Please get independent second opinons before any treatment

Please check out Al Musellas bt website found at
http://www.virtual.trials.com/

His list of brain tumor centers of excellence is a blue hyperlink at the bottom of the opening page,
Some of them give free second opinions on MRI scans, some of them want to see the bt patient in person.
http://virtualtrials.com/btcenters.cfm

All newly diagnosed brain tumor patients should at least get a second opinion from a good brain tumor center before any initial treatment and before any follow up plan and always ask for annual MRI scan follow up either before or after any additional treatment plan.
It also makes good sense to get independent second opinions on pathology reports from neuropathology experts before additional treatment.

To be included on Al Musellas list, the brain tumor center must have treated at least 50 brain tumor patients in the past year.
I recommend finding a young neurosurgeon who has done at least 50 a year with a skilled medical team at a neurosurgery unit with a special NICU.
If its elective surgery because you just want it out, please be sure your insurance will pay for all the extra bills like the anesthesiologist.

Al's btc list is not yet complete. If you know of a brain tumor center that is not on his list yet, have one of your doctors contact Al Musella.
Centers marked with a red star (*) offer bt patients a free scan review which means they are willing to have you contact them.
They have you send your scans by Federal Express or on computer discs, and will let you know what treatment options may be available.

When you contact them, tell them that you were referred by The Musella
Foundation - and ask for a free scan review.
If you want your MRI scans back please include a pre-paid return mailer for them and a note that you want them returned.
When you send the MRi scans, include a page with your name, contact information, your recent medical history and a copy of your surgical pathology report if you have one...
Click on the bt center name to get the contact information.
Centers are listed in order of State, then City and some are in other countries.
Some bt centers may be listed twice if some doctors do, and others do not offer free MRI scan reviews.
Click on the bt center to get the details on which doctor at that bt center offers the free MRI scan reviews.

Triangulation, getting second or third opinions helps you get enough information to make an informed treatment decision for your specific case.
Attending a regional brain tumor conference is also a great way to get educated about brain tumors and the various treatment options and meet a wonderful bunch of bt patients, parents and caregivers who know what it is like to live with a brain tumor in the family.

Please send for the basic primers and brain tumor handbooks and brochures from the two major brain tumor organizations, the ABTA.org in Chicago and NBTS in San Francisco and Boston for more reading material to give to others who care about you.
The BSF in Boston also has good brochures about meningioma by Nancy Conn Levin and Lori Levy, both meningioma survivors.

GBYAY Anne Breen, an experienced meningioma patient...25 years next October, my medical history bio below

DX and first orbital zygomatic approach craniotomy, October 1986, Tucson,
Arizona
Lower left temporal lobe tumor, near medial sphenoid ridge/wing,
Pathology benign fibrous meningioma grade 2, now called atypical bundles of long spindle cells,
Large 5 cm in diameter solid oval tumor mass behind left eye below the left optic nerve, age 39,
Discovered after several fainting spells like TIAs and terrible sinus headaches for 6 months
Driving and even skiing slowly again in three months, off all meds in six
months, full recovery in 6 months
Employed fulltime work one year post op as Assistant to Museum Director and Volunteer Coordinator and continued to raise our three kids

Recurrence documented by MRI in 1992 six months after a total hysterectomy and HRT,and six years after annual clean MRI scans since first surgery in 1986
I switched jobs to academic preschool teacher position and continued to work part time until 1999
In 1992 I declined tumr board recommended second surgery and follow-up linac accelerator brain radiation and found a SWOG oncologist willing to participate in the 1992 clinical trial NCI SWOG 9005 Phase III Mifepristone for Meningioma
1995-1999 three years of the real drug Mifeprex with no change in tumor size, it was stable on MRI for three years.
I figured, it wasn't bothering me, so why bother it as long as I had no new symptoms and it was still much smaller than the first occurence
Eight years later, in 2000 I finally decided to have a second orbital zygomatic approach craniotomy to "safely debulk" the tumor again because of new puffiness visible around my left eye and bony involvement documented on a October 1999 CT scan,
In January 2000 Dr. Robert Spetzler and his fine team at Barrow Neurological Institute, St. Joseph's Hospital, Phoenix, Arizona
Removed most of my 2cm by 3 cm long thin recurrence along the sphenoid bone and optic canal bone
I had the same question mark shaped incision from above my eye up in the hairline to my left ear, same bone flap replaced with only a 1 inch strip of hair shaved and I was home after 3 days and 2 nights in the hospital, no other drugs needed except 10 days of percodet for jaw pain.
Full recovery of all neurological function and return to normal activities and regularly walking two miles a day in two months,
I was driving again and at the LA BT conference in the spring of 2000
Some small remainder of residual tumor, first thought to be scar tissue became documented recurrence in 2004, I had further gradual loss and blurring of vision in left eye in 2004 so I applied to the FDA Compassionate Care program for Mifepristone
WAWA = Watching and waiting again, not whining, lol while I still actively postpone recommended IMRT now age 63,
Every year the new brain radiation machines get more accurate if I ever decide to have more treatment.
I am back on daily Mifepristone 200mg since Feb 2005 and my condition is stable and so am I.
KOKO= Keep on Keepin on!!!!!!

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 plus my personal meningioma alternative drug therapy Mifeprex RU486 Mifepristone and my blog comments about the obsolete 1990s EPA radiation risk calculations for women and children which are twice as high as average reference man 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!

Women of the World want Peace on Earth

The United Nations goals of this 1325 UN Resolution and new start up website ought to be addressed by all men and women. I want to be part of the Women's Peace Movement around the World and promote conflict resolution without military force. It all starts at home in the family or lack therof in early education and family support. Poverty and discrimination create tensions that must be diplomatically defused. Everyone's lives are interdependent and we all need social support and ongoing educational opportunites. It takes a village to raise a child, and women need to be heard and more actively involved in the actual decision making process for their own family, their own community and their own country.

Please read the history of women of peace

http://www.ja1325.org/main/AWP.htm
GBYAY Anne

ABTA.org about meningiomas

http://www.abta.org/tumor_treatement/129-2

This 2009 good initial diagnosis article explains some genetic mutations of meningiomas without mentioning that previous ionizing radiation exposure is a known contributing factor to meningioma growth.(just google the term (radiation induced meningioma for proof) Or the established medical fact that 70-80% of low grade meningiomas and some other low grade brain tumors have high progesterone receptor levels. Or that the use of this safe anti progesterone agent Mifepristone has the potential to block the growth of benign meningiomas with high progesterone receptor levels, especially if given before radiation therapy, if hormone receptor level testing is done on the tumor tissue after surgery or biopsy and included in the pathology report. Sadly, you may still have to ask for this hormone receptor testing for brain tumors, I did in 2000. So far, hormone therapy is only popular in more advanced medical research done in breast cancer. (Makes me wonder if they care more about our boobs than our brains LOL) I sure wish I could pay for Phase 3 clinical trial testing needed to get this safe drug FDA approved for standard initial and/or recurrent meningioma treatment. Then it would no longer be an off label use in the US. I sure wish our Congress and the Executive branch would respect the FDA and NIH government research done at the University of Rochester Hospital in NY State 2006 that has proven mifepristone is safe and effective for all women for longterm low dose use for uterine fibroid tumors, instead continuing to overrule FDA results. Years ago one excellent former Director of the FDA Womens Health Department, Susan Woods resigned in protest over this political power struggle, yet it still continues.
GBYAY Anne McGinnis Breen

Sample patient letter meningioma reply I wrote

Welcome to our meningioma online support group,
Especially new readers, like Karen and Bernadine(your emails included below)

Sorry I didn’t see any other email from either of you or from anyone on this entire site for several weeks, until I sent in the Florida January conference notice yesterday. So sorry you have to be here, but so glad you came to ask us any questions you may have. I really like to share my own opinions, and I don't expect everyone else to agree with me. I am not a doctor or a nurse, just another meningioma patient who has been around online a long time and read tons of emails about what their doctors said or didn't say to my dear meningimates, especially about a small tumor less than 2 cm.

Bernadine, honey,there are almost as many medical opinions about our brain tumors and how to treat them, as there are surgeons, radiologists and neurology doctors too LOL &;>)
Especially if we happen to remind them of their first wife or their former mother-in law! LOL
Always ask them what if it was your own son or daughter what would you do?
I had a complete physical by a doctor of internal medicine three weeks before discovering I had a solid mass 5 cm lower wing temporal lobe tumor at age 39. He wrote I was a mildly overweight middle aged lady and he could not find anything wrong with me....I think I reminded him of his first wife LOL

IA few of our meningimates (my personal affectionate term for all of us and our loved ones) have waited ten years before having any treatment because it was small, less than 1 cm , wasn't growing after six months or a year and they didn't have any major visible symptom. The risks of major side effects from both standard treatments can be worse than the original tumor symptoms sometimes depending on your age, your general health and your other medical conditions etc
IF they are like multiple warts or small like a tiny cyst, less than 1 cm and was/were found incidentally on MRI while checking for something else, you may want to monitor your condition for a while. My headeaches were not the same increasing growing pain cycle that lasts for hours like the migraine headaches my sister always had, I had no aura, no bad reaction to bright light like she had, I had fast sharp stabbing sinus pain and sudden fainting spells, several moments of profound muscle weakness and temporary complete loss of vision. And symptoms and treatment options do vary depending on the tumor size and its location in the brain

I suggest you each get another independent medical opinion from another excellent specialist in brain tumor removal, not simply another very nice local neurosurgeon who mostly does back or spine surgery at your local community hospital, not another neurologist either.
Do you have copies of your own MRI films to send to another brain tumor center of excellence for a free consultation?
The website www.virtualtrials.com has a list of these places marked with a red star where you can send your medical records to an experienced bt doctor for a free consultation and second or third opinion.

DEAR Karen. IMHO MRIS are sort of a doctor's guessing game they get it right and win about 80% of the time guessing what type of tumor it is by its location and appearance on MRI. Have it checked again in the first six months or year or two to see if it is growing or changing at all, if it doesn't change much at all, or only a few mm it is probably a low grade primary brain tumor like a meningioma or acoustic neuroma or vestibular shwannoma, but there are over 120 different primary brain tumor types.
You are right a needle biopsy or brain surgery is the only way to know the exact type and grade of tumor for sure documented in a pathology report, and "finally, although your Ehlers-Danlos Syndrome (EDS) can be more than enough to cope with, however it does not protect patients from anything else anyone can get. Since many Rheumatologists also practice internal medicine, EDS patients would be well advised to consider finding an internist as a primary car physician who is also a Rheumatologist. This way, there will be perfect integration of general and specialty care" quote I have taken from an EDS website.

So, at some level the Rheumatologist has a lot to offer a patient like you with Ehlers-Danlos Syndrome including proper nutrition or alternative ways to exercise and do other things.

I think we ought to get second opinions on our pathology reports from a skilled neuropathologist, not just a local general pathologist who may not have seen all the different primary brain tumor types under a microscope before... and by the way, most low grade meningiomas look alot like uterine fibroids to pathologists, and unless the slide is marked abdomen or skull they might not be able to tell the difference with microscopic visual comparison alone.


DEAR Bernadine,
I went back to full time work a year after my first surgery back in 1986 If you have multiple brain tumors like meningiomas, you might need to read more yourself and google an inherited condition called Neurofibromatosis 1 and 2 called NF1 or NF2 Did your doctor mention anything about that? The NINDS US government website is a good resource of reliable medical information on Neurofibromatosis 1and 2.

And you can ask for vestibular therapy exercises for your dizziness and balance problems right now, you don't have to wait for it to get worse hon I think that is pretty disgusting, if they do not offer you immediate rehab and information about local places to get physical therapy for balance retraining exercises that can help you improve your balance in a few weeks, if you do the daily exercises they teach you regularly every single day for a month at many outpatient physical rehabilitation centers.

Some good doctors are very cautious, some good doctors are very aggressive, both kinds of doctors might be good and/or the right one at one time or another for each one of us...We are each so unique, all different ages, some with diabetes or some another health condition which may complicate or change the treatment plan for anyone of us. Did you have any seizures before, is that what the neurontin is for hon? Some tranqulizers and/or seizure control meds do overlap with mood regulating drugs be sure to check the side effects or interactions of all your meds at rxlist.com.

Surgery is the most frequent and generally the best way to find out what type and what grade of tumor it is first, but some people are just not good candidates for surgery or radiation.
and doing a needle biospy is almost just like surgery anyway, they still have to drill a hole in your head, so, some docs say they might as well only drill that hole once so you only take the surgery risk once... ,

Move onward and forward with hope in your heart, KOKO Keep on keepin on !!! even if you have to take baby steps at first, regular walking exercise is absolutely the very best thing we can do for our brains at any age, even if we have to start over again with a walker, we can improve if we work hard enough . I really ought to being doing it more daily myself. I used to feel better when I did walk briskly even three days a week, and drink more water, and eat well washed apples, grapes and especially bananas LOL
GBYAY Anne McGinnis Breen
See my ponytail bouncing and my smiley face winking at you? &;>)
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
"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

Courage in women is often mistaken for insanity.
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
Keep you faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!


-----Original Message-----
From:
To: meningioma@listproc.hcf.jhu.edu
Sent: Tue, 30 Dec 2008 5:16 pm
Subject: [meningioma] Re: b enign meningioma
dearkaren,Ihave beendealing withbenign meningiomas for 5 years now. I am not happy with John Hopkins. I still am dizzy,imbalance,andheadaches,I takeNeurontindaily.Ido doctor with myentandear hospital too.Believe it or not I still teach. y husband has had 2 open heart surgeries.I get so discussed sometimes because my neurologist says he's not sure if the meningiomas are causing these symptoms.He's blaming the symptoms on migraines. MeantimePittsburgh Ear wanted to do surgery when I first found out.5 years ago I went deaf in my right ear .I was sent for an MRI and found 3 meningiomas.who do i believe?really discussed.
bernadine
--- On Tue, 10/16/07, Karen < >
Subject: benign meningioma
To: meningioma@listproc.hcf.jhu.edu
Date: Tuesday, October 16, 2007, 2:56 AM
After complaining of headaches and dizziness for many months, my ENT sent me for
an MRI. The radiologist said it showed a small benign meningioma. I was
referred to a neurotologist at the House Ear Clinic in Los Angeles. My hearing
and balance tests were within normal limits, but I am still symptomatic.
the doctor said that he has many patients with meningiomas that he just keeps
an eye on. After I left the appointment, I started to google!
Can a doctor tell for sure by looking at the films that a tumor is benign
without a biopsy.
I have Ehlers Danlos Syndrome which is a lack of collagen in the connective
tissues and am not sure if this plays a role in it.
Any advice is greatly appreciated.
Karen

Please keep track of your medical Cat scan tests

Here is a link to a trusted webmd website warning for all patients

http://www.webmd.com/cancer/news/20100331/faq-radiation-risk-from-medical-imaging?src=RSS_PUBLIC

Norma Rae's real story ends with meningioma

Dear Good People
The real Norma Rae, Crystal Lee Sutton's life ends with more insurance and treatment questions than answers, The fine print in the health care legal documents are too complex for most of us to figure out and it depends on how smart you are, who you are, or how much money you have, or your family has connections to good doctors or, what medical attorneys know to help people navigate the health care system to figure out how to get an exception to almost any exemption. The two party system of government is not protecting ordinary working people, it is protecting the wealthy investors who hide behind corporate shields so they are not personally responsible for the damage and death they cause and/or allow to happen. Senators are not working for all Americans or unemployed people who do not have a union job or employee benefits. I have heard even union workers might not get enough hours and coverage paid if they do not follow the party line.

I hope responsible investigative reporters and "truthseekers like me" will continue look for more details on her treatment plan and her insurance company.

What kind of health insurance policy did she have? I read online somewhere that it had an annual cap of $100.000 per year and she was 67 years old when she was first diagnosed. I wonder why not, or if she was actually on MEDICARE? We need more facts instead of the typical media hype for dummies that we get even from senators on both sides, because they are not our our side.
There is no approved FDA chemotherapy for malignant meningioma because the mega big corporations of the pharma industry and the NCI Adult Brain Tumor Consortium have decided not spent our tax money on research studying this usually slow growing brain tumor that strikes women teice as often as men, because it is generally considered rare and benign. But our meningiomas are twice as common as the deadly type that killed Ted Kennedy and they hasppen twice as often to women. And surviving two brain surgeries exactly a year apart is a remarkable feat for anyone, especially someone her age. I would have expected that once her doctor found out it was malignant after her first surgery she would have been treated with brain radiation therapy and chemo right away, why wait a year and why another surgery at her age? Why didn't she get radiation therapy and some chemo a year earlier, like other malignant brain tunor patients? Did she chose not to have brain radiation? Was it recommended for her case? I would like to know waht actually happened here before Democrats try to use her as a poster child for Obamacare. According to her age, she was medicare eligible for the past three years. Secondly, We do not have enough information. What was the chemo drug she was offered? Was it experimental? or not normally used or considered effective for this type of tumor? Or was it a simple coding error?

Do we know what drug she would have been given if she was on MEDICARE? Could she even get an investigational drug like I am on, if she was on MEDICARE or if she had a private policy, I doubt the drug I take was even mentioned to her by her doctors. I can't get it from my private insurance UNITED HEALTH CARE and will our government pay for it once I do get on MEDICARE? I got it for free from the NCI in the 1990's. Or will I have to stop taking it, if we can no longer afford an extra $6,000 a year for my care? And I had to wait a whole year for the paperwork while my vision got worse before I could get for myself, not just two months. IS it big mega corporation profit? bribes and/or bonuses? I wish I knew all the answers, but I want the federal government plan that retired employees like Dick Cheney has, he got such good care he has survived 5 heart attacks intact, although I thought he had some brain cells missing even when he shot that guy while out hunting, many people do not even survive one.

Yes, this is very personal for me, that's why I am such a fanatic about health care issues and education and information. Reading is fundamental to survive in the world today. I guess they will probably try to deny me approval again, but if I only have to wait two months to get it that will be better than the situation while I was on private insurance. I certainly do not have all the answers, but I can keep on asking probing questions because this is so vital to my own health and my future, because inquiring minds want to know more. I believe there is no such thing as a dumb question as long as we are polite, and some times we might need to be persistent. It is incorrect answers or silence without any answer that hurts us the most. GBYAY Anne McGinnis Breen

Journaling After Brain Injury

Journal After Brain Injury
Thinking about yourself and/or your loved one after a brain injury can get emotional, writing down your thoughts can help you to cope. Here Barbara Stahura suggests some topics to get you started on coping with your new feelings.