Kimberly Caputo’s GyroStim Treatment for MdDS and her Journey to Remission.

 

 

Contributed by Kimberly Huffman Caputo and shared with her permission.

“GyroStim  treatment. I started my second week of treatment today and I am symptom free for the first time in 10 months!!! Praying this is permanent!!!”

The speed looks quite fast. That’s because she is in her second week. Dr Fox is her treating Therapist and in the first few days she works to get one use to the rotations and speed of the GyroStim.

I spoke with Kimberly today and at this time she is at zero symptoms. She is careful to also call this a treatment and not a cure. She said “it’s sort of like heartburn. It may return but the treatment is there to make it go away again”. She also said the exercises Dr Fox gave her work to put down any feelings of the symptoms that try to pop in and start again. It is definitely work to keep the symptoms from returning. More research is certainly required for this experimental treatment.

Cindy Manuel Beagle

 

Melissa Cook and her Journey from MdDS to Remission

Melissa asked me to add she was treated in Asheville, NC by Dr Kim Fox

Contributed by Melissa Cook and published with her permission.

 

I have not been able to post about my recent journey for my balance treatments because it was an emotional one as much as a physical one and I wanted to be able to hike to Pickens Nose to celebrate and today was the day I thought I was ready. The red balloons were the ones I released that represented all the symptoms I have had since 2006. Nausea, Fatigue, Headaches, Dizzy, Panic Attacks, Anxiety, Tilting, Tipping, Vertigo, Swaying, Bouncing and Bobbing. All this because of my brain be very over sensitive to motion. The silver star was released because in treatments I was to look look at a star when the machine I was in stopped. If it was moving then I went another round. 10 rounds turned into 20 rounds which meant 10 days turned into 14. After 20 treatments I was Solid as a Rock which the docs consider Remission. So on this Star I wrote “Solid as a Rock”. And on the other side I wrote that I was Gyrostim patient #7 for MdDS , hence the words on my shirt done by my awesome sis n law Teresa. You will see my happy face and my ugly/happy cry face as I released these balloons. The Lord brought me to this and he brought me thru it. Thanks for all the calls texts and especially prayers for me. And I proudly say God Is Good all the time. Philippians 4:13

 

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