Tag Archives: Wallenberg’s Stroke

Are You Not Breathing When You Sleep?

30 Saturday Dec 2017

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Hooked up for my sleep study

One of the scariest situations I have encountered is to learn that my brain sometimes forgets to trigger my breathing while I’m sleeping. It is called Central Sleep Apnea and it is different from Obstructive Sleep Apnea that typically is related to snoring.

Central apnea is a ‘systems disorder’ in that the nervous system fails to trigger the breathing reflex. Obstructive apnea is a ‘mechanical disorder’ caused by blockage of the respiratory airways as the soft palate and the tongue relax and collapse into the airway reducing or stopping the airflow. Obstructive apnea is usually associated with snoring. Central apnea is not.

In my case, I have both obstructive and central apnea. Both affect my oxygen saturation in my blood when I sleep, and both can disrupt the quality of my sleep cycles. My central apnea may be a result of my 2012 Wallenberg’s Stroke (AKA:  Wallenberg’s Syndrome.) This is a stroke affecting the medulla, or brainstem that controls automatic body functions such as breathing.

Obstructive sleep apnea is relatively common; however, central apnea is not as common. In addition, obstructive apnea is effectively treated by using a CPAP or BiPAP machine during sleep to force pressure into the airway. Central apnea can be improved by this treatment; however, neither a CPAP, nor a BiPAP machine are designed to recognize a lack of breathing; therefore, a patient with central apnea may still have an issue with low oxygen saturation because the carbon dioxide is not being expelled from the lungs.

Unfortunately, some pulmonary medical professionals involved in diagnosing and treating sleeping disorders focus on obstructive apnea because it is more common, and it is effectively treated with a machine. Central apnea may have fewer events per night than obstructive apnea and when a medical professional observes that most of the apneas are resolved with a CPAP or BiPAP machine, it could be easy for them to view the remaining central apnea events as insignificant.

However, if a patient has central apnea, his brain may still be starving for oxygen even if the obstructive apnea events are completely resolved. The only way to determine this is for the physician to do a follow-up oximetry study to determine if the oxygen saturation of the bloodstream is at normal levels after treatment of the obstructive apnea has begun.

Both obstructive and central apneas can lead to serious health issues including excessive insomnia, fatigue, weight gain, headaches, nighttime chest pain, difficulty in concentrating, and mood changes.

Central apnea can also result in death. There have been documented cases (SEE below) of a patient dying in their sleep (Ondine’s Curse) within days or weeks of a Wallenberg’s stroke. The assumed cause is a failure to breathe.

The only way to determine central apnea is for the patient to undergo a sleep study; however, it is important to remember that not all sleep study programs recognize central apnea as a significant issue. If the patient has both obstructive and central apnea, they may assume that treatment of the obstructive apnea issue resolves the problem. It is vital that a follow-up nighttime oximetry test be done to determine if the oxygen saturation is resolved by the use of a CPAP or BiPAP machine.

My apnea issues were undiagnosed for five years after my Wallenberg’s Stroke. Hopefully, the neurological medical community will someday require a sleep study for every Wallenberg’s Syndrome patient as part of the best practices for stroke patients. Post-stroke apneas seem to be overlooked because they don’t present obvious symptoms unless the patient dies.

Links to central apnea related to Wallenberg Syndrome:

Central sleep apnea (Ondine’s curse syndrome) in medullary infarction

Central type of sleep apnea syndrome caused by unilateral lateral medullary infarction

Obstructive sleep apnea after lateral medullary syndrome

Sleep Apnea as a Feature of Bulbar Stroke

Delayed Central Respiratory Function After Wallenberg’s Syndrome

Rapidly progressive fatal respiratory failure (Ondine’s curse) in the lateral medullary syndrome

Ondine’s Curse in a Patient with Unilateral Medullary and Bilateral Cerebellar Infarctions

Failure to Diagnose: Right Hemisphere Strokes

22 Friday Dec 2017

Posted by in About Reno, Aging, Communication, Generational, Health, Universities

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Missing the symptoms

For years the medical community has been trying to increase public awareness of the symptoms of a stroke. The FAST program (Face drooping, Arm weakness, Speech slurred, Time to call 911) is considered critical in getting a stroke victim medical treatment to minimize the effect of the damage to the brain caused by a stroke.

The problem is that these symptoms are characteristic of a stroke in the left side,  (also called the left hemisphere) of the brain. Strokes in the right side or hemisphere, and strokes in the brain stem usually have different symptoms. These means that some strokes may be missed by non-medical witnesses, delaying and/or preventing treatment.

This has also resulted in a common belief that left hemisphere strokes are more prevalent than right hemisphere strokes, which a study published in 2015, in the American Heart Association Journal uncovered evidence that this was not the case. This study reviewed reported strokes in patients, followed up with an MRI assessment of the location of the stroke.

The results of the study indicated that left hemisphere strokes were slightly more prevalent than right hemisphere strokes. It suggests that the difference might be attributed to the diagnosis of the stroke based on the noted symptoms, resulting in left hemisphere stroke patients being easier to identify, and right hemisphere stroke patients not being diagnosed.

Here are the possible physical symptoms of a right hemisphere stroke according to the American Speech-Language-Hearing Association:

  • Attention. He may not be able to focus on a task or what he sees or hears.
  • Perception. She may have left-side neglect. This means that she will not see objects or people on her left side. For example, she may have trouble reading words on the left side of a page. She may ignore food on the left side of her plate.
  • Reasoning and problem solving. He may not know that there is a problem, like running out of medicine. Or, he may not know how to solve the problem, like calling for a refill.
  • Memory. She may not remember information she learned before. She may have trouble learning new information.
  • Social communication. He may not be able to understand jokes or nonverbal cues. For example, he may not understand what someone means when they shrug their shoulders. He may say the wrong thing at the wrong time or interrupt others.
  • Organization. She may have trouble putting information together logically. This can cause problems when telling stories or giving directions. She may also have trouble planning. So, she might forget to respond to your calls or e-mails or lose information.
  • Insight. He may not recognize that he has any problems. Or, he may not realize that his problems cause trouble at home, school, or work.
  • Orientation. She may have problems knowing the date, time, or where she is. She may not remember information like her birthday, age, or family names.

Stroke of Fate: Me Versus My Brain

25 Saturday Feb 2012

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I consider myself to be fairly intelligent…you can stop laughing now. At least I’ve never auditioned for a reality television show and that has to be some sign of intelligence.

This 34 year-old woman had a stroke in a similar area as my stroke (see black arrow at base of brain)

However, I’ve learned that I am no match for my brain. My brain has hundreds of thousands of years of evolution on its side and it does so many things automatically that it dwarfs my petty conscious actions like eating, reading, talking, and walking. Now that my brain has downsized some of the automatic functions, like sensing temperature and pain on half of my body, I have learned that I am incapable of taking over those functions…without help.

Enter the team
While I was in the main hospital a physician visited me and introduced herself as my ‘Rehabilitation’ doctor. At that time I did not understand that she would become my advocate and director of my recovery. Over the next few weeks I would learn that I was not being discharged to another hospital as much as I was being transferred to a team of people, including my Rehabilitation physician, who would bring their extensive professional skills into my battle with my brain. 

VitaStim electrodes were used to strengthen my swallowing

As in most hospitals, the nursing staff at Renown Rehabilitation Hospital took on the role of monitoring my health and addressing the medical needs of my post-stroke body, however, the therapy staff became my coaches who devised the game plan¹ to reverse the damage caused by the stroke. Speech, occupational, and physical therapists each dedicated an hour per day to reestablishing a normal brain/body connection. 

(¹My apologies for the sports metaphor…I blame it on the stroke…because I can, not because it’s true.)

Brain damage (or dain bramage, as I prefer to call it) is as individual as a fingerprint, so treatment is not something you find in a medical cookbook of cures. My condition after my stroke was diagnosed as Wallenberg’s Syndrome, but my symptoms ranged from spot on to the symptoms of Wallenberg’s, to mild or non-existent for issues such as loss of speech. My team of therapists worked like great artists as they created a plan of action to help the brain rewire around the damage caused by the stroke.

Home at last!

Speech therapy focused on swallow control and strengthening my voice. In three weeks I progressed from not being able to swallow water to being able to eat a regular meal, including salad. I have to be aware of what I’m doing when I eat, but I am near normal in the use of throat systems that separate breathing and food intake. My voice is easily tired, but continues to become stronger each day.

My Occupational therapist concentrated on vision, especially eye control. My double vision issue is caused, at least in part, to muscle control of both eyes. I should have known that she would be the one to help me in this area as my first short episode of single vision occurred when I first met her. Many of the exercises she has taught me actually exacerbate my vertigo (dizziness), however, I have experienced less vertigo and more episodes of single vision on days when I completed the exercises she taught me.

While all my therapists were exceptional, it is my physical therapist that I admire the most. She took on the challenge of getting me mobile again and to do it she had to deal with me and my quirky brain. I have four issues when it comes to walking. First is the lack of balance. I feel a strong pull to the right and when I try to counter it my brain wants me to lean to the right.

Second, is my double vision issue that place my right eye image over and at a 20° angle to my left eye image. I might have an easier time walking if I just knew which image was the one I should use for reference.

Third, each of my eyes have a slow ‘swim’ that prevents me from focusing on a single point, therefore, covering one eye does not necessarily give me an easier visual reference. Part of this issue is related to uncontrolled eye movement and part is a lack of fine-concentration skills that may have been, in small part, pre-existing to the stroke. I noticed about a year ago that I could not meditate on a single point without losing focus every few milliseconds. Since the stroke, the eye swim is more pronounced.

Finally, my vertigo has taken the front seat in my balance issues. Dizziness hits me almost every time I move my head making walking fun to watch, but not fun to do. My physical therapist has not only utilized her own skills and talents in addressing my brain damage, but also involved other physical therapists, including one who has experience dealing with vision and vertigo issues like mine. The result is that I can walk and when my vertigo is under control my walk is almost normal…almost.

My brain still has some rewiring work before I will be a fully functioning adult that can hop in the car and drive to Starbucks, but thanks to the team at Renown Rehabilitation Hospital, I’m weeks to months away from being able to being fully independent. That makes me the winner.

(NOTE: Paul was released from Renown Rehabilitation Hospital at 1:00 PM today, Saturday, February 25th and is now continuing his recovery at home.)

Stroke of Fate: Fighting a Winning Battle

20 Monday Feb 2012

Posted by in About Reno, Generational, Health, Lessons of Life, Travel

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Why don’t strokes ever cause super powers?

Weapons of Rehab

A stroke has no sense of honor, nor fairness. It can destroy every aspect of human dignity and leave behind a pulp of flesh. A stroke can wipe out speech, sight, hearing, touch, smell, mobility, cognitive thinking, and the list goes on. Never have I heard of a case of a stroke doing good, like giving heightened senses, or more strength. Strokes don’t even fix missing functions, like giving a blind person their sight, or a deaf person hearing. Quite frankly strokes suck.

After my stroke I was faced with the possibility that I could be incapable of independent living for months, years, or even the rest of my life. That didn’t happen. While I still can’t drive, nor safely move without some type of aid (wheelchair, walker, cane, etc.) I can get around on my own. I can eat as long as I’m mindful of what I’m doing, and see well enough to write, although I often have to use just one eye. My prognosis is great, with the expectation that almost all of my disabled functions will repair over the next few weeks and months.

It’s not easy, but I am fighting a winning battle. I’m fortunate because my stroke did not do more damage. I am frustrated by the fact that my brain seems to lack the capacity to correct my balance and vision issues. Cognitively I know exactly what needs to be done, but my brain has the ability to overrule logic and tell my body that I’m about to fall to the right, so lean right….I said correctly, my brain thinks I’m leaning right, but then insists on shifting more to the right. This irony must be fun for my Conservative friends, but to me it only shows how screwed up we become when we lack balance.

Vertigo has become a major issue in my recovery. The sense that the room is spinning varies from almost non-existent, to a strong rotational pull every time I move my head slightly. Walking becomes a drunken stagger when my vertigo kicks in, which makes my physical therapy sessions almost useless.

Still, everyday I am a bit closer to a full recovery and there are times when I feel almost normal. I have a great team of therapists who are working with me to get better…possibly to get me out of their hair. I’ll talk about living in Rehab next.

Stroke of Fate: Time and Tide (Thank You, Basia)

13 Monday Feb 2012

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Basia's Time and Tide cover

One of my favorite albums is Basia’s Time and Tide. Basia has taken me through many emotional times and I should not be surprised that after this stroke she returned into my life. My brain and body have decided to have a partial trial separation. I know I know they are meant to be together, but now they’re not talking, so with Basia’s help I’m trying to get them back together. Fortunately, I have many people helping us.

Here and now is all it’s about, let’s use it or lose it.
Promises by Basia

Here And Now
Both my daughters live in Colorado. When they heard that I was hospitalized they began talking about coming out. I was ready to discourage it because I couldn’t see the purpose or value of them flying to Reno, Nevada.

I was wrong. I failed to comprehend  the significance of their presence. I have a good close-in support system here with my spouse (Saralinda,) son (Alexander,) and in-laws, but my daughters (Kelli and Katy) added to that support in ways I never could have imagined.

Love is contagious, it’s a part of a chain
Promises by Basia

My temporary home for restart my life

They arrived a few hours before I was transferred from Renown Medical Center to Renown Rehabilitation Hospital. They became an extra lift in the uncertainty of the transfer. Saralinda, Kelli, and Katy, joined forces in becoming an advocate for my recovery and the hospital staff recognized that I was not alone. I don’t fully understand how that impacted my care, but I do know that the staff seemed to appreciate their involvement.

I’ll be there if you need me, I am your helping hand.
New Day For You by Basia

A New Day
Tuesday was an important day in my recovery. On Monday I had a swallow study performed complete with a camera up my nose. From that test I learned that my NG tube would have to remain for the near future because my throat was not working correctly. My swallowing had improved from Saturday’s, but it looked like I was facing at least a week of looking like Mr. Snuffleupagus and the idea of being able to taste food again seemed farther and farther away.  

I still couldn’t walk without falling over, I’d lost temperature and pain sensation over half my body, my right and left eye were each giving me their independent version of the world, my head and body were in a constant state of spin, and I survived by fluid going in my arm or goo going to my stomach via my nose. There was not a lot of good news.

However, all that was blunted by the news that my daughters and one of my granddaughters would be arriving on Tuesday. In the moment it didn’t seem to be that important, but in hindsight, it made my world seem much brighter. It was Tuesday when my life seemed to come back to firm ground. On that day my stroke found out who it was dealing with, and it didn’t expect to be met head on by women of mass reconstruction. It whimpered.

It would be on Wednesday that I…and my stroke, would meet the rest of the team…the medical staff at Renown Rehabilitation Hospital. It was an another good day for me…not so much for my stroke.

We got time, oh baby, there’s no rush
Gonna be a better day for us
Time and Tide by Basia

Stroke of Fate: Day Two

12 Sunday Feb 2012

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I spent Saturday night fighting muscle spasms all over my body, possibly from a reaction to the nausea medication given to me in ER at Renown Medical Center. I was also feeling weak and disoriented. The right side of my face felt like I been punched by a massive fist, but with no pain, just numbness. I had no idea why my body was malfunctioning so badly with no obvious trauma. A stroke was the most  plausible cause, but no one really knew.

Me and my NG tube

Sunday morning brought new symptoms. I now had double vision. My right eye took the same image of my left eye, but put it above and at a 20° angle, which was higher on the right, lower on the left. In addition, both images seemed to spin and skip. I have not been falling down drunk many times in my life, but that is the only way I could describe this sensation.

I was incapable of functioning as a normal adult. I couldn’t stand, walk, eat, drink, see, read, or write.  I now relied on an IV to supply my fluids, and by late Sunday, would need a tube inserted for nourishment.

90° Flip: This is what my brain did to my vision for about four seconds if I closed my eyes, relaxed, then opened them

The answers did not come after initial MRI scan. The Radiologist found no visible sign of any type of hemorrhage in my brain. More tests were scheduled, but the diagnosis would eventually come after a second look at the MRI scans. I had a tiny stroke on my brain stem. The doctor told me that this type of stroke caused Wallenberg’s Syndrome or Lateral Medullary Syndrome As it turns out I am almost a textbook case.

While I was in the neurological unit I learned that I had lost heat and prick sensation on my right side of my face and the left side of my body. I could sense touch, but not pain, nor temperature. I also discovered that if I closed my eyes and relaxed, once I opened my eyes, the visual image would be turned at a 90° angle for about four seconds and then would spin and become horizontal. By the end of Sunday I had a good understanding of how much damage my stroke had done. It would be Monday before I would see any signs of hope of recovery.

Stroke of Fate: Day One

11 Saturday Feb 2012

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All days come from one day, That much you must know
You cannot change what’s over,  But only where you go

Pilgrim by Enya

Last Saturday, February 4, was our 17th wedding anniversary. It was also the day of two six-year-old birthday parties that our son was to attend. The first birthday party was at Fun Quest in the Grand Sierra Resort in Reno, NV, USA. At about 3:15 PM I was eating the remnants of the piece of birthday cake that my son barely touched when I felt woozy (a technical medical term.) It felt almost like the way I feel before I become sick, but I wasn’t nauseated. It passed, but I told my spouse that I may need to leave. She became concerned, but the feeling was slowly fading.

Paul Kiser

About five minutes later it happened again, but this time was stronger. My spouse left me, and I assumed that she was getting Alexander and saying our goodbyes. Shortly, Virginia,  the Grandmother of the birthday boy was sitting next to me. She was a nurse and she began asking some questions. Although I wasn’t presenting the classic symptoms of a stroke, I’m guessing that my behavior indicated that something neurological was amiss. Again, the feeling subsided.

In another five minutes it came back stronger. At this point I knew this may be more that just a sudden onset of a flu. Virginia asked me to lay down and I was in no position to disagree;; however, the moment I laid down I felt the I was gong to lose the cake I had eaten, so I stood back up. I don’t know exactly what I said, but I indicated I needed to leave and headed out of the room. My spouse had gathered up Alexander and Virginia came up to me and said to lean on her. I did and the farther we went the more I became reliant on her support as my balance forced me to fall to the right.

We finally got to our car and left for the Emergency Room at Renown Medical Center, which was a few blocks away. There was no wait. My situation seemed obvious to everyone that I needed medical assessment immediately. In ER my symptoms were a loss of balance, a feeling of weakness, extremely high blood pressure, a tingling on the right side of the face, tingly right fingers, and possibly some dropping around my right eye. My spouse summoned our son’s grandparents who came and eventually took Alexander to the next party in hopes of keeping him from becoming drawn into the drama that he couldn’t fully grasp.

Meanwhile the ER staff set about to learn what was going on in order to establish a treatment. As a precaution they were going to give me an aspirin. That’s when we discovered I couldn’t swallow even a sip of water, let alone a pill. A CAT scan was done with no overt indication of a stroke.

The feeling was that it was either a small stroke, or an infection, with a stroke being more likely. I was admitted into the neurological unit and scheduled for a MRI scan on Sunday morning. At this time my vision was still normal, and my strength was good on both sides of my body, but I couldn’t stand, nor swallow. It would be Sunday before the damage was complete and I would know why.