“Bi” is for Boston
Vacation Time
Some time off and a change of scenery is what my soul needed. Aside from my neurosurgery consult, Boston kept us busy! We had a wonderful time visiting family and exploring the city. In three full days, we packed in the fun:
-Isabella Stewart Gardner Museum
-Time Out Market
-Introduction to the Freedom Trail by Boston on Foot
-Lunch at Quincy Market
-Cannoli’s at Modern Pastry
-A stroll along Boston Harbor and Rose Kennedy Greenway
-A peak inside Boston Public Libary
-Rest and duck watching at Public Garden
-Dinner at Tatte Bakey & Cafe
-Day trip to Coast Guard Beach in Cape Cod followed by fish’n’chips then icecream
-Modern Art Museum including a special Van Gogh exhibit
-Dinner at the Delux Cafe
-Coffee at Recreo where the family owns and operates a coffee farm then roasts their own beans
-$9 winnings on a scratcher ticket!!!
Wonderful memories were made. This was my first real trip to Boston and I can’t wait to visit again!
Meeting Dr. Bi
On Wednesday, Steve and I met with Dr. Linda Wenya Bi from Brigham and Women’s neurosurgery department. I adored her! Out of the three surgeons I met with so far she is above and beyond. For the first time in this process I feel like I was truly viewed as a whole human being and she emphasized that her goal is to keep me as “perfect” as possible while removing as much of the tumor as possible.
As suspected, she offered a slightly different option for surgical approach. A combined approach if you will- mastoidectomy and retrosigmoid. Big words, but the take home message is that she doesn’t see the need to destroy my inner ear and feels confident she can debulk a very large portion of the meningioma at the same time.
As for surgery, she anticipates a long day. In fact, she books the operating room for 16 hours! This way she can take her time getting to the tumor and dissecting it away piece by piece until she can get as much out as possible while avoiding damage to surrounding nerves and blood vessels. Following surgery she anticipates a few days in the hospital and either a discharge home or to a rehab for a short recovery period. The primary potential complications are consistent with Dr. Cohen including hearing loss and double vision which may or may not be permanent.
Her view on radiation also differed greatly from the other surgeons. Her preference is to avoid radiation entirely unless the tumor shows growth on follow up MRIs. Her rationale is that radiation has its own risks and side effects and the longer it can be put off the better. There is a strong chance I may need it in the future but she is hopeful that it may not be necessary for at least 5-10 years down the road.
Another way she differed is that she is the only surgeon to prescribe a medication to alleviate some of the pressure on my brain stem, hopefully providing some headache relief until surgery is scheduled. This medication is called acetazolimide. Often it is prescribed for altitude sickeness or as a diuretic for people with congestive heart failure. She explained it may help decrease my body’s production of cerebral spinal fluid (CSF). The meninges form a closed system in which the brain and spinal cord are suspended in CSF thereby providing protection and cushion to these vital structures. Any foreign substance or object that occupies space in this system can cause increased pressure. Hopefully by decreasing the amount of my CSF, I will have some relief in my exertional headache symptoms.
Something else I greatly appreciated about Dr. Bi is she recommended two neurosurgeons on the west coast if I desire to stay closer to home. Her recommendations included Dr. Fernandez-Miranda at Stanford in Palo Alto, CA and Dr. Almefty at Barrow Neurological Institute in Pheonix, AZ. Just prior to leaving for Boston, I actually secured a telehealth consultation with Dr. Fernandez-Miranda for July 8th. Dr. Bi explained he often utilizes an endonasal (literally through the nose) approach and I suppose I will find out if this is the case soon enough. As for Dr. Almefty, he has a very similar treatment approach as Dr. Bi as they have comparable training and philosophies. I am definitely considering a consultation with him as well.
Overall, my experience at Brigham and Women’s Hospital was excellent and promising. Dr. Bi is absolutely my first choice of surgeon at this point in time. Hopefully the new medication may provide some relief as I explore the remaining two options at Standford and Barrow. I am grateful I have the time and resources to weigh my options in order to achieve the best possible outcome. Slowly but surely I feel we are getting closer to a solution. I will continue to keep you all updated!
