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!
