Another GyroStim Success Story for MdDS

 

 

Contributed by Dave Novak with his permission  This is the story of his sister Susan and her GyroStim Success.

Hi Everyone. I just joined the group last week in support of my sister Susan who has MdDS. She has had bouts vertigo for over 10 years and after seeing multiple doctors she was finally diagnosed by a neurologist.

She had been able to work as a vet up until about 6 months ago when several airline flights triggered her worst symptoms yet. She described her gravitational pull as being a 9 and was been unable to get out of bed on multiple days. She is 45 years old and married with 2 young daughters ages 11 and 4.

About 3 weeks ago she was able to get into the Gyrostim program at the Asheville Balance and Vestibular Center. There is a doctor there named Kim Fox who has been incredible working with her and customizing each session based on her feedback. After each spin they record her rating from 1-10 of Spinning, Nausea, Brain Fogginess, Headache and Pull, and then adjust the machine based on Dr. Fox’s experience.

She started doing sessions 3 days a week and after the first week she got much worse. She was bed ridden for multiple days and found the sessions to be physically and mentally exhausting.

Her 2nd week was again 3 sessions and it was here that she turned the corner and started to feel her symptoms lesson. She is now thru her 3rd week and ecstatic at how much better she feels.. Dr. Fox is now recommending she increase her treatments to 2 per day next week in an effort to get her back to feeling 100%.

I know very little about MdDS and my exposure is limited to my sister’s experience, but her treatment on the GyroStim with Dr. Fox seems to be working wonders for her.

The web address for Asheville Balance and Vestibular center is http://www.ashevillebalanceandvestibular.com/

I hope this helps and wish everyone on here the best. If there are any questions let me know and I will do my best to get them answered.

Regards,

David Novak

Trinity News Published The Following Story – Sharon Chadwell

 

Sharon’s Story published

TRINITY — With her first luxury cruise fast approaching, Sharon Chadwell couldn’t have been more excited. She and her family were headed to the Bahamas for a three-day cruise.
The whirlwind trip was certainly a memorable vacation, but not of the weather-is-great, wish-you-were-here variety, and Chadwell brought home the worst possible souvenir — a rare, cruise-induced, neurological disorder that left her feeling perpetually woozy and fatigued, and nearly ruined her life.
“When I got off the cruise, I felt like I never got off the cruise,” the 50-year-old Trinity woman recalls. “I felt movement when I shouldn’t have been feeling movement, kind of like that sensation you feel after you’ve been riding a lot of rides at an amusement park, but it never went away. I told my doctor it was like being a buoy on the water — the up and down and back and forth and side to side, everything all at once.”
A neurologist diagnosed Chadwell with mal de debarquement syndrome, or MdDS. The disorder, which is typically triggered by a cruise, an aircraft flight or some other episode of sustained motion, causes not only the persistent sensation of motion — the most predominant symptom — but also such symptoms as fatigue, headaches, cognitive impairment and an inability to concentrate.
Chadwell had all of those symptoms. For four years, she worked with different doctors — including one specialist as far away as New York — to find some kind of treatment for the increasingly debilitating disorder that would allow her to get her life back.
Ultimately, she would find her relief at a clinic here in North Carolina, with a medical tool that looks more appropriate for a young, fit astronaut in training than a 50-year-old grandmother in distress.
****
Chadwell’s MdDS journey began in January 2013, when she, her husband Phillip and their then-13-year-old twins Jared and Rachel embarked on their cruise from a port in Florida.
Although she’d never sailed on the ocean before, she’d spent plenty of time fishing on her husband’s bass boat — and never had a problem — so seasickness was not a concern for her.
“We had really rough seas the first night, and the rest of my family got sick with normal seasickness — nausea and vomiting — but I didn’t have any of that,” Chadwell says.
She does believe, however, that that’s when her MdDS kicked in. She remembers sitting at one meal, in particular, when the boat was moored, but she felt as if they were in the midst of a storm on the high seas.
“It was a pretty intense sensation,” Chadwell says, “but nobody else felt it.”
After the cruise, her symptoms got worse — the motion sensation, the fatigue, a nonstop headache, brain fog, and an inability to look at a computer screen for any length of time. By the end of March, she had quit her job at the Archdale-Trinity Chamber of Commerce because she could no longer function in a work environment. She also struggled to perform simple tasks such as running to the grocery store, preferring instead to stay in bed.
Her primary-care doctor said her symptoms would probably pass, but when they didn’t, he referred her to a neurologist. He diagnosed the MdDS and suggested a number of medications Chadwell could try.
“I went through a whole hoard of them,” she says. “Most of them just made me more sleepy — they didn’t seem to help with the symptoms at all.”
Chadwell went through a battery of other medical professionals, from neurologists to vestibular specialists — doctors whose area of expertise is balance — to balance rehabilitation therapists, but none could help her. As she continued getting worse and hope began to fade, Chadwell added depression to her list of symptoms.
In late 2014, nearly two years after the onset of her MdDS, she saw a vestibular specialist in New York City who had had moderate success in helping patients with the disorder. After a week of treatments focusing on an inner-ear mechanism believed by the doctor to be the cause of MdDS, Chadwell improved significantly.
“I got about 80 percent of my life back,” she says. “I wasn’t cured, but I could do a lot of things I couldn’t do before. I still had the movement sensation sometimes and the headaches, but I could suffer through that to do things my family needed me to do.”
That lasted until February of this year, when the disorder became aggressive again.
“Sometimes your MdDS decides you’re going to be sicker for a while,” Chadwell says. “It’s a very vicious condition and will come back on you with a vengeance. That’s what happened to me.”
****
The breakthrough came in May, when Phillip Chadwell read about a woman with MdDS who had been successfully treated with an odd, futuristic-looking device called a GyroStim. The clinic was in Asheville, just a couple of hours from the Triad, so he encouraged his wife to see if she could get an appointment there.
“When you’ve had MdDS as long as I did,” she says, “you think anything is worth a try.”
The last week of June, Chadwell spent a week undergoing GyroStim treatment at the Asheville Balance & Vestibular Center, which has one of only a dozen GyroStims in the country.
The GyroStim, which was originally used by NASA and the U.S. Air Force, is a large, automated rotational chair that spins in all directions, including upside-down. It can spin as slowly as a single revolution per minute or as fast as 30 revolutions per minute. The GyroStim is used for exercise balance training — for athletes, for example — but has also been used for individuals with balance disorders and dizziness, as well as concussions, attention-deficit disorder and post-traumatic stress disorder.
Chadwell became only the second MdDS patient to be treated with the GyroStim.
“I had been working with MdDS patients for the past 10 years, attempting vestibular rehabilitation, but with only fair success at best,” says Dr. Kim Fox, Chadwell’s doctor in Asheville. “We were primarily doing exercises that we do with other vestibular disorders.”
Earlier this year, an MdDS patient asked Fox to treat her with the GyroStim, and the doctor agreed to give it a try.
“She had had the disorder for 10 years,” Fox says, “and she is now symptom-free.”
That’s the woman Phillip Chadwell had read about, and now other MdDS patients are reading about his wife.
“My very first day of treatment, they lowered my symptoms to almost nothing,” Chadwell says. “They weren’t quite gone, but I remember thinking, ‘There’s hope for this.’”
By the end of the fourth day, the moving sensation was completely gone. The headaches and nausea persisted longer, but they eventually subsided, too.
According to Fox, the GyroStim helps retrain the brain’s systems for managing balance and stability.
“You’re stimulating neural pathways in the brain,” she says. “The brain wants to heal when it’s been damaged — it just needs to be given the right opportunity, and that’s what the GyroStim does. What happens in MdDS, how the neural pathways are being utilized gets shifted, and the brain adapts to the abnormal response. It adapts to being on the boat just fine, but once you get off the boat, it doesn’t adapt.”
The GyroStim, then, helps return that abnormal shift back to normal.
“We don’t have this big body of scientific evidence yet — we need more research — but we have these good clinical trials showing patients seeing improvement,” Fox says.
Following Chadwell’s success, Fox is currently treating two more MdDS patients and has at least another dozen scheduled for treatment.
“It’s amazing,” Chadwell says. “I’ve gotten my life back.”
jtomlin@hpenews.com | 336-888-3579

Life After MdDS

Since writing this, Dr. Fox is currently treating 2 more MdDS making it 6 patients she has treated in the GyroStim. Two achieving remission, one no change, and one is still in treatment and her symptoms are at a lower level.  The two currently being treated are improving and finding their symptoms are being reduced with this treatment.  So now I find it is time to publish this article

In May 2017 I went to the Asheville Balance and Vestibular Center for treatment in the Gyrostim for Mal de Debarquement Syndrome (MdDS). As the first patient being treated in the Gyrostim by Dr Fox, she and I had no idea if things would get better or worse. Well things really got better. Left with only a mild up and down bob, we made a plan for me to return in July for an additional week of treatment. In the interim, patient #2 was treated in the Gyrostim achieving zero symptoms and returning from a 3 hour drive home with continued zero symptoms. This is all so promising for patients with MdDS. But, the 2 of us realized that being normal can be a challenge too. We were sick with MdDS for 10 and 4 years respectively. We both returned home not knowing how to handle a life of normalcy. What would we be able to do without aggravating and reversing what was achieved by Dr Kim Fox and the Gyrostim. How would we live again. Not sure if we could return to the society we excited so long ago.  So now the anxiety of having MdDS has shifted to the anxiety of not having MdDS. The answer may lie in how much support we have in our home and with family and friends. We cannot allow ourselves to be pushed to do things we are not ready to do. If we say no, it’s not because we don’t want to, it’s either because we can’t or we are not ready to venture out to that point yet. Baby steps. We must baby step our way back to normalcy. Ten minutes of a walk, 5 minutes in a grocery store, etc.  It’s now been 3 months for me and I have been able to be in a grocery store for no more than 30-45 minutes. I am riding my 2 wheel bike now up to 6 miles but started by just riding to the end of our road.

Moral of the story is be patient. Normalcy will return in the form of habituation. Don’t push yourself and if you do know your limit. Listen to your body. Rest, rest, rest. Rest is so vital to recovery. Be kind to yourself. Lobby support from your friends and family. You will very quickly learn, if you haven’t already, who are your true friends and loved ones. Those who understand and pray for us daily. Those who don’t and talk behind our backs feeling that we were never sick. Love on the people who loved on us as we struggled daily. Thank them for their compassion and support.  No one gets it until they get it.

http://www.ashevillebalanceandvestibular.com

Gyrostim.com

 

Forty Minutes of Heaven

I have linked a video posted by someone on MdDS Friends FB site. You must take the time to watch. At the end the moderator says we must challenge our vestibular systems. He’s so right. The GyroStim certainly does just that. I didn’t realize till I went in May and just last week it was a challenge. I just thought of it as fun. Ok not fun but it did challenge my vestibular system and that’s why I think it worked for me. For those with family and friends who don’t believe you have an illness, this is a MUST watch!!

https://youtu.be/8i3J9OFcsY4  

Gyrostim Treatment Update – Asheville Balance and Vestibular Center July 17-21st. 

Dr Fox is 100% by far the best with her knowledge of MdDS. There are others too but for me they are so far away. Asheville is just 5 hours away. Ok more than that because Dr Fox requires me to not drive more than 1.5 hours without stopping to get out of the motion of the car.  Motion reintroduces motion. Without stopping or using Valium to suppress the vestibular system for air travel, all we are doing is reintroducing the motion to our brain and making ourselves feel better. At least that’s the way I understand things.

Since my last treatment I feel 100% better. No symptoms. The brain fog -gone. Cognitive-back. Balance -back except when I stand for long time in straight upward position – per Dr Fox normal for everyone but with this disorder we are more aware.

It is just my opinion but I believe in the Gyrostim. I think Sharon would agree. But it may not be an option for everyone. Not everyone will benefit from this therapy. It is however worth a try.  MdDS is the same diagnosis but we all have variants. So with this being experimental be aware it may or may not be your “cure”. Cure what does that mean after Gyrostim?  It can mean you still have some balance issues but the migraines, brain fog, etc are gone. It could mean you are 90% better and feel really good and you can function now. It can mean you are 100% symptom free. Life return to somewhat normal to I am completely normal. Ok maybe you like me have never been normal but we are at least back to our own “normal”.  It can also mean no improvement. That would be the worse case senario.

Be kind to yourself. Don’t beat yourself for trying to do more today than yesterday and ended up paying a price. You tried. Don’t let others dominate your thoughts by their inconsiderations to your disorder. Don’t give them any occupied space in your brain. They don’t get it until they get it!!  Try not to focus only on the symptoms of MdDS. Relax, breath counting your breaths and clearing your mind. Enjoy the feeling of mindfulness.

POSITIVE THOUGHTS!!

Sharon’s Story written by Sharon for publication.

In January 2013, after a short 3 day cruise which consisted of one night of rough seas, I lost my life as I knew it.  Immediately following the cruise, I was excessively sleepy and tired with extreme headaches and nausea.  In addition to those feelings I also felt a constant sensation of movement which I described as being like a buoy on water.  Eventually diagnosed with Mal de Debarquement, as you may be very familiar.  Within two months of going on the cruise I had to quit my job. Unable to multitask, concentrate, look at a computer screen, or maintain the ability to perform simple tasks such as taking phone messages.  After seeing many medical professionals; doctors, neurologists, vestibular specialists, balance rehabilitation therapists, etc.  locally and away such as Duke Medical in Durham, NC and Wake Forest Baptist Medical in Winston-Salem, NC, and trying a variety of drugs, I began to lose hope of ever being rid of this horrible condition.  It affected every aspect of my life, from working, interacting with family, especially grandchildren, and interaction with friends.  A deep, dark depression took over.

In May of this year, 2017, my husband read a blog regarding the treatment of Mal de Debarquement with GyroStim.  He nor I had ever heard of this.  He quickly encouraged me to contact the Asheville Balance & Vestibular Center to inquire.  Jordan, GyroStim Tech, spoke with me regarding the treatment and noted during our conversation that an MdDS patient they had recently worked with in the GyroStim reported 90% improvement after just 1 week of treatment.  I quickly said I would gladly take a 90% improvement or anything close to that.  Not being terribly far from where we live it seemed like a viable option.  And boy was it.  I scheduled treatment for the last week of June.

Upon arriving for treatment, I was greeted by Jordan and shortly after by Dr. Kim Fox.  My balance was tested using a specialized piece of equipment called a Computerized Dynamic Posturography (CDP).   I did not score well, my score being a 62, well below the average for my age and gender (50 years old and female).  Following this test, Dr. Fox and Jordan administered the first GyroStim treatment involving multi-axis rotation movement while using a laser pointer to shoot at targets around the perimeter.  That first day was a somewhat simple exposure to the Gryostim and I felt quite better.  The 2nd day the GyroStim treatment intensified and I stopped buoying completely.  It made me incredibly tired as I slept between and after treatments.  Unfortunately, the next morning at breakfast the buoying returned.  I think it had to do with the loud environment.   The 3rd days treatments were more intense, and again the buoying ceased.  Headache, nausea and fatigue increased so much so that all I could do was sleep between and after treatments.  By the afternoon of the 3rd day of treatment I was an emotional wreck, literally unable to control the crying.  I did not want to return to the treatment, it stressed my brain completely.  My body and mind felt heavy, unhappy, unbelievably fatigued and stressed.  Dr. Fox showed compassion and concern for making sure that I was treated for every aspect of the Mal de Debarquement, and we made decisions to substitute GyroStim treatment in the afternoon to learn “grounding” techniques and relaxation exercises, and some other decisions regarding being medicated for treatment the next day as prescribed by my MD on an as needed basis.  Dr. Fox was spot on with her intuition as how to proceed.  On the 4th day I am happy to report that I was still not buoying, but wasn’t sure what I was feeling.  Like maybe there was some movement there, but mostly insignificant.  At that point, treatments became about trying to abate the headache, nausea and fatigue.  After the 4th days treatment Dr. Fox asked that we test the treatments a little and go out in public.  Hubby and I went to an ice cream shop early that afternoon.  I am happy to report I did very well.  After ice cream, I returned to the hotel and slept until dinner time.  Again, we ventured out to a restaurant with an outside eating area, and again I did very well.  Buoying did not return, not at all.  Still battling extreme fatigue, with some headache and nausea, we returned to the hotel where I again slept.  By the 5th day of treatment I wasn’t wanting to do GyroStim at all, but pushed through on Dr. Fox’s advice, to try and rid the headache, nausea and fatigue.  It did help, but did not completely alleviate these symptoms.  Having checked out of the hotel that morning, I slept in our vehicle until lunch time, had lunch in public and did just fine.  Meaning the buoying did not return.  Returned in the afternoon to the Asheville Balance and Vestibular Center.  No further GyroStim treatments were given.  My balance was retested on the CDP.  Much to everyone’s amazement my score jumped to 90, which I understand is very good. I couldn’t believe it. My scores were above normal for all areas of balance compared to women in my same age group considered to be “normal” (i.e. without any medical conditions).

I am happy to report it has been 18 days since the end of my treatments with Dr. Fox and there is still no buoying.  The headaches, nausea, and fatigue have gotten so much better.  I am beginning to feel more energized.  Still taking it slow though.  Maybe getting better is the same as when I first got sick.  My brain adjusting back to normal is going through the same trauma as when it first came down with Mal de Debarquement.  This is what it feels like to me.

Follow up after GyroStim Therapy May 1 thru May 5, 2017

It’s been about 5 weeks since I returned from seeing Dr. Kim Fox at the Asheville Balance and Vestibular Center in Asheville, NC.  To date I’ve only had one (1) off day.  I spoke to Dr. Fox on that day and told her I was feeling more bouncy, bobbing, etc.  I can say it was a stressful day for a lot of reasons.  Dr. Fox has such a calming voice and reminded me to do my breathing exercises, grounding exercises, head and eye exercises, as well as to rest.  I was on the road with my husband, visiting with my mom and going with her to the doctor.  Mom is 83 and is not in the best of health, so I guess this made my anxiety level tick up.  After finishing with mom and on the way home, I rested and did my breathing exercises.  As soon as we got home, I did my grounding, head and eye exercises.  I also went to bed early that night and my head was not on the pillow 5 seconds and I was out like a light.  I was very fatigued as I did not sleep the night before very well which probably started all of this anxiety.  Dr. Fox reminded me that the Anxiety and Vestibular systems cross each other in the brain, so one affects the other. The next morning and day was so much better.  Back down with my balance to maybe a level 2-3 from a 5 or higher the day before.  I was not emotional and was able to function like the day before had never happened.  Dr. Fox called me the next day to check on me and we talked more about me returning to Asheville for more therapy to see if we can “knock” this MdDS completely to the curb.  I have 2 doctors and a nurse practitioner who are so very supportive.  I know I am blessed to have been given this opportunity with Dr. Fox and have the support of my neurologist and Lindsey Jernigan, NP.  Lindsey is new for me replacing my family doctor.  She told me on my first visit she reviews all her patient charts the night before or the morning of the appointment and quite frankly she had to research me.  I showed her this info on the Gyrostim and she was so very supportative.  Wow, 3 people in the medical field who thought I could be so lucky and blessed.

Now I will be looking at schedules and planning a week or maybe 2 in Asheville to continue this case study for Mal de Debarquement Syndrome and praying for all of us this becomes a viable treatment for MdDS giving all of us HOPE for the future.

This is dedicated to all MdDS and Vestibular Patients (not all vestibular disorders can be treated with the GyroStim).

GyroStim.com

http://www.ashevillebalanceandvestibular.com/

Rockinginthewind.blog

 

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/

Pushing Through The Day

Once in a while I have a good day, but most are very difficult. This week has been very difficult, but I continue to try to push through no matter. Upon getting up in the mornings I go ahead and make the bed, otherwise it might not get done. Just making the bed may sound easy to most, but to those of us with balance disorders it is not. The reason is your movement is from one side of the bed to the other which is sort of like being on a Merry-Go-Round for us. After the bed is made, we have to sit and rest to settle the movement which for me is like being on a boat, bobbing, sway and rocking. After some rest, I then tackle picking up clothes and/or dishes. To most that seems awfully simple. Aha, not to those of us with balance issues. Moving up and down again mimics the boat movement and gets the movement going again. It is really not the in motion that bothers me, but the stopping of the movement that is most bothersome. Standing is the worst so I sit until I can move again.  As you can imagine the reason movement does not bother me is because I can move with the boat movement.

The simplest of tasks are so difficult. I’ve often wondered if I will ever work again. I’ve thought if only I could just babysit a newborn, as I would not have to chase them around. But, I think of the safety of the child first. If I am holding the child and fall, I would be crushed if I hurt someones child. I have thought since I love to drive as the symptoms do go away while driving, that I could deliver papers. But I could not get through an interview because I rock so very badly until I actually get in the car and drive. Come to a stop light, I am back to bobbing, swaying and rocking again.

So the moral of this story is do not take the simple things of life for granted. I pray every day for a cure and to do those simple things again.

More Later………