Several in the past have commented on problems associated with communicating with friends associates, and family about the issues you or your loved one is experiences with their AVM. Comments like “He seems normal and OK on the outside, so he must be fine” fall into this area.
Also, several of us have children with AVMs or similar issues, and as a parent of such a child, we felt it was important for our son, who was in middle school at the time his seizure began, to be able to “own” his medical issue. We also wanted to work with him so that he could properly explain and communicate with peers and teachers when they noticed or commented about his condition.
So I offer these suggestions:
For you as an adult, I suggest you write a couple of paragraphs that you can print off one a 5x7 sized card and hand to people, instead of or in addition to trying to explain an AVM to them. Here’s some sample words that you can tailor to your own situation:
I have a condition called an AVM, which stands for ArterioVenous Malformation. An AVM is a congenital disorder (one present at birth) of blood vessels in the brain, brainstem, or spinal cord that is characterized by a complex, tangled web of abnormal arteries and veins connected by one or more fistulas (abnormal communications).
The AVM has no capillary bed of its own and the fistulas in the AVM permit high-speed, high-flow shunting of blood from the arterial to the venous side of the circulation. This shunting causes low blood pressure (hypotension) in the arterial vessels feeding the AVM and neighboring areas of the brain that they normally supply with blood. (I pulled this definition from the web—feel free to use a different one)
I might look ok on the outside, but what I have is a traumatic brain injury, just as serious as if I’d been in bad car wreck or a gunshot victim.
Here are the areas that cause me distress currently, and the symptoms that I can present, as well as things you can do for me if you see one of these occurring in me:
Seizures—Not all seizures are the gran mal type seen on TV. Mine are ______________. If I have one, it generally lasts about _______ minutes, and I will be disoriented for _______ more minutes usually. Normal precautions for seizures such as mine are to protect my head and to make sure I am not in danger in other ways (falling in traffic, etc). You can call 911. Most likely, I will be conscious when they arrive and I can deal with them at the time.
Cognitive issues—I cannot process multiple conversations now, and loud background noise is painful to me (or whatever the issues are).
Things that you can do to help me cope are _________.
I will try to answer any questions you might have. I value your friendship and want you to know that I continually work to regain the “old me”. It is a long process, but I will endure.
For your child, I suggest you provide a detailed letter such as above to each of the child’s teachers and nurse (provide the nurse with a list of the meds he takes). I also suggest a shorter, simpler card that is age appropriate he can share with buddies and their parents. It could say:
I have a brain injury called an AVM. It stands for ArterioVenous Malformation. It is not contagious and I’ve had it all my life. It only presented recently to cause me problems. I can still run and play, but I do have issues with ___________.
I hope we can be friends.
I offer this to all of you in the hopes that it makes your journey easier.
Merry Christmas, from me.