Saturday News

Contents of This Week Saturday News June 20th / 2015

• Definition: Cavernous Hemangioma (aka Cavernous Angioma, or Cavernoma)

      Cerebral Cavernous Malformation - Cavernous hemangioma, also called cavernous angioma, or cavernoma (often when referring to presence in the brain), is a type of blood vessel malformation or hemangioma, where a collection of dilated blood vessels form a tumor. Because of this malformation, blood flow through the cavities, or caverns, is slow. Additionally, the cells that form the vessels do not form the necessary junctions with surrounding cells and the structural support from the smooth muscle is hindered causing leakage into the surrounding tissue. It is the leakage of blood, known as a hemorrhage from these vessels that causes a variety of symptoms known to be associated with this disease. A longer definition comes from Wikipedia.

• Video: Cavernous Hemangioma (aka Cavernous Angioma, or Cavernoma)

        -- Angioma Alliance Founder: Connie Lee
        -- Treatments for Primary Cavernous Angiomas
        -- Cavernous Angioma
        -- My Story: Living with a Cavernous Angioma
        -- Interview with Angioma Alliance member Kristen Fowler
        -- Six Word Stories | Angioma Alliance | #BrainsShouldntBleed
        -- Cavernous Angioma and Children
        -- Cavernous Angioma Awareness Day
        -- Living With Multiple Cavernous Malformations (Patti's Journey)
        -- Angioma Alliance Children Living with Cavernous Angiomas
          SSTattler: Two examples of real surgery below... do not view it if you are squeamish! 
        -- Cavernous Angioma
        -- Brain Stem-Pontine, Cavernous Angioma With Bleed


• Headline Blog: Cavernous Hemangioma (aka Cavernous Angioma, or Cavernoma)
• The Problem With a Rare Disease Diagnosis
• The FAST Campaign Is Not Working
• Spreading Awareness About Cavernous Angiomas
• GIANT Sigh of Relief!
• Attitude is Everything!

• Eclectic Stuff: Many articles from many Guest Bloggers about Stroke
• Just to Let You All Know... Last Blog by Nick
• Weight Loss Clinical Trials: Weekend Links
• The Hundred Stones
• Too Soon for Certainty, But a Potential Way to Recover Stroke Patients' Limbs
• Brainy Laughs or, Keep Chuckling to Prevent Madness
• Socializing, Play and Moving Helps Drive Recovery
• Control

• Weekly Columnists
• Musing: Drug Prevents Cerebral Cavernous Malformation In Mice; Could Replace Surgery
• Sunday Stroke Survival: Redefining Disability Project - Post #27
• Caregiver: A Tribute To Bob
• Tadpole Update: Reported to June 19th
• Jester: Six Short Stories
• TED Talks - Donald Hoffman: Do We See Reality As It Is?
• Rick Mercer Report: Rick and Zero Gravity
• Laid-Back Admin: No Posts This Week

• Daily Comics: For Better Or For Worse, Dilbert, Mayes, Doonesbury

• Future Topics in SSTattler

Saturday News | Future Topic
--------------+----------------------------------------------
Jun/27/2015   | Solitude
Jul-Aug/2015  | Summer Break 2015 (articles ordered by date)

Definition: Cavernous Hemangioma (aka Cavernous Angioma, or Cavernoma)

Cavernous Hemangioma From Wikipedia,
      the free encyclopedia

Cerebral Cavernous Malformation

Cavernous hemangioma, also called cavernous angioma, or cavernoma (often when referring to presence in the brain), is a type of blood vessel malformation or hemangioma, where a collection of dilated blood vessels form a tumor. Because of this malformation, blood flow through the cavities, or caverns, is slow. Additionally, the cells that form the vessels do not form the necessary junctions with surrounding cells and the structural support from the smooth muscle is hindered causing leakage into the surrounding tissue. It is the leakage of blood, known as a hemorrhage from these vessels that causes a variety of symptoms known to be associated with this disease.

Cause

Cavernous hemangiomas can arise nearly anywhere in the body where there are blood vessels and are considered to be benign neoplasms (noncancerous tumors). They are often described as raspberry like because of the bubble-like caverns. Unlike the capillary hemangiomas, they can be disfiguring and do not tend to regress. Most cases of cavernomas are considered congenital, that is present from birth; however, cavernous malformations can develop over the course of a lifetime. While there is no definitive cause, research shows that genetic mutations result in the onset of this malformation.

Diagnosis

Video: Cavernous Hemangioma (aka Cavernous Angioma, or Cavernoma)

Angioma Alliance Founder: Connie Lee

Published on Oct 22, 2012

From the "Joy in Our Town" program interview with Tanya Street

Courtesy of WTPC, Virginia Beach

Standard YouTube License @ AngiomaAlliance

Headline Blog: Cavernous Hemangioma (aka Cavernous Angioma, or Cavernoma)

Definition: Blog (noun). Add new material to or regularly update to a blog. (Origin 1990s: blog shortening of weblog)

The Problem With a Rare Disease Diagnosis

Elizabeth
Thankful for Every Day!

Monday, May 18, 2015

SSTattler: Re-published May 23/2015 The Problem With a Rare Disease Diagnosis in Stroke Survivors Tattler.

Six months after the birth of my first child, I was diagnosed with a cavernous angioma. I never expected to have my life changed in so many ways. While cavernous angiomas are actually very common (one in every 500-600 people have them). They are still considered "rare" because most people that have them never know it as only about 30% of those with angiomas become symptomatic. Common onset symptoms can vary but often include:  seizures, stroke symptoms, hemorrhages, and headaches. Typically, a diagnosis only comes after an individual becomes symptomatic and has an MRI. The most common age for a diagnosis is in a person's 20-30's even though most people are born with their angiomas. Some people only have one (sporadic) or others have many/multiples (genetic).  By definition, cavernous angiomas, are abnormal clusters of blood vessels often resembling a raspberry configuration. The problem is that the lining of the blood vessels in cavernous angiomas are grossly dilated/defective, they have thin, weak walls that can leak or bleed easily. When these cavernous angiomas are in the brain and spinal cord and they bleed... They often become problematic.

Well, that's exactly what happened to me. When mine starred to bleed after my first pregnancy, I became symptomatic (dizzy, spacey, feeling weird, eyes not working right, etc). At first, I thought it was due to sleep deprivation, hormones, and everything new moms go through. By 6 months postpartum, I went to the doctors. Of course, they were sure I had postpartum depression. I insisted otherwise. No, I was not depressed but something was wrong. Eventually, I got an MRI which showed a 2.2cm cavernous angioma in the insular cortex....incidental finding....ugh!

The FAST Campaign Is Not Working

Rebecca Dutton
Home After a Stroke

June 25, 2013

The American Stroke Association (ASA) and the National Stroke Association (NSA) try to get people who are having a stroke to the emergency room quickly with their FAST campaign. FAST stands for face (sagging on one side), arm (weakness in one arm), speech (impaired), and time lost is brain lost. However, these are warning signs for strokes that affect the front of the brain. The ASA estimates that 25% of strokes cut off the blood supply to the back of the brain where vision, balance, and coordination are controlled. One type of a stroke that affects the back of the brain is a lacunar stroke. A lacunar stroke is caused by small blood vessels in the brainstem that get clogged by cholesterol. The brainstem includes the bridge to the cerebellum that controls balance and coordination. A second type of stroke that affects the back of the brain is a brainstem cavernous angioma. An angioma is a cluster of abnormally dilated blood vessels that begin to bleed. A third type of stroke that affects the back of the brain is stenosis of the vertebral artery. This artery runs up the inside of the neck vertebrae and provides blood for the brainstem. When stenosis narrows the vertebral artery people are more vulnerable to having a stroke when a chiropractor bends their neck. Think of a kink in a garden hose that stops the water from flowing.

Spreading Awareness About Cavernous Angiomas

Elizabeth
Thankful for Every Day!

Monday, January 16, 2012

Since being diagnosed with a cavernous angioma in September 2009, my life has changed greatly. I never really had a "cause". Many people are touched by one thing or another along their path of life and they get motivated to make that their "cause". While I had been touched by many things, no specific thing moved me like this diagnosis and all the emotional ramifications that this diagnosis created for me. In finding Angioma Alliance, I have also made dear friends that share in this dreadful diagnosis...many of them have it much harder than I do/did. I was blessed to hopefully only have one bleeding mess in my brain. Some of my friends have multiples or they have them in a location that prevents surgical treatment. For many of my friends there is no cure yet. :( I hope that will change in time, and I intend to do my part to help be a part of the cure. I have taken on trying to spread awareness about cavernous angiomas as a part of trying to better the lives of "us" afflicted with this condition.  While I...hopefully.. no longer have a cavernous angioma I will always identify with those afflicted. I have been there/done that! I understand how hard it is to live with the uncertaintly, the bleeding, the seizures, the deficits, the surgery, and the recovery.

GIANT Sigh of Relief!

Elizabeth
Thankful for Every Day!

Sunday, March 27, 2011

I had a 3 month follow-up MRI last week, and according to my local neurologist and neuro-radiologist my cavernous angioma had only been partially removed!! This is NOT what we wanted to hear. I had this scary surgery so that we could be done with cavernous angioms...done with bleeding brains...done with worrying about every headache...done with seizures.... and done with every strange neurological symptom that may arise as a result of the monster that was in my head. According to these two ladies, my latest MRI showed a small piece of the very monster we had hoped was gone forever. The problem lies in the fact that these things(cavernous angioms) are known to regrow and re-bleed (please, never again!!!) if they are not removed completely ...hence why we researched the surgeon so explicitly and why we went to Dr. Spetzler specifically. He is supposed to be one of the world's best neurosurgeons specializing in cavernous angioma resections(removals). As scary as the surgery was, and as challenging as my recovery has been, I am still ok with the whole process as long as the thing is out of my head...completely!!! I have not had very reliable MRI readings here locally though...so for the past week we tried to remain hopeful that this was just par for the course and consistent with my past experiences...Maybe the local doctors had misinterpreted the latest MRI? Yep!! Same old routine. We sent my latest MRI to Dr. Spetzler as soon as we received the bad news; and his resident called Thursday night to give us the good, very good news that my cavernous angioma has, in fact, been fully resected! Yippee!!

Attitude is Everything!

Elizabeth
Thankful for Every Day!

Sunday, September 1, 2013

Well maybe not everything, but one should never discount the power of a positive attitude. I whole heartedly believe that a big part of my miraculous recovery is attributable to my relentless positive attitude and my intentional focus on all things that are positive. Some people, especially negative people, like to discount attitude as a contributing factor in any survivor's success or lack of such in their own recovery. It's probably because they don't want to admit that their "bad"/negative attitude is preventing and/or limiting their own recovery. In reality, they should be looking for ways to foster a more positive attitude that can only possibly aid in recovery. Attitude is something that you can control and change. With so many unknowns involved in brain injury and recovery, it seems crazy to deny the possibility that bringing your most positive thoughts and attitude could aid in your recovery. I've certainly never heard of anyone ever blaming a positive attitude for a failed or unsuccessful recovery. Some survivors also don't want to or are afraid of taking ownership of or responsibility for their recovery. I think that too is a mistake. Own it, drive it, force it, will it, demand it, make it happen. If what you are doing isn't working, change it, get new therapists, try new therapies, change your thoughts.Whatever you do, stay positive and think YOU CAN change it, unless you are happy and satisfied where you are at. Many doctors and therapists are pessimistic...there is NO room for that negativity in your recovery. When you give up, start buying into the restrictions and limitations negative people place on you, or stop trying with all your heart, it's OVER!! By no means am I saying, that ALL anyone needs is a good attitude and positive thinking to recover. There are many factors(age, area damaged both how much and what part/parts, what type of damage, inherent survivor personality, motivation, ability, prior physical condition, other medical issues, medications, on and on) involved aside from one's attitude. I'm basically saying that while some things are a given and not changeable like your age. Your attitude is one factor that you CAN control and it can help or hurt you.

If you or anyone you know is struggling with a negative attitude especially while faced with a health crisis....look for help asap. There is tons of research on the benefits of positive thinking and an optimistic attitude. There are also tons of ways to change your thought patterns.

Eclectic Stuff

Definition: Eclectic(noun) a person who derives ideas, style, or taste from a broad and diverse range of sources

Just to Let You All Know... Last Blog by Nick

Sas Freeman

June 15, 2015

Two Strokes Not Out

Just to let you all know that Sas has been allowed home now, providing she rests and is with someone, me!! She is much better but still not feeling up to reading and is very sleepy.

She is having to take many new and additional tablets, so hopefully once the body adjusts, she will begin to feel better.  Sas has to go back to the hospital though tomorrow for an unpleasant test so tomorrow won’t be a day of feeling well at all.

She thanks everyone for their kind wishes and hopes to be back on twitter and blogging very soon.

See the original article:

Just to Let You All Know...  Last Blog by Nick

in

Sas Freeman

Weight Loss Clinical Trials: Weekend Links

Bill Yates
Brain Posts

Posted 17th January

Randomized clinical trials provide one of the best ways to test new obesity interventions.

These types of trials can examine effects of specific diets, new pharmacological treatment and new surgical treatments.

Here are some of the recent published trials that caught my attention in the last years.

Clicking on the title will take you to the PubMed abstract for more information. Additionally, some of the abstracts will have links to full-text manuscripts.

Lorcaserin: Safety and efficacy

This manuscript examined the results and safety of two previously published randomized trials of locarserin leading to FDA approval for obesity. Lorcaserin is a serotonin receptor 2 agonist. This manuscript noted more weight loss with this drug at one year (5.8% of body weight vs 2.5% of body weight for placebo). The drug appeared safe with no evidence of heart valve problems previously seen in some weight loss drugs.

Exercise effects in obese adolescents

The Hundred Stones

June 18th 2015

A Story

Speech Therapy for Aphasia

As many of you know, I have the distinct honor and privilege of working with some wonderful individuals with aphasia and their family members in London.  One of the biggest challenges for me has been how to provide speech and language stimulation in a language that is foreign and not my own.

The stimulation of language has many “secrets.”  One must be competent and conversant in the language of the person you are helping if you are to be truly successful helping people speak with improvement and clarity.

Therefore I have two students who have read The Teaching of Talking from cover to cover and can just about quote it verbatim.  This has been a rare occurrence.

The two gentlemen have been schooled in very religious education, quite unlike secular education, and also their native tongue is Yiddish, which is unlike the rest of the population in the UK, and the world.

Too Soon for Certainty, But a Potential Way to Recover Stroke Patients' Limbs

Jeff Porter
Stroke of Faith

Thursday, June 11, 2015

Appears to be good news, with a large grain of salt.

Photo from Belén Rubio Ballester

I've seen several references how the use of virtual reality technology could help stroke patients recover the use of a limb. The idea is to have the limb represented on a computer screen, performing better than it performs in real life, which then makes the limb's functions improved in real life.

The grain of salt: It's from a study of just 20 people. Worth more research, but still a "maybe" at this stage.

You can read more through this link to a story about virtual reality and stroke patients:

In the study of 20 stroke patients, researchers sometimes enhanced the virtual representation of the patient's affected limb, making it seem faster and more accurate, but without the patient's knowledge. 

After the episodes in which the limbs were made to seem more effective, the patients then went on to use them more, according to lead researcher Belen Rubio. 

"Surprisingly, only 10 minutes of enhancement was enough to induce significant changes in the amount of spontaneous use of the affected limb," said Mrs Rubio from the Laboratory of Synthetic, Perceptive, Emotive and Cognitive Systems at Pompeu Fabra University in Spain.

See the original article:

Too Soon for Certainty,
But a Potential Way to Recover Stroke Patients' Limbs

in

Stroke of Faith

Brainy Laughs or, Keep Chuckling to Prevent Madness

Tim Seefeldt
Brain Food Cafe for the Mind

Posted June 14, 2015

This week’s offering was born in a public men’s room at a highway diner outside of Red Deer, Alberta.

It was a Sunday evening and my wife, Patricia, and I were on our way back to Sherwood Park from a couple of days in Banff, where we’d gone to soak in the energy of the Rocky Mountains and to steel ourselves for some upcoming tricky business.

I spotted an odd sign the moment I stepped in to the men’s. It was hand written on white computer paper. It seemed very important, as if I’d better read it before doing anything else. So I put my stroke damaged free style reading skills to work to make out what it said. At turtle speed, I worked through the words. Then I shook my head and gave it a second scan, not sure that I’d gotten it right the first time.

But I had.

The sign said: As a courtesy to the next customer, please flush the toilet.

Now, I thought, why was that sign necessary? Then, before taking another step I had a second thought. If the sign was necessary, maybe I don’t want to be in here.

If I read this pre-stroke, I’d likely have paid it no attention.

Socializing, Play and Moving Helps Drive Recovery

Peter G. Levine
Stronger After Stroke

Tuesday, May 26, 2015

Part of your recovery may depend on how much fun your having while you recover.

Enriched environments (EE) are what we all want. It's why we send our kids to good schools, why we seek out new experiences and why we travel.  It turns out that enriched environments are very good for the brain. One of the main enrichments of environment that humans have is social interaction.

What do enriched environments have to do with stroke recovery? A ton.

What hurts social interaction? A stroke.

It turns out that there's pretty good evidence that stroke survivors engaged in enriched environments recover more. More than what, you may ask. Survivors involved in environments rich in social interaction, physical activity, and interesting experiences recover more than survivors who are not in enriched environment.

There is one caveat… Most of this research has been done on animals. The reason was done in animals is that it would be impossible to do the same sort of research and humans. Imagine a human study like this would go…

You would have to groups:

Control

Amy Shissler
My Cerebellar Stroke Recovery

February 20, 2015

Hi everyone. :-) Long time no talk. My plan was to take a break from blogging for a month or 2 as I build back up a semi-normal life but Dean f’ed up my plan by e-mailing me and asking me a question that I kinda thought was brilliant so I had to write a post about it. I asked Dean for his permission to share this so HIPPA police stay away from me. He asked about a foot issue that he is having, that it’s landing wrong during the gait cycle. Then he asked for exercises that would further increase the offending motion and in my orthopedic PT brain I thought “uhh why would he want to do that?” He told me that “I want to work on both inward and outward motion because I think doing both will cause neuroplasticity to take place faster.”

Brilliant!

Yes, I totally agree. Oh man. So Dean’s issue is that when he walks his foots lands wrong and turns outward. For an orthopedic issue – well let’s just get the opposite muscle really strong and fix the motion. For a neuro issue, can’t think like that. It makes so much sense what Dean proposed – to work on the motion that’s bad and causing the issue and gain more control over it. Gain more control, and then….well you’ll be able to control it better and in turn hopefully decrease the problem. So, the motion that’s causing him the issue is that due to his spasticity, his left foot hits the ground in a position of eversion. It doesn’t land straight forward like a good foot should.

So he asked me for exercises that would further force it to turn outward, and I was thinking, “whaaaaa?” And then a few seconds later I thought it was genius of him to come up with that.

See the original article:

Control

in

My Cerebellar Stroke Recovery

Weekly Columnists

Definition: Columnist |ˈkäləmnist| (noun). A blogger or a journalist contributing regularly to a blog or newspaper

Musing: Drug Prevents Cerebral Cavernous Malformation In Mice; Could Replace Surgery

Dean Reinke
Deans’ Stroke Musing

Tuesday, November 8, 2011

Drug Prevents Cerebral Cavernous Malformation In Mice; Could Replace Surgery - A drug treatment has been proven to prevent lesions from cerebral cavernous malformation - a brain blood vessel abnormality that can cause bleeding, epilepsy and stroke - for the first time in a new study.

The drug fasudil, which prevented the formation of lesions in a genetic mouse model of the disease, shows potential as a valuable new tool in addressing a clinical problem that is currently treatable only with complex surgery.

"The results are very exciting because they represent the first-ever evidence of a drug effect on the development of cavernous angiomas in living animals," said Issam Awad, MD, professor of surgery at the University of Chicago Medical Center and senior author of the study appearing in the journal Stroke. "The result was very dramatic. The prevalence of lesions went down significantly, and the lesions that developed in the mice were simpler and smaller and did not show any inflammation or bleeding."

Cerebral cavernous malformation (CCM), also known as cavernous angioma, occurs when small blood vessels of the brain grow abnormally large and irregular. The walls of these blood vessels can become stretched and thin, occasionally leaking blood into the brain and leading to hemorrhages, seizures, vision or hearing problems, and strokes.

Sunday Stroke Survival: Redefining Disability Project - Post #27

Jo Murphey
The Murphey Saga

Tuesday, May 5, 2015

What barriers do you encounter in your daily life when it comes to disability?

 As you can imagine only having one side of your body totally undependable and not having the ability of clear speech is definitely limiting.

Until just recently, I could not stand and walk for any great length of time or distance. The spasticity in my lower leg from my stroke made it too painful. I couldn't push a grocery cart around a store for more than fifteen minutes. Try shopping in Wal-Mart like that. Since the dry needling has shut down the spasticity to a dull roar, it's considerably easier getting around on foot power alone.

With my shoulder regaining most of it's mobility, thanks to the needling to my bicep, I'm able to carry things positioned between my elbow and body, and under the arm better. It's almost like being normal again. Well sort of. The headache of how I was going to carry a drink while walking with a cane in my functioning hand is remedied. But still not being able to use my right hand and wrist is very limiting.

My speech though improved is still halting with the aphasia. I'd rather do emails than talk on the phone. Staying on topic is still problematic.