2.5

Not using home access for the internet for a couple of months now has been interesting since everything is social media and email, anymore. Web based. I have quite a few articles/essays/pieces to share, but I’ll wait to post them for now. I’ll probably only ever get 3 of a dozen or so up anyway. They were written offline as ability permitted. I generally don’t open the laptop at home.

I’ve been doing Bowen Therapy, each Monday, for about 4 weeks now. Also known as the Bowen Technique. I’ve done this before, but not to this extent. I’ve also been having  LLLT at the same time. For more information on Low Level Light Therapy, you can also refer to NCBI or using the search terms. Having done a clinical trial for LLLT in 2011, I’ve been privileged to be able to have this treatment on several occasions since.

Since I’ve been off those 3 medications in their entirety, I’ve lost nearly 35 pounds in 10 weeks. That time  line also coincides with that thing I did, and a second attempt which I’ll keep right there at this time. Last week, after, I received my certification to help down the anxiety highs. Holistically legal. An option I didn’t want to choose for myself, but one I had to make in order to prevent the 3rd time which could be the charm.

I can feel some change in soft tissue damage and related areas in my upper extremities. I can feel a decrease in some symptoms at my hips down to my feet. (Also the covered areas by my SCS, Spinal Cord Stimulator). Headaches, less intense. No matter what level of decrease I get non weight bearing, the moment I step is the rise. I incorporate dance with Yoga though it’s only upper body and sitting. I only do 4 Yoga poses. I’ve done this for years, off and on, but using it as a tool again, 3 times a day.

Really it’s all about finding my center, again. Solar Plexus, Celiac is in bad shape. I knew that before a few tests last week before therapy. Oh it’s a little about Chakras, aligning grounding etc and a bit about the physical reality of the bodily damage itself. The life force. The breath. Chi, Zen and the ‘I’ll heal me, mentality” because  I know no one else can. That includes the medical profession. Besides they are just a tool, too. And one tool that like us, sometimes needs to be replaced.

I’m hyper sensitive. Not be be confused with hyper sensitivity as a medical term. Few would ever know it, yet I don’t just feel, I feel you and me. I don’t just carry emotion, but I carry your emotion. I don’t just feel pain, but I feel yours, as well. I have to shake that off, somehow and I don’t think it’s possible even in possibility without pretending, or lying to myself that I’m not feeling it. Takes us right back to mental health doesn’t it? Fake it to make it until we break it, or rather, ourselves. Every physical and emotional pain learns a coping strategy. Even a crying baby will learn to cope. .. eventually. It’s all in the mind. Our brains can’t feel pain. The only area that does feel are receptors encompassing outside the brain.

At first I thought I don’t want to lose my mind, I haven’t, I’m not crazy, but know what? Yes I do! I want to lose it. All of it. Let it all just roll out from the bottom of my feet and go away.

Things are still ongoing for now. Appointment and blood draws tomorrow. LLLT and Bowen on Monday. I tell you though when life’s harder experiences are constant, you really come out having learned.

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First Week of February 2016 – And in Memory of Jim Ingle

 

My block helped nearly 2 weeks. I had the Lumbar Sympathetic Nerve block on January 28, 2016.  I had a reduction from a really hard 8 going in for the procedure to a 4 until a couple of days ago when it started creeping back up. L3 and L4 this time instead of L2 and L4. I was so grateful for this. That’s 40-50 percent of reduced symptoms. When I left to receive that amazing award my medication had been delayed yet again. I was a week without already. My block only covered my right lower extremity so 4 means only that which was blocked. I’m still working on a post to share the Bakken Invitation Award experience. I almost left it all behind and I almost didn’t make it through once there, but I did, and I did. The block eased the flare I left in and came home with, allowed extra midnight snacks for the man, dinners, cleaning, sharing, a little catching up. That really is everything it could have been. I don’t count what I didn’t get from the block, I consider each symptom I get relief from. That allows me an over all number, fairly. I tend to be conservative with the pain scale. The time it lasted wasn’t what my insurance wants to approve it again, but it lasted long enough that I could catch my breath again. Since many don’t want anyone on pain reliever, options are minimal for most of us. Not every option is available in every area and not every option is covered by insurance, therefor, we’re stuck in a trap. I’ve already fallen twice in the last couple of weeks. Staying up on my legs is becoming a another risk. I take so much Ibuprofen for inflammation no wonder my liver is a mess and I need to water my kidney’s in excess to keep them flushed due to diminished function. I didn’t get back on my medication until the 10th day and the night after returning.  Had I not been in a flare, or medication delayed, my block may have helped better. The body trying to recover itself from a sudden change and in a sense shock. The inflammation and swelling was horrible. I had my mouth repaired soon after my block. Still a process there. I didn’t have the grafting done even though the bone damage in my face is an issue, too. I fell asleep 4 times today, just worn. I’m charging my SCS right now, so that I can give me a nice goose me up and numb me down.

Movie time.

February 4, 2016

I fell asleep before posting last evening and woke to learn of a heartbreaking loss.

It is with great sadness that Mr. Jim Ingle, Barby Ingle ‘s dad passed away this morning. Without Mr. Ingle, the International Pain Foundation (Power of Pain) wouldn’t exist. He lost his battle waiting on a kidney transplant and other life saving procedures. He fought for himself to the last second, reaching his son’s home in his own vehicle, even after crashing it, where he passed away with his son and first responders before ever reaching the hospital. Mr. Ingle didn’t have a phone to call for his own help, the family was trying to have it replaced promptly which also never happened in time.

Photo is Mr. Ingle presenting the Melanie McDowell Award to Dale Lehn 2008 recipient.

The Power of Pain Foundation (International Pain Foundation) presents the Melanie McDowell Pain Awareness and Advocacy Award annually. The recipient is a pain patient or provider who has demonstrated outstanding commitment to assisting and advocating for people with neuropathy pain conditions. Nominations are solicited in the pain community for people who are making a significant contribution within the field of research, education, awareness, or patient assistance. http://powerofpain.org/mcdowell-advocacy-award/

My heart breaks for Barby, and her siblings, who also lost their mom last year. I’m so grateful that I’ve been apart of IPF POP long enough to have been on conference calls with the man himself. Godspeed Sir. Thank you for all you’ve given, all you’ve fought for and for starting this organization in honor of his daughter Barby and memory of Melanie.

 

Jim Ingle preseting the 1st Melanie McDowell Award to Dale Lehn 2008 2016-02-04

Mr. Jim Ingle presenting the Melanie McDowell Pain Awareness and Advocacy Award to Dale Lehn, 2008 recipient.

 

I don’t generally solicit donations, but in honor of the man who not only brought “Power of Pain” to my life via his daughter, but ours, he’s worth it.

http://powerofpain.org/donate-ipain/   A gift can be made in his memory and/or honor – Jim Ingle

Thank you!

High-Frequency Surpasses Traditional Spinal Cord Stimulation in First Controlled Trial Comparing Technologies

Released: 24-Mar-2015 2:05 PM EDT 

Newswise — March 24, 2015, NATIONAL HARBOR, Md. –- The first-ever randomized, controlled trial to compare spinal cord stimulation (SCS) technologies found that high-frequency SCS using 10 kHz (HF10) exceeded lower-frequency, traditional SCS in response rate and pain relief. Further, this was achieved without the paresthesia that may cause discomfort with traditional SCS, the researchers reported in a scientific poster at the 31st Annual Meeting of the American Academy of Pain Medicine.

Traditional SCS low-frequency (~50 Hz) stimulation is an attempt to mask the sensation of pain with a tingling or buzzing sensation, known as paresthesia. Therefore, the therapeutic goal with traditional SCS is to cover the areas of pain with paresthesias, explained B. Todd Sitzman, M.D., M.P.H., medical director of Advanced Pain Therapy, PLLC, in Hattiesburg, Miss.

In contrast, “high-frequency HF10 therapy utilizes a stimulation frequency that is orders of magnitude higher than traditional SCS,” Sitzman said. “HF10 therapy does not produce paresthesias and achieves superior back and leg pain relief.”

More importantly, HF10 therapy was shown to be superior to traditional SCS in all of the study-related primary and secondary endpoints, including response rate and pain relief. The magnitude of back pain relief was consistent with previous European research of HF10 therapy (Van Buyten et al, Neuromodulation 2013;16(1):59-65; Al-Kaisy et al, Pain Med 2014;15(3):347-54).

The use of SCS, introduced in 1967, has expanded as a treatment for difficult pain syndromes, encompassing peripheral neuropathies, complex regional pain syndromes, peripheral vascular disease and other disorders in addition to failed back surgery syndrome (Deer, Techniques in Regional Anesthesia and Pain Management 1998 2(3):161-7).

Traditional low-frequency SCS systems are widely used in clinical practice. However, the scientific literature indicates that achieving back pain coverage with traditional SCS is technically difficult and is often not sustained over time. (North et al, Neurosurgery 2005;57(5):990-62005; Frey et al, Pain Physician 2009;12(2):379-97). According to one report, 71 percent of patients who received an implant with traditional SCS experienced discomfort from the stimulation of paresthesia (Kuechmann et al, Abstract. Pain in Europe VI [EFIC], Lisbon, Portugal: Sept. 9-12, 2009). In the current study, 44 percent of patients receiving traditional SCS reported uncomfortable stimulation.

The study was a prospective, randomized, multicenter, comparative trial of the investigational HF10 vs. the standard SCS therapy, designed in consultation with and monitored by the FDA. Institutional review board approval was obtained for each study site.

The 12-month follow-up data indicated that the responder rate with HF10 therapy was twice that with traditional SCS for both back and leg pain. Also, the average degree of pain relief with HF10 therapy was more than 50 percent greater than with traditional SCS. The level-1 evidence with 12-month follow-up meets today’s rigorous standards for evidence-based healthcare and complies with regulatory agency and payer preference for comparative effectiveness, the investigators said.

“These results provide important comparative effectiveness data for healthcare providers and clinically relevant information for pain physicians, patients and payers,” Sitzman said.

At present, HF10 therapy is investigational in the United States. The manufacturer of the device, Nevro Corp., which funded this study, anticipates obtaining market approval from the FDA by mid-2015.

Poster 140 – Rationale for the SENZA-RCT Study Design and Comparative Outcomes

About AAPM

The American Academy of Pain Medicine is the premier medical association for pain physicians and their treatment teams with over 2,500 members. Now in its 32nd year of service, the Academy’s mission is to optimize the health of patients in pain and eliminate pain as a major public health problem by advancing the practice and specialty of pain medicine through education, training, advocacy and research. Information is available on the Academy’s website at http://www.painmed.org.

via High-Frequency Surpasses Traditional Spinal Cord Stimulation in First Controlled Trial Comparing Technologies.

Health News – First Hospital to Implant Latest Spinal Cord Stimulator for Pain Relief

logo30/10/2014 20:27:00

ALBANY, N.Y. — Albany Medical Center recently was the first hospital in the nation to implant the latest device in spinal cord stimulator technology to address chronic pain in backs and legs, among other areas.

Health News – First Hospital to Implant Latest Spinal Cord Stimulator for Pain Relief.

(Pressed Post)

My Journey With Chronic Pain By Sara Gilbert Nadler-Goldstein

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

Endoscopic Retrograde Cholangiopancreatography 5/21/13 Due to Gall Bladder Removal Fiasco

TwinkleVanfFleetJPDrainMarch242012This entire ordeal began with my emergency Gall Bladder removal 14 months ago at UC Davis Medical Center in Sacramento California. When I awoke from surgery I learned I had a small internal bleed and that was why a JP drain (Jackson Pratt) was inside my side by a long tube. I also learned that a small piece of Gall Bladder was not removed but no one went into details why. I asked if it would cause me any future problems and I was told it would not. I was sent home days later with the JP drain still attached to my body. At home I was required to measure the blood that had accumulated in the drain bulb, measure it, record it in a log for the doctor and discard the blood into the toilet. I had to do this 3 times a day for 8 days. I could only sponge bathe and stayed in the hospital gowns even at home. I had to pin the JP drain to the gown otherwise it would pull out of my body.

All year long I continued to have pain in the same area right beneath my chest, under the right breast, behind the chest wall, an opening and closing feeling and as it opened and closed a feeling of a fire place poker being shoved in and out.

Everyone thought I was crazy. It couldn’t be my Gall Bladder, I didn’t have one!

Late February of this year I began to have severe pain where the Gall Bladder use to be, I could hardly breathe, I deal with CRPS pain and average a 7 daily, but this pain shot strait to a 10. I thought I was dying! My husband took me to the ER. They didn’t believe it to have anything to do with my upper belly, Gall Bladder either, Xrays showed 2 clips from that Gall Bladder surgery, my Spinal Cord Stimulator (SCS) and it was dismissed as constipation. I’m sure I was constipated too with the meds I take, specifically Suboxone at that time which I took for CRPS pain management the last 3 years, but that’s not what the pain was from. I was sent home with the suggestion to follow up with my primary asap. I did!

He ordered an ultrasound right away. The ultrasound showed I still had stones which was believed to have been inside me since the original Gall Bladder surgery. It also showed inflammation and re growth of tissue as the posterior wall of the Gall Bladder is adhered to my liver.

I was sent to a surgeon. I told him how everyone thought I was nuts when I mentioned the pain being so similar to the original Gall Bladder pain, he said “Well you might be nuts, but it IS your Gall Bladder!” He had a great sense of humor and finally some validation.

In order for him to fix me he will have to cut part of my liver away.

He first opted for an MRI, but since I have an SCS (Spinal Cord Stimulator) I am unable to have one.

Instead he ordered a ERCP.

On Tuesday May 21, 2013 I am having 2 procedures done. The ERCP (Endoscopic Retrograde Cholangiopancreatography). I will be under full anesthesia while the camera is inserted down my throat and for the removal of the stones from my bile duct. If there are no stones found, but they were there, he will still cut the bile duct clean it out and leave a stent or tube behind.

If I end up with Pancreatitis as a result of the procedure I will be admitted to Mercy General Hospital in Sacramento for a few days, if not, I will get to come home the same day if no complications. I also learned that one of the 2 procedures may be rescheduled due to time. I hope not.

This has been going on since late February and the pain while it comes and goes can be so overwhelming even a second trip to the ER 3 weeks ago with an injection of both Toradol and Morphine then Morphine again an hour later didn’t help for 2 hours after I got home.

This needs to be done for me to go on for the actual surgery on my liver. While the stones cause pain, so does the that piece inflamed on my liver.  It’s growing new tissue. It feels like back labor. My right side beneath my ribs throb in a way hard to describe.

I feel like that surgery in weeks or months down the line.

One thing that does bother me a bit is that in my xrays at UC Davis ER in February the clips were seen. In the ultrasound less than a month later they weren’t.

I hope I didn’t spring a clip or two. Kinda funny the way I said it, but not really.

This story will have a continuation…

~Twinkle V.