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

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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.”

Back From Leave- Update

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Came back from leave about a week ago. Trying to get back to my volunteer related activities and other endeavors. I don’t know how often I will be on and won’t be available for all things. Living with Narcolepsy on top CRPS and the rest isn’t easy either and I don’t take medication to wake me up, so I do the best I can with that. It’s extremely hard to have so much going on and it seem so unreal to outsiders looking in, listening, reading my posts. I wake up at times and it’s takes me a few minutes to realize it’s not a bad dream, but soon enough I know it’s the ongoing reality. As some of you know, I’ve been sharing some of my daughter Kharisma’s story under blog posts “Taking a Break” and a little on FB. I just haven’t yet given any specifics. When she seen the Specialist yesterday, we were left confused. He stated he believed the hospital assumed the previous diagnosis due to the size and placement of the lesions on her liver, especially the largest which is resting at the side of the liver wall. He seems like a good doctor. I’m glad he’s reviewing instead of jumping right into invasive pokes. I will go ahead and reveal the first believed to be diagnosis now as he thinks it may be another type of cancer instead. The first was Epithelioid Hemangioendothelioma. I had a hard time with it.

For more information,

Towards a Proper Diagnosis and Understanding of the Pathogenesis of Epithelioid Hemangioendothelioma

Now he is reviewing her Biopsies, MRI, CT, Blood tests, X-ray’s and all records before ordering the repeat Biopsies. Now he thinks she may have Colon Cancer. What, how? I research everything I can get my hands on. While people can have Colon Cancer and not even know it and even perhaps have no symptoms, she doesn’t have any symptoms of Colon issues. Only the pain. Pain I know because of my own liver issues and removal of lesions with my second Gall Bladder surgery just 15 months ago. We’re still left without definite answers so treatment is still in the future. Many more appointments. She’s 26, our oldest and the mother of our 8 year old Grandson.

2 days after the injury to my right hand our 17 years old son Kurtis finally had his appointment at Shriners Children Hospital in Sacramento. We learned that his Degenerative Disk Disease was not the results of his brain injuries when he was 15 and diagnosed with DDD at 15, but instead Congenital Defects of the Spine. He was born with Spinal Stenosis and Spondylosis. We’ve known for 2 years that his 2 of his disks have thinned greatly and now we know they’ve (L2 and L4) deteriorated further with Neuropathy and that he also has a tear at S1. Yep, my heart broke again. He’s a 4th year Sheriffs Volunteer. Many awards. Even from Senator Steinberg and the California Legislature.

All I could do what tell him/post to him –

“Kurtis, You never knew you were born with it,

Go on like you still don’t. ~Mama”

I was born with Arthritis, too. I went on through life as if it wasn’t apart of me. I’m not saying it didn’t hurt, but the more you dwell on pain, aches, what you can do, might do, or have to rest from the more you give up on life.

I didn’t. I still played 8 years of softball and made sure that when I began working it was on my feet. Moving. All Kurtis needs to do right now is protect his back and spine by moving it or losing it. There are no options for surgery at this time and he will not be placed on any pain medication. He is strong and he has goals for the future.

Kharisma, while going through all this has been promoted at work and is seeming doing well. It’s always ‘seemingly” isn’t it?. We are fighters! We just hide most of it that’s how we go on. Emotions.

And then there’s Erykah, our daughter who is getting ready for her and her other half to move into their first home next week. A beautiful home. How can I not feel bad for her, I know she’s pained too, getting lost in all the medical health chaos of her family. She was our Army girl.

The human body when it reaches a certain point in pain will pass out, shut down, the human psyche will either hold on, break, come back, attempt, or kill itself. It’s emotions that take control of the mind. It really hurts to hurt. None of the above includes my husband, or myself. Not really. Not any of his medical appointments, PT, etc. And me, I’ve put mine on hold, I had to, my 5 lights will always come first.

So here we are the ride isn’t over, there’s still another story I haven’t shared yet, not in its entirety. When I do, I want it to help others. It may be later down the line.

That injury I sustained was without a single pain pill. I’m not saying it didn’t hurt or it isn’t hurting, I’m just saying (for me) I didn’t have to go there. #StrongerThanPain I still haven’t and on the 15th it will be a month. Vitamin C, Ibuprofen, deep breathing, meditation, focal points and going to my happy place in my mind where there is no emotional pain. Where there are no mis diagnosis’, and delayed help. Those lesions were found on my daughters liver 16 months ago, but she was dismissed due to no insurance (assumed). Or maybe just because it didn’t seem important enough at the time. My happy place where we’re all camping at Rumsey in Yolo County. Our spot for several years.

Change the direction of your mindset and you change the direction of your pain. ~T

Expert Panel Concludes Neurostimulation Can Be Life-Changing Therapy for Chronic Pain

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Released: 12-Aug-2014 10:00 AM EDT Source Newsroom: Johns Hopkins Medicine

via Expert Panel Concludes Neurostimulation Can Be Life-Changing Therapy for Chronic Pain.

An additional article can be found by News Medical:

Published on August 13, 2014 at 5:28 AM

Researchers determine safety and effectiveness of neurostimulation to treat chronic pain

Teaching the Nervous System to Forget Chronic Pain — NOVA Next | PBS

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Teaching the Nervous System to Forget Chronic Pain — NOVA Next | PBS. By Eleanor Nelsen on Wed, 13 Aug 2014

Study reveals brain mechanism behind chronic pain’s sapping of motivation | News Center | Stanford Medicine

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Study reveals brain mechanism behind chronic pain’s sapping of motivation | News Center | Stanford Medicine.

“Moreover, the difference didn’t disappear even when the scientists relieved the mice’s pain with analgesics. “They were in demonstrably less pain, but they were still less willing to work,” Malenka said.”

——

In my own opinion I have often wondered if when chronic constant nagging moment by moment pain is finally relieved if somewhere, somehow a “Learned Behavior” evolves quickly.

I offer an example from a personal perspective only. There have been a couple of times out of the dozen + Lumbar Sympathetic Nerve (Pain) Blocks that I have had that my pain decreased to the point that I rested my body on the sofa, elevated my legs, turned off social media other than an update, watched movies and did little else other than take myself to the restroom as needed. The fire that inflamed my right flesh decreased, regardless if it had remained above, swelling decreased drastically from a huge calf to a notable atrophied one. Yet I lay there.

I am absolutely aware that I may receive contradicting comments. That is okay! I am curious! I am an avid information seeker. Valid information. This is only a thought! And I am using myself instead of others who I have witnessed mirror the same amount of time. A day to 3 post block and others who continued to lounge for weeks. Regardless of whether or not the block actually helped. I am not including down time due to complications as in all of mine I have not experienced side affects other than upper groin discomfort which subsided after a day. That discomfort did however alter the ability to stand for a few hours after the procedure.

Can Chronic Pain become a Learned Behavior? I tend to believe it can after habits are formed. Chronic pain can become a habit. It is constant after all.

Your thoughts are welcome! ~T

3 Girls with RSD/CRPS

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Megan 15, Tori 15, and Gracie 11.

Help These Girls Get the RSD/CRPS Treatment they need!

Megan Manuel (15)

http://www.gofundme.com/2f7l8g
Megan needs a Spinal Cord Stimulator

Tori Quinton (15)

http://www.gofundme.com/Help-Tori-get-better
Tori needs Calmare Therapy

Gracie (11)

http://www.gofundme.com/8wjinw
Gracie need to get to Dallas for CRPS Treatment

2 of the girls are 15 years old with RSD, one is only 11 with RSD.
Please consider helping them reach their fundraising goals or by sharing their pages so that they might have an extra opportunity for better exposure. The girls will be featured by the Power of Pain Foundation’s Patient Fundraiser Program August 2014.

As a CRPS/RSD patient myself, I would like to help their pages get noticed too, get the care they need, even if in this small way, so that they might have a better quality of life moving into their adult and teen years. They are each at a precious ages with school functions to look forward to, dances, activities to enjoy. Without pain relief this will not be as possible as most take for granted. As adults it is hard enough, most of us have gone through life lessons to teach us strategies for survival. Adults can barely manage. I believe young ones have it much harder. They need life experiences, good memories to build on.

Their adult world comes soon enough.

Each parent will choose their child’s options, they may even decide on something else along the way…

Any recognition for Megan, Tori and Gracie is much appreciated.

Thank you!

When You Think You’ve Had Enough Of This Life To Hang On..

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Hang On!

“Everybody Hurts”

When your day is long
And the night, the night is yours alone
When you’re sure you’ve had enough
Of this life, well hang on

Don’t let yourself go
‘Cause everybody cries
And everybody hurts sometimes

Sometimes everything is wrong
Now it’s time to sing along
When your day is night alone (Hold on, hold on)
If you feel like letting go (Hold on)
If you think you’ve had too much
Of this life, well hang on

Everybody hurts
Take comfort in your friends
Everybody hurts
Don’t throw your hand, oh no

Don’t throw your hand
If you feel like you’re alone
No, no, no, you are not alone

If you’re on your own in this life
The days and nights are long
When you think you’ve had too much of this life to hang on

Well, everybody hurts sometimes
Everybody cries
Everybody hurts sometimes
And everybody hurts sometimes

So hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody hurts

——

Hang on!

Sometimes everybody cries…

——

Never let go.. , you want to let go, you don’t have to, you really can hold on,

Don’t let go, live, you have to want to live, we don’t want to die, on the contrary..

We want to live..

Hold on…

Hold on!

Nobody Said It Was Easy..

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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 exist 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!

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)

Toxic Neuropathy Patient- Kimberly Neff

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Kimberly Neff has Toxic Neuropathy that was caused by a work “accident”. Her story goes as this ““ Two years ago she was working as a security guard in a gate house for a residential community. When a worker from their monthly pest control company came out to spray for ants, she showed him some video footage where ants were coming from the air ducts. So, he decided to push the attic door open and just fill the attic with pesticide fog. He told her to leave both doors open, and that she should be fine: Now Kim is in a wheelchair, she can’t walk on her own, she’s lost most feeling in her legs, she sometimes loses control of her bladder and bowel functions, she has neurological problems and people treat her differently. Kim is currently on 18 different prescription medications/lotions/patches and she is still waiting on Disability for assistance.

The above has been altered from Kimberly’s own words.

To read Kim’s entire story and consider offering assistance, please see her page at: Please help me, Toxic Neuropathy Patient

(This is independent of the POPF’s Patient Fundraiser for Youth)

Kim is 25 and her story touched me.

Power of Pain Patient Fundraiser Program for Youth

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Power of Pain Foundation is excited to announce our fundraisers program. Each month POPF will donate $200 that will be spread evenly to 4 fundraisers. Each fundraiser selected will receive a $50 dollar donation and will be hosted on the home page www.powerofpain.org With a focus on youth, each fundraiser selected must be under the age of 21.

We understand the difficulties of raising funds. We want to spread awareness about your fundraiser. We want your story to be heard and have the chance to say thank you to those that do donate. Read someones story, make a donation and feel good about yourself at the same time. No donation is too small. A whole lot of little adds up to a gob!

If you would like to donate to this program and raise the amount that gets spread evenly please click here.

Fundraisers Program

All donations are tax deductible. See your donations directly help others. When you donate to this program your donation will add to the amount that gets spread evenly amongst our fundraisers for the month. It’s a fun and exciting way to see your donation help others. When you choose to donate to this program, your name will be listed as a program sponsor. Have fun helping others and feel good about yourself at the same time.

Please make your donations to this program dividable by 4.

If you know of a youth from infant to 20 years of age, please contact:

Power of Pain’s National Youth Ambassador

Kurtis VanFleet Kurtis.CA@powerofpain.org

or Twinkle.CA@powerofpain.org

We thank you!