Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the month “June, 2012”

19 Jun 2012
2 Comments

CPM: THE STATISTICS

So after months of trying to find out the answers to this question, I have found a beginning answer. Now, here’s the thing. This is the diagnosis code for CPM, but it doesn’t include a diagnosis code for those who develop EPM only…at least I don’t believe it does. But, it’s a start. 🙂

First the ICD-9 diagnosis code for CPM is

The way I found this is through my friend Jeffery Amitin. He left it in a message he posted in 2008. The ICD-10 code is G37.2:

2012 ICD-10-CM Diagnosis Code G37.2

Central pontine myelinolysis

  • G37.2 is a billable ICD-10-CM code that can be used to specify a diagnosis.
  • On October 1, 2013 ICD-10-CM will replace ICD-9-CM in the United States, therefore, G37.2 and all ICD-10-CM diagnosis codes should only be used for training or planning purposes until then.

Mortality Data

  • Between 1999-2007 there were 209 deaths in the United States where ICD-10 G37.2 was indicated as the underlying cause of death 
  • ICD-10 G37.2 as underlying cause of death data broken down by: gender, age, race, year

ICD-10-CM G37.2 is part of Diagnostic Related Group(s) (MS-DRG v28.0):

  • 058 Multiple sclerosis & cerebellar ataxia with mcc
  • 059 Multiple sclerosis & cerebellar ataxia with cc
  • 060 Multiple sclerosis & cerebellar ataxia without cc/mcc

Convert ICD-10-CM G37.2 to ICD-9-CM

The following ICD-10-CM Index entries contain back-references to ICD-10-CM G37.2:

  • Myelinolysis, pontine, central G37.2

Now, the above information states that the number of deaths related to CPM from 1999 to 2007 were 209 deaths. Now, I believe this is an EXTREMELY low number because it is believed that at least a 1/3 of patients who develop CPM die. The following information for 2010 ALONE, makes me doubt that the number of deaths related to CPM over an 8 year period is only 209.

2010 National statistics – principal diagnosis only

Outcomes by 341.8 Cns Demyelination Nec
341.8 Cns Demyelination Nec Standard errors
Total number of discharges 524 56
In-hospital deaths * *

The above information states that there were 524 DISCHARGES related to CPM…that doesn’t include the number of those who died from CPM.

The other interesting finding in the statistics above is that there WERE NOT ANY DEATHS related to CPM. Now, I really believe that’s not possible at all. Obviously, there’s information that is missing. 😦

Now this makes a little more sense. If you list the number of diagnosis of CPM that is diagnosed in combination with another disorder/disease, then the number of those who impacted jumps dramatically:

2010 National statistics – all-listed
You have chosen all-listed diagnoses. The only possible measure for all-listed diagnoses is the number of discharges who received the diagnoses you selected. If you want to see statistics on length of stay or charges, go back and select “principal diagnosis.”
341.8 Cns Demyelination Nec
341.8 Cns Demyelination Nec Standard errors
Total number of discharges 2,490 190

The following chart is the number of those who have been diagnosed with CPM over the past 18 years. Considering that the number of cases of hyponatremia have increased over the past 10 years, it is a bit unusual not to see the same type of increase in the number of cases of CPM. Again, I have to wonder if the data reported on CPM, due to the nature that it is usually caused by malpractice, is in accurate. I will continue to try to find out information as it becomes available.

HCUPnet provides trend information for the 18 year period: 1993-2010

Number of discharges
ICD-9-CM all-listed diagnosis code and name 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010
341.8 Cns Demyelination Nec 1,956 1,831 2,127 2,386 2,594 2,300 1,906 1,711 1,662 1,666 2,003 2,097 2,103 2,435 2,537 2,299 2,168 2,490

Keep in mind, that the above information is the number of people DISCHARGED. This is not a record of the number of deaths related to CPM.

Please use the following website to find out more information regarding CPM. You have to do research on all hospitals in the nation and use the ICD code 341.8 to locate these charts.

Also, please feel free to contact me with any questions.

 

Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged , , , ,
19 Jun 2012

Todd’s Story: CPM

Todd and I have corresponded for the past year, and I find his story also very motivational, so I’m happy to start sharing it here. Todd’s story shows how alcohol can lead to hyponatremia, and being an alcoholic can further increase your chances of developing CPM. It’s a dangerous combination, alcoholism and hyponatremia.

Now, I want to spend time explaining some of the things I’ve hit upon before regarding alcohol.

You are at risk for developing hyponatremia if you have even one drink….however, it is very unlikely for you to develop it after drinking just one drink.

The more you drink, the more likely you are to develop hyponatremia. If you are an alcoholic, you are at great risk for developing it. You can also develop CPM/EPM if you are an alcoholic without developing hyponatremia. In other words, drinking chronically can lead to demyelination of your pontine area, basal ganglia, or other areas of your brain.

I hope Todd’s story will motivate those who are drinkers to think twice about picking up their next drink.

……Unfortunately, I don’t know how to blog, but anything I share with you is free game, my life is an open book now, I don’t hold any secrets about myself anymore. You description of the causes of CPM was explained to me as the perfect storm:

1. I am an alcoholic
2. I pounded scotch and water.
3. I was taking htc for HBP.
4. I got sick on both ends

I am starting to work on my testimony for my recovery group and will share if when I am done.

I try to wake up everyday trying to figure out why God spared my life? Everyday is a great day is I choose to make it one which I suppose about 50/50…..

Hey,
I finished ready your blog today. I know exactly what you mean because sometimes it takes me an hour to write these short little notes because I do not want to offend anyone. I’m in a quandary, I what to forward the blog address to my health care providers but can’t find the right words. There is a long story behind it: They were my clients and they fired me! My work with them was in the med-mal arena.

Hey,
Housekeeping: I was diagnosed with CPM Late December 2007. I am an alcoholic. I haven’t seen a neurologist in 2+ years, they really never wanted o bother with me. My primary care Doc’s are great. I use to go once a week but now it is once a year. The remnants of the CPM are my involuntary grunting, drooling and uncontrolled belching. I also 90% of the time have a “deer” in the headlights expression. Physically, I’m proud to tell you I am in the best condition of my adult life. Over 4 years of sobriety with 3*** and Copenhagen FREE. I’m into biking and spinning. You have to brag when you can: I burned 818 calories in today’s spinning class, a personal best.

My life partner read your Blog and is super impressed with your research. She will be way more useful than me, because she lived the CPM, I only remember certain aspects of my time in prison.

She obviously has permission to correspond with you but is still getting computer literate (I finally bought her and everyone I love a MAC) and is also busy.
We have 5 children, 2 still at home………

Hey,

I forgot to mention that my speech is not perfect. I do stutter when I get excited and my volume increases and I don’t realize it. I also cannot write that well anymore not that I could in the first place. My mother, an RN, who in retirement took me to her continuing education seminars on brain injuries, when I would look down always reminded me, with brain injuries, always give it at least 4 years for recovery.

p.s. Spinning is the best Cardio ever and it is easy on the knees.

My life partner swears that my better days are the ones when I’m active in exercise. I can remember the first time to the gym: 1/11 of a mile was a victory….then a mile…..then two and now 100 mile bike rides.

Keep up the great work.
I’m still encouraging Linda my life partner to write you, I overheard her discussing the Blog with my oldest daughter about their experience with my CPM and the surrounding events. The only things I remember are the peace of the ICU, before being admitted telling my boy to take me out if they cath me, being able to memorize the 8 questions of “Are you an Alcoholic“. Being on the general floor on the Hospital, constantly asking to be walked, because I new something was wrong. I do not remember having headaches. I’ll keep encouraging her because your story sounds familiar to what happened to me except alcoholism was the proximate cause of my low blood sodium.

Hey,
I just got back from a session of speech therapy. I went for a 4 year/50,000 mile tune up. The good news is in their humble opinion and expertise my speech is great. I would admit that normally I feel 95-98% but somethings dip below 90%, I admit the speech problem is all in my head.
One issue that they identified is my facial expressions.
“deer in the headlights” eyebrows always up and my mouth is constantly open. Two things I was not aware of.
So much for my Neurologist’s suggestion for becoming a professional poker player! At the end of the day I can feel some self confidence with my speech.

Hey,
The “deer in the headlights” look is definitely a CPM issue along with my mouth being unconsciously open 24/7 unless I’m thinking about correcting it. The toughest setback of CPM is the mental aspect: Remembering how things were before CPM, then now. Trying your hardest for minuscule gains is a bitch. Don’t be worried about the muscle issue yet. I cannot specifically say that happened to me but I definitely lost strength. Three hunting seasons ago, I could barely carry a 20 gauge and was so pissed off after the season I went directly to the gym. Three years later, I carry what affectionately call “the cannon”–Weatherby O/U 30inch 12 gauge. After this year a buddy told me to “knock off that disabled shit because you can’t fool me, I saw you dropping everything you shot.” He was right. Bottom line–we know when someone is BSing with us or is sincere. Personally I like the BS too because I like to give it out.

SO, as you can see from Todd’s story. There is hope for living with CPM/EPM. He isn’t the same person he was before the injury, but he’s making strides to make the best of his life now. I still have a lot of questions for Todd, so please don’t consider his story complete at this point, but I wanted to get his story out there.

Have a great night.

Posted in Your Hyponatremia/CPM story: and tagged , , ,
18 Jun 2012

Hyponatremia: Statistics Updated:

Well, folks, I hate to say that I was right, but I was right. The number of hospitalizations due to hyponatremia increased in 2010. It is an ongoing epidemic, and one that needs to be addressed.

I’m am praying that if you read this post, you will do your part in spreading the word about hyponatremia. PLEASE, share my blog with your friends, family, neighbors, co-workers, ANYONE and EVERYONE that you know. It’s preventable, and it should be a household name.

The following information was obtained from, HCUPnet: http://hcupnet.ahrq.gov/HCUPnet.jsp

2010 National statistics – all-listed
You have chosen all-listed diagnoses. The only possible measure for all-listed diagnoses is the number of discharges who received the diagnoses you selected. If you want to see statistics on length of stay or charges, go back and select “principal diagnosis.”
276.1 Hyposmolality
276.1 Hyposmolality Standard errors
Total number of discharges 1,901,923 48,831

Weighted national estimates from HCUP Nationwide Inpatient Sample (NIS), 2010, Agency for Healthcare Research and Quality (AHRQ), based on data collected by individual States and provided to AHRQ by the States. Total number of weighted discharges in the U.S. based on HCUP NIS = 39,008,298. Statistics based on estimates with a relative standard error (standard error / weighted estimate) greater than 0.30 or with standard error = 0 in the nationwide statistics (NIS, NEDS, and KID) are not reliable. These statistics are suppressed and are designated with an asterisk (*). The estimates of standard errors in HCUPnet were calculated using SUDAAN software. These estimates may differ slightly if other software packages are used to calculate variances.

This is a table of the people above that are impacted by age:

Patient and hospital characteristics for
ICD-9-CM all-listed diagnosis code
276.1 Hyposmolality

Total number of discharges Standard errors
Total number of discharges
All discharges 1,901,923 (100.00%) 48,831
Age group <1 25,749 (1.35%) 2,251
1-17 25,657 (1.35%) 2,808
18-44 199,628 (10.50%) 7,021
45-64 586,155 (30.82%) 16,448
65-84 777,902 (40.90%) 21,587
85+ 286,523 (15.06%) 8,866
Missing * *

SO, the majority of those who are being treated for hyponatremia are the elderly. This information tends to be true for the majority of illness and disease. The elderly and children tend to be the targets for most health concerns. However, surprisingly, after the elderly between the ages of 65 and older, the next largest group are adults age 45 to 64. So, children are less likely to develop this than other age groups. I thought that was pretty interesting.

The following section of information includes additional statistics, which I found also surprising. Usually, illnesses or disease tends to target those impoverished, but that is not the case for hyponatremia. Women develop it more than men. Please take your time to read the following statistics, and feel free to ask me questions if you need assistance deciphering the figures.

Patient and hospital characteristics for
ICD-9-CM all-listed diagnosis code
276.1 Hyposmolality
Total number of discharges Standard errors
Total number of discharges
All discharges 1,901,923 (100.00%) 48,831
Sex Male 863,661 (45.41%) 22,666
Female 1,038,073 (54.58%) 26,924
Missing * *
Median income for zipcode Low 525,033 (27.61%) 21,741
Not low 1,330,533 (69.96%) 42,237
Missing 46,357 (2.44%) 4,125
Patient residence Large central metro 511,650 (26.90%) 38,083
Large fringe metro (suburbs) 460,735 (24.22%) 35,726
Medium and small metro 534,770 (28.12%) 39,687
Micropolitan and noncore (rural) 357,490 (18.80%) 18,234
Missing 37,278 (1.96%) 9,566

Weighted national estimates from HCUP Nationwide Inpatient Sample (NIS), 2010, Agency for Healthcare Research and Quality (AHRQ), based on data collected by individual States and provided to AHRQ by the States. Total number of weighted discharges in the U.S. based on HCUP NIS = 39,008,298. Statistics based on estimates with a relative standard error (standard error / weighted estimate) greater than 0.30 or with standard error = 0 in the nationwide statistics (NIS, NEDS, and KID) are not reliable. These statistics are suppressed and are designated with an asterisk (*). The estimates of standard errors in HCUPnet were calculated using SUDAAN software. These estimates may differ slightly if other software packages are used to calculate variances.

If you want to test whether apparent differences are significant, use the Z-Test Calculator. A p-value of less than 0.05 is generally considered statistically significant.

Here is the statistics for those who developed hyponatremia in 2009:

2009 National statistics – all-listed
You have chosen all-listed diagnoses. The only possible measure for all-listed diagnoses is the number of discharges who received the diagnoses you selected. If you want to see statistics on length of stay or charges, go back and select “principal diagnosis.”
276.1 Hyposmolality
276.1 Hyposmolality Standard errors
Total number of discharges 1,735,847 52,458

Weighted national estimates from HCUP Nationwide Inpatient Sample (NIS), 2009, Agency for Healthcare Research and Quality (AHRQ), based on data collected by individual States and provided to AHRQ by the States. Total number of weighted discharges in the U.S. based on HCUP NIS = 39,434,956. Statistics based on estimates with a relative standard error (standard error / weighted estimate) greater than 0.30 or with standard error = 0 in the nationwide statistics (NIS, NEDS, and KID) are not reliable. These statistics are suppressed and are designated with an asterisk (*). The estimates of standard errors in HCUPnet were calculated using SUDAAN software. These estimates may differ slightly if other software packages are used to calculate variances.

NOW, I HAVE TO SAY THIS: I NOTICED THAT THERE WAS A DISCREPANCY, A SIGNIFICANT DISCREPANCY, IN THOSE LISTED AS TO HAVE HYPONATREMIA IN 2009, AS THE ONLY DIAGNOSIS IN 2009 VS THE DATA LISTED IN 2010. WHEN I SELECTED HYPOSMOLALITY AS THE ONLY DIAGNOSIS CODE IN 2009, THE STATISTICS DROPPED TO ~90,000 PEOPLE. HOWEVER, WHEN I SELECTED HYPOSMOLALITY AS BEING A DIAGNOSIS WITH OTHER MEDICAL CONDITIONS, THERE WERE OVER 1.7 MILLION. WHEN I FUNNELED THE SAME SEARCH OPTIONS INTO THE 2010 DATA, THE NUMBER WAS THE SAME FOR BOTH SEARCHES.

WHAT DOES THIS MEAN?

I think the information was coded incorrectly in previous years, or in 2010, but it’s difficult to say which information is correct. It is accurate to say that there are millions being treated for hyponatremia each year, but it is apparently difficult to determine if they are developing hyponatremia while being treated in the hospital for other conditions or whether or not they are being hospitalized because they have hyponatremia on its own.

I hope that makes sense, but it’s important to keep that in mind when reviewing the statistics.

I hope to obtain the same information for CPM/EPM, but it’s more difficult because it is rare, and I don’t believe there is an actual single diagnosis code for it. In other words, they include CPM/EPM, in a blanket diagnosis code for central nervous system injury, which can include numerous other injuries.

Well, there you go folks. I am completely exhausted, so I am going to leave it there right now. Please, if you read my blog, and feel that I dropped the ball on a topic or think there should be expansion on a topic, PLEASE, PLEASE, let me know. I do not remember the things I’ve posted about before, and it’s difficult for me to go back and read through my other posts, so I am relying on you to keep me on track.

Thank you!

 

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Posted in What is Hyponatremia? and tagged , , , ,
16 Jun 2012
2 Comments

Deb’s Story:

 

Deb has helped provide insights into symptoms that are related to CPM/EPM. She’s suffered from the condition for four years, and I am including excerpts from comments that she’s left me in my comments section to help journal some of the symptoms that aren’t recorded in the medical literature.

In the beginning:

I had the headache for about a month before my collapse into a coma. I kept going to the Chiropractor thinking there was something wrong with my neck, but as it turned out it was my sodium.

She further describes her experience:

My initial symptoms were severe. I was in a coma for 4 weeks. Went into cardiac arrest twice. When I woke I was paralized from the neck down, unable to speak or swallow. I had a feeding tube thru my nose while in my coma, but when I woke and they realized I wasnt able to swallow they put one in my stomache. I was then sent to a nursing home where I did 5 hours of phsyical, occupational, and speach therapy daily. I was in a wheel chair for quite a while. I had horrible pain, sharp shooting pains, and alot of cramping. When I woke from my coma my left foot and leg were cramped up, my foot was up to my knee. My hands, were curled up in balls. To make you understand my mind set, when I saw my neurologist for the first time after I left the hospital, he told me I may be in a wheelchair for the rest of my life. My very first words were “F*** you”. They were faint, and hard to get out, but he had to know what I was thinking. Over the next few months I continued my therapy daily. Eventually I was walking with a wlaker. Then my therapy was cut from 5 days a week to 3. And again over many, many months I began to walk with a cane. My tremers are bad in the AM before my meds, my muscles feels like they are constantly being torn. But now I am duing therapy on my own, I can still only lift 2lbs, I have lost over half of my muscle tissue. They say I may never get that back, also eventually I WILL be back in a wheelchair. I can type with 2 fingers, I used to type 80wpm. I have trouble with my vision, My left eye is now considered a “lazy eye”. When I am tired, or look at the computor for too long it gets a mind of its own. My ligaments in every joint are kinda like broken rubber bands, my joints are what they call “free floating”. So, beginning in Sept I am going to start a series of surgeries on them to tighten the ligaments. I have constant pain, never letting up. Not even for a minute. I go once a week to a Chiropractor because my muscles pull my bones out of place. I also have a massage once a week to help keep me limber. Mind you, I am a former swimmer, loved to run, play volleyball, softball, or pretty much any outdoor sport. Now I have the body of a 80 year old (according to all my docs) and the life of one too. CPM/EPM has stolen everything from me. The only thing I enjoy now is watching my kids screw around in the yard and watching birds. My hands are so weak I can’t even enjoy baking or cooking. Hope this helps, I appreciate your site because I don’t have to say all this stuff on facebook, or even inspire. Sick, just sick to death of this disease. Deb

The following describes her experiences with tremors, a problem that I’ve described in previous posts:

The tremors, Mine are really bad in the AM before my meds. After my meds, they get better. If I am doing anything with my hands for too long they will get bad. I have to have an easy hairstyle because I don’t have the control to “do” my hair. If I hold the hairdryer for too long They will start to shake and cramp. I have an experiment for you; Take your thumb and 1st finger and make a “o” with them. Your thumb should point out at the joint closest to your hand. If it doesn’t you have significant muscle loss. Mine is completely flat, my “o” is more the shape of an egg. Give it a whirl. let me know what you find.

In regards to her experience with how she experienced improvements, but over time, she experienced a decline in her health:

Yes, I have had a decline in my health where things initially improved. I have the same issue with recall, I get so pissed at myself! I can remember things that make me angry or upset just fine, but any happy memories just fade away…… My thumbs face a weird way too when I try to make my “o”. My occupational therapist was the first to notcie it. Also, every morning I cry when getting up, all my joints and muscle are so tight it is rediculous! That’s why I do yoga, it help stretch things back out. What is happening is when you sleep your spasticty is causing your joints and muscles to tighten. So, when you wake in the AM, your body needs to move, if you didn’t move would become “stuck” . I have the reading issues as well, haven’t read a book in almost 4 years. All for now. Deb

………I have been pretty lucky as far as docs go. Since they don’t know much about my disease they take my word for pretty much most of the time. My new issues are my thyroid. I now have hypothryoidism. Never had any issues ever before in my life. My memory sucks as well. I have issues with concentration and my spelling. I could spell anything before, now I have to think thru a word, and sometimes I still get it wrong. I am very spastic, my movements are almost robot like. They have gotten better in some ways, and worse in some ways………

You can read more about spasticity through the blog post I made that included the information that Deb provided.

In regards to the emotional issues related to CPM/EPM, which I touched upon in my previous posts:

….. I know exactly what you are talking about. I still struggle with these things and my cpm/epm happened 3 1/2 years ago. And your right, I never feel truly happy. I can feel good about things that happen to other people. I have lost all of my family (mom, dad, brother, sister) because I just tell it like it is. Things I kept bottled up for 30 years just came flying out of my mouth, I had no control. It was like I was another person. Most of my husbands family has walked away too. They just can’t handle my brutile honesty. Things just blurt right out. I have no control. Before I know what I am saying people are standing there with their mouthes hanging open, just stairing at me. Whatever I am thinking just fly’s out of my mouth! I am almost always so close to tears all it takes is one weird look from someone, anyone and I am crying. In fact yesterday, I told my husband I think I need to find someone to talk to. Someone who justs listens and has no judgement. Since this happened I have felt useless. I have tried every kind of “hobby” you can imagine. Most I can’t do because of my hands, and the rest I just don’t have the patience for. I have been reading your blog on a regular basis, and I think it;s great!……..

Deb has also left several comments on the importance of using sea salt. There is a growing recognition on how sea salt is the better type of salt to use, but I haven’t researched it myself, so I don’t know where the difference is.

…….Also, I have seizures when my sodium gets down to 128. That is the “magic number”. Since my incident, my sodium has been pretty well controlled. I read an article that if you eat sea salt on everything it won’t raise your blood pressure, but also give you what you need. I eat it on everything!!! ……

…….I have been writing to Dr. OZ for 3 years. Also Dr nancy from the Today show. But they don’t want this info out. It would ruin their “salt is bad” campain. They are right, table salt is bad, but sea salt couldn’t be any better for you………..

I hope to post more regarding how CPM/EPM has impacted others, so please feel free to leave me comments, etc if you would like to participate. I really believe this is the only way we”ll ever be able to express our stories in their fullest. Medical journals do not research symptoms or experiences that we suffer from long term. There’s just not enough information regarding our experiences, so we will have to document them ourselves.

THANKS, DEB!!! Hopefully, you will be the first of many 😉

Related articles
Posted in Your Hyponatremia/CPM story: and tagged , , , , , ,
15 Jun 2012
3 Comments

Spasticity

This post is brought to you by my friend Deb. She has CPM/EPM too.  She’s had it for four years, and her story is one of determination and strength. She is truly amazing. I am going to start listing her story under the “Your Hyponatremia/CPM story” section, but this information on spasticity was gathered by her.

Thank You, Deb, for your help!! 🙂

Submitted on 2012/06/11 at 2:11 pm

Here is some info on spasticity and how it effects your body;
Spasticity is a muscle control disorder that is characterized by tight or stiff muscles and an inability to control those muscles. In addition, reflexes may persist for too long and may be too strong (hyperactive reflexes). For example, an infant with a hyperactive grasp reflex may keep his or her hand in a tight fist.

What Causes Spasticity?

Spasticity is caused by an imbalance of signals from the central nervous system (brain and spinal cord) to the muscles. This imbalance is often found in people with cerebral palsy, traumatic brain injury, stroke, multiple sclerosis, and spinal cord injury.

What Are the Symptoms of Spasticity?
Increased muscle tone
Overactive reflexes
Involuntary movements, which may include spasms (brisk and/or sustained involuntary muscle contraction) and clonus (series of fast involuntary contractions)
Pain
Decreased functional abilities and delayed motor development
Difficulty with care and hygiene
Abnormal posture
Contractures (permanent contraction of the muscle and tendon due to severe persistent stiffness and spasms)
Bone and joint deformities

How Is Spasticity Diagnosed?

Your doctor will evaluate your medical history in order to diagnose spasticity. He or she will look at what medications you have taken and whether you have a history of neurological or muscular disorders in your family.

Several tests can help confirm the diagnosis. These tests evaluate your arm and leg movements, muscular activity, passive and active range of motion, and ability to perform self-care activities.

How Is Spasticity Treated?

Treatment for spasticity may include medications like Lioresal, Zanaflex, Dantrium, Valium, or Klonopin. Occupational and physical therapy programs, involving muscle stretching and range of motion exercises, and sometimes the use of braces, may help prevent tendon shortening. Rehabilitation also may help to reduce or stabilize the severity of symptoms and to improve functional performance. Local injections of phenol or botulinum toxin may be used to relax specific muscles. Surgery may be recommended for tendon release, to cut the nerve-muscle pathway, or to implant a baclofen pump (intrathecal baclofen therapy).

Learn more about baclofen pump therapy.

How Painful Is Spasticity?

The pain associated with spasticity can be as mild as a feeling of tight muscles, or it can be severe enough to produce painful spasms of the extremities, usually the legs. Spasticity also can cause low back pain and result in feelings of pain or tightness in and around joints.

What Is the Outlook for People With Spasticity?

The outlook varies per person. An individual’s outlook depends on the severity of his or her spasticity and any disorder associated with the spasticity

I am including a few additional videos of spasticity. Please understand that these are demonstrations of extreme spasticity, and there can be ranges from slight to extreme. Also, I am including links to articles that I think are interesting. I live in Ohio where medical uses of marijuana are not allowed, but considering the drugs that I’ve been on in the past year to try to treat my pain, cramping, etc. If it was available legally,  I think I would try it.

The following video shows extreme spasticity:

http://www.youtube.com/watch?feature=fvwp&v=wfYNgYgEUoQ&NR=1

The following video shows a person who is improving from spasticity after therapy and baclofen pump:

http://www.youtube.com/watch?v=V2_3lXMKT7Q

Explanation of spasticity due to central nervous system:

http://www.youtube.com/watch?v=lEtkIIoo-3c&feature=related

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Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged , , , , , ,
05 Jun 2012
21 Comments

Pity Party:

I’m almost at the one year point in recovery. It’s been a long year.

Part of me believes that I should be celebrating everything that I’ve accomplished and lived through in the past year. I probably shouldn’t be here, but part of me hates this “new” me. I am not the same person I was a year ago, and it’s so emotionally and physically distressing.

Frankly, I want to sit down and cry.

I’m sure my cognitive therapist, Angela, would tell me that’s depression, but I think it’s more human nature.

I’ve LOST something, and that something is HUGE. I’ve lost the direction of where my life was going, and I haven’t been able to figure out where this “new” life is taking me.

I’m not going to try to deny that my life wasn’t fantastic before my brain injury. I was sick then, and my life was incredibly hard, but I was able to live with those health issues. I was able to take baby steps towards my goals in life.

After I was told that I had the pituitary tumor and it could be removed, I had a solid belief that my life and health would get better. I wouldn’t be able to regain my 20’s, but I could LIVE through my 30’s.  I could manage the illnesses, and I wouldn’t get worse from that point.

Living through my life with my prior health issues was like climbing Mount Everest. Living through my life after the brain injury is like climbing Mount Everest in roller skates.

It really feels fruitless, and in this current state of mind, I would have to agree with Angela, I am depressed….SUPER depressed.

You might be wondering, why in God‘s name are you depressed right now?? You’ve made it soooo far. You aren’t in a wheelchair. You are able to do things in your life that some people are never able to do: walk, talk, eat.

All of those things are true. On one hand, I do feel incredibly blessed, but on the other hand, I feel horribly “picked” on. Why does my burden seem so much heavier than others?

I wonder if Christopher Reeves felt the same way, or Michael J. Fox? I mean, they were both in the prime of their lives when they developed incurable, life long issues, but unlike me, they turned their health catastrophes into platforms to advance medicine for spinal cord injuries and Parkinson’s disease.

Do I dare compare my life to theirs?

I don’t know enough about either person to know if they lived through anything close to what I have, but where I’m floundering and they succeeded: they turned their lemons into lemonade.

Why can’t I?

I know several people now that have CPM/EPM. I know that NFL players are killing themselves over their brain injuries.

If my goal in life was to help other people through becoming a doctor, then why I haven’t I been able to shift gears and find purpose in making hyponatremia and CPM/EPM household names? Help those with CPM/EPM and other forms of brain injuries?

I’ve spent over a month wallowing in pity, feeling more and more distressed over how my life has changed, and I would be lying if I said by the end of this post that I will spontaneously snap out of my depression and tomorrow everything will be better. I only hope that by tomorrow, I can start to develop new strategies and find help for myself that I can still help others.

All parties have to come to an end at some point, even pity parties.

 

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