Friday, June 26, 2015

Mifepristone. Mifeprex, Corlux, Korlym, progesterone inhibitors

Mifepristone: An Overview

Mifepristone (RU-486) was the first antiprogesterine to be developed for clinical use




 Here are two of the most recent reports I found
Efficacy of the Progesterone Receptor Antagonist Mifepristone for Palliative Therapy of Patients with a Variety of Advanced Cancer Types
JEROME H. CHECK, EBONY DIX, RACHAEL COHEN, DIANE CHECK and CARRIE WILSON
+ Author Affiliations
The University of Medicine and Dentistry of New Jersey, Robert Wood Johnson Medical School at Camden, Cooper Hospital/University Medical Center, Department of Obstetrics and Gynecology, Division of Reproductive Endocrinology and Infertility, Camden, New Jersey, U.S.A.
Correspondence to: Jerome H. Check, MD, Ph.D., 7447 Old York Road, Melrose Park, PA 19027, U.S.A. Tel: +1 2156354156, Fax: +1 2156352304, e-mail: laurie@ccivf.com 

Abstract Background: Mifepristone has been demonstrated to improve longevity and quality of life in mice with spontaneous murine cancer without progesterone receptors and in human colon cancer. The present study evaluated the palliative effect of mifepristone in a variety of different types of human cancer.
Patients and Methods: Mifepristone was given at 200 mg daily orally with permission from the Food and Drug Administration to people with widely metastatic human cancer no longer responsive to other chemotherapy regimens.
Results: Improvement in pain and energy and/or length of life was found in thymic epithelial cell carcinoma, transitional cell carcinoma of the renal pelvis, leiomyosarcoma, pancreatic carcinoma, malignant fibrous histiocytoma and another case of adenocarcinoma of the colon.
Conclusion: Our data demonstrate a palliative role for the use of mifepristone in cancer therapy. Progesterone receptor antagonists(inhibitors) should be given a therapeutic trial in larger controlled studies of various malignancies in humans.

Key words: Metastatic human cancer palliation progesterone receptor antagonist tumor microenvironment mifepristone
--------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
Antiprogestin mifepristone inhibits the growth of cancer cells of reproductive and non-reproductive origin regardless of progesterone receptor expression
Chelsea R Tieszen , Alicia A Goyeneche , BreeAnn N Brandhagen , Casey T Ortbahn  and Carlos M Telleria
Division of Basic Biomedical Sciences, Sanford School of Medicine of The University of South Dakota, 414 East Clark Street, Vermillion, SD, USA
 author email corresponding author email
BMC Cancer 2011, 11:207doi:10.1186/1471-2407-11-207
The electronic version of this article is the complete one and can be found online at: http://www.biomedcentral.com/1471-2407/11/207
  
. It is not only a progesterone inhibitor, but also acts as a glucocorticoid inhibitor The fundamental importance of progesterone for human conception and throughout pregnancy has meant that mifepristone has been used for emergency contraception :\"the morning after"  and as part of a safe medical abortion in the first and second trimester of pregnancy.
It has also been used as part of the therapy to manage fetal death in utero in the third trimester of pregnancy. There are many other uses based on its mechanism of action blocking cortisol and reducing the bleeding associated with uterine fibroids and shrinking them.

According to medical pathologists meningioma cells look the same under a medical microscope as uterine fibroid cells, in a subset of meningioma patients in NCI SWOG Phase 1 and Phase 2 it worked the same way on uterine fibroids with no serious risks of neurological injury from brain surgery and/or brain radiation. It had previously been tested on aggressive recurrent and multiple meningiomas after patients had exhausted both standard treatments and other experimental chemo drug therapies that may cause serious complications, late effects of radiation and death.

Key words: Cushing's syndrome, meningioma, pregnancy, progesterone, progestogen, RU486, therapeutic abortion

Introduction
Most health professionals will be familiar with the antioestrogens, clomiphene citrate and tamoxifen for breast cancer. These drugs have been used for years for conditions as diverse as infertility and breast cancer respectively. It was not until 1983 that a drug with antiprogestogenic activity was developed. Mifepristone was the first drug to compete and inhibit progesterone at its receptor, just like Tamoxifin the designer darling breast cancer drug competes with the estrogen .

Pharmacology
The progesterone receptor is one of several proteins synthesised by the action of oestradiol on the endometrium. This receptor is a dimer of two distinct proteins and binds progesterone which is a planar steroid. By contrast, mifepristone is a non-planar molecule. This bent, rigid, molecular structure seems important for anti steroid compounds.

Mifepristone binds to the progesterone receptor five times more avidly than progesterone. It also binds with the glucocorticoid receptor three times more strongly than dexamethasone. By contrast, mifepristone binds to the androgen receptor with only one quarter of the affinity of testosterone and has essentially no binding to the mineralocorticoid receptor or oestradiol receptors.
Approximately 85% of mifepristone is absorbed after oral administration. It has a long elimination half-life.
As mifepristone has antiprogestogenic activity, it has been studied in situations where its action may alter the course of conditions related to excess cortisol like stress related depression.

Meningioma
Meningioma is a generally benign tumor of the central nervous system. 80% of these benign tumors contain progesterone receptors. Unlike most breast cancer, meningiomas are commonly strongly progesterone receptor positive, only the more aggressive malignant ones 10% are oestrogen receptor positive. Mifepristone inhibits growth of meningioma cells in culture and reduces the size of human meningioma implanted into nude mice.
Patients with unresectable meningioma have been treated with oral mifepristone 200 mg daily for a median duration of therapy of 35 months (range 2–157 months). Several meningioma patients including myself and Doris Laird who testified in US Congress that it saved her life have safely and successfully taken it for more than 10 years.  In one series there were 19 women and 9 men with persistent or recurrent unresectable meningioma who already had serious side effects from multiple surgeries and radiation.  Eight patients responded to the therapy, as shown by reduced tumour size on computerized tomography or magnetic resonance imaging and improvement in visual field examination.  Endometrial hyperplasia (or benign endometrial changes as documented in Rochester study of fibroid therapy 2007) did occur in three premenopausal women, but did not prove dose limiting especially in view of its long-term safety used for patients with Cushing's syndrome.

Uterine fibroids
Uterine fibroids, or leiomyomata, are the most common tumours in women. The fibroids and their nourishing blood vessels are rich in progesterone receptors. Several trials have shown that mifepristone can reduce the size of uterine fibroids by 50% and effectively reduce menstrual blood loss. A recent randomised double-blind clinical trial of 10 mg mifepristone or placebo found that mifepristone reduced uterine and fibroid size and reduced menstrual blood loss. It also increased haemoglobin concentration so the female patients were no longer anemic and many did not need a hysterectomy as long as they took the drug.

Intrauterine fetal death
Progesterone is critical for establishing and maintaining pregnancy. The first WHO study in Australia used mifepristone to manage fetal death in late pregnancy. In these cases, the baby has died, but the placenta has not and it continues to synthesise progesterone for some weeks. This prevents labour and continues the pregnancy in very difficult emotional circumstances for any woman carrying a dead baby. For women with an unexplained fetal death in utero, and who have an unripe cervix, mifepristone typically induces delivery within 72 hours which can also eliminate the medical neccessity of a c section. I think most women would prefer not to be cut open.

Contraception
Mifepristone has been used as an emergency contraceptive. In randomised controlled studies, it is as effective as other regimens, such as those using levonorgestrel and saver than some of the new added hormone bith control pills. In WHO studies of emergency contraception within seven days of unprotected intercourse, mifepristone was effective at doses of 600 mg, 50 mg and even does as low as 10 mg.  This is important in low income countries with limited health care, few pharmaceutical resources and frequent early childhood death from malnutrition or human diseases like malaria.

Cushing's syndrome
As mifepristone is a glucocorticoid receptor antagonist, it has been studied in Cushing's syndrome. The first patient to be treated received mifepristone doses of up to 1500 mg daily for nine weeks. No adverse effects were observed. Some patients with Cushing's syndrome have been successfully treated with mifepristone for up to 10 years.

Recently, (SPRMs) selective progesterone receptor modulators have been developed. These drugs are the 'bio chemical successors' to mifepristone. They show partial agonist and partial antagonist effects on various progesterone target tissues. For example, Asoprisnil has antiproliferative effects on the endometrium and can decrease the size and growth of uterine fibroids by reducing uterine artery blood flow. Corlux is another brand name of Mifepristone that is being used to treat major depression.  It could help brain tumor survivors in two ways, those suffering from clinical depression post op which is quite common after the medical crisis is over and those at risk of gradual progression of residual tumor if every single bad cell was not surgically removed before they have to take the risks of completely zapping it with radiation.. 

Conclusion
In the 25 years since its safe effective use was first reported, mifepristone has been registered and widely used for safe medical abortion in many countries. These include the United Kingdom (since 1991), Sweden (1992), USA (2000) New Zealand (2001) and Australia (2006) Many other documented evidence based lifesaving uses are still off label uses. There has been so much political furor over its abortion and morning after pill use in the US that it is not easily available to other types of qualified medical specialists in this country, like endocrinologists, gynocologists and oncology doctors. They do not use it for medically beneficial uses in women's health care like meningiomas or fibroids simply because it is extra FDA paperwork hassle and the cost is not covered by insurance.  The American health insurance accountants and hospital lobbyists that follow the bucks are missing the boat here, In fact for private health insurers, Medicare and Medicaid it would be much cheaper to provide this drug than approximately 20 thousand brain surgeries a year and millions of hysterectomies 1/3 of all women eventually need to have for uterine fibroids. It could reduce US hospital costs immensely for all of us. 
 
I used a 2009 Australian medical report on Mifepristone as a template for some additional text in my own words I added above.   According to recent 2010-2011 research I think it blocks further tumor growth and shrink thousands of low grade pituitary adenomas, acoustic neuromas and vestibular shwannomas and some subset of ovarian cancers. Some cancer patients, male and female would certainly benefit from this old generic drug in terms of improving their overall quality of life and longterm survival rate as Doris Laird,  I and 40 others have done thanks to the Feminist Majority Foundation and the FDA . To fight rising cancer rates on a global scale, it could be produced cost effectively and FDA approved sooner than any other new drugs.

Again here are two of the most recent reports I found, there are many in PUB MED and I list them in other posts
Efficacy of the Progesterone Receptor Antagonist Mifepristone for Palliative Therapy of Patients with a Variety of Advanced Cancer Types
JEROME H. CHECK, EBONY DIX, RACHAEL COHEN, DIANE CHECK and CARRIE WILSON
+ Author Affiliations
The University of Medicine and Dentistry of New Jersey, Robert Wood Johnson Medical School at Camden, Cooper Hospital/University Medical Center, Department of Obstetrics and Gynecology, Division of Reproductive Endocrinology and Infertility, Camden, New Jersey, U.S.A.
Correspondence to: Jerome H. Check, MD, Ph.D., 7447 Old York Road, Melrose Park, PA 19027, U.S.A. Tel: +1 2156354156, Fax: +1 2156352304, e-mail: laurie@ccivf.com

Abstract Background: Mifepristone has been demonstrated to improve longevity and quality of life in mice with spontaneous murine cancer without progesterone receptors and in human colon cancer. The present study evaluated the palliative effect of mifepristone in a variety of different types of human cancer.
Patients and Methods: Mifepristone was given at 200 mg daily orally with permission from the Food and Drug Administration to people with widely metastatic human cancer no longer responsive to other chemotherapy regimens.
Results: Improvement in pain and energy and/or length of life was found in thymic epithelial cell carcinoma, transitional cell carcinoma of the renal pelvis, leiomyosarcoma, pancreatic carcinoma, malignant fibrous histiocytoma and another case of adenocarcinoma of the colon.
Conclusion: Our data demonstrate a palliative role for the use of mifepristone in cancer therapy. Progesterone receptor antagonists(inhibitors) should be given a therapeutic trial in larger controlled studies of various malignancies in humans.

Key words: Metastatic human cancer palliation progesterone receptor antagonist tumor microenvironment mifepristone
--------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
Antiprogestin mifepristone inhibits the growth of cancer cells of reproductive and non-reproductive origin regardless of progesterone receptor expression
Chelsea R Tieszen , Alicia A Goyeneche , BreeAnn N Brandhagen , Casey T Ortbahn  and Carlos M Telleria
Division of Basic Biomedical Sciences, Sanford School of Medicine of The University of South Dakota, 414 East Clark Street, Vermillion, SD, USA
 author email corresponding author email
BMC Cancer 2011, 11:207doi:10.1186/1471-2407-11-207
The electronic version of this article is the complete one and can be found online at: http://www.biomedcentral.com/1471-2407/11/207
 
 
 GBYAY Anne McGinnis Breen
See my ponytail bouncing and my smiley face winking at you? &;>)

2014-2015 Facts about Meningioma Survival

Meningioma

  • Meningiomas have the highest number of estimated new cases of all primary brain tumors in the US, with 24,980 cases in 2014 and 25,190 in 2015. I think California has 6 or 7,000 per yr and Arizona has about 900 per yr.
  • Meningiomas are the most frequently reported tumors in the  US, accounting for 36.1% of brain tumors overall (Figure 8a).
  • Non-malignant meningiomas with behavior codes /0 (benign) or /1 (uncertain) account for 98.5% of meningiomas reported to CBTRUS (Table 9).
  • Meningiomas are most common in older adults and least common in children (Table 10).
  • Incidence of meningiomas increases with age, with a dramatic increase after age 65. Even among the population aged 85 years and older, these rates continue to be high (Table 10).
  • Non-malignant meningiomas are 2.3 times more common in females as compared to males (Figure 12).
  • Incidence of meningioma is significantly higher in blacks than in whites (Figure 13).
  • Ten-year relative survival for malignant meningioma is 57.2% (Table 22).
  • Age had a large effect on relative survival after diagnosis with malignant meningioma: 10-year survival was 84.4% for ages 24–44, and 33.5% for 75+ (Table 23).
  • Incidence of meningioma varies significantly among regions of the United States (Figure 21). The highest incidence is found in the Middle Atlantic, while the lowest is in the West North Central region (I think California has 6 or 7,000 per yr and Arizona has about 950 per yr).
  • NY and NJ have the most m cases on the east coast. There is a CBTRUS Table for each state

  •  My notes AMB 
  • They have not yet published any actual 3, 5 or 10 year survival rates for low grade meningioma.  It was about 67% survival at 5 yr which is worse than the survival rate for breast cancer.  And a meningioma diagnosis is linked to an increased risk for breast cancer. 

CBTRUS Statistical Report: Primary Brain and Central Nervous System Tumors Diagnosed in the United States in 2007–2011


From Table 18.
Estimated Number of Casesa,b of Brain and Central Nervous System Tumors Overall and by Behavior by Major Histology Groupings and Histology, 2014, 2015  
 
 
  GBYAY Anne McGinnis Breen
1st bt surgery 1986, recurrence 1992, 2nd bt surgery2001,
NCI 1992 SWOG 9005 Phase 3 clinical trial FDA approved safe for longterm use
Mifeprex for meningioma 1996 to 1999 and again Feb 2005 to present day
Squamous cell carcinoma, half of upper left lung removed, Sept 2014
 
 See my ponytail bouncing and my smiley face winking at you? &;>)
 
Please scroll all the way down for my list of 28 questions (more like 150 items) to ask your medical team about brain tumor treatments plus facts about my successful individual NCI clinical trial experience with an alternative drug therapy RU486 Mifepristone generic (Brand names:  MIFEPREX,  CORLUX, KORLYM) Progesterone inhibitor for recurrent meningioma, my thoughts about depression and recurrence and my blog arguments about obsolete REFERENCE MAN 1990s EPA radiation risk calculations for women and children found at  http://gbyay.blogspot.com 
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
Keep your faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!




Saturday, May 16, 2015

Corlux (same as Mifeprex) for Cushing syndrome 2007

Endo and Health News from 2007 / Cushing's Help and Support
...tumor on the pituitary gland at the base of the brain... This Topic on the Message Boards Washington Post August 14, 2007 CORLUX for the treatment of Cushing's Syndrome, orphan drug designation Corcept is still determining its...
http://www.cushings-help.com/endo_news2007.htm - Dec 20, 2008 - Relevance: 100.00%
Current Clinical Trials / Cushing's Help and Support
...Drug: C2L-OCT-01 PR, 10 or 20 mg; Drug: C2L-OCT-01 PR, 20 mg 53 Recruiting A Study of the Efficacy and Safety of CORLUX in the Treatment of Endogenous Cushing's Syndrome Condition: Cushing's Syndrome Intervention: Drug:...
http://www.cushings-help.com/current_trials.htm - Dec 20, 2008 - Relevance: 76.00%

My old treatment update draft as of Jan 2009

I have been taking Mifepristone again a second time in an independent investigational study approved by the FDA to control my recurrent meningioma since Feb 2005 and according to my documented six month MRIs at the University of Arizona MRI Imaging Center my low grade 2 brain tumor is still stable, no change in Jan 2009.
It took a full year from March 04 to Feb 05 to get all the legal paperwork approved by the FDA, the Institutional Review board at the U of AZ and the brand name product Mifepex distributed by Danco Inc in NYC which has increased the cost of my off label use of the medicine from $5 a day to $15 a day in the past three years.

David Dunlap, who I met online in the JHU m email list many years ago, generously sent me his dear Linda Dunlap's extra month of daily doses of Mifeprex instead of throwing it away, after she passed away in August of 2008. she had been taking it successfully to control her meningioma regrowth without any serious longterm side effects since 1987. She was truly a great lady who helped many other people during her lifetime and is sorely missed by her many dear friends in California and those who read her website.

In 2007 the FDA approved Mifepristone in an orphan drug brand name Corlux for Cushing disease symptoms. (caused by a pituitary adenoma or compression of the pituitary gland which is centrally located in the brain by an adjacent low grade tumor of any kind)

Please look up Cushing disease symptoms to compare to your own current symptoms which was named after Dr. Harvey Cushing, the same great neurosurgeon who discovered and named meningioma brain tumors many years ago.

I highly recommend the ABTA publications and support services to all brain tumor patients and their loved ones.



To my dear bt family online and all my Meningimates,

I had a good time in Florida at the ABTA conference in Tampa and just handed out the rest of the free ABTA literature (BT Primer handbook and BT Medical Dictionary) from the American Brain Tumor Association I picked up in Florida to the new members of our local monthly BT support group in Tucson at UMC/AZCC, now a Banner Hospital where I had my successful left lung tumor removal surgery for squamous cell carcinoma lung cancer last fall, September, 2014. (It was found early and there was no lymph node involvement.)

I think these ABTA publications are a very informative gift for many of our fine doctors who may not have had a chance to read them either. Topics include a dozen specific brain tumor types and various surgery, radiation and chemo treatment options, comprehensive brain tumor support services, fund raising events and volunteer opportunities everyone should be made aware of as soon as possible. For the past twenty years the ABTA.org in Chicago and the National Brain Tumor Society on both the east and west coast have been my GO TO non profit organizations for individual support, regional events and educational resources for the complex needs and advocacy issues of all brain tumor patients and their caregivers.

For example, the ABTA Meningioma brochure lists eight less invasive drug treatment options (not standard surgery and radiation therapy) that have been used with some success and/or are being further explored and investigated in recent years for meningiomas. Some of you might want to ask your doctors about these clinical trial and investigational drugs. Hydroxyurea, and progesterone receptor inhibitors like the Mifepristone I take, Somatostatin analogs, Targeted molecular agents, Epidermal growth factor inhibitors (EGFR), Platelet derived growth factor receptors (PDGFR), Vascular endothelial growth factor inhibitors (VEGF), and Immunotherapy/the use of biological agents to stimulate your immune system.

For more information and printed materials contact the ABTA Careline at 1-800-886-2282 or visit their website at www.abta.org

Friday, July 5, 2013

Lost and Found: What brain injury survivors want you to know:



One of our dear Meningimates, Karen Armentani, shared this link from Brainline.org last summer and it says exactly what I still have to deal with every day socially and emotionally since two major craniotomies, first in 1986 and then again in 2000. Please share this handout with your family and friends.


Lost & Found: What Brain Injury Survivors Want You to Know


I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.


Created with the assistance of the "Amazing" Brain Injury Survivor Support Group of Framingham, MA.




Excerpted from Lost & Found: A Survivor's Guide for Reconstructing Life After a Brain Injury by Barbara J. Webster. © 20ll by Lash & Associates Publishing/Training Inc. Used with permission. http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html

Monday, June 17, 2013

Recovery from mild brain injury is a process



My dear readers,
This essay may help you and your loved ones learn to cope with any post treatment effects of brain surgery or brain radiation. I copied and adapted my own remix from the brain injury websites I listed below.
A sudden medical crisis, like a stroke or a heart attack, is a brain attack. Any serious brain injury, gun shot wound to the head or brain tumor diagnosis can be like a stroke and requires an amazing ability to embrace extreme contradictions both in the minds of those undergoing treatment and those trying to understand it from afar. In each case and with every different diagnosis, there is human suffering, there are psychic and emotional scars that will be felt and remain long after any medical intervention is over. Sometimes they, the patients will die and sometimes they will have permanent, mild or severe brain injuries, or a variety of functional mental ability losses that gradually progress over time. Once the immediate medical crisis is over, some satisfactions, some newborn social bonds, and some liberation from tired old routines are also often quite profound and meaningful. Change is the only constant and recovery is a process with many ups and downs.


One major gap I see between accounts of brain recovery and actual experiences are the focus on the percentage of people who live or die, like from gun shots or car accidents, not focusing on those who are permanently harmed and otherwise devastated by their remaining chronic condition and their constant need for assistance and on going medical care, often the patient is no longer the epicenter of the social disaster that has been created, as long term financial burdens and emotional effects spread to the other family members and their significant others. Surrounding them, often living in the same neighborhood, is a periphery of friends and co workers who are largely undamaged, but can also be profoundly disrupted by the suffering of brain injury patients and their caregivers no matter what caused the brain injury. It is the huge disruptive force of these powerful emotional and financial issues that matter here to me today.

I am amazed by the remarkable online communication abilities of human communities today to topple old orders and open up new possibilities for the future. This broader effect and its ripples are the same as what a natural disaster does to any society. In the moment of disaster, the old social order no longer exists and people improvise their own rescues, find new shelters, and form new communities. Thereafter, a struggle takes place in the entire social structure over whether the old order with all its shortcomings and financial injustices will be reinstalled or a new one, perhaps hopefully a more just and open one for all, like universal background checks for gun sales or perhaps a universal health care safety net system, will arise.

For example, as a person recovers from their meningioma brain tumor treatment, their brain cells attempt to re-establish the precise balance needed to ensure effective information processing and physical mobility, but this may mean some compensations or adjustments to their neural cell’s original alignments. Neural cells must compensate or adjust to the prior tumor compression, decompression and injury. Some times after large low grade brain tumor removal treatments any task or skill may take longer and memory may not be as complete until all the neural networks realign themselves with time, practice, patience and constant repetition. Mild aphasia or "word finding" problems like my former US Rep Gabby Giffords aphasia might be a social problem too. Neurogenesis is the birth of new adult brain cells and it continues throughout our adult life.

For example, when a person sprains or fractures an ankle, professionals recommend cold/heat treatments, rest and supports (i.e., cast, brace) and specific exercises to help the ankle adjust to the injury and recover maximal function. Depending on the severity of the ankle injury (i.e., sprain, fracture) and what is required after recovery (i.e., long distance running, ballet), the injury to the ankle can disrupt a person’s life.

Obviously, a human brain is much more complicated than an ankle. Yet, similarly, rest, supports (i.e., compensations, modifications) and “exercises” (i.e., cognitive therapies, educational tools and brain retraining) for the brain may be recommended to rehabilitate and restore useful physical function and memory skills. Depending on the severity of the injury and what the person needs to do and wants to do (i.e., care for a family, return to work or school, manage a large company), a mild brain injury can disrupt a person’s lifestyle for a short period of time or even longer.

Diagnosis of Mild Brain Injury

Due to the diffuse and subtle nature of mild brain injury, it is common for typical neuroimaging (CT scan or MRI’s) to show little or no evidence of injury. Believe you me, The damage to the brain is a real injury. One limitation of these brain imaging technologies is they often cannot detect mild brain injury or mild stroke like symptoms. Mild brain injury can often damage the "white matter" of the brain. "White matter" consists of the axons of neurons (connections) in the brain. This injury is much harder to capture or visualize using common types of brain imaging.

There are newer, more sophisticated imaging technologies that show promise in more effectively capturing the damage that occurs in a mild brain injury. However these imaging technologies are currently much more expensive, and are not as readily available. Some of the newer imaging techniques include:

Positron Emission Tomography (PET)
Single Photon Emission Computerized Tomography (SPECT)
Functional Magnetic Resonance Imaging (fMRI)
Diffuse Tensor Imaging (DTI)



Neuropsychological assessment is typically used to assess the functional impact of a mild brain injury or brain tumor. It may also be done while the meningioma patient is on "watch and wait" as part of an active surveillance monitoring plan. This holistic assessment is normally done when some type of brain dysfunction is suspected. A mild brain injury is often initially diagnosed by evaluation of the physical symptoms a person reports after sustaining a brain injury or after treatment.

A neuropsychological assessment is comprised of a wide range of tests that objectively measure specific brain functions. Testing includes a variety of different methods for evaluating areas like attention span, orientation, memory, concentration, language (receptive and expressive), new learning, mathematical reasoning, spatial perception, abstract and organizational thinking, problem solving, social judgment, motor abilities, sensory awareness and emotional characteristics and general psychological adjustment.

The neuropsychological evaluation can be used as a good starting point for a plan of rehabilitation. It can assist brain injury professionals in identifying specific cognitive areas that have been damaged, as well as those areas still intact. You can read more about neuropsychological evaluations and brain injury rehabilitation from the American Psychological Association. Many health insurance plans do not adequately cover additional brain repairing therapies, especially if the person looks "fine".

What can I do if I have a mild brain injury?

Understanding the changes that may have occurred from a brain injury is an important part of the recovery process. This makes public education and awareness crucial for both the person with a brain injury as well as their family and friends. The person with an injury and others need to understand that a “mild” brain injury can result in changes in thinking processes and memory that can affect the person’s ability to return to their former life. While a person can “look fine,” their brain injury is an invisible injury.

Research has shown that education and information about possible consequences and side effects can be helpful to the person with an injury and their family members. Some basic symptoms for family and friends to be aware of include:

Early Symptoms:
•Headache
•Dizziness or vertigo
•Lack of awareness of surroundings
•Nausea with or without memory dysfunction
•Vomiting

Later Symptoms:
•Persistent low grade headache
•Lightheadedness
•Poor attention and concentration
•Excessiveness or obsessiveness and easy fatigue
•Intolerance of bright light or difficulty focusing vision
•Intolerance of loud noises
•Ringing in the ears
•Anxiety and depressed mood
•Irritability and low frustration tolerance

If you suspect you or your loved one may have a mild brain injury or personality changes, please contact a brain injury professional to help with the diagnosis and inital treatment plan, no matter how long ago the injury occurred. Also contact the Brain Injury Association in your state. State Brain Injury Associations and national brain tumor organizations will have information to share and can connect you with support groups, programs and professionals who understand the injury.

Mild Brain Injury Issues

Some important information to share, from families and people who have sustained a mild brain injury:

The recovery from a mild injury is not always quick.
For mild brain injury, the issues are the same as moderate to severe brain injury. While there are general guidelines for recovery, there can be wide individual variations in the timetable for recovery. It can take several weeks, or several months for symptoms to fully resolve and to learn new coping techniques. It takes longer to break old habits and form more constructive new ones.

Recovery is often uneven.
There will be “good days” and “bad days.” This is normal in recovering from a brain injury. An important thing to keep in mind: on the “good days”, people want to get as much done as they can. Often, this can lead to overdoing it, which can bring back symptoms that were previously gone. Even on the good days, it is important to give yourself more time to complete tasks, and to listen to your body. You cannot “tough out” a brain injury.

Create the best possible environment for recovery.
Substances like caffeine, alcohol and nicotine can affect a person with a brain injury much more than they did before the injury. Be aware of the possible negative consequences of alcohol on recovery post injury especially if impulse control is an issue. It is recommended to abstain from alcohol consumption during the recovery period. One place you can read more about alcohol use and recovery from a brain injury is at the Ohio Valley Center for Brain Injury Prevention and Rehabilitation.

Give yourself or your loved ones more time to complete things.
Issues like fatigue, attention and memory issues can cause delays in completing tasks that were more easily and accurately done before the injury. Allowing additional time to do things like laundry, menu planning, shopping, bill paying can help. Thinking out the steps in order needed to complete tasks and writing them down can be helpful too. Better planning ahead can decrease stress and anxiety for both the survivor and the caregiver.

Professional help is important.
It is important to understand the effects of any brain injury. The injury itself can impair the ability of a person to accurately assess their abilities or personality changes. And once problems are identified, often a person with a mild brain injury struggles with figuring out effective strategies to compensate for problem areas. Working with a trained brain injury professional can help identify specific problem areas, and objective adults who can then help them implement effective strategies. You do not need to figure out brain injury and short term or long term memory losses all on your own. There are useful books and many resources available about different types of memory skills that impact who we are and who others think we are.

Support groups can be helpful.
Brain injury, stoke or any illness like a brain tumor can be isolating. People say things like “you look fine,” with the implication that you should be fine. It is an invisible injury. Sometimes just talking with others who have had similar experiences can help a person with a brain injury understand they are not the only one dealing with these issues. Contact the Brain Injury Associations in your state and the four major US brain tumor organizations to find out about support groups or other resources that may be useful to you.

Mild Brain Injury, Stroke and Concussion

It is important to understand that a stroke, or a concussion is a physical injury to the brain that causes a disruption of normal functioning just like any other physical injury disrupts your normal functioning. For example, some ankle injuries (i.e., sprains and fractures) are more disruptive than others, just as some brain injuries are more disruptive than others. The better we understand any injury, the better our chances are for a speedier and healthier recovery.

There maybe some confusion as to the definitions of head injury, stroke and the definition of a mild traumatic brain injury (mTBI). Brain injury can be viewed along a continuum that incorporates concussion, mild brain injury, moderate brain injury and severe brain injury. Each type of brain injury varies depending upon: (1) whether the person was unconscious; (2) how long he/she was unconscious; (3) the length of their amnesia; (4) the resulting cognitive, behavioral and physical problems; and (5) the recovery process.

The definition for a concussion and a mTBI tend to overlap and brain surgery and brain radiation therapy can have mild and/or serious long term stroke-like effects too.

To further clarify, a concussion is defined as a trauma (i.e., a blow to the head or a serious whiplash) that induces an alteration in mental status (physical or cognitive abilities) that may or may not involve a loss of consciousness. Concussion as detailed by guidelines developed by the American Academy of Neurology (AAN) and the Brain Injury Association (BIA), commonly is divided into three different types.

Grade 1 Concussion
•Person is confused but remains conscious
•SIGNS: Temporarily confused, dazed, unable to think clearly, has trouble following directions
•TIME: Symptoms clear within 15 minutes

Grade 2 Concussion
•Person remains conscious, but develops amnesia
•SIGNS: Similar to Grade 1
•TIME: Symptoms last more than 15 minutes

Grade 3 Concussion
•Person loses consciousness
•SIGNS: Noticeable disruption of brain function exhibited in physical, cognitive and behavioral ways.
•TIME: Unconsciousness for seconds or minutes

If concussion, stroke and mTBI are seen as part of the brain injury continuum, with Grade 3 concussion and mTBI overlapping, one can get a better understanding of how these definitions compliment each other and enhance our understanding. The Brain Injury Association estimates that approximately 75% of all brain injuries fall in the “concussion-mTBI continuum.”

For the majority of people who sustain a mild stroke, a concussion or have brain surgery, a full recovery is possible with appropriate diagnosis and management, but side effects may also lead to additional head injuries or falls. The effects of repeated multiple head injuries can be cumulative over a lifetime.

For kids and parents the CDC has information available about concussion management from falls for elderly folks and for safe return to play guidelines for sports. Additionally, the Brain Injury Association supports legislation like "Zach’s Law," enacted in Washington State, that requires any school athlete to obtain medical clearance to safely return to play following a concussion. Information about this legislation is available from your state Brain Injury Association.

Additional Resources

CDC Concussion Booklet
Road to Rehabilitation Series Part 3 - Concussion and Memory
Road to Rehabilitation Series Part 8 - Concussion and Mild Brain Injury
TBI Guide, an online book about brain injury and recovery written by a neuropsychologist.

There are several books available in the Brain Injury Association Marketplace:

Brain Injury Survival Kit
In Search of Wings
Remind Me Why I'm Here
Brainlash: Maximize Your Recovery from Mild Brain Injury
Brain on a String
Shaken but not Stirred

My Sources:

Road to Rehabilitation Series, Part 8 - Concussion and Mild Brain Injury, Brain Injury Association of America, 2006.
Brain Injury Medicine: Principles and Practice, Nathan D. Zasler, MD, Editor, Douglas I Katz, MD, Editor, Ross D. Zafonte, DO, Editor, 2007, Demos Medical Publishing.
Mild Traumatic Brain Injury: A Therapy and Resource Manual Green, B, Singular Publishing, 1997
Textbook of Traumatic Brain Injury Jonathan M. Silver (Editor), Stuart C. Yudofsky (Editor), Thomas W. McAllister (Editor), 2004 American Psychiatric Press
Horn, L.J. & Zasler, N. (1996). Medical Rehabilitation of Traumatic Brain Injury. Hanley & Belfus, Inc: Philadelphia, PA.
Kay, T. Brain Injury Association of America. Mild traumatic brain injury, 1999.


GBYAY Anne McGinnis Breen
See my ponytail bouncing and my smiley face winking at you? &;>)
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Keep your faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!