Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

It Takes a Village

Written by Katie. Posted in Medical Team

Recently I’ve had a few people ask questions about the doctors and therapists I currently see to keep my POTS and EDS manageable.  Whenever I type a list like this, I thank my lucky stars for insurance, the ability to travel, and that I have found specialists that I am confident in.  Finding these doctors did not happen overnight by any means.  It took months to get in to see many of these doctors.  This was after already seeing many others and deciding they were not right for me and my care.

Anyways, this is an updated list of my current “medical team.”

  • Dr. Larry Nassar~the “captain.” Sports Medicine Doctor/Family Medicine.  He coordinates all of my care, and is my local, “home-base” doc.
  • Dr. Grubb (Electrophysiologist) and Dr. Karabin (Dr. Grubb’s NP)~ They manage my Dysautonomia/POTS.  I currently see them twice a year at the University of Toledo.
  • Dr. Lavallee~Sports Medicine doctor and Ehlers-Danlos Specialist at Memorial Sports Medicine Institute in South Bend, Indiana. He manages my EDS.  I see him twice a year.
  • Dr. Cantieri~Specializes in difficult pain problems, prolotherapy, and osteopathic manipulative medicine.  I see him every 4-6 weeks in Mishawaka, Indiana for prolotherapy treatments.  Insurance does not cover prolotherapy.
  • Dr. Wiley~Gastrointestinal Motility Doc.  He manages my Gastroparesis caused by having EDS and Dysautonomia.  I see him twice a year at the University of Michigan in Ann Arbor.
  • Dr. Rosen~Psychiatrist at Michigan State University.  I see him at least once a month.  I have seen him for 13 years, since I was 17.  He helps me deal with, and work through everything.  He helps keep my mind healthy.
  • Dr. Winkler~Dr. Winkler specializes in osteopathic manipulative medicine and acupuncture.  I see her every other week for manipulative (OMM) treatments.  She is local, in Holt, MI.
  •  Michigan State Rehabilitation~I have been with my physical therapist, Katie, for 2 years.  I currently see her once a week, and do a home rehab program 2-3 times a week.

So, there you go.  I feel like I am a professional patient by now, but I would not trade the care I receive from these doctors for anything.  The best part about all of these specialists?  They listen.  And treat me like I am the one who is ultimately in charge of my health.  In my opinion, that is how it should be.

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