Spinal Modulation Completes Enrollment of Its Landmark U.S. Pivotal Trial Evaluating the Axium Neurostimulator System for Chronic Pain | Business Wire

The ACCURATE study enrolled 152 patients at 22 centers throughout the United States. This represents the largest neuromodulation study to be conducted in patients suffering from nerve injuries (peripheral causalgia) or complex regional pain syndrome (CRPS, also known as RSD) to date.

“Approximately 10-50% of patients who undergo common procedures like hernia repair, knee surgery, and other lower limb surgeries will suffer from chronic pain resulting from nerve injury2. These conditions have historically been difficult to treat with currently available technology,” said Dr. Timothy Deer, co-study lead and CEO and President of the Center for Pain Relief in Charleston, West Virginia. “The ACCURATE trial is a landmark study that could change the way we treat these chronic pain conditions. Results from prior European studies have been promising, and we are hopeful that the ACCURATE trial will continue to substantiate the effectiveness of this therapy for our patients.”

Read more-

via Spinal Modulation Completes Enrollment of Its Landmark U.S. Pivotal Trial Evaluating the Axium Neurostimulator System for Chronic Pain | Business Wire.

Vaca woman continues to advocate for those with painful nerve condition

Pain Awareness Month 2014

Read Jo Hewitt’s story here

http://www.thereporter.com/news/ci_26449322/vaca-woman-continues-advocate-those-painful-nerve-diseases

She also founded the Jingle Bell Benefit Run/Walk to Candy Cane Lane two years ago to benefit RSD and raise awareness by doing an annual event.

This years event will be held on December 11, 2014. Find Jo on Facebook for more information and to see how you can help.

Author Donna Nefferdorf Releases “To Know Him Is To Love Him”

- A Real Story of Healing With the Help of the Creator

ToKnowHimIsToLoveHimCover. DonnaPhysical, emotional and spiritual challenges can be part of life.  Author Donna Nefferdorf has faced them all and tells how she has been able to overcome these challenges with the help of the Great Physician in her new book “To Know Him Is To Love Him.”

 

The early response from readers to this heart-felt tale of faith has been remarkable.

 

July 12, 2014

 

No one can honestly deny the world is filled with suffering; physical illness, disease, and mental scars that have carried on for generations.  Is there a way to heal?  And is it open to each and every person, if they open up to be healed?  This compelling subject is addressed, by author and minister Donna Nefferdorf in her recently released book “To Know Him Is To Love Him” that tells her real-life story of facing these kinds of issues and overcoming them, with the help of her faith and the Creator.  Readers are reacting to the honesty and delivery of this message of hope, with enthusiasm.

 

“I really believe my book offers true hope and healing,” commented Nefferdorf.  “To Know Him Is To Love Him, reveals the ‘power of God’s love’ to help anyone overcome their own life challenges.  I’ve experienced this power of healing myself, and it’s a blessing to be able to share this experience with my readers.”

 

The book was published by Advanced Global Publishing in Shippensburg, PA, on June 27th, 2014.  It’s currently available across multiple formats including as a paperback through Amazon.com and BarnesandNoble.com and as an ebook from Ingram.

 

According to Advanced Global Publishing their goal of publishing the book, as well as all of their publishing projects is, “Sharing the love of God one heart at a time to advance the Kingdom of God on earth”.  It’s very clear that “To Know Him Is To Love Him” is a book that embodies that goal, an effort to show the power of the divine to heal everyday problems and bring happiness and fulfillment.  Nefferdorf eloquently helps readers boost their confidence, self-image, courage, and compassion as they come to see in life they are never alone while battling serious health problems, even life threatening ones, or  in better times when they enjoy abundant life as the Creator intended.

 

Nefferdorf is a minister with Global New Beginnings, which aims to lead others to a “new beginning” with the Father, through a personal relationship with Jesus Christ.

 

According to early reviews, this new book should go a long way towards inspiring others to explore this relationship.

 

Evangelist Janice Hollan, recently said, “This book is my friend’s new release and God blessed me to endorse it! I would encourage all to read it! You will find hope, healing, and encouragement in your own life through the testimony of her storms!”

 

For more information be sure to visit http://www.globalnewbeginnings.com.

 

Donna is an RSDS Survivor and her story will tell you how. ~T

Nobody Said It Was Easy..

Sometimes people only see what they want to see, hear what they want to hear, but do they really “hear” , “see” it”? It’s all perception! We live in a world of perception and deception especially online.  The typed word is “perceived as “tone of type”. People take from it what they will. Imagination goes with it, fantasy, an idea of who or what you are. Tone of Type means how the other person takes your post, how they imagine it as if it came from your lips. It may not be what it is intended to be though after all there really is no tone, there is no voice, there is no body language.. it’s all the typed word. No seen or heard emotion. Nothing to actually base the tone on. I’ve shared so much through Social Media over the years, but I assure you, even with those who I thought were “friends”, I’ve never shared everything.

Since December of 2012 my life, our lives  have changed drastically, but let me be fair in saying that just because I haven’t shared like I used to that it hasn’t continued.

(I know some of you know)

Due to betrayal, I haven’t revealed what I might have. I’ve shared pieces and parts. At the end of 2013 I learned a valuable lesson. One that carries with me. I already had reservations and a trust issues.. that person only reminded me that barriers and walls are meant to be kept up.

My husband had already had 2 heart attacks, he had 2 stents in his heart since he was 37 when the first occurred. The second occurred in 2011 if my memory is serving me correctly. Not many months after that our son, who was a freshman at the time sustained several brain injuries that still existIMG_0263 today, so while I praise all of his efforts and good deeds online, we are still working to relieve him of symptoms, like breathing, smelling and other issues.  I will not be ashamed to say that he was diagnosed with ADHD and was on Adderall for it for some time. By choice, partly his choice, we decided to go off the Adderall over a year ago and let his body take it’s course. He’s strong!  He’s young! My Lil ‘ OZ! My husband had a quad bypass 17 months ago and is still dealing with Diabetes, Neuropathy, and the aftermath. He takes 11 medications upon waking, 4 in the afternoon, 11 at bedtime. I could care less about me anymore, even though it’s hard. Yep, hard! He took care of the me, I couldn’t keep up on so much, now I have to pull for all of it and I …

Will!

ErikandRikki

 

 

WoodVanFleetFamilyMarch92013

Some people think because I have hope in my heart, once every 3 months or so that I’m able to go out that I think my shit don’t stink, that I’m better than someone else…

I’m not! Nor would I ever think it. Seriously? ! I’ll be the play’a in my own game!

A pretty outfit, a little make-up, one leg leaning to the hard left while the other holds it up, wheelchair in the van, the stick out of view, but no one knows..

Invisible diseases are even invisible among the very people they should be acknowledged from.

Even those in remission are looked down upon, I mean you can’t have a bad day, you’re in remission, right? Wrong! Remission only means an absence of symptoms for a time being it doesn’t mean that no symptoms will present.

A time being can be minutes, hours, days, weeks..  there is no absolute!

Those people still hurt too, still feel fatigue and get sore, wear down more quickly than someone without an illness.

I’m not in remission! I just understand those who are.

Now have a CRPS patient taking care of another ill disabled person… add struggles, surgeries, life, precious children, the grand baby. This has been my life. As my son approaches another surgery next week…

When you think you’ve had enough and you can’t go on….  Go On!

Don’t ask me how I do it..

Auto pilot!

Don’t ask me how I feed the dogs, the cat, love my children, my grandson, my family, however distant…

Or how I take care of my grandson…

Don’t ask me about me..

Don’t even ask me how I lift my eyes..

Just know that I do..

~ #TVa

#StrongerThanPain

(But he leaned in and whispered it might be worth it)

 

 

I originally wrote this weeks ago and used the same title recently on FB to show how proud I am of my (our) grandson De’Mantai Xayvier Howard who made 8 consecutive honor rolls and graduated at the top of his second grade class (and the entire school) . … (this post was written before that and left in drafts)

FAQ: Reflex Sympathetic Dystrophy | The Dr. Oz Show

FAQ: Reflex Sympathetic Dystrophy | The Dr. Oz Show.

 

Philip Getson, D.O. • Yesterday (July 25, 2013) “I was given the honor of having a post on RSD featured on droz.com Please feel free to comment on it” 
“I am delighted to get the disease the exposure it so deserves”. “Here is the link for the RSD post” These above are the personal words of Dr. Getson, I have quoted. 
http://www.doctoroz.com/videos/faq-reflex-sympathetic-dystrophy

 

I am delighted that Q & A’s regarding CRPS/RSD (Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy) made it back to Dr. Oz. via Dr. Getson.

In addition, the differences between CRPS/RSD and Fibromyalgia were touched on.

Paula Abdul tried to do her part in sharing the debilitating outcome this illness causes, but as some of us know television editing can leave a lot out.

Even so I think Paula made her point. There were some people that tried to convince me of how terrible she did, I re watched that segment I can’t tell you how many times and the bottom line is she did great! How much can you do in so little time. It wasn’t an RSD specific show in the first place it was to showcase a vitamin line of healthier living. So yep, good job for what she had to work with.

For Dr. Philip Getson who has been educating and treating CRPS/RSD for decades, I am honored to have spoken to him briefly via email and look forward to again. I also look forward to the P.A.I.N. SUMMIT hosted by the Power of Pain Foundation during Pain Awareness month where he will be Guest Lecturing. I would love to meet him in person and attend the conference in Arizona but if not, I will still be attending via UStream and have already registered.

 

~Twinkle V.

Seeking Photos for the Video Slide Show Presentation “People Striving to Make a Difference in the Lives of Those Suffering and Surviving CRPS/RSD”

People Striving to Make a Difference in the Lives of Those Suffering and Surviving CRPS/RSD.

Hi everyone!

I’m seeking Photos for a future video that will feature those of you who strive to make a difference in the lives of those with Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy.

Once all photos are in it will be fairly decided who will be featured in the video. Space will be shared with other’s who work just as hard yet has either never been or has rarely been recognized for their efforts. September is Pain Awareness Month and if all goes well this video will debut during that month.

Your photo can either be a head shot or a body shot. Send up to 2 photos, if you like!

Along with your photo, in the email body, please include:

1. Name, Foundation, Organization, Website Name, Blog Name, Radio Station, Etc. (You can also list all of the above)
2. City and State. (Or  Province/ Country) (This video is not limited to the United States)
3. A brief bio on what you do (or have done) to make a difference in the lives of those suffering to survive CRPS/RSD. If the bio is too long it may be edited for space.

If you are a Mother or Father taking care of your CRPS/RSD diagnosed child, you are making a difference in the life of someone. If you are a child (adult or minor) of someone with CRPS/RSD and you are caring for your parent, you are making a difference, too.

In your email please add that you are giving me permission to use your photo and info. (I, (your name/organization), hereby give my permission to Twinkle VanFleet and RSD(S)-CRPS Advisory to use my photo and enclosed information for the Video Slide Show Presentation People Striving to Make a Difference in the Lives of Those Suffering to Survive CRPS/RSD that will be made public via YouTube.

I have personally invited a few people to be featured. If you do not get a personal invite from me this does not at all mean that I would not love to feature you. Please don’t feel shy or as if you aren’t good enough or haven’t done enough. You are just as important! This will be an annual project! No one will know from me if I’ve contacted you or if you sent on your own. That will be your business to disclose or not! ~smiles

Deadline- August 15, 2013. If you need a few day extension due to pain, please let me know before the deadline.

Please send to: submissions@crpsadvisory.com

If you have any questions, don’t hesitate to ask. :)

Thank you!
~Twinkle VanFleet

Independent RSD/CRPS Patient Advocate, Spokesperson, and Educator.

California Ambassador at the Power of Pain Foundation