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Patient Testimonials and Ecchordosis Physaliphora Resources

 Ecchordosis Physaliphora: Success Stories

Susan R., Shutesbury, MA
I am very grateful for the work and humanity of Dr. Shahinian of the Skull Base Institute.

I have an uncommon, benign brain tumor believed to be ecchordosis physaliphora (EP). It is in contact with both the anterior of my brainstem and major blood vessels in this very delicate and hard-to-access region of the brain.

When I was having numbness in my tongue and face a few years ago, an MRI revealed a brain mass. My case turned out to be so unusual, it was presented as a case study at a major medical center and reviewed by a group of doctors. I now understand that many neurosurgeons never encounter even one of these tumors in their entire career. One of the doctors described it as a benign "precursor to chordoma tissue". When I researched the description he gave me, I found the term "ecchordosis physaliphora" although there were few articles on it. I chose a few of best articles to share with my neuro-oncologist and other doctors

One of those articles was authored by Dr. Shahinian. I wrote to him directly with mostly academic questions. Dr. Shahinian called me personally to share his knowledge and tell me about this type of tumor as well as its "aggressive cousin," chordoma. He patiently answered my questions and gave me comfort and hope.

Even though surgery is not currently recommended for me, I feel grateful to be in touch with this highly innovative surgeon who understands my problem and is successfully removing this type of tumor with minimally invasive endoscopic surgery. A friend remarked that I had encountered a truly caring and special person, and I couldn't agree more.

I feel fortunate to have encountered Dr. Shahinian. He is an important part of the high-quality medical practitioners I am working with. Though caution is prudent in the right measure, new techniques need to be developed and pursued. Unusual conditions need to be studied, and may be just what informs broader knowledge and practice. People afflicted with uncommon diseases need practitioners knowledgeable about and experienced with their unique condition. Dr. Shahinian fulfills this special role for me.

I sincerely hope that Dr. Shahinian will always be there for me, as well as others in need. I supported his endeavors to move medicine forward in the research, practice, and communication of innovative minimally invasive skull base surgery.


Susan R.
Shutesbury, MA

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