I was ready to turn in for the night before reading your post. I will now be up for a while.
Your post hit home.
When my younger daughter, who is now 25, was in the eigth grade, she had an unexplained, stroke-like episode at school that was diagnosed at a local hospital as a migrane. Around the same time, a school hearing test revealed an auditory deficiency on her left side. We took her to an ear specialist and he sent her for an MRI suspecting a problem with an auditory nerve. That MRI showed a spot on her brain stem which resulted in an immediate referral to Children's Hospital of Philadelphia where the head of Pediatric Neurosurgery confirmed she had a small tumor about the size of a pea that was likely associated with her stroke-like episode and/or hearing defect. He explained the options and they were much like the options apparently explained to you. He told us that the tumor was operable and could be removed surgically and explained the risks of this option. The alternative, he explained, was to closely monitor the tumor for signs of growth and, absent such growth and future symptomatic episodes, basically wait it out. He suggested scheduling another MRI in a couple weeks to see if there was visible growth of the tumor and at that point would be in a better position to suggest options. The follow-up MRI showed little change and this made him lean toward waiting and monitoring the situation rather than take the risks accociated with the surgery.
At this juncture we were confused and were experiencing all of the same feelings you are so obviously enduring now. We, too, felt the need for a second opinion but did not know where to go. Coincidentally, a friend saw an article in Reader's Digest about a doctor named Fred Epstein and she gave it to us. It was a story about how Dr. Epstein had overcome learning disabilities as a child and eventually became one of the world's most respected Pediatric Neurosurgeons, practicing at NYU Hospital in New York City. My wife took the article about this renowned doctor to our family practitioner and showed it to him and he, surprisingly, said "let's give him a call". He called and, just as surprisingly, got Dr. Epstein on the phone personally and explained our situation and within minutes we had an appointment to go to New York within a few days for a second opinion.
Upon going to New York and meeting with Dr. Epstien, he explained that after his examination of our daughter and his review of all the MRI's and records, he concurred with waiting it out. He pointed out that he could do the operation immediately subject to the known risks and further pointed out that was basically what he got paid a lot of money to do. But he reminded us that there were risks (numbness, facial difiguration, etc.) associated with the surgical option. He pointed out to us that our daughter might have to take those risks and opt for surgery in the future if symptoms recurred or the tumor showed continued growth. But he also pointed out that new breakthoughs in Neurosurgery were occurring so frequentl that even by delaying surgery a single year, medical advances in that time could reduce the risks of the surgical option substantially. We left our consultation with Dr. Epstien feeling the most comfortable with the situation that we had been since our daughter's initial episode.
In our case, we waited and monitored and monitored and waited and the tumor not only did not grow, but it reduced in size and eventually calcified. Our daughter has been episode free and, although she retains a defect in her hearing on the left side, it has improved somewhat.
I pray your wife's situation turns out similarly, but in any event you obviously need someone like Dr. Epstein to help you get things in proper perspective as he did for us. He is primarily a Pediatric Neurosurgeon, however, he apparently has had adult patients as evidence by the following Associated Press article we saw around the time we were in a situation similar to yours:
Woman gets surgery thanks to Duchess of York NEW YORK - After a plea from the Dutchess of York, a neurosurgeon removed a brain tumor from a London woman whose doctor in England called the tumor inoperable. Sally Djemil, 34, underwent surgery late Monday at New York University Medical center, hospital spokeman Dan Perkes said. Dr. Fred Epstein cut out 95 percent of the tumor and called her prognosis good. Epstein is "a doctor of last resort for brain and spinal tumors that other doctors have given up on," Perkes said. Sarah Ferguson called Epstein last week on Djemil's behalf after the case generated publicity in England.
And on top of that we found him to be accessible and to be a "nice guy".
You can find all kinds of information about him on the internet if you Google him.
Here's how to contact him.
Fred J Epstein
Beth Israel Hospital
170 East End Ave, New York, NY 10128
(212) 870-9600
LINKS:
<a href='http://www.lifechallenges.org/people/EpsteinF.html' target='_blank'>His own words</a>
<a href='http://www.yourtruehero.org/content/hero/view_hero.asp?33921' target='_blank'>A testimonial</a>
If his practice is now strictly limited to children he probably can and will refer you to an associate to meet your needs.
I'm sure the prayers of all on MACbbs go out to your wife, your family, and you.
Quote:=Fred Epstein, M.D., is the founding director of the Institute for Neurology and Neurosurgery (INN) at Beth Israel Hospital in New York City. His groundbreaking surgical techniques and his commitment to humane patient care have saved thousands of children's lives and earned him a reputation as one of the world's leading pediatric neurosurgeons. Dr. Epstein lives with his wife and children in Greenwich, Connecticut.
