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.



http://www.teigrandround.com.sg/images/gallery/1273824062_20100415%20DavidLaw%20OCULO.pdf



GBYAY Anne McGinnis Breen

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.


http://thegazette.com/2012/04/05/study-frequent-dental-x-rays-linked-to-most-common-brain-tumor/

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.
http://www.huffingtonpost.com/leo-galland-md/radiation-risks_b_843282.html


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 http://gbyay.blogspot.com
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Keep you faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!

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 Küng, 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 purpose...be not afraid!

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 www.virtualtrials.com and the American Brain Tumor Association at www.abta.org

FDA approves Mifepristone for some Cushing's disease symptoms(new brand name Korlym)

Here is the link to http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm292462.htm Korlym, the new Corcept Inc brand name for Corlux and the old generic Mifepristone might also help anyone with diabetes suffering from a pituitary adenoma brain tumor or a primary brain tumor pressing on the pituitary gland which is the master gland. The FDA News report mentions the word en·dog·e·nous ( n-d j -n s). adj. 1. Produced or growing from within. 2. Originating or produced within an organism, tissue, or cell: Mifepristone or Korlym is now FDA approved for endogenous Cushing's disease. I highly recommend that my new dear meningimates (my own affectionate term for patients and caregivers) check out their own symptoms if they are badly overweight, frequently tired and out of breath and have high blood sugar levels compared to a list of Cushing's disease syndromes and get a doctors referral for a second opinion from an endocrinologist before they have either surgery or radiation therapy if possible, and if their brain tumor is or was centrally located near and/or causing internal pressure on their pituitary gland. Remember, I'm not a doctor or a nurse, just an experienced and informed brain tumor survivor. In fact, neuroendocrinology is a tough course of study, its an advanced medical specialty with these two major fields of medicine overlapping, so highly skilled neuro-endocrinologists who can dispense drug therapies are few and far between in the US today.

Anne McGinnis Breen's Brain Tumor Blog: Genetic links to meningioma

Anne McGinnis Breen's Brain Tumor Blog: Genetic links to meningioma

MY dear Meningimates,

I'm sharing links to information I wanted to find for my own health and future wellness for me, my siblings and especially my three kids and grandson. I hope I can also help educate you and perhaps we can alert more of our doctors too.

I'm hoping these long reports below are not too much information for some at the time of medical treatment crisis. I really do not want to overwhelm anyone about potential genetic risks for our family members either.

Surfing around I found these four inherited diseases related to meningioma development. You can take these reports to your own medical team and share them with your family members if you want, or just save them for when you or your loved ones have time to read more.

From your own emails, it doesn't seem to me that very many of our doctors share this type of genetic neurofibromatosis background info with you people who might also like to keep your eyes open for symptoms in your own relatives, At the DIA conference last fall I met several young parents of little kids with neurofibromatosis NF2 and they didn't seem to know it strikes older adults like us too That apparent medical knowledge gap in the parents made me even more curious about genetic links to meningioma.

http://insciences.org/article.php?article_id=10259

This European article above says relatives of people with meningiomas are three times more likely to develop this disease than other people, Lifestyle choices and specific environmental factors besides prior radiation exposure seem to add to some individuals inherited disease risk.

I'd like to propose my own theory that prior exposure to radiation or cancer in either parent or grandparent before they have their own children might contribute to an inherited genetic cancer susceptability from DNA mutations caused by a parent's exposure, especially of nurses and ER staff during pregnancy. These genetic mutations could increase total cummulative lifetime radiation risk and explain the cancer mutations in my 3 siblings. However, neither of my parents and none of my own 5 siblings have had meningioma, but all of my sisters and my Mom have had uterine fibroids.

So far only a small proportion of meningiomas are directly linked to inherited genetic diseases and some longterm late effects of previous ionizing medical radiation exposure. These four inherited diseases can cause a wide range of low grade abnormal cell growth masses, benign lumps and bumps, cysts, adenomas, lesions, neoplasms and solid tumors or meningiomas before they progress to cancer. The first one is von Rechlinghausen disease or Neurofibromatosis Type One and Two, NF1 and NF2, and three other genetic mutations linked to meningiomas are called Cowden syndrome, Werner syndrome and Gorlin syndrome.

I added four reliable medical links below to read more about the potential disease progression of each one..
Studying about our genetic history is like studying our family history and the extra reading is good cognitive therapy too. lol

http://www.ninds.nih.gov/disorders/neurofibromatosis/neurofibromatosis.htm


http://www.cancer.net/patient/Cancer+Types/Cowden+Syndrome

http://emedicine.medscape.com/article/1114125-clinical#a0217

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002423/



GBYAY Anne McGinnis Breen