I recently asked a question in my VAD Support Group…
What do you think people should know about VAD?
I got some really great answers. It is one thing to have personally gone through everything that I have with my VAD and strokes, but it is quite another to hear from others what their VAD was like, how it happened, what the result was, etc. Since I have never actually met anyone in person who has experienced VAD(as is the case with most of us), it is so important to be able to have these support groups to connect us in some way.
Here are some of the answers I received (These are not direct quotes; I may have changed wording or input some of my own thoughts in the answers as some were conversational):
VAD is the leading cause of stroke in young people, but the symptoms are different than what people traditionally associate with a stroke.
This was very true for me. I had neck pain, migraines, dizzy-spells, vertigo, ocular migraines and vision problems, nausea, fatigue, weakness, hot face, brain fog and others. Much different than the typical FAST (Face drooping, Arm weakness, Speech difficulties, Time) that we all learn…I much prefer the BEFAST model that includes Balance and Eye problems, however, even with this model, a VAD and/or stroke can be overlooked…ESPECIALLY in young people.
It can strike at any age or gender. The aftershocks last a long time. We may look fine on the outside, but are suffering on the inside. Not everyone has a stroke with VAD, but if you do have one stroke, you can have more in the days or weeks after the first.
People who suffer from VAD are often not taken seriously by their doctors, largely due to their age. VAD is most common in young, active men and women. Looking young and healthy is our downfall in getting serious help from physicians for diagnosis and treatment.
In a lot of cases, VAD can be caused by an underlying connective tissue disorder (such as FMD-Fibromuscular Dysplasia). With FMD, you have weakened arteries that can lead to dissections, aneurysms, etc. and you’ll need to avoid vasoconstrictors (Advil, Sudafed, Caffeine, etc.).
You’ll also need to avoid simple things such as lifting, increased heart rate and blood pressure.
The emotional toll it takes in addition to the physical pain and discomfort that (can) last for months and even years. The effects are so often unseen due to some of the factors listed above.
The PTSD of having another dissection can be horrifying and may dictate how you live your life. Most of us are told to never do things we love for the entirety of our lives: lifting weights, running, horseback riding, roller coasters, rafting on a river, bumpy boat rides, getting our hair washed at the salon, and even massage are things we have been told to avoid. Every pain or headache can spark debilitating PTSD.
I would have never gone to the chiropractor had I known. I had no idea a salon chair could be so dangerous.
It is not well documented, but it is largely understood in my support groups that neck manipulation by a chiropractor is the #1 leading cause of Artery Dissection in the neck. I posted an article about this in a recent blog post (Artery Dissection and Chiropractors). Another cause can be neck self-manipulation such as popping your neck or turning your head abruptly. Even getting your hair washed in the sink at your salon can cause a VAD. I am fortunate enough in my small town to have a hair salon that uses sinks to support the head rather than the neck(these places are hard to find!). Here is the link if you are local… https://www.blondiesthebeautyshoparcata.com/
Lack of information and help when you are discharged from the hospital!
This one spoke to me. When I left the ICU after 4 days in the hospital, I was not helped out. I was given directions to where to find the door of the hospital and pointed in the location of the pharmacy 2 blocks away to go pick up my blood thinners. I had just had 5 strokes, was dizzy and super confused. I don’t know why they didn’t lead me out to the area where my dad was (supposed to be) waiting. They even gave my dad the wrong address, so after crying on the phone and to the hospital security guard, we finally figured it out. The hospital is lucky I didn’t pass out or have another stroke from the overexertion and stress…I hadn’t walked for more than 2 minutes in the days leading up to my release. There is also not a lot doctors will do to help once released, unfortunately. We have very little information to go off of; these support groups are where most of us get helpful information.
It is not in our head; it is not just anxiety. It’s real. There is pain involved. We may look fine, but we suffer. Effects can come and go. When we get sick, it’s harder to recover.
All. Of. This!!!!
…And last, but not least…
We can recover and come back Stronger!
Hell yes! This statement right here is why I do what I do. I want all my fellow survivors to know that you can come back and thrive! It will most certainly look different than the life you had envisioned for yourself, but it can be even better, more satisfying and fulfilling.