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!!

Published by

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.

13 thoughts on “Gyrostim Treatment Update – Asheville Balance and Vestibular Center July 17-21st. ”

  1. Cindy I developed MdDS after a 7 day cruise to Alaska in July 2017. I’ve seen the ENT and a neurologist, lots of tests. I’m about 8 weeks into this and I’m scheduled at the Asheville Balance and vestibular center for gyrostim tx in October 2017. I’m hoping that early diagnosis and treatment will give me a good outcome. I couldn’t get in until late October so I’m doing traditional vestibular therapy until then. I was encouraged by what you wrote. Asheville is 4 hours from me. The gyrostim sounded like a better therapy than the one at Mt Sinai It’s also affordable

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    1. Thank you Lindy. I’m so glad you are going to Asheville. Dr Fox is the best!!! If you don’t seem to be making progress to your satisfaction, this may give you hope for after treatment. There 2 girls, one who left and was no better and one who was some better but not to her satisfaction. I have been in touch with both and both are doing much better now. Girl #2 has really continued to see a lot of improvement. The reason why….who knows. I therorize Neuro plasticity. The brain continues to process. I wish you all success in the world!! You deserve it as do we all. Life is so much better for me now. This project has become my passion for all to get well. Positive thoughts coming your way!!

      Cindy

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    1. Yes. Felt like I rolling down a hill or in a boat rocking with the waves. That is all gone now. I do on occasion get a phantom feeling of rocking. I have grounding exercises and mindfulness rest that relieves any feeling that creeps back. I will always have MdDS and will have to work hard to do my exercises and avoid triggers. At some point if I’m diligent with my exercises maybe habituation will happen. If so I will still need to avoid triggers like going on any boats.

      Cindy

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      1. Are you doing VRT exercises? I have been doing VRT for about a month. If so, which exercises do you find most helpful? I am not familiar with grounding and would love to know more about what that is. Thanks again for all the info.

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      2. Grounding exercises help the body to know center, forward, and backward. I stand center for 20 seconds, then lean forward without lifting my heels for 20 seconds, back to center for 20 seconds, then back on heels without lifting toes for 20 seconds, then back to center. Do this for 3 sets. This helps teach the body spacial orientation or reinforces it at least. I do this 3-4 times per day.
        You can also challenge yourself by turning your head Right, Left, and Center for the 3 sets or remain towards center.

        Cindy

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  2. Cindy, how are you feeling these days? Are your symptoms still in remission? I have been suffering mdds symptoms for 8 months and I am going to try the Gyrostim treatment. I am lucky to live in Atlanta and Life University is right down the street from my house. I haven’t been formally diagnosed with MDDS and I didn’t have a motion trigger, but my symptoms match exactly and I have ruled out other disorder (normal brain MRI, VNG, ECOG, etc). Like you said…it’s worth a shot.

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    1. Yes I’m still in remission and every day my energy gets better. If you can visit the center and see the GyroStim and talk to someone who truly is well versed in MdDS you should do that. I saw a post that the cost of the one in Atlanta was $8,000 with no guarantee you get to go into the GyroStim. It was said the money had to be paid up front and is non-refundable. Also you need to know if they have a target system. The targets are what help with cognitive and multitasking. The pitch and yaw of the GyroStim is used for spacial orientation. So all need to be employed to have a good chance of remission. But, this is experimental. And there are no guarantees. But it is so worth a shot. I think Dr Fox has now had 3 successes and 1 with no change in symptoms. There are two patients being treated next week. So more to come with this experimental treatment. Hope this helps.

      Cindy

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      1. Thanks for the info. Yes I have to pay upfront but it is not nearly that expensive for where I am going. I certainly looking forward to giving it a chance. I am functional for the most part and I feel the “rocking/gravity pull” sensation most when I am trying to sleep. Very annoying 🙂

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