Chances of brain stem stroke recovery were considered to be poor. We have come a long way. We may be able to improve the outcomes.
More importantly, we remember that, just as in the early 1990's when successfully treating a stroke victim in a time when it was thought a waste of time, we know today better outcomes are possible.
Before telling you my story of treating a woman who recovered from a massive stroke that left her in a vegetative state, consider what science has proved. Consider the possibilities.
There are several reasons for thinking the outcomes can be improved.
1) Brain nerve pathways can regenerate
2) Brain cells can repair and possibly grow anew (called neurogenesis)
3) We can promote the above processes with hydration, electrolytes and diet
4) We can provide mental stimulation to promote the above processes
5) Providing precursors that help in the production of Glutathione helps with all of the above
Historically, the thinking of 'no hope' was still alive in the mid 1970's.
By the mid 1990's recovery of consciousness after a non-traumatic brain injury (stroke) was still considered unlikely. Of the 169 patients in a persistent vegetative state in one survey from 1994, 11% regained consciousness in three months, 2 more within 6 months and one final recovery within the year. That was a total of 15% or 25 who recovered to various degrees according to the New England Journal of Medicine titled Medical Aspects of the Persistent Vegetative State
In nursing school, in the early 1990's, we were still taught that once someone enters a vegetative state, there is little hope. The sensational recoveries, we were told, were urban legends, mere myths. Yet at the same time, the topic was hotly debated as an ethical consideration.
By the mid 1990's the research started showing positive results of those who came out of a vegetative state. This was shining lights on the possibility of hope for brain stem stroke recovery. I know this because of personally treating one such patient. She was admitted to my floor with a massive stoke and was in a vegetative state.
A vegetative state is a condition lasting a minimum of three months. It is different than a coma which lacks both awareness and being awake. People in a vegetative state may have been in a coma and have awoken.
The difference, they have not regained awareness. Their eyelids may open occasionally and they may have a sleep-wake cycle. However, they lack cognitive function of consciousness. The chances of regaining consciousness diminish with every passing day in the vegetative state.
The persistent vegetative state (PVS) syndrome was first described in 1940 by Ernst Kretschmer who at the time called it apallic syndrome. Then in 1972 it was called persistent vegetative state by the Scottish spinal surgeon Bryan Jennett and American neurologist Fred Plum.
Initially it was based on modern medicines increased capacities to keep patients' bodies alive.
This state became a legal grey area which led advocates on both sides of the issue. On one side, that these patients should be allowed to die. On the other side, if recovery is at all possible, care should continue. Because some diagnosed as PVS and have improved makes the case for those saying recovery is not possible.
Rather than arguing autonomy, their quality of life, use of resources, the wishes of person and those of the family, we are asking another question.
What if we could save more people.
What if we could save just one more person, your loved one.
In the early 1990's, as a new LPN in a hospital, my first assignment was two people. There is not a lot to do with just two people so there was plenty of time.
One patient, Edith (not her real name) was admitted over the weekend with a massive stroke. This is her story.
When you are a new nurse, you only get two patients assigned to you. One of my two patients was an elderly woman who had a massive stroke. While she was able to breath on her own, she had no awareness. There was no response to words or even pain. Most of us will move when we feel pain. She had no reaction.
My thinking, having just seen Robin Williams in Awakening, was different than everyone on the floor was saying. One by one, my RN colleagues and trainers were saying that I was wasting my time. I reminded them that I had nothing but time since my assignment was only 2 patients.
While in nursing school we were taught that people in persistent vegetative states virtually never recovered. But we were also taught that we cannot know what goes on inside the mind of a patient when they are in a vegetative state.
With this info, I proceeded to try to connect with Edith, because of wanting an answer to that question, "What if...?"
The wasted time everyone spoke about, it was spent talking to Edith. It was providing range of motion, moving all of her limbs while explaining what I was doing.
Every day on entering the room, greeting her, I said "Hi, my name is Jonathan, I'm your nurse." I went on further to say things like."If you can hear me, move your hand or finger" or I might have asked her to blink. Speaking to her as if she could hear and process every word, my goal was to let her know that we were going to help her get out.
What if she was trapped trying to get out? What if she could hear everything but could not respond. What if she was in there but trapped? How long would she be able to last before she gave up? How long would any of us be able to last before we gave up.
Whether my actions personally helped her or not, we may never know.
What we do know, on Wednesday of that week, she moved her right great toe. It moved in directions that I didn't know you could move it. Mind you, the entire rest of her body was still, un-moving and with no signs of awareness.
On Day 4, Thursday, on entering the room and announcing my arrival, her foot, out from under the cover, started dancing. Here entire body, except for her foot, was still not moving and was unresponsive. If you did not see the foot dancing, you would have thought she was totally unresponsive.
The doctors canceled her transfer to a nursing home. Further observation was ordered.
On Day 5, Friday, calling out on entering the door, both feet were dancing on hearing my voice.
This connection we made, the neuro connections that were made, were most likely due to the intense communication over the past few days. This is just one piece to the puzzle on of helping people who have suffered strokes.
The question, what effect does our communication and working with them foster the reconnection and regrowth or the rewiring of the brain? Could more be saved if we provided intensive communication? Edith, incidentally, had a 93% recovery of her functions.
Currently up to 15 percent of stroke patients recover in the first year. While that may not seem clinically significant, if it was one of your family members, percentages do not matter.
The key to success is providing the help as soon as possible.
Then if we improve the outcomes of strokes in general, then what kind of outcomes would we see with brain stem strokes.
This is a peer reviewed article on the rehabilitation of patients recovering from brainstem strokes: case studies and clinical considerations.The Abstract
It was estimated that 15% of all stroke rehabilitation patients had a brainstem stroke. Unlike hemispheric stroke, the characteristic consequences of brainstem stroke include ataxia, dysarthria, and diplopia, severe dysphagia and may require enteral feedings.
There is little research published on rehabilitating those with brainstem strokes even though there are a significant number who experience these.
There is a considerable amount of comprehensive research on hemispheric stroke in literature.
In nursing school we were likewise told that we were given a certain number of brain cells and that was all we got in our lifetime. Now the idea that humans do not grow new brain cells has been proven to be wrong. We can grow new brain cells in a process called neurogenesis. This ability lasts our entire lifetime. Perhaps you may be wondering what you can do to increase your own neurogenesis? While that is a topic for another webpage, this is one of the ways we may be able to help those who have had a stroke. It may offer hope and help regarding brain stem stroke recovery.
We now know that boosting glutathione (GSH) can promote neuro-repair and neurogenesis. What would happen if we increased the glutathione in someone suffering from a stroke? Further, could this help improve brain stem stroke recovery outcomes?
Could it help? While there is little science to prove this could help, the next question, would it hurt? The answer is no.
To help promote neurogenesis, the fluid and electrolyte balance needs to be maintained. Interestingly, hydrating the body with unprocessed salt also has been found to increase GSH. GSH in turn has been found to increase neuron regeneration.
The term 'diagnose and adios' is used in medical schools regarding neurodegenerative diseases.
It points to a bias and the lack of effective treatment options (outside of surgery) for patients who are sent to neurologists. We cannot change this. However, those who have family members who have suffered strokes can make a change.
Go, talk to your family member who has had a stroke. Talk daily. Work their limbs in accord with the nurses or therapists at the hospital. Try to get them on alternative treatments that boost the glutathione levels.
In other word, do not give up. Do not let Diagnose and Adios be the end of the matter. It may be possible to help them, just as I saw a dramatic change in Edith.
Initially the first few days are the most critical, then the first three months, then the six month mark and finally the year.
Even if there is no change in the body, we do not know what is going on inside the mind. Treat them the way you would want to be treated if you were in their bed.
It took Dr. Lind 35 years to get lemons used in the treatment of scurvy. Today, it is not nearly as long to get new treatments incorporated into practice.
JAMA found it only takes 17 years for about 14% of newly discovered science to make it into day to day clinical practice.
As the old adage goes, the squeaky wheel gets the grease. Only those making waves in regards to brain stem stroke recovery, those who are making the squeak will hope to see a change in brain stem stroke recovery.