Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

CPM/EPM- Locked-In Syndrome:

I am sorry that I have not reported on this critical symptom of CPM/EPM previously. I thought I had covered it previously, but I’m not finding any previous posts about it. Please forgive me if I have posted about it, but this should be a much more informative post.

Locked in syndrome is an issue that occurs with brain injury, so it is not just a symptom related to CPM/EPM alone. It can happen with stroke and also with head trauma. It is characterized by the inability to move ANYTHING, except for the eyes. Generally, a person is able to open and close their eyelids and look vertically up. However, they are unable to speak. Sometimes, they are unable to make any sounds at all. Even though they have significant paralysis, their cognitive functions seem to be close to normal or near normal.

It is difficult to determine how many people are actually impacted by locked in syndrome because most of those impacted die before it can be definitively diagnosed. It is also suspected that a number of patients might not be diagnosed because they make an astounding recovery.

Now, again, locked in syndrome is not solely caused by CPM, but it is generally related to an injury to the pontine area of the brain. It is believed that strokes are the primary cause of locked in syndrome. It can also be caused by infection and other demyelination causes.

I found this to be extremely interesting. Firstly, a person may not be able to move even their eyes, so it is believed that a number of persons who are impacted by locked in syndrome might be misdiagnosed as being in a vegetative state, ie that they have little or no cognitive function. It is also sometimes confused with coma.

Due to the complex nature of locked in syndrome, it makes it difficult to determine the true number of people that are impacted. That’s pretty scary, especially when you take into consideration cases like Terry Schiavo.

It was never clearly determined if Terry Schiavo was in a vegetative, completely brain damaged state or if she had some cognitive function and had significant paralysis. It has been determined that she had an electrolyte imbalance, possibly related to an eating disorder, but there is also concern that her injuries were caused by an attack from her husband. It truly is a mystery, but that’s the scary part with people being in an locked in state. It is extremely difficult to determine the extent to their injuries.

For more on Terry Schiavo, I found this website to be very informative: http://www.wnd.com/2005/03/29516/

Now there are different levels of paralysis with locked in syndrome. A person can be completely paralyzed in which there is no ability for movement, even their eyes are paralyzed. There is classic which a person retains the ability to move their eyes (vertically or blink), and then there is incomplete locked in syndrome. In this version, a person has very limited movement.

A person who has more movement has a better chance of recovery.

I found the following website extremely detailed in describing locked in syndrome and what to expect: http://cirrie.buffalo.edu/encyclopedia/en/article/303/

I found this paragraph interesting:

Alertness often fluctuates, especially during the acute phase (Gutling et al., 1996). Several authors reported that cognitive functions were generally preserved although cognitive impairment may be present (Smith et al., 2008; Smith and Delargy, 2005; Ruff et al., 1987). Attention and memory disorders are observed in nearly half the cases, especially in individuals with a post-traumatic LIS (León-Carrión et al., 2002; Ruff et al., 1987; Garrard et al., 2002). Emotional lability is a common symptom (Garrard et al., 2002). Apathy is sometimes observed and may persist in some cases (Beaudoin and De Serres, 2008). Recovery of cognitive functions is often observed in individuals during the first year (Brunoet al., 2008).

I think the above is true for most brain injuries. There seems to be cognitive issues with memory, attention and learning. There is also that psychological factor that is involved in brain injury as well. These are issues that I have experienced but have had difficulty locating in the literature describing CPM/EPM…not the cognitive issues but the psychological aspects, so I found this to be “proof” that this behavior isn’t unlikely with CPM/EPM.

I found this video EXTREMELY relevant. I really think that this is what happened to Terry Schiavo. I have been told by a friend recently that a similar situation is happening NOW to their family member.

This is a similar story to Terry’s.

http://www.youtube.com/watch?v=xWHnkFaxMxM

The following video is also heartbreaking:

http://www.youtube.com/watch?v=6gqSYIDsKjs

The following is a story of a women who has locked in syndrome, and how she finds that her life is still important and worth living. It’s very inspiring.

http://www.youtube.com/watch?v=A3uEMyVnThI&feature=related

I found this story also inspiring:

http://www.youtube.com/watch?v=ZR2GQikB7I4

http://www.youtube.com/watch?v=3IO6i0syM8Q

I really think it’s important for people to realize that if you or someone you love develops this condition, it does not mean that you life is over, and it is important to WAIT before pulling feeding tubes or other life supportive measures.

I pray that any of you reading this are just looking for information, and are not experiencing this personally. It is an extremely difficult condition to live with and to watch your loved ones experience, especially in the beginning, but as technology becomes more advanced, I believe there will be more hope and further recovery for even the most devastating cases of locked in syndrome.

In closing, I believe the most important thing for a significant recovery is early recognition and an immediate start to rehabilitation. It is also important to get all senses involved through the use of bitter liquids, sounds, movements, etc.

Please feel free to comment regarding your personal experiences with locked in syndrome or questions.

 

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2 thoughts on “CPM/EPM- Locked-In Syndrome:

  1. I have lived in this terrifying world. It is a world where you and you alone realize you are hearing what people are saying. It was the most frightening time of my life. I am lucky, (that may sound weird) but they realized it early because I would cry when they were talking about what they were going to do with me. Once they figured it out they immediately started therapy. I believe that is the only reason I am not still in the nursing home. Because someone noticed my tears and started talking to me. When I heard the first words directed to me, I felt a sense of relief. It was still a long road. But I made it through.

    • I think that there are a vast number of people who are living and dying with this condition, and we are unaware of it. A friend has a relative that on Father’s Day collapsed. She was put into a medically induced coma so that they could intubate her comfortably. When they tried to bring her back out of the coma, she wouldn’t wake up.

      The doctors have stated that she has barely any brain function, mostly in the brain stem. So, it was decided to pull her feeding tube, respirator, and withhold liquids. They have her on significant amounts of pain medications, but she does have periods where she seems to be more active. She does open and close her eyes. She even makes seemingly uncontrolled movements of her hands and arms. She is sure to die, but it causes me great anxiety in thinking that this woman is in a locked in state and no one knows it.

      Maybe she isn’t, but what if she is? I can’t say with certainty what happened to Terry Schiavo but after reading about locked in syndrome, I have to say that I would not be able to kill people slowly over weeks with even the slightest chance that they are aware of it happening. I believe that it’s inhumane. But more than that, it’s scary.

      Maybe that could be your calling, Deb. Start sharing your experience about locked in syndrome, your recovery process, etc with doctors and hospitals. Did you have brain activity at that point in time? Was it limited to brain stem function only? Doctors rely so much on scans and tests that they ignore the fact that they know practically nothing about our bodies, that it’s still practically uncharted territory, a mystery.

      Feel free to make posts if you like, and I will be happy to post them to my blog. I can make an additional section on recovering from locked in syndrome. Let me know.

      I don’t know if I would have survived what you did, and I wonder if my family and friends would have recognized that I was still here. It terrifies me just thinking about it, so I could only imagine what it would be to live through it. God bless you for your struggle!

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