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 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.

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:
•Dizziness or vertigo
•Lack of awareness of surroundings
•Nausea with or without memory dysfunction

Later Symptoms:
•Persistent low grade headache
•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 not afraid!

Proptosis- bulging eyeball symptom of meningioma, etc in Grand Rounds presentation 2010

My Dear Meningimates around the world,

Meningiomas are an international medical issue, not limited to the United States, many of my blog readers are from other countries. I wish I could help get our world leaders more focused on providing better medical health care options for everyone with brain tumors.

I came across this link last month and I was completely fascinated by meningioma case details of this woman and other possible causes and diagnoses on page 61 explained by this ENT (eye/nose/throat) doctor in his grand rounds presentation on proptosis. Learning more from the MRI pictures and the wealth of English/Latin mix of vocabulary medical terms using "google search" might be an interesting computer brain retraining exercise. Its so important to keep learning something brand new to stimulate our brain and sharpen our mental abilities. I had to start by taking a typing course and a computer course in order to go back to work.

A small remainder of my lower left temporal lobe sphenoid wing meningioma regrew after two major craniotomies eventually causing the gradual protrusion of my left eye and pinched optic nerve in the bony optic nerve canal about 10 years ago. Over the past twenty-seven years (1st sx 1986 and 2nd sx 2000) I had a large ovid mass 5 cm of soft fibrous spindle cell tissue completely removed, during second look surgery some bony involvement (hyperostosis) was scraped away from the bony canal around the optic nerve and some thin sheeting of en plaque meningioma was removed from behind my left eye socket. I have taken Mifepristone for a combined total of 11 years to successfully block meningioma regrowth. It is commonly available in China for this purpose as you can read in this report, but sadly not yet in the USA. I was not surprised to read his expert opinion about radiation risks for meningioma tumor progression after further radiation exposure either. One of my dear friends has the pseudotumor diagnosis, and there are many other types of eye proptosis from cranial trauma and developmental facial deformities described in this report. The Tan Tock Seng Hospital centrally located in Singapore where Dr David Law presented this in 2010 is well known for accident and emergency medical care in China.

Please feel free to pass the medical presentation link below on to others online who may want to learn more. 79 pages might be more than you ever want to know, so print a few of the more important or interesting pages ( like the proptosis chart on page 61) or pass the entire link below to your current ENT doctor or NS doctors. Promoting international medical cooperation among doctors in other countries can help all people. Health care options ought to be a global and national security priority in every country.

GBYAY Anne McGinnis Breen

Friday, April 6, 2012

Limit and Count the lifetime number of your CAT scans and dental xrays

My dear Meningimates and our beloved significant others,

YOU may remember my frequently shared anecdotal personal medical history about having multiple full mouth dental xrays by three different dentists as a child before I was 19 for regular pediatric dental care, for three years of braces and two broken front teeth in high school and for removal of all my wisdom teeth. Twenty years later in 1986 I was diagnosed with a large lower wing of the left temporal lobe 5 cm grade 2 meningioma primary brain tumor.

I believe am still alive, adjusted to my "new normal" and doing well because I frequently decided to postpone additional highly recommended brain radiation therapy early in my brain tumor journey several times in 1992, 2000, and 2004 and participated in a 1992 NCI SWOG 9005 clinical trial of a safe effective investigational study of an old generic drug Mifepristone instead . Please take this informative report to your medical doctor and limit your future cumulative radiation exposures from Cat scans by asking your doctor to please use MRI scans whenever possible.

Finally forty years later in 2012 you can believe what I suspected and told anyone who would listen to a brain tumor lady since 1992. LOL

Now please believe this recent report by Dr. Elizabeth Claus and a team of well known respected meningioma researchers.

Today I believe a major risk factor for cancer is multiple Cat scans, please be careful to limit the life time number of CAT scans, especially for your children or if someone has epilepsy or serious head injury or any condition that is monitored by cat scans. Please see if you can switch to MRIs.

GBYAY Anne McGinnis Breen
See my ponytail bouncing and my smiley face winking at you? &;>)

Please scroll all the way down to my first two blog entries for my list of 28 questions to ask your medical team about brain tumor treatments originally composed in 1997 plus my personal meningioma alternative drug therapy RU486 Mifepristone and my blog comments about the obsolete 1990s EPA radiation risk calculations for women and children are found at
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Keep you faith, cherish your reason, treasure your mind and hold to your own good not afraid!

Thursday, March 29, 2012

Towards a Global Ethic in 1993 :an Initial Declaration by Dr Hans Kung and others

Towards a Global Ethic: An Initial Declaration is an interfaith community declaration, drafted initially by Dr. Hans K√ľng, in cooperation with the Council for a Parliament of the World's Religions staff and Trustees and experts. Drawing on many of the world's religious and spiritual traditions, the community declaration identifies four essential human affirmations as shared principles essential to a fair global ethic.

Commitment to a culture of non-violence and respect for life
Commitment to a culture of solidarity and a just economic order
Commitment to a culture of tolerance and a life of truthfulness
Commitment to a culture of equal rights and partnership between men and women
This Declaration was signed at the Parliament of the World's Religions gathering in 1993 by more than 200 leaders from 40+ different faith traditions and spiritual communities. Since 1993 it has been signed by thousands more leaders and individuals around the world. As such, it offers common ground for people to agree and to cooperate for the good of all humankind and the sustainability of our planet.
Because of unequal geographic population growth and international economic inequalities I would add another commitment to a civic priority to serve and respect the human rights of the most vulnerable populations living among us around the globe. Especially financial aid and community support for refugees and survivors of natural disasters, to provide clean water, eliminate extreme poverty, educate the poor, care for the sick, and protect people marginalized and/or discriminated against by established societies and megacorporate international interests. I thought we were making real progress until the problems with human rights violations started after 9/11 because our economic priorties shifted. The pre emptive military strikes loudly condemned by both Catholic Popes and practically ignored by our American Bishops were carried out by American leaders bombing in 4 soverign countries. They have wasted our tax money on massive death and destruction, human rights violations and environmental damage to our fragile planet's sustainabilty than at any other time since the Vietnam war. We want more affordable health care, not more warfare or destruction of our earth's natural resources and raw materials.

Welcome to my blog I'm trying to update again, by learning how to use google chrome as my new dashboard

I'm so glad you found my blog, welcome to all, especially our dear new readers and my old bt friends, both caregivers and patients.
(Anyone with a newly diagnosed or recurrent brain tumor after a radiologist doctor has read MRI or CT scans of the head is probably in shock right now)

Sorry to be so blunt with you dear new bt readers... but we are all blown away at first and I became very depressed for a while when they told me it had returned in the same place six years later after a successful total resection the first time. Second look surgery is becoming more common especially for younger people.

GK (Gamma Knife)Cyberknife, Trilogy or any linac brain radiation therapy is not an non-invasive option or cure in the usual sense of that word, except in the medical business marketing departments of a new GK unit for profit facilities before they treat you. Radiation therapy is basically pallative care for terminal conditions and some very aggressive brain tumors can and do come right back after either surgery or radiation. The smaller medical facilities that have recently invested in GK machines do want you to be their customer or patient client IMMEDIATELY, but they will not be able to help you if it comes back more aggressively in the unknown future.

Please get second opinions from a neurosurgeon, an endocrinologist and a skilled neuro oncology doctor before you are treated by anyone for a primary brain tumor. There is a new FDA approved drug therapy Korlym available now for primary brain tumors centrally located inside your brain, on or near the pituitary master gland. They are often called pituitary adenomas and can cause Cushings syndrome.

Brain surgery to remove the tumor is generally considered the best method of care by most neurosurgeons, then they can find out exactly which one of 120 or 150 brain tumor types you may have. Some places do a needle biopsy and a neuropathology report of your original tumor tissue to design an individualized treatment plan for you to receive specific personalized medications instead of an established standard of care for your follow up plan.

The exact size/type and tumor grade you may have can not always be reliably determined by MRI or CT Scans alone (they get it right about 80% of the time) and after brain radiation therapy if it comes back, the original tumor type may never be known because of additional DNA mutations and tissue changes after radiation treatment. Radiation therapy destroys the original tumor histology. I think that's a fancy marketing way not to say radiation therapy can cause cancer later on in life. I do not say I have brain cancer out loud or even to myself... Based on my belief that where there is a will there is a way, I trust God's will to provide for my future safety, I'm sort of a bit more childlike and more emotional than was normal for me. God knows and he must have planned it that way for a reason. Its not going be my way or the highway,so much as God's will expressed in his own way. And I am certainly not in control or in charge of anything much beyond my own behavior anymore. Nor am I the first person to use mind over matter to help my brain heal itself.

Neurogenesis, the birth of new adult brain cells is a proven fact now. Its not just an overly optimistic neuroscientific theory anymore, like it was twenty years ago the first time I read about it. Adults can grow tiny brand new brain cells with cognitive retraining and structured motivational guidance to avoid depression or apathy in about 4 to 6 weeks using good habit patterns and holistic cognitive, social and physical techniques. The human mind/body/spirit biochemical interconnections for self improvement and self control are also known biomedical facts now. Encouraging daily habitual practice and various types of physical repetition, like walking exercise and music therapy are essential ingredients most bt patients can add to their own persistence and determination to finish a task without becoming totally frustrated. Therapists and loved ones can encourage new learning by cueing and prompts to start with individual baby steps, breaking tasks down into smaller individual goals just like a toddler beginning to walk.

You may want and/or need to go to a major regional city medical center or excellent university hospital for brain tumor care. Some meningioma brain tumors which are usually low grade tumors are caused by cummulative radiation injury after short or long latency periods of many years. I hope I didn't scare you when I sent the neuroscientists research report about longterm brain injury from prior radiation exposure. If it is very small, less than 1 or 2 cm, or if they say it is inoperable they may recommend having GK radiation without having any needle biopsy. Some may want to operate right away or watch it by MRI for three to six months or a year to see if it grows at all.

I advise active monitoring by MRI "watching and waiting" especially if you do not have any serious symptoms yet. Some people may have other serious health conditions which make surgery impossible, or it maybe located deep in the brain in a location that is too difficult for some cautious local neurosurgeon who mostly does back and spine surgery. To have the tumor removed completely you want to find the best facility that has a neurosurgery department w/speciality team of doctors and trained staff to remove brain tumors and give intensive neurological care post op. Not a nice popular local back and spine surgeon. Please check to find out if he removes at least fifty brain tumors each year so he has had plenty of practice. A needle biopsy can identify a small more aggressive type of brain tumor that probably will reoccur in less than a year or two after either surgery or brain radiation anyway. However there is no way to be sure what type of tumor it was by pathology after radiation treatment scrambles the DNA if it comes back again in 5 to 10 years and you might need more surgery anyway. There maybe other longterm side effects from radiation necrosis or swelling called brain edema, and other drugs you may need for the rest of your life, if the master pituitary gland receives any scattered radiation injury from exposure to radiation hot spots, if it hits bone or is deflected by small bony surfaces inside the brain.

GK may seem like a sure quick fix right now, and you may still be fine in a few years, but the longterm survival results are not guaranteed to be any better than actual brain surgery, we have had meningioma patients online here before who have had recurrence or other new mulitple tumors discovered either after GK therapy or after surgery, I do hope some of them who are still online here with more than 5 or 10 years since their GK treatment or surgery will write back to you I do not mean to scare you, but I do suggest you get other independent second and/or third medical opinions from major brain tumor centers where the doctors treat hundreds of brain tumor patients each year of all types and grades with surgery first, so they know exactly what it is before they radiate your precious remaining brain cells, because any radation therapy has to go through healthy brain tissue to get to the tumor area. And some brain tumor patients need anti seizure drugs for the rest of their life or hormone supplements if their pituitary gland is damaged by radiation.

Please read my list of 28 questions to ask your medical team and discuss with your significant others, with each second opinion doctor visit you will learn more about your specific condition and possible drug treatment options for some without surgery or radiation therapy. Currently mifepristone is being made in other countries for birth control, like China and India where it is very popular and very cheap, here in the US the brand names Mifeprex, Corlux and now Korlyn, are very expensive and only used for oral contraception and Cushing's disease after testing it for safety for more than ten years.

Please send for educational handbooks of brain tumor treatment from the major not-for-profit bt support organizations in Boston, NYC, Chicago and San Francisco, it only takes a few minutes to google, call or email all of them for their free literature and then you and your family will have well organized printed material to read and plan together at your own pace and determine the best way for you to proceed in the beginning, or if you have a recurrence like I did. I was able to get my own FDA approved investigational clinical trial after I volunteered for a NCI clinical trial meningioma drug therapy instead of either standard surgery or radiation. I'm still fully alive, fully human and dancing and singing, reading and writing, walking and talking 29years after my first surgical removal and I have postponed the standard tumor board recommended brain radiation therapy for more than 20 and I had my gradual slow growing reccurence safely debulked 15 years ago. I'vebeen on the drug Mifepristone for a total of 12 years with no noticeable permanent side effects from the safe non toxic drug.

GBYAY Anne McGinnis Breen, a 29year survivor of a grade 2 meningioma which has regrown a bit each time after two surgeries couldn't get every single bad tumor cell from behind my left eyeball, but it has not progressed to a higher grade tumor as some other patients tumors do, especially after brain radiation therapy. See my ponytail bouncing and my smiley face winking at you? &;>)

Hope is a free gift I want everyone to have at each step of their journey in life.
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"Hope has two daughters--anger and courage: anger at the way things are and the courage to work to make things other than they are." -- Saint Augustine
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Keep your faith, cherish your reason, treasure your mind and hold to your own good not afraid!

Thursday, February 23, 2012

My old profile I just saved before it was deleted

Anne McGinnis Breen
I thought I was being a hypochondriac, I had been to an eye doctor, a female gynocologist and finally a doctor of internal medicine who gave me a complete physical and found nothing wrong, just a "mildly overweight middle aged lady" he wrote. And finally my new primary care family doctor ordered a CT scan and found the 5 cm in diameter, left temporal lobe tumor dx and sx 1986 at age 39, after a year of sudden sharp stabbing sinus headaches, occasional fainting spells and now I know the TIA'S (transient ischemic attacks) were the sudden moments of profound muscle weakness I had. I had very heavy and exhausting menstrual periods too. I was almost relieved that there really was something wrong. After it was removed and I was walking and talking just fine I was told to forget about it and get on with my life. I was back working full time one year post op and continued to raise our three young children, but I felt enormous stress and fatigue and everything seemed much harder to manage and remember. I felt strangely emotional and weird to be crying so easily over everything.

Then in 1992 I had documented brain tumor recurrence six months after my total hysterectomy for uterine fibroids and endometriosis. Then since I had no headaches and it still wasn't bothering me like the first time, I chose a 1992 NCI SWOG 9005 Phase 3 clinical trial of Mifepristone for meningioma with Dr Steven Grunberg 1995-1999 (my tumor was stable for three years on the real drug, the progesterone receptor inhibitor, after I flunked on the placebo the first year when my tumor continued to regrow) instead of having the SW Tumor board recommended immediate second surgery and six weeks of IMRT brain radiation in 1992 or 1993.

I continued to teach at a local pre school and raise our 3 kids for eight more years and then after the NCI trial was closed as inconclusive in late 1999 (most of the other 199 participants had already had several repeat surgeries and brain radiation treatments unlike me) I finally agreed to my second craniotomy in 2000 at Barrows Neurological Institute in Phoenix, by Dr Robert Spetzler and his fine team where they safely debulked it. Since Feb 2005 when another recurrence was documented on MRI I started on 200mg daily Mifepristone, brand name Mifeprex again, in my own FDA approved investigational trial to current and my July 2005 head MRI compares well and my condition appears stable and unchanged in my most recent MRI in Nov 2014.

Its hard to find a doctor willing to prescribe progesterone receptor inhibitors like MIFEPREX Mifepristone off label for meningiomas, another old brand name is Corlux and now a new brand name Korlym for Cushing’s disease symptoms has been FDA approved as an orphan drug. BTW Dr. Harvey Cushing was the great neurosurgeon who named meningiomas for any tumors found anywhere around the brain in the three layers of meninges lining the brain and many of these low grade primary brain tumor types have progesterone receptors, like acoustic neuromas and vestibular schwannoma which also seem to have a much higher incidence in females than in male bt patients. I am also concerned that women, especially young girls, have a 50% higher risk of abnormal cells or tumors from the same "lifetime total low dose man-made" radiation exposures as REFERENCE MAN, but the EPA doesn't mention it much. There ought to be REFERENCE WOMAN and REFERENCE CHILD radiation rate scales as well. My favorite links for new readers to brain tumor info and clinical trial information are Al Musella's site and the American Brain Tumor Association at