A guide to doctor’s appointments

 

While you navigate life after brain injury doctors’ appointments are going to be a big part of your life. Here’s our guide to streamlining your doctors appointments and making the most of your time.

1) Package of your information

  • symptoms – if possible add in examples as you notice them in your daily life (are there certain tasks that are causing headaches? are you dizzy only when getting out of bed? etc) If you find yourself noticing changes in your abilities and you aren’t sure if they are related please check out the Terminology blog posts I’ve included in this website to see some examples.
  • current sleep patterns and if you feel rested when you wake up
  • current schedule or activities of daily living (ADL)
  • medications and nutritional supplements that you are taking
  • a list of your thoughts for items 2 and 3 listed below

Creating a list of all of these is good – if you can compare to premorbidity it is better. This is where it is excellent to involve loved ones or your co-workers if you’ve been at work and feel comfortable asking them for help. Premorbidity is your status prior to the brain injury.

For example: You may say you have headaches 3 times a week. If you had headaches 3 times a week before the injury it may not be related. If the headache is sharper, or in a different location it may be a symptom but your doctor needs to rely on you to distinguish that.

Similarly if you can’t make coffee without the cup overflowing but pre injury you worked the 6am busy shift at Tim Hortons without breaking a sweat that would be very helpful for your doctor to know. That difference between now and premorbidity allows doctors to judge what your symptoms are and how severe they are/if they get better with time and rest.

2) Referrals and paperwork

Doctors are busy and a lot of them don’t specialize in brain injuries. Some don’t even stay up to date with the research. If you know of a rehab program or a specialist you want to be referred to (check out my Terminology blog posts for some examples) come in prepared and ask your doctor for the referral. Often you will get it. If not your doctor should be able to explain why they don’t feel it is a good fit or what they would recommend instead.

Similarly if you need paperwork filled out for disability, lawyers, police etc come prepared with the paperwork or a written outline of what is needed. Make it very clear so that your doctor doesn’t have to struggle or play phone tag with your lawyer to get you the information you need.

3) Requests for care

As much as you may not want to admit it things have changed. It’s okay asking your doctor to change how they care for you. They may have specific hours that the waiting room is quieter and they can see you then. There may be something specific you need to ask reception for when booking your appointment so that paperwork can be filled out during your appointment. Ask what you should do if you notice things are getting worse and you can not work. Make sure you have extra business cards to give to any other doctors you see so that they can send all reports to your doctor (and with business cards you aren’t responsible for remembering their fax number!).

It’s also worth asking your doctor to write down their recommendations for you so that you can reference them later.

4) Find an appointment buddy

Maybe you used to be able to handle everything on your own. It’s entirely acceptable that post brain injury you may need more help. One of the crucial events I would ask you to accept help with would be doctors appointments.

Beyond the stress that driving to an appointment and then needing to sit in a busy waiting room these appointments are going to be extremely important in getting you referrals and resources to move forward in your care. Even if you are able to answer all your doctor’s questions if they make a decision you don’t agree with you may have no more energy to fight. Recruit someone to help doctors appointments right away and ask them to get educated on brain injuries.

If you don’t have family or friends that are able to attend appointments or are emotionally capable of staying on task at the appointments please contact the brain injury association nearest you (http://biac-aclc.ca) and often they can send a representative with you to appointments. They are not to give you medical counsel but are able to take notes, do the driving, ask questions and make sure any paperwork gets completed.

Your doctor may require that you sign a release of information document in order to talk to these individuals.

Terminology Lesson: Symptoms

I remember being acutely unaware of post traumatic brain injury symptoms during Jason’s few months. Literally months where I wasn’t clear on what I was looking at. Doctors and friends would often tell me that what I thought were symptoms were actually my unfulfilled dreams of being a controlling wife.

Okay, they never used those words, more like “Husbands are just like that”. Because getting married would obviously change my husband more than his traumatic brain injury.

So here’s my list of symptoms that I wish I knew then. This may not be a complete list, but just the symptoms that were more relevant to Jason’s injuries. They are not listed in any order specifically.

  • Headaches, pressure in his head
  • Dizziness
  • Choking on some foods -also diagnosed as dysphagia
  • Inattention – when stimulus overwhelmed him physical symptoms (such as the choking) would increase
  • Sequencing issues – trouble deciding what order to do tasks at work or while cooking dinner etc.
  • Initiation – failure to start tasks without being asked/ordered
  • Due to initiation and sequencing issues needing to stay on a strict schedule
  • Cognitive fatigue
  • Taking longer than pre TBI to complete tasks
  • Preservation -the repeating of one activity
  • Fixating on certain tasks or activity
  • Concentration issues
  • Self awareness impairments (which makes monitoring these symptoms the duty of the spouse or support person)
  • Emotionally labile – some breakdowns, crying, anger, especially when cognitive fatigue kicks in
  • Difficulty making decisions
  • Difficulty seeing the outcomes of his decisions
  • Lying
  • Time management issues
  • Memory loss
  • Mild aphasia. Aphasia has a variety of sub categories as listed by the National Aphasia Association http://www.aphasia.org/aphasia-definitions/
  • Difficulty with change of plans
  • Lateral thinking limitations
  • Interrupting during conversations

Post Injury Protocol

Gone are the days of waking up individuals with concussions every hour or two. You should never hear “it’s just a concussion” from another doctor.  Athletics have turned brain injuries into a newsworthy subject. Research has turned it into a serious discussion.

And so what is recommended for those first few hours or days post brain injury?

1) Get checked out by a doctor. Make sure you know the extent of the damage – was there bleeding in the brain? bruising? Doctors will often assess your reflexes and memory and will be able to document any deficits.

2) Complete rest. Lie in a dark room without a TV or radio on (even listening can prevent you from having cognitive rest) and sleep. Sleep. This can seem painful but often having to deal with light or the headaches that come from trying to focus can be far more painful.  Current research indicates that this stage should last 3-5 days but Jason needed to stay in bed for about 8 days before he could handle some reading in a dim room. I would suggest (without any medical degree) that this stage should last as long as you need, without any effort to rush through it. I’ve talked to some clients who have lived in their basements for 6 months, craving the dark and quiet, before they were able to start integrating with family again. There is no hard and fast timeline.

3) Mild to moderate activity. By activity I mean reading. Or watching TV. Or having a conversation. Some doctors call it a subthreshold cognitive level. 15-20 minutes of one of those activities and if your symptoms don’t return or increase you can assume that that level of activity is okay. This article focuses on children but details this process with amazing detail and can be applied to adults.

Terminology Lesson

Who the heck am I speaking with? (in alphabetical order)

Ear, Nose and Throat Doctor – If you have headaches that are similar to sinus aches or tinnitus you may be referred to an ENT doctor to assess if anything other than the brain injury is contributing.

Family physician – In Canada family physicians are governed by their provincial college such as the College of Physicians and Surgeons of Ontario (http://www.cpso.on.ca/About-Us). In our experience this will be the person that makes the majority of your referrals and fills out paperwork for insurance, lawyers etc. It is essential that you trust your family physician and that they have some understanding of the new research out about brain injuries. In another post I will discuss our experience with changing doctors in Ontario which may be necessary if your doctor is unwilling to work with you.

Neurologist – A doctor that specializes in neurological conditions but does not do surgical procedures. They can work with a wide variety of conditions such as dystonia, multiple sclerosis and brain injuries.Most often your family physician will need to refer you to a neurologist as they are not a front line healthcare professional.

Neuropsychologist– A psychologist that focuses on cognitive skills such as memory, planning, comprehension. From our understanding they should be involved in any situation where the TBI survivor wants to return to work as they will be able to give a full write up about cognitive difficulties.

Neuropsychometrist – Works closely with the neuropsychologist and administers the testing for cognitive skills.

Neuropsychiatrist – A psychiatrist with a specialty in behaviour and mood that can analyze their effects on the neurological conditions. Because they are doctors they are able to prescribe medications if they are warranted.

Neurosurgeon – This is a surgeon that specializes in surgery for the brain or spine. With regards to brain injuries they may be called into your case if you have areas of bleeding in the brain. In Jason’s case the neurosurgeon simply monitored his bleeds and provided a follow up. In other cases with more severe bleeds they would operate. Once the physical bleed is resolved it is common to be referred to another health professional.

Nurses – Nurses in a doctor’s office or hospital will often be responsible for your day to day care, checking symptoms and vitals. In some situation a nurse may be sent to visit you at home to change bandages, check symptoms or assist with any medical concerns. Home visits will often be organized by groups such as the Common Association for Community Care (http://www.cacc-acssc.com/)

Nurse Practitioner – Nurse practitioners are nurses that have done extended training to offer more in depth care to their patients. They are able to write some prescriptions as well as make referrals to physicians and specialists in Ontario. (http://npao.org/resources/find-a-nurse-practitioner/#.VYv_ZflViko)

Occupational Therapist- In Canada they are a federally registered health profession (https://www.caot.ca/) . Occupational therapists help return to your lifestyle – they can offer solutions to make your house safer (handrails, canes or braces etc), accommodations at work (modified work schedule recommendations, ergonomic assessment) and information on how to regain your life (sleep, exercise and balance guidance). Some specialize in cognitive skills which can be very helpful post traumatic brain injury.

Personal support worker (PSW) – These individuals may come into your home to assist with daily activities and your personal hygiene as well as to provide comfort and company post TBI. In Canada they are often found through organizations like CACC.

Physiatrist – Often described as a rehab doctor, physiatrists work at restoring function to those that are injured, In our experience the physiatrist did Jason’s rehab intake assessment and then coordinated his therapies and rehab experience.

Physiotherapist – Physiotherapists help individuals regain range of motion, balance and mobility. They can be seen without a referral and some specialize in vestibular physiotherapy which can be helpful post TBI. http://www.collegept.org/Home

Psychiatrist – Physicians that can diagnose and treat mental health conditions.

Psychologist – Professionals that deal with behaviour and coping skills but are not physicians and therefore cannot prescribe medications.

Radiologist – These are the people that read and interpret your CT and MRI results. They write the reports that get sent to your doctor.

Social worker – Often encountered in a rehab setting the social worker may help the family as a whole discuss the changes post TBI and learn how to cope. They may also assist with discharge plans and finding community referrals.

Speech and Language Pathologist -These individuals often work in rehab settings and assess those with traumatic brain injuries for language problems such as aphasia (loss of words) or speech problems with enunciation etc. They can also help with swallowing difficulties that may occur post TBI.