No, not Darth Vader, but LVADers and RVADers. This is an growing epidemic of “stroke” among young people, striking teenagers and 40 year old fit and trim individuals alike. One Facebook group, Vertebral Arterial Support Group has 2,200 members and is growing at the rate of nearly 30 per month. Another group, Wallenburg or Lateral Medullary Syndrome Group, which covers one of the more painful, lasting effects of VAD currently has just over 350 members.
So what is VAD? VAD stands for Vertebral Arterial Dissection. Which means, “leading into the brain and brainstem, an Artery (not a Vein), has been (On the inside wall of the arterial) split open”. This causes an “occlusion”, BAD thing, a stoppage of flow to the brain.
Mechanically, what happens is that the VAD occurs as an injury (TBI, Traumatic brain injury), often without the person knowing it. A sudden twisting of the neck, and the inner lining of the artery tears away forming a pocket, behind which blood will seep through and clot.
Sometimes attributed to side impact crashes, whiplash, Neck Adjustment, Dancing and floor sports where the technique of “spotting” is used. (Spotting in dance is when the dancer maintains their head facing one direction, then turns their body as far as possible without moving their head, and finally rapidly whips their head 360 to original position). Officially on medical charts, my LVAD (Left Arterial Vertebral Dissection) cause was listed as “Ballroom Dancing”.
The first symptom that an individual often reports is serious migraine-type headaches for weeks or months, even though the individual is not prone to headaches.
The second symptom, which can occur weeks or months afterwards, is that lining gives way in the artery and a rush of lining debris, clotted blood and blood rush into the medulla and brain. This is felt as a shock of dizziness and uneasiness.
In a fraction of second, the individual is suffering a complete stroke, the final symptom of the VAD.
For me, I was ballroom dancing when the stroke occurred. I have no idea what I was doing when the original injury occurred. The good part was that my headaches finally ended. But my long journey from victim to encouraging survivor was just beginning. Typical of strokes was the loss of walking, speech, eye coordination, balance. Atypical was the amount of awareness and cognitive abilities I maintained. I was rattled, but not confused. I lost the mental ability to add two numbers together, but not to understand the significance of numbers on a spreadsheet.
I was also surprised how quickly I progressed, but for VADers, this is also is not unusual. With good physical therapy, I was walking with a cane, communicating clearly, and even able to drive within 35 days.
All of these are normal progressions for the VADers. Later, unfortunately, I was in the 40% that does not recover fully. After 1 and ½ years, a series of setbacks and minor strokes reversed many of my advances, removing my ability to drive or work, and put me permanently walking with a cane.
I will discuss this in my next segment: Lateral Medullary Syndrome.
Migraines, like you never had them before.
I am not a Doctor. I am an Observer, a listener, and I share what I have gathered (without sharing confidences)
I have developed a unique view to depression, including my own depression, including that depression which leads to the handling of the artifacts of suicide, and again, including that which I ‘played’ with myself.
Depression, as a Neurological component IS a direct result of a dangerous CHEMICAL imbalance in the individual caused by partial or complete damage to those organs in the brain responsible to create and release those hormones and chemicals. They cannot produced elsewhere in the brain or body and supplemental pharmaceuticals are required to supplement the lost activities performs by those organs.
But Depression also has an emotional aspect that I DO NOT believe that counseling the depression will provide relief.
This is because it is my observation that depression can be a symptom of LOSS (among other things). And the survivor of Neurological Illness and Injury has a long list of Losses to think about.
My Top 5 “Losses”
1. Dignity - often first lost when the individual finds themselves being “cared for”.
2. Independence - often first lost by revoked or limited driving privileges, or being restricted to a wheel chair, etc.
3. Role - Lost when the individual is removed from being the man or woman of the house, and becomes watches helplessly as others do their work
4. Desirability - occurs as you are encouraged just to watch rather than engage in social activities, and becomes more evident when those who care for you need a vacation from you
5. Memory - Memory may or may not be damaged heavily in a typical injury or illness.
A Few practical solutions.
1. “Care For” must be replaced with “Cared About”. I make this distinction. Cared for means that someone smiles, gives me pills, makes a meal, etc. Cares about means that someone holds my hold, listens to me, reads or jokes. Family members chose love over worry.
2. The loss of Independence, which includes physical activities of independence, now need to be replaced with TRUST.
3. Roles lost need to be replaced with Roles given. What can I, the survivor, be given to be responsible for?
4. Desirability – For family members and survivors, anytime that caring and being cared for becomes a ‘job’, a serious inquiry needs to made into home health care aides, or just talking about reducing tensions and expectations.
5. Memories. Have several “old photographs” parties where the family discusses the photos and the events in each photo.
I get this question answered every morning, and it is perhaps the most difficult to answer, if not the most profound question of the morning. On one hand, I know that if I flippantly respond “fine”, “well”, then the other person expects me to act as if I feel well, when that is farthest from the truth. On the other hand, I know that NO ONE likes a complainer, and if I give too much detail, or take too much time describing how I really feel, it is the quickest way to shove people away from me.
Having been a pastor and counselor before my personal brain injury, has given me a little insight on how to govern myself and in the process, I believe that I have stumbled on two successful analogies to answer the question “How are you feeling today”, honestly and accurately.
First, I have found, so far, two primary types of overwhelming “Not doing well”, they are.
Then I say “Now imagine yourself when you have a 102 degree fever, how would you feel; now 104 degree fever, now 106, now 108 fevers?”
After asking them to have these analogies fixed in their in heads, I tell them, (This is my actual personal response) “My normal pain/dizziness NEVER drops below 102, that is what I cope with 24/7. Right now, I am about xxx degrees, I don’t have a real fever, that’s just how you would feel if you were me.
That is the ‘crushing weight’ of energy loss that we go through.
More Squirrel-ly Than Ever,
More Squirrel-ly Than Ever,
Pictured above is Daryl Hayott and Susan Taboada, APRN. Daryl feels very fortunate to have been able to work with Mrs. Taboada after his stroke recovery.
Neurology < Accepting new patients for this specialty
Vascular Neurology < Accepting new patients for this specialty