GyroStim Project for Treatment of MdDS

At the end of April 2017, I learned about the GyroStim.  The GyroStim is a revolutionary piece of equipment that is being used to treat PTSD, Concussion, TBI, Vertigo, Balance, and Performance (used for athletes).  I learned about this through a beautiful and faithful couple, Jeff and Lisa Morgan.  Jeff is using the GyroStim for cognition and balance after suffering a stroke.  I began investigating this “NASA like” equipment to see if it could help with Mal de Debarquement, MdDS.  After receiving a list of locations with the GyroStim, I found one in Asheville, NC at the Asheville Balance and Vestibular Center.  That day I called and spoke to the receptionist who was unfamiliar with MdDS.  That same evening I received a call from Dr. Kim Fox.  Dr. Fox, very familiar with MdDS, indicated the GyroStim to her knowledge had never been used for treatment of MdDS.  After a robust conversation about my symptoms and if I had been formally diagnosed with MdDS, she let me know we would be in uncharted territory.  She said if I was willing to spend a week and do the GyroStim 5 days, twice a day, she would like to do a case study to see if this was a viable treatment for MdDS.  So, arrangements were made for May 1st thru May 5th, 2017.  I cannot tell you how much this meant to me and the patients of MdDS if this treatment worked or even reduced symptoms to a manageable level.  I can tell you, one must be fearless and trusting to use this equipment, but I can’t begin to tell you after this week of treatment how much better I am.  My side-to-side sway is gone.  My balance is about 90% better proven on a PT evaluation before and after this treatment.  Now I do have homework in the way of grounding and head and eye exercises, but the GyroStim was working to reprogram my brain for spacial orientation, proprioception, and habituation.  There were cognitive elements used such as counting by 2’s, counting backwards, words and word association while in motion in the GyroStim. This improves cognitive skills and multi-tasking.

Assessment: This may be a viable treatment for MdDS, but more studies must be done.  I will be followed up for a few months by Dr. Fox and then she will publish her research.  It may be about me, but it is truly about a treatment for MdDS patients.  I will always be susceptible to having MdDS.  I will travel with caution.  Boats are definitely not recommended as an option for travel, so probably no cruising in my future.  When on a long car trip of more than 1.5 – 2 hours in duration, I should stop to “ground” myself and break up the motion of the car.  When flying or on a train, I should be medicated with an antihistamine or Valium to suppress my vestibular system.  With the GyroStim treatment, at this time I have regained my life with my family and friends for the first time in approximately 10 years.  This to me is Priceless.

The Asheville Balance and Vestibular Center is located at 1000 Centre Park Drive, Asheville, NC.  I must mention the Technician for the GyroStim whose name is Jordan as well as the Physical Therapist, Brittany who are both wonderful, caring and along with Dr. Fox allowed me to cry tears of happiness each day of the treatment.  Dr. Kim Fox has the most caring heart of anyone who deals with MdDS that I’ve ever met (maybe except my neurologist who is also very supportive and caring).  You can google the GyroStim and look at a video.  By the way, to Dr. Fox’s knowledge, her center is the only center who specializes in Vestibular and balance issues, not just balance.  Also since not FDA approved, this is not covered by insurance, but Dr. Fox’s packages for this therapy are extremely reasonable for this equipment which is very expensive.

 

May 16, 2017 Update:  I spoke with Dr. Fox today for follow-up.  I am doing well.  I am a bit more active and am doing my grounding, eye and head exercises as prescribed.  I still have a bit of a bob.  She is working with the engineers to tweak the protocols for the equipment as to try to help with this up and down motion.  So after I speak with her again in 2 weeks, I may be heading back to take more treatments.  Please remember this is a case study and research.  We are in uncharted territory.  I am very happy to be a part of this study.  Anything for a cure for MdDS.

http://www.ashevillebalanceandvestibular.com/

September 2, 2013

This is the beginning of my personal blog in which I will try to share the disorder for which I was chosen to endure.  I was diagnosed in 2011 with Central Vestibular Disorder?  But, this year discovered the more correct diagnoses may be Mal de Debarquement Syndrome.  For those of us who have MdDS, life is forever changed.  We rock, some more than others, and we tire with very little effort.  Our days are filled with what ifs and making plans we may or may not accomplish.  Getting out of bed can be an accomplishment.  Getting a shower, making the bed and getting breakfast can wear us out to the point of needing to go back to bed.  Symptoms include: Difficulty with balance, fatigue, inability to concentrate, comprehension, headaches, anxiety, intolerance to busy patterns, nausea, light sensitivity and many others

This is day one. More to come as this is all I can accomplish for today.