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/

About Cindy Beagle

I am a 56 year old who suffers with Central Vestibular Disorder and possibly Mal de Debarquement Syndrome (MdDS). Central Vestibular Disorder is a central nervous system disorder. MdDS otherwise known as disembarkment syndrome is a type of vertigo except I don't spin I ROCK. The Fatigue is overwhelming and there are many other symptoms but no cure.

49 Responses

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  3. Pattie

    Dear Cindy,

    I feel like God has handed me a miracle by finding your information on GyroStim today. It has been 8 months since I flew to Europe and my husband and I embarked on a River Cruise. The MdDS started on October 3,2017immediately after our flight landed in Amsterdam. I have been dealing with this disorder since that date. I have experienced the condition after previous cruises, but have never had the rocking last for more than 2 months until now. I have been researching treatment facilities in Chicago and at Mt. Sinai. Just hearing about the success you and others have had with GyroStim has literally given me a first glimmer of hope. I live in Nashville, TN and was thrilled to know that Dr. Fox is in Ashville — just 5 hours away!! THANK YOU, THANK YOU for sharing your positive experience!!

    Pattie

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  4. Carolyn White

    Hello Cindy,

    I’m Suzanne’s mother. She is coming home from Italy shortly. She has found she just can’t live there with the elevation, barometric pressure and curvy roads. She will be living here in Florida near Cape Canaveral and we plan to take her to Asheville, once she gets settled in.

    My question to.you:: is this in downtown Asheville?
    Are there any hotels or air bibs nearby? Where did you stay while there?

    We’re hoping she will be here by mid-February. A response is greatly appreciated. I can’t tell you how many tears we have shared over the phone from this debilitating syndrome. Thanks again!

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  5. Suzanne

    I have had MdDS since 14 October 2016 from a plane ride from LA back to Honolulu. I am currently in Italy with my military spouse and the symptoms are far worse. I think the location and terrain play a huge part. When I was in Honolulu, I worked with a PT that was able to help me go from the 10 level to a workable level of 3/4 but it is all higher now that I am here in Italy. My mother has reached out to Dr. Fox about getting treatment this summer. When I worked with the Hawaii PT I complained to her about how much neck and shoulder pain I was/am having and she mentioned that all the muscle tension in that area was probably contributing to the symptoms along with the clenching of my jaw muscles, since the MdDS is on the left side and the neck/shoulder issue is on the left side. I guess I am curious if you had any cervical/neck issues with your MdDS?

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    1. Suzanne, I would like to reply to your post. You have two issues going on here: TMJ and MdDS. I want to respond to the TMJ first because that’s an issue for which you can get help right now where you are. I am a registered dental hygienist of 39 years. I’ve had the good fortune to work for a dentist who treats TMJ on a regular basis. Clenching/grinding (bruxism) can cause a multitude of symptoms: ringing in the ears, headaches, jaw pain, worn teeth, broken teeth, neck, shoulder and back pain. You need a firm acrylic bite guard that fits your entire upper arch (custom made at your dental office). Soft, jelly like guards purchased over the counter will actually encourage you to clench/grind more. Do not use these! Invest in a custom made guard. Your guard will have a completely flat surface so that you’re not able to lock your teeth together ( like a puzzle). You won’t be able to put the pressure on them like you do now. Over time, this will greatly relieve your jaw pain and shoulder/back pain. You may want to ask your dentist about taking some form of muscle relaxer initially on a short term basis.

      Let’s address your MdDS now. If you are having any anxiety or depression associated with constantly rocking and swaying, then you may want to talk to your doctor about treating these conditions first. As Dr. Fox explained to me, the pathway that controls balance (vestibular) runs along the same pathway that controls anxiety and depression. You have to break the cycle somewhere. If you’re having any anxiety/depression treat that now.

      Gyrostim therapy is fabulous and it works. I went on Oct 2, 2017 and did 8 days of therapy twice a day. The cost was very afforable $1800. After the 3rd day I definitely felt a difference and was very encouraged. On the 4th day I woke up and my symptoms of rocking and swaying had once again returned and I was discouraged. Dr. Fox explained to me that this was normal. On Day 6 of therapy, I felt the MdDS was gone but my symptoms had changed (again, Dr. Fox said this is normal). I had a totally different symptoms, no rocking or swaying but feeling dizzy and unbalanced like vertigo sort of. I completed 8 days of therapy. I was better but not what I had expected. Dr. Fox explained to me that the brain has a neutroplasticity and that it would continue to “process” the therapy I had done in the gyrostim. I returned home and sure enough, in 2 weeks my symptoms were 85% gone. It has been 5 weeks since I finished therapy and I’m about 98% improved. I still have a little bit of dizziness/imbalance if I turn or tilt my head too quickly but it is very manageable. I am taking some medication to help relieve my anxiety and “take the edge off” my depression. My medical doctor says he plans to take me off of these meds in 6 months.

      Like you, my MdDS started after a trip. We went to Alaska for 14 days. 7 days on a cruise, multiple excursions on smaller boats, trains, followed by 2 long bus rides and a 10 hour train ride then 2 days of flying back to the east coast. It could have been any of these things that caused the MdDS to start. We returned home on July 27. I could not function. I was out of work for 3 months. I saw my physician, an ENT, a neurologist, had all kinds of testing done, did vestibular therapy with a PT…… nothing worked like the gyrostim. Dr. Fox is the most educated doctor I’ve ever met on MdDS. She stays with you through out your entire treatment. She follows up with you after you leave. She e-mails you daily to check your progress. My husband and I were absolutely blown away by the level of her professionalism, knowledge and caring attitude. I believe in gyrostim!

      Treat your TMJ now. Get a bite guard. Treat any anxiety or depression you may be having. Make a trip to Asheville NC to see Dr. Fox and do Gyrostim. It’s a long way from where you are. I would do at least 8-10 days of therapy . Call the office and talk with Jordan ( she’s the gyrostim coordinator). She will give you the information you need.

      Good Luck. There is hope!

      Lindy Marshall

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      1. Kara

        Amazing….!!! I assume you’re keeping the foundation in the loop?? I have tracked down a Gyrostim here in Australia. Do you think Dr Fox would mind if the practise reached out?

        Liked by 1 person

  6. Hi Cindy…..do you have to be off all meds to have this treatment? I know for Dr Dai, you needed to be off all benzodiazepines for a week prior to treatment. Wondering if this is the same here. Very interested in following your progress. Coming up on my 5 year anniversary with MdDS.

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      1. Diogo

        Hi Cindy. Are you intending to tapper off both medications (mainly Klonapin…)? What were Dr. Fox thoughts on rehabilitation even taking a medication that slows down your vestibular system? I live in Brazil and I am really considering going to USA to try these things out. It’s been 4 years since the beginning of my symptoms (boat ride) and the only drug that somehow succeeded in reducing my symptoms was Klonapin. Unfortunately, however, it seems that I don’t respond the same way I did to Klonapin (I take the same doses as yours). I don’t know if I am becoming more resistant to the medication, but the fact is that my symptoms are at a higher level even taking Klonapin. Thank you for posting it and please keep us updated.
        Diogo

        Liked by 1 person

  7. Jean

    Cindy…what were your symptoms level before trying this treatment? Was yours cruise related or spontaneous mdds & how long did you have it? My understanding is the length of time you have this disorder affects the outcome of any type of treatment as well as if it cruise related or spontaneous?
    Hoping for continued Improvement for you on your journey.

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  8. Louise DellaGrotta

    Thank you Cindy for the hope that this terrible syndrome may have a treatment. I am so very happy for you and for the MDDS society that maybe, this will be a breakthrough. I wish I could find a Gyro Stim here in Florida. I would love the opportunity to try this as this is such a debilitating syndrome. Continued success to you.
    Louise

    Liked by 1 person

    1. Louise Emma Dellagrotta

      Just found out that there is a Gyrostim in Tallahassee! Thank God… I am truly going to try to pursue this if I can drive there by myself with my two pups. If it helps I will be truly thankful and grateful. No words can tell anyone what this is like. Everyone thinks that you are just dizzy, and it is so much more than that as we who have this awful syndrome know. I have to have Cataract Surgery in 2 days and I really hope that the twilight sleep they put you under, doesn’t exacerbate my symptoms. I can just about hold it together now so I pray for a good outcome. Thank you Cindy Beagle for being a pioneer for all of us with this awful syndrome. You took a chance to make yourself worse, so that all of us could get better..I thank you for your courage in this endeavor. So pleased to know you are doing so well. Again, thank you from Louise DellaGrotta

      Liked by 1 person

  9. Kim Kepner

    I am so happy for you
    I live near Asheville area and will be following your outcome
    I have had this now for nine years and never have been in remission
    I had given up really but you bring hope
    Thanks
    Praying for remission

    Liked by 1 person

  10. Kara

    Hi Cindy… I’m reading this from Perth, Australia. Really exciting to see more awareness in MdDS. Dr Dai’s treatment option is now available in Australia which is a start for us down under!!

    I’ll be watching your blog with a keen interest. Good luck 🙂

    Liked by 1 person

      1. Kara

        That’s an amazing achievement. I’m so pleased for you. It’s sounds like you are on the right track.

        I hope it continues for you and improves again after your next round of treatment!

        Liked by 1 person

  11. Cindy I am so happy and excited for you! I hope others will agree to partake in this experiment and have significant improvement like you have experienced. I know there are several others in the Asheville area who suffer from MdDS and I hope they will contact Dr. Fox about this potential treatment option.

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  12. Phillip Chadwell

    Thank you so much for sharing this. My wife has been suffering from MDDS for 3.5 years. Dr Dai’s treatment made her symptoms improve similar to your results. I am hoping this treatment may knock it out for good. It would be great to get this doctor and Dr Dai together to share notes. Maybe together they could finally come up with an actual cure!!

    Liked by 1 person

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