Mar
Ex Member
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Hi Charlotte,
Welcome to our MM family. We live so close. I live right over the bridge, outside Philly. My niece also went to the University Of Penn, and it was also our experience that they knew very little about the disease there. They told her she shouldn’t have surgery. She had 4 devastating strokes and had to be medically airlifted to Stanford, to a MM specialist, Dr Steinberg. He did surgeries on both sides and it saved her life. If you only had surgery on one side, or not at all, I agree with Shari, and urge you to get a second opinion, ASAP. You may very well be having warning signs and should address this quickly.
With all due respect, it doesn’t sound to me as though he was a mm specialist. We define a MM specialist as a neurosurgeon who performs all the surgeries needed to treat and manage this disease, and also one who has done research and published studies, and deals with MMD on a daily basis. This is why we urge people to seek a specialist, because they not only can do the surgery, but understand the disease from experience. It saves lives.
I’d be happy to talk with you or meet with you if you’d need friend or support. You’ll be in my thoughts and prayers.
Mar
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