Chronic Pain

Fight for Tomorrow

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RSDAdvisoryFightorFlightjAlways have faith that a better tomorrow will come. We have to or we won’t survive. The life of chronic pain becomes a family disease. In the last few months we have lost over a dozen people in the CRPS/RSD community. At least half to suicide. Most people do not premeditate their suicide. Many do experience suicidal ideations. It has been noted by professionals that “wanting to die or commit suicide” and suicidal ideations are not the same”. If they were more of us would be evaluated and helped before we get to the point of knowing our pain is never going to managed and into the sudden taking of our own lives. When it happens it is often spontaneous. There will have been signals and signs misread. There is always a cause and there will always be an affect. So many are not afforded proper medical care to reduce pain levels. Opioid medications, such as Hydrocodone,  continue to be well versed as a gate way drug to harder and heavier medications such as Oxycodone. It has been said a like a broken record over the past decades that Marijuana and narcotic use causes a person to become high risk for Heroin use. I do not believe this to be true. I do believe it’s possible in some personalities. Addictive personalities perhaps, but this does not include our entire population. I am offended for honest chronic pain patients that need pain care who have been dismissed as drug seekers. I am offended by good providers whose practices have been raided for prescribing Opioid medications.

It’s not the Opioid itself that is the epidemic in our society, it is the person who does not take it exactly as prescribed which can lead to abuse and misuse. Re evaluate the patient for possible addiction or consider another pain management plan of action. Either way they need help!

If pain patients aren’t taken care of and the pain cannot be controlled..

The number of deaths continue to rise. The epidemic will be chronic pain related suicides.

Your autopsy report will probably read..  as a result of depression, misus, abuse or other. There will be nothing about really happened. There will be nothing about the fact you couldn’t get pain relief and your last, very last resort was taking your own life.

DEA.. You don’t know pain until you’ve contemplated.

Speak up and speak out!

Let there always be a tomorrow. Fight for your tomorrow!

Discovery Channel: Pain Matters

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Discovery Channel: Pain Matters.

 

An important look into chronic pain by the Discovery Channel. I hope you find this as educational and as enlightening as I did. ~Twinkle V.

My Journey With Chronic Pain By Sara Gilbert Nadler-Goldstein

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My Journey With Chronic Pain
By Sara Gilbert Nadler-Goldstein

When one lives their life on a daily basis, no one would ever imagine in the course of a second that it would change forever. I never thought that I would be victim of those very words. On May 24, 2003 I was in a car accident on a parkway and rear ended by two separate cars with two separate impacts. That day changed my life forever. I had been a medical social worker for well over fifteen years spanning the scope of practice from the acute care hospital setting to acute rehabilitation, and then a skilled nursing facility. I practiced in the role of case manager discharge planner. I knew how to navigate the medical system for others.However,you never think that you are going to be the patient. What followed was a year filled with many doctors visits involving many medical specialties including neurology, orthopedics, as well as pain management. I did receive two epidural injections and that did not provide the necessary relief that I needed.
In March of 2004 I saw my neurologist and after an M.R.I. was completed and films were reviewed he stated to me that my back was seriously injured and that I should go to New York Presbyterian Hospital-Columbia University Medical Center for a neurosurgical evaluation. At that point in time what followed was that I was given the name of world renowned neurosurgeon Dr. Paul C. Mccormick Director of The Spine Center at Columbia Presbyterian (Neurological Institute). Little did I know that this was the beginning of my good fortune. On March 30, 2004 my mother accompanied me to the Neurological Institute (Spine Center) where I had undergone this consultation. The Surgeon had told me that I had a herniated disc and that it was affecting various nerves in my spine. He reviewed my medical records, and films.
In addition he even showed us a model of the spine and explained the intended surgical procedure he was to perform. I than arranged to have my spinal surgery at Columbia Presbyterian on April 12,2004. After the surgery I was monitored by my neurosurgeon to evaluate my healing from the surgery,as well as my emotional well being. It was recommended by Dr. Mccormick that I see a pain management physician several months after surgery. He was suggesting this level of care for me as well as educating me on the role of a pain management physician. Dr. Mccormick was most detailed in explaining to me the definition of chronic pain. At that point I was not ready to accept that and I really thought that I could heal myself by means of medication, Physical Therapy, and my neurosurgeon stated that he would give me time to come to terms with the information of my diagnosis of chronic pain. During that time period I tried I tried medications as well as physical therapy. However,there was no improvement in terms of my pain. I was most desperate at this point to accept that I needed help. In May of 2005 I contacted my neurosurgeons office and was provided with the name of a highly regarded pain management physician that he wanted me to see at Columbia Presbyterian.Dr. Michael L. Weinberger Director,pain management center, Chief Division of pain and palliative medicine. Dr. Mccormick was going to communicate the necessary medical reports prior to my appointment. At that time little did I know this was the beginning of my good fortune. In June of 2005,when I presented myself to Dr. Weinberger at the pain center. I told him that I was in desperate need of help and that he was my last hope. I communicated to him that I wanted to live a full and normal life with no pain medications. After a through examination was completed and medical records were reviewed as well as films. Dr. Weinberger immediately presented me with a plan of care. He suggested that I consider a spinal cord stimulator as a modality for dealing with my chronic pain. That day he sent me home with a tape about spinal cord stimulation as well as reading material to educate me on this possible treatment option. However, he didn’t initially put me on a regime of medications to determine if it would help me. On my follow up visit several weeks later, I reported to him that these medications were sedating as well as leaving me with no desire to eat,and so dizzy that I could not drive my car and that was not an option for me. At that point the decision was made to go ahead and start the process for a spinal cord stimulator which is an implanted battery pack with leads and electrodes that target the areas of pain with electrical pulses and a vibrating,tingling sensation that reverses the brains signal from perceiving pain to a pleasurable tingling sensation. The process was completed over the period of several months staring with the psychological evaluation to proceeding with the trial. My trial was in October of 2005 with Dr. Weinberger he did an excellent job in mapping out my areas of pain prior to the trial. After the surgery for the trial. I remember being in the recovery area after surgery,and I was crying Dr. Weinberger expressed much concern and I said to him that I am crying for happiness and that for the first time in a year I had no pain. At that time I was instructed to test the device at home for a week (the leads were not permanently implanted,and I had a hand-held device similar to that of a remote control) I was instructed to keep a journal for a week to monitor my pain patterns. A week later I returned to see Dr. Weinberger and his team of fellows and residents at that time,and I reported to them that I had greater than seventy-five percent pain relief and if you can duplicate this for the permanent implantation than I would like to proceed with this method of treatment. I was most determined as Dr. Weinberger knew to live a full an independent life,and to be able to drive to Long Island where my mother resides. In December 2005 I had my permanent implantation of my spinal cord stimulator with Dr. Weinberger.I am most grateful to acknowledge that my goals were achieved not to be on any pain medications,and to engage in all activities for over seven years. This past December the day before the initial implantation, I went into Columbia Presbyterian to have surgery with Dr. Weinberger to replace my spinal cord stimulator battery as it had reached its end of life. I am fortunate enough to say that I have my new spinal cord stimulator battery, along with doing my daily spinal exercises to maintain the health and strength of my back,and attending the gym several times a week pain free. Dr. Weinberger has given me the most important gift and that is to live a full an independent life. It is also extremely important that the patient have an open and honest relationship with their pain management physician as well as the physician working with other physicians on the patients behalf (see Neurology Now Publication on line February 2013 Speak Up blog Collaboration of care at its finest). I was most privileged to have that level of care and continue to have that level of care nine years later. Dr. Weinberger is caring,compassionate,and understanding of the complexity of my medical conditions. He is an excellent listener and understands what my goals are and continues to understand my future goals. His clinical excellence has made these goals a reality for me. In addition Dr. Weinberger understands me as a whole person. That is significant in your treatment because medical health Chronic Pain affects your mental health as well as your outlook for the future,and how you will live your life. This may was the ten-year anniversary since the accident and in June I turned fifty. I could not have reached these major milestones in my life without the caring,compassion,and support that Dr.Mccormick, Dr.Weinberger, Dr.Blanco have demonstrated over the years,and continue to do so. Every day when I use my spinal cord stimulator I reflect to how grateful I am for the special gift that Dr. Weinberger has given to me. This past June I have been under Dr. Weinbergers care for eight years and when ever I thank him which is either at an office visit or a note, or telephone conversation his response is you did all the work I always say to him that I could not have done the work without a good foundation being built, and most certainly he did. The last ten years have not been easy for me there were surgeries, and they are well behind me, and learning and accepting to live a new normal. As a patient you must stay resilient, positive, and strong, and want to be well.

©2013 Sara Gilbert Nadler-Goldstein. All rights reserved!

Sometimes it Takes a Village–to Treat a Patient

CRPS/RSD and Chronic Pain: Should We Stop Living Because It Hurts?

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We should not stop living because it hurts! I’ve heard so many times if so and so has Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy or Chronic Pain in general if they go out for the evening, wear a certain type of clothing, shoes, accessories, move their bodies they can’t possibly hurt that bad. Wrong! It means they are not letting the pain and disability rule their lives. They want to live, laugh, enjoy a moment, make new memories, perhaps experience some of the old.

Too often we become trapped in the cycle of isolating ourselves. Maybe even feeling sorry for ourselves. It’s okay to feel that way from time to time it’s not okay to let the illness take over our lives and that which we love. Family, children, goals, dreams and wishes for ourselves.

If you see someone doing something you wouldn’t do or your body isn’t capable of doing please don’t judge them. Maybe all it means is that they are pushing past the pain for a few minutes, a few hours, or a few days. Granted there are people in the world that like to be sick, they crave attention and pity, but not all Chronic Pain Survivors have this mentality. It is not fair to group them into one category. One size does not fit all and it never will.

Some of us use medication to try to survive, other’s have gone off of all medication and use alternative strategies for coping and managing pain, other’s use a combination of both as I do. Just because someone can survive without medication doesn’t mean they feel better than you do it only means they have learned to manage their pain a different way.

If you love to dance as I did, dance! I do! I may last 20 seconds, I might make it through a half of a song, I already know my body is going to pay for it, so why should I hold back because I might end up down for a week after? I shouldn’t and you shouldn’t either! If you love to garden, do it! Pace your activities so you can enjoy your time. If after a half hour you can’t do anymore, don’t. There is a fine line between doing too little and doing too much! Learn you and what you are able to achieve. It doesn’t matter that the next person only lasted 5 minutes or another person lasted an hour. You are you!

Make daily goals. Lists can be helpful. I often have 5 things on my list, my goal is to be able to mark off 3 of them. If I can mark off all 5 it’s just a plus for me and if I only make it to 2 I’ve learned to let myself know it’s okay. Don’t put yourself down for not completing a task just move the one you missed to the top of the list and start again.

I tell myself “I will” instead of “I’ll try” it’s just something I’ve found quite useful after completing my Functional Restoration Program back in 2009. The word “Try” sets me up for possible failure from the moment I say it to myself. “I will” motivates me! There is no pass or fail here. We can or we can’t. We will or we won’t. We are not only individuals but individuals in our own pain,  depression and mindset also.

Many of us deal with depression and/or anxiety secondary to our chronic pain. Close your eyes, relax and go to your happy place. Using imagery can be helpful. Don’t forget to laugh and laugh with others. Laughter produces endorphin’s and endorphin’s decrease physical pain.

Physical pain and depression can be a vicious cycle in itself. Depression causes pain to increase and the pain causes the depression to worsen. Living, smiling, loving, practicing appreciation and gratitude goes a long way in helping us overcome and survive the diagnosis’ we’ve been handed.

While there are times I suffer, I know we all do, I do not consider myself a sufferer, but instead a survivor. I am surviving this! I am alive! It’s been said that pain is that one reminder that we truly exist and for me I believe it. I am reminded every moment of the day that I am living, I am alive.

Be good to yourselves!

Don’t stop living because it hurts, survive the pain and go on.

~Twinkle VanFleet

Power of Pain Gets Ready for September: Pain Awareness Month

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POPFNationalPainAwarenessMonthPain Awareness Month is right around the corner.  September is always a busy time for most of us.  These are just a few of the Power of Pain Foundation’s events and activities during that time. Please feel welcome to join in on the events you are able to. We have other’s we are involved with from State to State. We look forward to all that you are doing for the mutual cause we share as well as the hope and fight for a cure we all work so hard for when raising awareness. If you have an event you would like me to share, please feel free to contact me.

I wish you pain eased days and nights, ~Twinkle V.

September is Pain Awareness Month!

PAINWeek 2013

WHEN:
September 4, 2013 – September 7, 2013

WHERE:
Cosmopolitan of Las Vegas
Las Vegas
NV
USA

CONTACT:
PAINWeek 973-415-5100
info@painweek.org
Event website: www.painweek.org

EDUCATION
Lyme MS Neuropathy Pain RSD
Audience: physicians, physician assistants, nurse practitioners, nurses, pharmacists, psychologists, hospitalists, dentists, social workers, and podiatrists

The PAINWeek 2014 Schedule at a Glance is now available! Debuting this year will be two new course formats to broaden the educational experience for our attendees:

Frontline Practitioner Focus will delve into the practice challenges that are particular to provider types and practice settings, including hospitalists, nurses, pharmacists and physician assistants
Clinical Conundrums will present case-based examinations of assessment and diagnosis, and criteria for specialist referral in the pursuit of better treatment outcomes

info@painweek.org

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Chronic Pain Solutions Webinar Series
Online
CONTACT:
Power of Pain Foundation

480-882-1342

Please register for Chronic Pain Solutions on Jul 24, 2013 5:00 PM PDT at:

https://attendee.gotowebinar.com/register/7262827706450704128

Dr. Daniel Twogood, D.C., has been practicing chiropractic medicine in Southern California for 30 years. The doctor will describe 10 steps necessary to lower or eliminate chronic pain. This program does not work for everyone, but is noninvasive and we hope that attendees take away a few good pointers from it. This webinar not a cure, it is a tool to help people manage their chronic pain.

Dr. Twogood will discuss that chronic pain is caused by ongoing inflammation which is caused by specific substances in the diet, food additives & medication. He was also on the blogtalk show Living with Hope, sponsored by the Power of Pain Foundation in May 2013.

Over 100 million Americans suffer with some form of chronic pain such as back pain, fibromyalgia, migraines and arthritis.  His book is easy to read and lists the ten steps necessary to eliminate chronic conditions fibromyalgia, headaches, psoriasis, Crohn’s disease and more, based on this doctors findings over all the years he has been practicing medicine.

Where conventional medicine isn’t always effective, Dr. Daniel reports that relief is available by following these 10 steps outlined in his book. Most patients he works with recover well before 90 days.

After registering, you will receive a confirmation email containing information about joining the webinar.

The Power of Pain does not endorse the presenter or their products. This is being offered as a tool that people in pain and their caregivers can listen to, ask questions, and start a discussion.

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POPF’s P.A.I.N. Summit 2013

WHEN:
September 14, 2013 @ 8:00 am – 4:00 pm

WHERE:
Scottsdale Healthcare Shea Conference Center
9003 East Shea Boulevard
Scottsdale,AZ 85260
USA
COST:
Free

ONLINE and in PERSON

CONTACT:
Power of Pain Foundation info@powerofpain.org

The 7th Annual P.A.I.N. Summit hosted by the Power of Pain Foundation provides a great avenue for pain education for providers, patients and their caregivers. This year’s conference consists of an exhibit area and educational sessions that focus on better diagnosis and treatment options for pain patients, chronic pain issues (as a whole), prescription monitoring programs, and Proper Opioid Management. There will be breakfast, lunch and afternoon snack provided to attendees.

The event will be hosted by Brittany Brannon, Miss Arizona USA 2011, model, and RSD patient. The event will also feature two celebrity speakers, Dr. Natalie Stand, MD winner of the Amazing Race, and WWE star and professional wrestler, Raven.

The day will consist of two sessions.
8am – 1:00pm The morning sessions are focused for healthcare providers. This includes all areas of expertise; anesthesiologists, complementary medicine specialists, emergency room, general practitioners, internal medicine, neurologists, nurses, orthopedics, pharmacists, physiatrists, physician assistants, primary care physicians, psychiatrists, surgeons, and therapists. Any clinician who practices, or is interested in practicing, pain management from an integrative perspective, will benefit from the meeting. HCP’s will be introduced to the rapidly expanding field of diagnosis and treatment. This conference will proved attendees a greater awareness and understanding of the need to appropriately identify, diagnose (HCPs only) and treat/seek treatment of common types of pain, including fibromyalgia, painful diabetic peripheral neuropathy and other chronic pain conditions.
1:30pm – 4:30pm The afternoon sessions will be filled with patients and their family/ caregivers. This portion of the conference will provide attendees a greater awareness and understanding of the need to appropriately identify, and treat/seek treatment of common types of pain.

There is no charge to attend this conference.
Schedule (tentative)
HCP Sessions
8:00 am – 4:00 pm Ongoing Registration Breakfast served Hosted by Brittany Brannon
8:15 am – 9:00 am Keynote address: Preventing complications that arise from diabetes such as peripheral neuropathy (pain)
Dr. Natalie Stand, MD, Amazing Race Winner, USC Pain Clinic
9:10 am – 9:55 am An Integrative Approach to Chronic Pain Dr. Philip Getson, DO, Drexel University, Philadelphia, PA
9:55 am – 10:40 am Cultural Competency and the Patient in Pain Dr. Maged Hamza, Virginia Commonwealth University
Pain Clinic Director, Richmond, VA
10:40 am – 11:20 Evidence Based Chronic Pain Care Linda Watkins, PhD, University of Colorado
11:20 am – 12:00 Complementary Medicine and its role in Chronic Pain Management (TBD)
12:00 pm – 1:00 Open Discussion with the Speakers and Attendees Lunch is served, Exhibitors

Patient/ Caregiver Sessions
1:30 pm – 2:30pm An Integrative Approach to Chronic Pain Dr. Philip Getson, DO, Drexel University, NJ
2:30 pm – 3:15 pm Prescription Drug Monitor program Explained Rob Kronenberg, PharmD
3:15 pm – 4:00pm The Patients Perspective; At Home Pain Coping Skills Raven WWE Wrestler, Barby Ingle Power of Pain
Foundation, and Diane Kennelly AZ Fibromyalgia Group Leader

If you are unable to attend in person, you can attend by watching our UStream Channel
http://www.ustream.tv/channel/power-of-pain-foundation

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AANEM 60th Annual Meeting
WHEN:
September 17, 2013 – September 20, 2013

WHERE:
Montreal
QC
Canada

Event Website- http://www.aanem.org/Home.aspx

American Association of Neuromuscular & Electrodiagnostic Medicine

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American Academy of Pain Management

WHEN:
September 26, 2013 – September 29, 2013

WHERE:
JW Marriott Orlando
4040 Central Florida Parkway
Orlando,FL 32837
USA
CONTACT:
209-533-9744

Event Website-

http://www.aapainmanage.org/conference/annual-clinical-meeting/register.html

The American Academy of Pain Management’s 24th Annual Clinical Meeting

Come for the education, the experience, and the pure enjoyment!

Join us at the Academy’s 2013 Annual Meeting, Exploring the Science, Practicing the Art and expand your knowledge and understanding about pain management, meet some of the most forward-thinking experts in the field, gain practical hands-on experiences, and have a great time!

Who Should Attend – Any clinician who practices, or is interested in practicing, pain management from an integrative perspective, will benefit from the meeting.

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Institute on Psychiatric Services

WHEN:
October 10, 2013 – October 13, 2013

WHERE:
Philadelphia
PA
USA

Event Website- http://www.psych.org/

—————-

ASA Annual Meeting

WHEN:
October 12, 2013 – October 16, 2013

WHERE:
San Francisco
CA
USA

American Society of Anesthesiologists

847-825-5586

Event Website- http://www.asahq.org/

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NERVEmber

2013 Scottsdale Headache Symposium

WHEN:
November 13, 2013 – November 17, 2013

WHERE:
Scottsdale
AZ
USA

CONTACT:
American Headache Society
Event Website- http://www.achenet.org

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Comic Pain Relief

WHEN:
November 8, 2013

WHERE:
Chandler Center for the Arts
250 North Arizona Avenue
Chandler,AZ 85225
USA

CONTACT:
Power of Pain Foundation 480-882-1342
info@powerofpain.org

Event Website: http://powerofpain.org/
Comic Pain Relief 2013 presented by the Power of Pain Foundation for NERVEmber. More Info to come!

Comic Pain Relief is a charity show to help raise awareness of chronic pain issues through a great social event using comedy. The event is open the public.

The Comic Pain Relief show will take place to help raise proceeds and support for low income and under-insured patients who are affected by chronic pain conditions such as Post Cancer Neuropathy, MS, Lyme Disease, Diabetic Neuropathy and Reflex Sympathetic Dystrophy.

Neuropathy pain conditions affect people of all ages, and races. There are over 100 million Americans with Chronic Pain.

KenTaylorExecutiveDirectorPowerofPainKen Taylor
Ken is the Executive Director of the Power of Pain Foundation, and an expert on several neuropathy conditions.  Ken@powerofpain.org

 

 

Through Our Motivation For a Cure, We Turn Pain Into Power!  ©powerofpain

Chronic Pain Solutions webinar presented by Power of Pain Foundation

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ChronicPainSolutionsWebinar

Chronic Pain Solutions presented by Power of Pain Foundation
Join us for a webinar on Sept. 10, 2013 at 5:00 PM PDT.

Register now!
https://attendee.gotowebinar.com/register/1513684815034504960

Dr. Daniel Twogood, D.C., has been practicing chiropractic medicine in Southern California for 30 years. The doctor will describe 10 steps necessary to lower or eliminate chronic pain. This program does not work for everyone, but is noninvasive and we hope that attendees take away a few good pointers from it. This webinar not a cure, it is a tool to help people manage their chronic pain.

Dr. Twogood will discuss that chronic pain is caused by ongoing inflammation which is caused by specific substances in the diet, food additives & medication. He was also on the backtalk show Living with Hope, sponsored by the Power of Pain Foundation in May 2013.

Over 100 million Americans suffer with some form of chronic pain such as back pain, fibromyalgia, migraines and arthritis. His book is easy to read and lists the ten steps necessary to eliminate chronic conditions fibromyalgia, headaches, psoriasis, Crohn’s disease and more, based on this doctors findings over all the years he has been practicing medicine.

Where conventional medicine isn’t always effective, Dr. Daniel reports that relief is available by following these 10 steps outlined in his book. Most patients he works with recover well before 90 days.

After registering, you will receive a confirmation email containing information about joining the webinar.

The Power of Pain does not endorse the presenter or their products. This is being offered as a tool that people in pain and their caregivers can listen to, ask questions, and start a discussion.

After registering, you will receive a confirmation email containing information about joining the webinar.

 

Chronic Pain Solutions Facebook Page- https://www.facebook.com/events/554858711238301/?ref=2

P.A.I.N.S. National Pain Management Conference hosted by Power of Pain Foundation

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P.A.I.N.Summit

  • Saturday, September 14, 2013

  • 9:00am
  		•

    Scottsdale Healthcare Shea

  • The 7th Annual P.A.I.N. Summit hosted by the Power of Pain Foundation provides a great avenue for pain education for providers, patients and their caregivers. This year’s conference consists of an exhibit area and educational sessions that focus on better diagnosis and treatment options for pain patients, chronic pain issues (as a whole), prescription monitoring programs, and Proper Opioid Management. There will be breakfast, lunch and afternoon snack provided to attendees.

     

    RSVP Required: http://painsummit2013.eventbrite.com/, Limited in-person space.

     

    The event will be hosted by Brittany Brannon, Miss Arizona USA 2011, model, and RSD patient. The event will also feature two celebrity speakers, Dr. Natalie Stand, MD winner of the

    Amazing Race, and WWE star and professional wrestler, Raven.

     

    The day will consist of two sessions.

     

    8am – 1:00pm The morning sessions are focused for healthcare providers. This includes all areas of expertise; anesthesiologists, complementary medicine specialists, emergency room, general practitioners, internal medicine, neurologists, nurses, orthopedics, pharmacists, physiatrists, physician assistants, primary care physicians, psychiatrists, surgeons, and therapists. Any clinician who practices, or is interested in practicing, pain management from an integrative perspective, will benefit from the meeting. HCP’s will be introduced to the rapidly expanding field of diagnosis and treatment. This conference will proved attendees a greater awareness and understanding of the need to appropriately identify, diagnose (HCPs only) and treat/seek treatment of common types of pain, including fibromyalgia, painful diabetic peripheral neuropathy and other chronic pain conditions.

     

    1:30pm – 4:30pm The afternoon sessions will be filled with patients and their family/ caregivers. This portion of the conference will provide attendees a greater awareness and understanding of the need to appropriately identify, and treat/seek treatment of common types of pain.

     

    There is no charge to attend this conference.

     

    Schedule (tentative)

    HCP Sessions

    8:00 am – 4:00 pm Ongoing Registration Breakfast served Hosted by Brittany Brannon

     

    8:15 am – 9:00 am Keynote address: Preventing complications that arise from diabetes such as peripheral neuropathy (pain) Dr. Natalie Stand, MD, Amazing Race Winner, USC Pain Clinic

     

    9:10 am – 9:55 am An Integrative Approach to Chronic Pain Dr. Philip Getson, DO, Drexel University, Philadelphia, PA

     

    9:55 am – 10:40 am Cultural Competency and the Patient in Pain Dr. Maged Hamza, Virginia Commonwealth University Pain Clinic Director, Richmond, VA

     

    10:40 am – 11:20 Evidence Based Chronic Pain Care Linda Watkins, PhD, University of Colorado

     

    11:20 am – 12:00 Complementary Medicine and its role in Chronic Pain Management (TBD)

     

    12:00 pm – 1:00 Open Discussion with the Speakers and Attendees Lunch is served, Exhibitors

     

    Patient/ Caregiver Sessions

    1:30 pm – 2:30pm An Integrative Approach to Chronic Pain Dr. Philip Getson, DO, Drexel University, NJ

     

    2:30 pm – 3:15 pm Prescription Drug Monitor program Explained Rob Kronenberg, PharmD

     

    3:15 pm – 4:00pm The Patients Perspective; At Home Pain Coping Skills Raven WWE Wrestler, Barby Ingle Power of Pain Foundation, and Diane Kennelly AZ Fibromyalgia Group Leader, Dr. Tory McJunkin, Arizona Pain Specialists

     

    If you are unable to attend in person, you can attend by watching our UStream Channel http://www.ustream.tv/channel/power-of-pain-foundation

A New Beginning: My Life with RSD

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A New Beginning: My Life with RSD.

The above blog belongs to featured Blog Talk Radio Host Trudy Thomas.

The Living with HOPE Radio Show is Sponsored by the Power of Pain Foundation.

 

Living with HOPE began in 2007 under the original title Living with RSD. It was Trudy’s hope to learn more information about her own health issue, the debilitating and painful illness RSD/Reflex Sympathetic Dystrophy and with that a show was born. Trudy interviews doctors, therapists, caregivers, and patients; both traditional and alternative practitioners with expertise that runs from prevention to cutting edge technology.

Trudy empowers, informs and educates her listeners with information that may not be readily available in their local area. Through the power of the internet she has the ability to communicate with and speak to some of the most knowledgeable doctors and researchers in the world.

Some Topics have included: Meditation, Biofeedback, Guided imagery, Relaxation techniques, Breathing exercises, Holistic healing, Coping strategies, Distraction, Depression, Spinal Cord Stimulation (SCS), Pain Management, Medications, Chronic Pain Treatments, Ketamine, Calmare (Scrambler Therapy), Cortical Integrative Therapy (CIT®), Mirror  therapy (Mirror Box), DMSO, Low Light Laser Treatment Therapy (LLLT), Functional Restoration, IVIG, Neuropathies, RSD/CRPS, Neuro Inflammatory Disease (NID) and much more.

For more information on how you can listen or even call in please click HERE.

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Listeners are encouraged to call in to ask questions of the guests during the show 1-347-884-9691, and if you miss the show you can listen later by clicking on the play button or downloading the shows archive. If you are on the go, you can call into the show through your home phone or cell phone at the above number and listen live. To speak with the host or ask the guest a question press 1, you can still listen to the show while waiting to go on the air, don’t hang up! Your questions and comments are important! A chat room is also available during the live show.

Living With Hope is broadcast live on Monday’s 4:00 p.m pacific and Friday’s 9:oo a.m pacific.

You can post your questions in the chat room to be answered on air. If the time is not convenient to stop by the live shows, you can listen to the archives at any time on the radio page.

Savy Seniors, Trudy’s newest show is live on Wednesdays 3:00 p.m PST. with co-host, Sharon Rowell covering all the latest news about health, medicine, safety, care taking and programs that are available to help seniors live a fun, productive and long life.

And, for fun of course Trudy does a Saturday show, 3:00 p.m PST,  with readings from spirit given by Seers of the Soul and lots of fun music from the 50′s-80′s. Oldies but goodies.

If you are interested in being a guest on any of these shows, please email Trudy at goldfield_nv@hotmail.com.

 

 

Gall Bladder Fiasco Continued and hopefully the Final Chapter!

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The first part of this story can be found here https://rsdadvisory.com/2013/05/18/endoscopic-retrograde-cholangiopancreatography-52113-due-to-gall-bladder-removal-fiasco/ shared May 18th. I had my ERCP that showed I had Gall Stones hanging out over by the piece of Gall Bladder that was adhered to my liver since March of 2012 when I originally had it removed. The test also showed the lining of my stomach and surrounding areas were severely inflamed. I was given another diagnosis of Gastritis. So of course I waited to see the surgeon again and get my surgery date scheduled. It was scheduled for July 10th, 2013. 1 week ago today!

The surgeon told me that he would try to remove it first like the last time. I would have 4 small incisions. If he couldn’t get it he would have to do a larger cut. I was scheduled for a Laparoscopic Completion, Cholecystectomy, Possible Open, Possible Cholangiagrams. I signed the forms! I had to arrive at Mercy General Hospital at 5:30 a.m that morning for 7:30 a.m surgery. The surgeon told my husband to give him 4 hours, but that he could be done in an hour and a half, but not to worry until the 4th hour. I headed into the OR.

Now I have to laugh about this because I felt my hand zing and then zing again. They were putting me to sleep! But I didn’t go to sleep. So the Anesthesiologist ask me what I did for a living and I went on to babble about RSD/CRPS awareness, educating, working for the Power of Pain, I just chatted them right up and I know they were waiting for me to go down, even gave me more a few seconds or so before, I felt it. I remember looking off and thinking I’m going to go to sleep now and started to say it, but then I woke up in recovery with worse pain than the first time.

TwinkleVMercyGeneralJuly102013

I still have swelling, a lump above my top incision that hasn’t gone down yet. When my doc called me the day after my surgery to check up on me, I told him about it, he said it was because that’s where he beat me up the worse. Funny! I laughed! That is where he had to use the tools and manipulate inside me to peel that piece off my liver, he said it should go down in a few days. I hasn’t yet though. I tried to drop the pain medication yesterday and switch to OTC NSAIDS but when I woke this morning I was hurting so bad from the top incision/lump to the side ones. A feeling of being inner bruised. Understandable really. So I’ve switching back and forth from Norco 10/325 to 4 OTC Ibuprofen. The Ibuprofen will help the inflammatory more than Norco will. Tylenol doesn’t touch that type of pain for me.

I was also mentioned to me that I have Crohn’s Disease. It’s a lot to process. My Gastrointestinal problems have become so bad that it seems the likelihood of internal CRPS is more my situation. I’m not going to mention all the symptoms right now, I’ve mentioned some of them in my group, on my facebook timeline, I just really need to find a doctor, a GI or Internal Medicine that is educated in RSD/CRPS, not one who has only heard of it. That was my experience with this surgery, a few heard of it, no one “knew” about it. My own primary doesn’t know “about” it. I had to educated him with just pieces as there is never enough time for it all.

I’m lucky to keep food down, even things to drink, I have to pick and choose carefully, the doc did also send me home with the generic for Prilosec to take a half hour before I eat anything first time each day. I either have diarrhea or can’t potty at all for weeks.

It seems the surgery has eased the pain over under my ribs on the right, but so far the mid back pain and other pain is still here. I had my SCS checked 2 days before my surgery by my Medtronic Specialist. It’s fine!

When the surgeon removed that piece of Gall Bladder it was full of fluid and was growing new tissue. He was able to remove several stones from that same area. The pathology is already back and it was negative for any cancerous cells.

On Monday when I had a follow up to my OBGYN due to inflammation found on my Uterus and the cyst(s) found on my right ovary which is larger than my left side and includes scar tissue as does my lower belly from left side to the entire right from an ectopic and exploratory surgery many moons ago.  I opted for what I believe is called Nexplanon. I could have also tried the Depo or an IUD. Never again to an IUD for that is how I conceived my Ectopic twins. And I’ve tried Depo Provera  and didn’t believe since these were my only options it was right for me. Normally the implant with is a small flexible tube is used as a form of birth control which can last up to 3 years and it stops the menstrual cycle. Yay! It was implanted beneath my inner left arm. The reason I opted for this was that my other option was a full Hysterectomy. This option buys me some time. I am not ready for more surgery yet. If at all. First of all it’s not safe for those of us with RSD/CRPS and secondly repetitive surgeries just aren’t safe for any of us. We always have to decide in the end what is best for us by weighing the pros and cons to it all.

If your doctors aren’t aware of your RSD/CRPS, please educate them. I do in pieces and portions but we only have so much time in each appointment. If need be take information and have it put in your file. In fact, that is exactly what I’m doing for my 24th follow-up with my surgeon and when I see the other’s next, same for them. My surgeon seems really great and caring. To call my husband at home to check on me and then asked to speak with me for a few moments even though I was resting, I respect that. You don’t get that much now a days. I think he will be appreciative, not upset or offended. Not the people should be, yet sometimes they are, especially when the info comes from no medical degree persons like myself. Some become quite offensive, also. They assume we think we’re know it all’s! Farthest from the truth! So I’ll hand off the info which will include more than 1 source and see which one actually has a broader perspective the next time I see him.

While I’m sure it’s happened before, no one from my surgical team had heard of it and no one from my doctor’s offices had heard of it…

Nor from my own communities online and off, family or friends.

I actually gave birth to a Gall Bladder twice! Just different sizes!

So glad it’s over and I’m on the path to healing again.

One down!

~Twinkle VanFleet

CRPS Survivor

Cortical Integrative Therapy with Dr. Victor M. Pedro on Living with HOPE Radio Show with Featured Host Trudy Thomas

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Living with HOPE Radio Show with Host Trudy Thomas LogoThe following information has been taken from notes as a listener to the show and research, nearly all the words themselves belong to Dr. Victor M. Pedro. I take no credit for these. My goal is to get this non invasive seemingly promising information out so that other’s may find it a hopeful treatment program in their journey with CRPS/RSD, Chronic Pain, TBI’s and other illnesses and conditions.

Yesterday on the Living with Hope Radio show with Featured Host Trudy Thomas and Co Host Barby Ingle . Dr. Victor M. Pedro discussed Cortical Integrative Therapy (CIT®) a technique he uses and developed.

The entire show can be listened to here: http://www.blogtalkradio.com/thebodymindandspiritnetwork/2013/05/29/living-with-hope-with-host-trudy-thomas  The Living with HOPE Show is Sponsored by the Power of Pain Foundation.

Dr. Victor M. Pedro’s career began as a Chiropractor and continued on with a Post Graduate in Functional Neurology. He says ” it was a very good starting point for brain function and innovative treatments that could begin to make a difference in peoples lives. He was fortunate enough to receive grant funding from the Rhode Island Legislature which permitted him to do a variety of studies and to study with significant people to get a more in depth and cutting edge picture of what was available in Neurology and how the brain functioned.

Trudy asked ” Does this therapy work for other conditions other than RSD? Dr. Pedro stated Yes! What he wanted his contribution to be is the person credited with creating an algorithm for understanding where in the nervous system to intervene.”

There are plenty of resources that will explain what a brain dysfunction is or pathology is, disease process or diagnostic procedure to figure out what folks are complaining about.

The rehabilitative model is where the challenge for the future lies.

Barby ask’s “Does every patient have a different algorithm? Or do you find they are similar with the same condition? The doctors answer’s ” By algorithm I mean a process we go about to evaluate what the affliction is or what’s wrong with the patient.”

Reflex Sympathetic Dystrophy or Dysautonomias in general are a condition Dr. Pedro has a particular interest in. With this condition he tries to find out how the autonomic system is dis-regulated or not working well and then his team tries to decipher in the patients does this person have Reflex Sympathetic Dystrophy (RSD) because the Sympathetic Nervous System is too high and not being inhibited or is it the Parasympathetic System that’s undergone demise and not effective.

“The treatment is actually different and makes all the difference in the world to the patients outcome, Dr. Pedro say’s.”

Barby ask’s ” Similar to Traumatic Brain Injuries (TBI’s) Would there be a different protocol for that?

Dr. Pedro answer’s “A different protocol in terms of how we’re going to add on different diagnostic pieces to the evaluation. Then we begin to identify precisely which modalities the patient needs. A TBI patient may have a similar pathology of an RSD/CRPS patient, may have similar findings, however we may go about the treatment process slightly differently.”

One of Dr. Pedro’s patients and a good friend of Barby Ingle’s just did an interview which will be released in this Saturday’s (June 1, 2013) edition of Pain Pathway’s Magazine. Please look for it!

Physical, emotional and nutritional needs are also taught this during treatment.

The autonomic nervous system delivers fuel to the body and brain. The autonomic nervous system is the automatic part of the nervous system that controls your heart rate, size of arteries delivering blood or fuel to the body and into our brain itself. This part of the body can be evaluated through a series of tests.

Someone with a compromise in their sympathetic nervous system may not have as much profusion as should be present. The long term consequences are considered regarding how this is effecting the tissue and that’s why the trophic changes present in this pathology.

Barby ask’s “Is maintenance treatment required or is this a one time process?”

Dr. Pedro states “The evaluation process takes 2 to 4 hours depending on the patient.” Based not only on tests, but the patients ability to participate.”

At the end of the evaluation we attempt to draw for them what we believe is wrong in the nervous system and make an educated hypothesis as to where the dysfunction is and what can potentially be done to correct it. A series of windows of observation, sympathetic, autonomic windows of observation more appropriately. We identify these at the end of the initial observation and we give the patient a treatment to see if their pain level comes down significantly or at least appreciatively.

That signals to us they are a good candidate for our program.

Dr. Victor M. Pedro is founder and president of Rhode Island Integrated Medicine, located in Cranston, RI.  An accomplished, Board Certified Chiropractic Neurologist, Dr. Pedro pioneered the development of Cortical Integrative Therapy (CIT®)—a breakthrough, research-based treatment designed to address brain and neurological dysfunction in both children and adults.

After remarkable success using CIT® to treat school-age students diagnosed with speech, attention and learning disabilities, Dr. Pedro applied the treatment for use in patients with Reflex Sympathetic Dystrophy or CRPS, dysautonomias, and traumatic brain injury (TBI).

Over the years, Dr. Pedro has lectured extensively on CIT® as a non-invasive, cost-effective treatment for TBI, pain syndromes, dysautonomias, and other brain-related disorders.

Cortical Integrative Therapy (CIT®) has been successful in treating a wide range of painful and debilitating conditions including: ADD/ADHD; apraxia; ataxia; chronic pain; dystonia; dysautonomias; hypotonia; memory difficulties; movement disorders; Parkinson’s disease; Reflex Sympathetic Dystrophy (RSD)/Chronic Regional Pain Syndrome (CRPS); RLS; sciatica; traumatic brain injury; tremors; and vertigo, balance, and gait problems.   ©Rhode Island Integrated Medicine

Other keywords in the interview- Inhibitory system, Renshaw cells, Autonomics, Small diameter fibers, Dysautonomias, Limbic system, Antonio DeMazio

http://corticalintegrativetherapy.com/ Cortical Integrative Therapy Rhode Island Integrated Medicine- The Brain Rehabilitative Specialists

http://corticalintegrativetherapy.com/blog/ NBC 10 Health Check Special Report: TBI & CIT® March 04, 2013

~Twinkle VanFleet, California State Ambassador Power of Pain Foundation

If I have mis stated any facts or quotes please contact me at: caambassador@powerofpain.org  I will make any corrections immediately. Thank you!