sensitive at detecting changes caused by concussion, but they are less widely available and usually only privately at the time of writing. Having a scan will give you peace of mind and identify whether there’s anything that needs immediate attention. But you may also feel frustrated that nothing shows up on the scan even though you have symptoms.
3) You can ask your doctor for various blood tests that might indicate any problems that the head injury has caused.
My GP sent me for some blood tests, which came back normal apart from Vitamin D, which was low. I later bought a home blood sugar test and found that my blood sugar levels were slightly high. Other tests that might be relevant to you involve checking your hormone levels as research has shown that, for some people, a head injury can affect these. For example, the pituitary gland in the brain may have become damaged, affecting your hormone levels. If you are at all concerned about your symptoms not resolving, then this could be an avenue to pursue, so do mention this to your doctor and see if you can be referred to an endocrinologist, preferably one with experience of brain injuries.
4) It’s quite common for people with ongoing concussion symptoms to be diagnosed with anxiety and/or depression.
A doctor may diagnose this as part of the concussion, or they may misdiagnose a person with these conditions rather than acknowledging it’s a result of the head injury. If this is the case, my advice would be to take any help that’s offered. It may be the only thing available to you at that time. As long as the treatment isn’t doing you any harm or isn’t completely unrelated to your condition, then at worst, it will do nothing, and at best, it will help you. Do be clear all the time, though, that you believe whatever the condition is to be caused by and/or related to your head injury, rather than being something separate. If you have further appointments, you may find that, even if your medical provider doesn’t initially seem to know much about concussions, they may develop a greater understanding of what you are dealing with overtime.
5) Do take a friend or family member along with you to your medical appointments.
This is for various reasons. Firstly, it may not be safe for you to drive therefore it is essential that somebody else takes you. Secondly, you may be having trouble speaking and articulating what you want to say, so the other person can help you. Thirdly, you may have memory problems that make it difficult to respond to questions. Fourthly, the person may have insights into your symptoms and behaviour that would be helpful for the practitioner to know. Finally, having a second person along to confirm what you’re saying is accurate may prompt the provider to pay greater attention to your issues.
6) Track your symptoms.
Keep a record of what symptoms you have and whether they are worse at different times of the day or in certain environments and situations. You will learn what your triggers are. Share this information with your healthcare providers. This will give you, and them clues to your condition and help to better plan for your recovery.
7) Have everything written down.
Write down your symptoms and any questions you have so that you don't forget them. Try to be as clear as possible when explaining things to your doctor. Tell them of any treatments you’ve had or are having and what has worked or hasn’t worked. Also, tell them of anything you think may be relevant from your past medical history, for example, whether you’ve had any previous head injuries.
8) Identify about five of your worst and most persistent symptoms
While it’s helpful to write a list of all your symptoms, it may be a long list, and it may be a bit much to try and discuss all of them at once with your doctor. I took an A4 sheet of paper with about 40 symptoms to my neurologist. He looked a bit shocked when I showed it to him. So, identify about five of your worst and most persistent symptoms and discuss these first. This helps to give both you and your doctor clarity and gives you a better idea of the first few steps you should take on your recovery journey. You may find that other symptoms resolve or reduce as you are treated for some symptoms. This happened to me when I had vestibular treatment for my balance problems – it also helped with my vision and my ability to pay attention to things for longer.
9) Be prepared to see many different consultants or specialists if you have a number of persistent symptoms.
Concussions can have wide-reaching effects since the brain controls many aspects of our functioning and lives. Don’t be surprised if you have to see separate people for vision problems, balance issues, speech problems, movement challenges, migraines, chronic pain, psychological issues and so on. If this is the case for you, then you’ll need to keep track of and pace yourself with your appointments and rehabilitation; otherwise, it can seem overwhelming at times.
10) Do consider seeing practitioners of alternative and holistic treatments and therapies, for example, an osteopath, a nutritionist, an acupuncturist or a yoga or qi gong teacher.
These types of people can be knowledgeable about healthy living and general lifestyle and stress management techniques, which can help you manage and possibly even get rid of some of your symptoms. These therapies are best done alongside the care of your primary health provider. Keep them informed of any holistic treatments you’re having, and they may also have some suggestions of things you could try.
11) Be persistent, keep going and keep searching for answers.
There can be times when it all seems too hard and too much. Trust that you know your symptoms and that what you’re experiencing is real. If you don’t seem to be making progress under your doctor’s care, then it may be time to find a different doctor. Ideally, your doctor should be understanding and supportive and willing to look at different solutions for you.
I hope you find this advice helpful. My hope is that you’ll find and be able to communicate well with a sympathetic and knowledgeable doctor and team of medical professionals who can help you with your rehabilitation needs so you can get better as quickly as possible.