Gyrostim Update

Found this on my Facebook today.  Because of this equipment and a very good doctor in Ashville, NC – Dr. Kim Fox, I am now 15 months better by about 90%.  Yes I still have good days and bad days, but this is so much better than more than 10 years of not being able to function.

https://goodmenproject.com/featured-content/mfnc-is-first-clinic-in-minnesota-to-add-gyrostim-lbkr/

 

 

One Year Anniversary

It’s been one year now since having treatment in the GyroStim in Asheville, NC. God definitely gave me a miracle. I feel truly blessed to have met Dr. Kim Fox in Asheville, NC. Without her willingness to try the GyroStim to help me with this MdDS, I don’t believe I’d be here today. I was becoming so desperate and depressed to the point I was feeling I was no value to my family. The one thing I did during those dark days was talk to my husband. I was scared. He was my rock and I knew without God and him, I would loose the battle to fight on in the Hell I was living. Then my miracle happened  seeing a story about a stroke patient who was using the GyroStim for balance and cognition gave me a place to try.  I was walking with a cane ready for a wheelchair and thought this had to be something more than a vestibular disorder.  It had to be MS or maybe a stroke.  Now after a year, I’m not 100% but I will accept what gains I have made of about 90%.  I put up the cane or should I say Dr. Fox took it from me 5/2/2017.  She gave me a ski pole and said she wanted my head up instead of looking at the ground.  Dr. Fox is a very skilled Vestibular therapist.  Her clinic includes DPT’s (Doctor of physical therapy not an MD) but a skilled physical therapist.  She owns the clinic and has on staff a Psychiatrist or Psychologist, a therapy dog, and many other DPT’s.

I am so very glad I met Dr. Fox and tried the GyroStim.  Without God’s guidance this would not have been possible.  Miracles do happen even if it’s only 90% and not 100% and a cure.  Keep an open mind and just Pray!!

 

Mary Gray’s MdDS Success Story with GyroStim

           Mary’s Experience in the Asheville, NC GyroStim for Treatment of MdDS

 

In June of 2009 I was enjoying my day like any other day, and then all of a sudden the motion hit me like a ton of bricks.  There was rocking, swaying, and tilting; and I was terrified.  What was happening to me? Thinking these symptoms were just temporary, I didn’t seek medical advice.  After months of not being able to function correctly, I decided it was time to go see my ENT doctor.  He didn’t have any idea of what was going on with me, and his reply was “You’ll just have to live with it.”  Of course hearing those words devastated me, but obviously the doctor didn’t know me well enough because I don”t give up.  Little did I know that this would lead to years of my beloved husband taking me to doctor after doctor with every visit ending the same of not having a diagnosis.

There was a doctor in Memphis, TN that thought he could help my symptoms by injecting steroids into body and into my right ear drum.  Sadly, this treatment did not work, and I was not informed that having that many steroids put into my body could cause diabetes.  Soon after that visit I became a type 2 diabetic.  Very irritated at this point, I found a doctor in Indianapolis, IN that figured I just had fluid behind my right ear, and he thought that putting a shunt in would help.  Still no symptom relief.

After determining that the shunt was not working, he thought that I had an infected nerve that was telling my brain that I was moving.  He informed me of a surgery where there was a 90% chance of me being well again.  Just hearing those words made me schedule for the surgery.  My skull was cut open, and one of the nerves in my head was clipped.  Months of recovery passed by, and I still had yet to see a difference.  I called multiple times only to be told to keep giving it more time.  More time passed by and still…nothing.

I found a lady in Cleveland, OH that did some testing, and figured I had migraine related vertigo.  She prescribed me some medication, but guess what?  STILL NO DIFFERENCE!  At this point I decided to purchase a computer to do research myself.  After months of research, I came to the conclusion that I had Mal de Debarquement syndrome (MdDS).  Researching more about the disease lead me to read something that I didn’t like…there was no cure.  I set a goal to find one.

I found another doctor in Cleveland, OH that finally realized what I had, and he officially diagnosed me with MdDs.  I thought that he would be able to give me some sort of road to recovery, but I was disappointed when all he told me was that there was no cure and I would have to live with this the rest of my life.  Leaving the office crying, I was still determined to find a way to defeat this.

I followed a doctor on FaceBook that specialized in MdDS, and he was doing his practice through Chicago, IL.  Still on the hunt to cure myself, I scheduled an appointment with him and got on the road again.  Sadly, he told me everything that I had heard before.  I mentioned to him that I had found this treatment in NYC, but he lead me to believe that it was a waste of my time so I didn’t bother going.

In January of 2018 I came across an article that caught my attention.  I began to learn about the GyroStim being used to treat this disease.  I was so excited! This lead me to meet Cindy Beagle.  I read on her blog, Rocking In The Wind, about how in 2017 the GyroStim treatments were a success for her.  I immediately called her and she began to tell me what her symptoms were and how much the treatments had given her her life back.  With her having the same symptoms I had, I was anxiously excited to see if the treatments would help me.  I knew I had to give it a try.

In February of 2018 I was headed to Asheville, NC to meet Dr. Kim Fox.  I was so happy to meet her!  The knowledge that she has on MdDS is outstanding.  She suggested that I do 20 treatments in the course of two weeks.  I was nervous at first, but after my first treatment I realized that it was a piece of cake.  After about 10 treatments I could tell that my rocking had greatly reduced, and that my balance improved by 80%! After the last 10 treatments my rocking had improved by 90%, and I was thrilled! There was no swaying, and my balance was back by 100%!  After living with MdDS for 9 long years, I can finally say that I have some relief.

Written and Contributed by: Mary Gray

Back To The Beginning

What does mal de debarquement mean?
Mal de debarquement (or mal de débarquement) syndrome (MdDS, or common name disembarkment syndrome) is a rare neurological condition usually occurring after a cruise, aircraft flight, or other sustained motion event. The phrase “mal de débarquement” is French for “sickness from disembarkation”.

Mal de debarquement – Wikipedia

I thought I’d go back to the beginning because everyday someone somewhere is saying “What The Hell Happened To My Life”.  Recently I was in a Neurologist office for a nerve conduction study. I forgot to take a brochure on MdDS so I asked him was he familiar with this Vestibular Dysfunction. I got the traditional you are silly and you have 4 heads because there’s no such thing look. It just floors me that a doctor who deals a lot with neurological disorders and diseases doesn’t know anything about MdDS. Why? They say it’s a rare disorder. Maybe it’s just under diagnosed. If you don’t know what it is and have never heard about it, how can you diagnose a disorder that destroys lives, marriages, livelihoods, and much more. Ask a person with MdDS what is the simplest task you do daily, that is the hardest thing for you to do daily. Some will answer get out of bed. Others taking a shower or brushing their teeth. A normal person is scratching their head and thinking what, huh?  If a patient with MdDS can barely do the easiest task daily, imagine that they have a small child to care for, has to work, has a stressful on their feet job, has a spouse and/or friends who just don’t get it. My favorite saying is they don’t get it, until they get it.

Now let’s look at research for a cure. I think there are 4 doctors who are actively researching this disorder in the USA. There is Dr Cha, Dr Dai and I believe 2 others. They’re may be more who don’t get recognition but are knowledgeable enough to help, they are the clinicians. There is a piece of equipment called a GyroStim. I accidentally found this by a gentleman who had a stroke and was using the GyroStim for balance and cognition. I called GyroStim, got a list of locations and in May took a chance with a doctor who had treated MdDS for 10 years with Vestibular Rehabilitation Therapy, but had never tried treating with the GyroStim. She is an out of the box thinker and after knowing the risks and benefits we moved forward. It’s coming up on 6 months and I’m still in remission. This is experimental and needs more research and she is working towards that end. The name of the clinic is Avora in Asheville, NC. The name of the Doctor is Dr. Kim Fox. You can do your research, talk to GyroStim about other locations that may be closer for you. Just be sure the clinic knows how to treat MdDS and has a “target” system in the GyroStim.

For the Family and Friends of persons with MdDS. We may look perfectly fine on the outside, but inside we are suffering daily. Instead of saying you look fine to me, how about helping the person by cleaning the house, bathing the children, or cooking dinner. Stress is our enemy and rest our friend. Be kind. You never know when your time will come and you need help.

Life is Good for me right now. I know it can change in a heartbeat. The GyroStim is not a cure but a treatment and so I still watch everything I do. I try not to let Stress enter my world. If I can’t, I’ve learned to say No.  Work is not in my vocabulary for now….but maybe the anxiety of worrying about stress will abate one day enough to try to work at least part time or from home.

One last thing that has happened since writing this a few weeks ago, my mom is not well and has entered Hospice and my brother is not well after having several strokes and is now in a nursing facility rehabilitation program.  Stress is not my friend and I will certainly attempt to take things one day at a time.

The website for GyroStim is GyroStim.com

The website for Avora is AvoraHealthcom

 

UPDATE:

It is now April 29, 2018.  Mom passed December 18, 2017 and my brother is a permanent resident at the same nursing facility mom was located for 3 years of her life.  I made it thru the stress and now will proceed with life.  I now go and do a little shopping, ride my bike and do mini walks.  I still avoid stress and the anxiety has reduced but not 100%.  It was only 5 years ago that I was diagnosed after suffering and going to a multitude of physicians for help. Five years ago I was walking with a cane and rocking so hard it was very visible by others.  The GyroStim and Dr. Fox gave me my life back by about 90%.  I still occasionally feel the floating sort of a detached from my body feeling, but no where near where I was just one year ago  May 2, 2018 will be my one year anniversary.  No cane and no one can visibly see when I do have the floating feeling.  If I can not be 100%, 90% is good enough for now.  Hopefully time and neuroplasticity will give me 100%

 

 

 

 

Mark Cuban and His Dizzy Disorder

Mark Cuban posted a YouTube about his treatment in a Epley Chair. This sounds so much like the GyroStim but I’m sure has its differences. Here’s the YouTube he put out on a treatment for dizziness. Remember we don’t know what his diagnosis is but sounds very much like MdDS.  I am not suggesting one chair over another because I am not able to do so.  However since I was able to get to remission with the GyroStim, I will always be grateful for the opportunity Dr. Fox gave me in Asheville, NC

 

 

Caring Enough To Share

Life – One minute it’s great. You are planning your dream vacation or things in your life are just so good all you do is thank God daily for all the Blessings he has given you and your family.

Then you take your dream cruise, a flight you booked months ago to paradise, or you did nothing at all. You simply went to bed and woke up to a feeling of rocking, bobbing, swaying, trampoline walking, nausea, can’t think, concentrate, can’t walk, can’t shower and the can’ts go on and on. Now you say, what the hell happened. You still say your prayers and thank God for all his Blessings, but now you are asking Him to heal you.

A day goes by and you think I’ll be better tomorrow. Tomorrow comes and you thinking well one more day, I’ll be fine. A week then a month and now you are getting scared. What do I have. You make an appointment with your doctor who schedules an MRI of the brain and he refers you to an ENT. The MRI is negative and when you describe your symptoms to the ENT he/she says you have Vertigo. Gives you a script and says I’ll see you back in a month. In the mean time these doctors look at you like you have 4 heads. You did not describe Vertigo which is spinning but that must be what you have. You take the pills, return as directed and he/she refers you to neurology.  The Neurpologist says, looking you like you have 4 heads again, lets refer you to psych because you must be crazy. In the mean time you are suffering. Work, family and others are tired of hearing you complain. The doctors who gave you meds that can’t just be stopped, tell you they can’t prescribe to you anymore. They don’t tell you but they now think you are a drug seeker. You look for help going to doctor after doctor but get no help. In the mean time work is getting harder and your employer is becoming more impatient. Your spouse is picking up what he always expected you to do. So now your marriage is strained. Your life begins to fall apart and before you know it 5 years, 10 years have gone by and you begin to think everyone would be better if you were not here.

That’s why I CARE. That’s my story. Many doctors with no answers and then because of Gods amazing Grace you read a story about a man who had a stroke. He was using a GyroStim to help with balance and cognition. I contacted GyroStim and got a listing of locations. I live in NC and the only location in NC was in Asheville.  I called the clinic and received a call back from Dr. Kim Fox a Doctor of Physical Therapy. We talked for nearly 2 hours. She said while she had treated MdDS with vestibular rehabilitation therapy for 10 years, she had never treated anyone in the GyroStim for MdDS.  We discussed the risks and possible benefits and after understanding those, she said she would only do the treatment as a case study. Meaning she would write a paper about the outcome. I was scheduled to go up to Asheville on May 5, 2017. That was the first time since I had found a neurologist who didn’t look at me like I had 4 heads that I had a doctor who throughly understood MdDS. After a week of therapy I was 90% better. Experimental, needing more research, not a cure, this was a treatment that had promise. I returned in July for additional treatment because I wanted that 10% back too. I felt I got it but then realized I had a new problem. I was having a hard time adapting back to life as it was before MdDS.  Slowly. That is the answer. MdDS still lurks in my brain waiting for its opportunity. So I work harder to keep it away knowing it’s looking for its opportunity.

Now I must say my story does vary. I have a loving, kind and very patient husband. I lost my job, lost some friends and gained anxiety and depression. But the GyroStim gave hope and I have to share because I CARE about YOU!!

GyroStim.com

Update on GyroStim Treatment for MdDS

Gosh I really am having a hard time understanding how did this work so well. It’s been 5 months and I’m still in remission. Could this be the future cure for MdDS. I believe so. I keep wanting to shout it from the mountain tops that I’m cured but I know I still watch for triggers and feel it lurking in the background of my brain. So for now until more research is done, we’ll call it a treatment. It’s experimental but seems to be helping others too. Of course there are some with either no change or very little. Sometimes the aha moment comes a few weeks after treatment because the brain is still processing the treatment. If you have MdDS you should contact GyroStim.com.