It’s important to understand that MLT isn’t a magic pill we get to swallow and become miraculously cured by. It’s the beginning of curing ourselves. Cure in medicine is defined as:
cure (kyur) n.
Restoration of health; recovery from disease.
A method or course of treatment used to restore health.
An agent that restores health; a remedy.
cured , cur·ing , cures
To restore a person to health.
To effect a recovery from a disease or disorder.
Remission in Medicine is defined as:
remission re·mis·sion (rĭ-mĭsh’ən) n.
Abatement or subsiding of the symptoms of a disease.
The period during which the symptoms of a disease abate or subside.
It’s not really difficult to understand that a cure is just as possible as remission can be. How? The answer is simply by restoring a person to health.
“Manual Ligament Therapy (MLT) is a new and original technique created by Arik Gohl. … We have learned that ligaments are a significant source of pain, especially in cases of chronic pain. Until injured ligaments can heal from their underlying dysfunction, muscles will remain in a tense and guarded state.”
I know what you’re thinking. If you have Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome that you’ll forever live a life of pain with potential spreading from the original site of injury to the rest of your body.
It can be true, but it doesn’t have to be. All of those symptoms, burning, allodynia (pain resulting from a stimulus (as a light touch of the skin) which would not normally provoke pain; also: a condition marked by allodynia) hyperalgesia (increased sensitivity to pain or enhanced intensity of pain sensation), hyperesthesia (unusual or pathological sensitivity of the skin or of a particular sense)
I really don’t have either of the above anymore. My body is still learning not to feel sensations of pain while also recognizing those areas that aren’t hurting. If anything its just hyperesthesia I’m working through. Example, sock me and I’ll feel that sensation long after the actual event. Like a repetitive action.
Keep in mind after years of pain, signals misfiring, injuries taking on abnormal healing paths, other areas of my body becoming effected beyond the site of the original injury that I have a main role to play in reversing these abnormalities. I have to reset my perception to pain by reversing all that my body knows, felt, and has learned as a result.
5 days of Manual Ligament Therapy has gotten me to this point. The custom orthotics is correcting every abnormal step I’ve taken since January of 2001.
You might be thinking manual? Yes, you’ll have to be touched, and you’ll have to move areas you’ve stopped using due to RSD/CRPS, chronic pain. This isn’t traditional physical therapy, you’ll actually feel restricted tissue, muscles, and a myofascial release of those symptoms and connective fibrous tissue eased.
What about burning which is the hallmark symptom of RSD? It’s eased the same way.
Currently MLT isn’t a covered therapy under insurance. Like many other integrative, complimentary, or holistic practices, including acupuncture, acupressure and similar therapies which may be beneficial we’re still legislatively working on these options for you.
Another healing retreat will be held at the Sheraton Los Angeles International Airport beginning Monday, November 28, 2016. http://www.sheratonlax.com/
The cost for the treatment is $2,500 and doesn’t include travel or hotel. I know it sounds like a lot, but it’s not compared to a single injection or invasive procedure billed to insurance or accumulative and yearly co-pays. For more information please contact Monica Depriest: Monica@gohlprogram.com
I’ll be present also to follow-up on my own therapy.
So with that I look forward to meeting you and hope that you’ll give yourself the opportunity to feel better. Sometimes it takes pain to get rid of it. It’s a process of not only healing but believing in yourselves enough to understand that’s it’s possible rather than impossible and pain being the rest of your lives.
Monica Depriest and Arik Gohl picked me up from my son’s home on October 23rd, 2016. My husband and I had spent the weekend there to take care of our grandson De’Mantai so his mom could enjoy some time away. I had just had a cervical steroid injection. This was my second in 8 weeks. I had only ever had Lumbar Sympathetic Nerve blocks prior and over a dozen of them. I had began with a series of 3 scheduled one week apart in 2006. It had taken 6 years for any treatment other than medication management due to Worker’s Compensation. So that I’m precise rather than confusing, these weren’t denied. Had they been denied I could appeal, instead just stalled and delayed. Since the first 2 series of 3, I’ve had one injection a year since, generally during winter and often times delayed beyond my physician’s control.
We arrived in Loomis California an area outside of Sacramento that evening.
Photos above taken 3 hours apart and the same day as the video below. November 4, 2016.
Admittedly, my body was weak and pain was high, but I hadn’t shared that yet. I tend to go off on my own, and attempt to distract myself when among others. As we arrived, Susie and her son Tommy who has RSD/CRPS, along with her son David had also arrived. Jamie and Spencer arrived later. Jamie Pearson is active in the RSD/CRPS communities, too. Arik’s wife Veronica was amazing and helped us all feel at home. Vero’s hospitality and playful spirit afforded us the ease of being less anxious and at ease among those we didn’t know. Sam Ballentyne licensed therapist and energy healer was also present during the week. Dr. Edward Glaser arrived the next morning. Dr. Glaser is the owner of Sole Supports and an engineer and DPM specializing in Podiatry and Orthotics. Another Podiatrist joined us to observe and all our therapies would begin the morning of October 24th.
16 years. 10 with a permanent Spinal Cord Stimulator (SCS) that hasn’t been turned back on since the morning of the 24th. My only blessing that has been on day in and day out since 2006. The only time it’s ever been off is to either charge a drained battery or to push past 2-3 days to allow my brain to scramble and disguise the pain signals it provided. Our brains realize it’s being tricked. Turning it off let it work better again when turning it back on.
It’s been over a week since returning. I wasn’t suppose to ever be able to do this, at least without added pain or causing a flare-up. Lets see if I can get to the point of running one day. 2 days ago, I was still told I never will.
A Pittsburg-based drug development company has received U.S. Food and Drug Administration (FDA) approval for phase 3 clinical trials of a product to treat severe, persistent pain. The medication, T-121, is being developed by Thar Pharmaceuticals and is expected to enter the market by 2019. T-121 is an oral version of Novartis’ intravenous-only zoledronic acid, which is sold under the brand name Zometra. T-121 will be intended for patients suffering from complex regional pain syndrome/reflex sympathetic dystrophy (CRPS/RSD), a chronic pain condition often brought on by some sort of trauma. About 70,000 people across the U.S. experience pain from CRPS/RSD, which can become chronic over time and become a disabling condition.
Treatments for CRPS/RSD.
There are many different types of treatments for CRPS and new ones come about relatively frequently, although what works for one does not usually work for another, making treating the condition all the more difficult. Generally, the earlier CRPS is caught and treated correctly, the greater the chance that the condition will respond to medical treatment. Although most doctors agree that a combination of diet, exercise, physical therapy, and medication is the best treatment of CRPS for most patients, exactly what that combination may be and which medications work best is a highly debated issue among pain management doctors. There are no FDA-approved treatments for the pain of CRPS/RSD. Thar Pharmaceuticals developed the drug through the FDA’s orphan disease program, which allows for expedited review, tax credits and other competitive advantages for medications that help fewer than 200,000 people.
CRPS/RSD affects fewer than 200,000 patients in the U.S. each year, according to the National Organization for Rare Disorders.
In the early evening of Valentines Day, February 14, 16, I was placed in handcuffs in front of my residence and transferred to #MethodistHospital psychiatric hold where I got to come home the evening of February 16th Initially, I was being transferred to another facility for a 72 hour hold and evaluation after the Dr. said I wasn’t a threat to others, but I was to myself. Upon re evaluation the afternoon of the 16th, the doctor via tele medicine (Robot) allowed me to go home. The bruises on my body (severe) are not self inflicted, but are the consequences of my actions. After being denied 2 types of medications I’ve been on over 10 years (non opioid, anti-depressent/nerve pain and an anticonvulsent, 2 others removed entirely and abruptly January 2015 and reduced from 90 to 30 on Cymbalta at the same time, being continuously delayed, denied, retaking these 2, being denied again, going through the withdrawals over and over and knowing how many of you go through the same or similar, I began to crack. Days prior I filed the appeal, the next day I sought psych help from one of my providers, but was never contacted back. Valentines day started beautifully. My husband set up our patio, and have a vase of flowers for me, coffee and it was peaceful. When I woke that morning, he said “don’t go back” referring to the bedroom. He said” close your eyes” I did. He led me to the patio, the best gift I could have been given. As the early afternoon and sunshine made it’s way in, I was updating hand notes previously taken on a legislative conference to send as minutes. I was listening to music. My emotions began to rise. I was upset that I couldn’t be there for Barby in the loss of her dad, or my mom who’s doing all she can to keep her heart beating, or my dad, or my children, even my sister. I saw that denial letter again as I was highlighting the inaccuracies it contained. I tossed back a 200 ml bottle of vodka. To be specific the $1.99 bottle of Tamiroff (the cheap crap) 40% alcohol by volume. It wasn’t the cause of my actions, but it was the liquid courage to tell it how it was and how it shouldn’t be, however misplaced. I remembered what WC took from me, what I was manipulated into 14 years ago. Something that even possibility, chance or a cure can never bring back and I realized how absolutely stupid I was to listen to my health team at the time. See? I’ve learned and I’ve grown since then and while now I have to tread carefully, I refuse to shut up for me, or for you. And I remember that when my case was initially force closed in 2003, I asked for 1 thing. Just one, and whether my 3 know that or not, I submitted it in writing. I asked for them to apologize to my children.
They’re still waiting
I stood in the street and screamed everything we go through. #Chronic, #IntractabIe#Pain, #CRPS, #DWC#California#MTUS, denials and delays, I screamed that if you take an opioid, tomorrow you’re defined an addict If you have a drink, guess what? Now you’re an alcoholic. I screamed that records should be maintained accurately and that I was DONE! With irresponsible people fucking up responsible lives. Was my act responsible? Perhaps not, but the cause and reason was.
My tongue was foul.
When I attempted to advocate for myself, speak of compassion and understanding, humanizing people for all, and reveal what I do and that I wasn’t blind to it all, I was considered hallucinating, fabricating, making it up, laughed at, demeaned and ridiculed. Being kind, caring, loving, understanding, respectful, honest, and trustworthy has got me no where. Incline my head to the higher ups as if they’re right, when really I just don’t have the guts to advocate on my own behalf and tell them they’re wrong.
A person (and patient) who’s done everything right has labeled me, defined me, and stigmatized me as someone who’s wrong and who’s done everyone wrong.
They wouldn’t even give me my SCS controller to turn off my stim. Flat increases stimulation. The nurse tried to give me some line about, not right now, she didn’t know what I was talking about, so I tried to tell her. Being dismissed from that made me see even more red, I called her stupid and told her to f off. Then I apologized because even in my upset state, I had the mind to know it really wasn’t her fault, she was just ignorant and uneducated.
I won’t be tolerating inaccuracies in records, healthcare or otherwise. I won’t be tolerating patients not being able to add note to correct the record. I won’t be hiding away under the blankets anymore, while people create their reports to satisfy their own job criteria, yet leave out pertinent information. I’ll be up to make sure you know you better get it right. And that people deserve truth about all else.
I’ll be sharing this story in it’s entirety, there’s so much more than this. My records, PRIUM, tox screen, etc are being sent to the International Pain Foundation. Via iPain someone gets the exclusive. I’ll decide free or fee. Oh and I got on the inside in all of it, now I know what goes on behind those scenes and those doors. I supposedly blew a high alcohol level. But here’s the deal. The bottle is still the same bottle it can’t magically become something else. The amount my body took in wasn’t more than that, I’m 200 pounds, so go figure. I’ve saved that little bottle as a souvenir. Excuses? Not at all. I’m not proud, but nor am I ashamed. My transparency will bring me back up, enough to prove, I haven’t lied, fabricated and I wasn’t on any illicit or illegal drugs which no one believed either.
On the contrary, the truth I’ve told and will tell
Will become me
(This is my #FightSong
… Take back my life song)
If I gave anything that night, I gave 2 things.
1. On command I removed my hands from my mama’s jacket pockets and complied without incident to place my hands behind my back. #SacramentoSheriffsDepartment. Everyone should do the same in all situations.
2. I’ve given all of you the rest of my life; the one I can’t go back on.
My name is now associated with defiance and lock down.
Nothing else was considered
Sleep disorders, narcoleptic episodes
CSA (my brain doesn’t send the signals to my body to breathe)
Withdrawal (probably over that by now, but the effects I’m still dealing with)
CRPS (Flare) + and an altered brain from the last 13 months of continuous WC hell.
CRPS (secondary depression, anxiety disorders, PTSD x 2 (diagnosed)
(excluded are internal diagnosis’)
My medication list has been updated each and every time I’m seen by my physicians. Yet, my discharge shows I’m on 11 meds, including Butrans, 5 and 10, a benzo and others. I’m on Lisinopril 1 x a.m, Atorvastatin 1 x p.m, Hydralazine as needed only, BP 180/+, Nuvigil daily, and BuTrans Patch/wk. #DignityHealth is linked to all my doctors. The hospital is part of Dignity Health. What’s the point of the EMR, PMP, PDMP or even a computer if it’s not properly used?
Understand why I kept saying “I’m fucking done” I’m done doesn’t equal I’m going to kill myself. I’m over it, doesn’t mean it either. I don’t want to be here doesn’t either. What they all are is some else’s perception and reality I could fart and my son would throw up his hands and say “I’m done!”
Check it out.. My voice will carry, I have the guts to say it, open eyes and touch hearts, contribute to change, maybe not for me, but hopefully for someone else
If I killed myself, I wouldn’t get to say it, now would I?
I’m sure they gave me Cymbalta, Zonegran and Hydralazine in the lockdown. I wasn’t suppose to be given any of those. Only Lisinopril and the Statin. No wonder my head hurts.
On the 29th of January, I put in for my Cymbalta (30, 1x) and Zonegran (100, 2 x). I went to my grandson’s 10th birthday party yesterday (sick) but I played it like it was something else, I played it off so good and to the point of… shrugs. Yah, slam dunk withdrawal again. Pharmacy kept telling me my doc hadn’t refilled. (A lie) If you didn’t know the truth, say you don’t know. Today I get a letter in the mail from PRIUM. Cymbalta and Zonegran denied. Last January, 13 months ago, I was removed from 2 other medications entirely (one of which was Lidoderm) and reduced from 90 to 30 Cymbalta. I tried. I faked it to make it and I prayed it and played it. but was slipping harder than anyone could ever see, . There’s 1 med left and I know it’s next. Nearly every month I’m delayed, the months I’m not delayed by days, I am by weeks. I’m sure my brain is fried by now. I’m sick all the time from abrupt discontinuation, to trying to re stabilize after getting back on, to slam dunked again. Over and over and over. Those medications aren’t suppose to be slam dunked off of. They aren’t suppose to be abruptly discontinued. They are suppose to be weaned off to prevent seizures and adverse affects that can in some cases include death. Their letter is a lie, it contradicted 12 months ago where it did indicate Cymbalta and Zonegran and now says the CA MTUS doesn’t indicate for the treatment of neuropathic pain. (wrong). It also said because I’ve been treating with a dentist and was ON Norco 5/325 that the Cymbalta and Zonegran didn’t keep me OFF OPIOIDS. A fucking lie. As of the date of that letter. I had 3 dentist appointments. And I suffered and declined med, even tho I took some. I also got permission from my PMD prior to ever getting an RX , filling it or taking it. I have not asked for 1 single extra pill and I didn’t even fill the Rx I had for days later. But know what? It’s a done deal now. TOWER ENERGY GROUP – SCOTT CORNWELL ADJUSTER ARROWPOINT CAPITAL. You might want to get your facts right. You expect us to have ours accurate, yes? Let me see here in 1 year approximately $15,000 a year in medication management times 81 years of age. I’m still only 47. I got your game, you better get mine, too.
This letter said that I failed Lyrica and Neurontin (the reason it now says NO to Zonegran, but that I didn’t fail Carbamazepine or Lamotrigine. You got me stuck on stupid. For real? drugscom says make sure to tell your doctor if you have heart disease, high blood pressure, high cholesterol or triglycerides;
liver or kidney disease; ALL OF THE ABOVE. I get it, compromise one side for the other right? Which really means lower your spending. Sorry idiots, I settled for lifetime medical and didn’t take your money. Go on keep punishing me. Neither of these are NOT indicated for me. I didn’t appeal your last denials (January 2015) and I’m not appealing these either. Oh and by the way, next time you put bull shit in my letters, CA fail first/step therapy REFER TO AB 374 and know that if you’re going to quote taking and failing, you better also note all else that goes with it.
Because I think you failed something else…
The Travesty of Delays- California Workers’ Compensation SB 863 and AB 1124
I would like to offer that in conversation this last week with Dr. Kolodny and others who advocate against the use of opioid pain care that I attempted to stress the importance of responsibility and education in stating that ”
“So much time proving how bad opioids are when we could have been educating, teaching personal responsibility.” (Twitter only allows so many characters)
A direct reply and quote from Dr. Kolodny
“Education & “teaching personal responsibility” will not make opioids less addictive or more effective.”
Already in today’s call responsibility has been spoken of as well as education several times. He came on and mentioned Guiding physicians. Isn’t guiding educating?
Other therapies can potentially be more harmful, anti depressants, anti seizure medications for the treatment of chronic pain, such as Cymbalta,
Neurontin, Nortriptyline, Amtriptolyne and similar medications also have misuse and abuse potential. When there is misuse, abuse and Overdose is already likely. Surgical intervention is contraindicated in patients with nerve damage, neuropathies, CRPS/RSD. Some of these opioid overdoses were in part due to other medications, mixtures and alcohol, not solely opioid. Integrated and functional restoration programs are important, but few insurances at all, cover them.
Can we try not to stress the decline in white people falling to addiction, when we didn’t seem to be as concerned about blacks, or minorities. many were like, oh well, let them kill themselves, calling them stupid. We’re your kids stupid? I think not. I find it disheartening.
People were people all along. Also personal responsibility is directly related to opioid overdoses. If these children or adults didn’t understand the risk, or what the medication may cause, then education was absolutely necessary by parents, family and spouses first and foremost before the medical community. It becomes a mutual responsibility. Not only the doctor who prescribed it.
If they can’t stop, it’s our responsibility to intervene on their behalf. and attempt to save their lives before it’s too late.
Pain is physical, and pain is emotional. Physical pain seeks quality of life, the emotional pain, those against opioid’s seek comfort for
their loss. Pain doesn’t discriminate.
Physiology also plays a major role in this topic. Lets not sacrifice people for people. Otherwise unintended consequences become intended
consequences. Responsibility in prescribing isn’t a one way street. We seek out the doctor, they don’t seek us out.
~Twinkle V. / Advocacy Director, International Pain Foundation #iPain
As I get ready to fly to Kona, Hawaii for the Medtronic Bakken Awards, I’m trying to help myself overcome challenges related to traveling, weight bearing, pulmonary and sleep disorder issues. My breathing has been unstable this week, my head, neck, arms, and even female troubles have poked me in the side.
I had my appointment with my PMD yesterday to ask for considerations that might help me through as it’s becoming harder and harder to stay up on my own and maintain pain levels. I already put in for ADA assistance during the travel and at the hotel. Yet, I won’t allow myself to be confined to a wheelchair while there, so I’m carefully pacing myself so that my legs carry me. My Medtronic Spinal Cord Stimulator has been my pill for 10 years. I’ll be able to adjust for optimum relief, but to do so also means that I have to either not be on my legs/feet at that time or not raising my settings for added comfort. I learned a long time ago how to get the best out of it for me. I’ve also learned that there are times I have to trade relief for walking and I can’t always have both at the same time. I can set my stim to numb me, but because I am one of the lucky ones whose stimulation does reach the toes, increasing this setting can knock me off my legs. I reserve this for non weight bearing pain relief. This is not an adverse effect, but a plus and benefit that has to be noted and chosen to best fit my time and place.
My Auto Servo Ventilator is too big and quite heavy to carry, so I may have to go without it. Still working on that. Otherwise I’d be traveling with 2 medical devices and have little room for anything else.
At this time next week, we’ll have already landed and be apart of the meet and greet with each honoree, Medtronic and so many others. I’m looking forward to representing Power of Pain Foundation as the new International Pain Foundation, myself as honoree, each honoree for what they have also accomplished and given, advocacy, volunteering, my family, my closest friends, and Dr. Earl Bakken and Medtronic Philanthropy.
There are a few wonderful people and establishments I want to say thank you to for being apart of this with me.
The International Pain Foundation (IPF) #iPain – Previously known as the Power of Pain Foundation. http://powerofpain.org/
Sacramento Pain Clinic – Dr. Michael Levin – Since 2004. Not just a Pain Management Doctor, but a patient advocate going above and beyond his own job for his patients.)
(Jacob has been part of my surgical team. He’s also adjusted me as needed. When I had my 9 year battery replaced I donated back to Medtronic my carrying bag, handheld stim (my stim) case, charger, hip straps, antenna, and manuals so that someone who needed these items in whole or in part could have them. Jacob came to my home to pick it up. Amazing man.)
(The center that taught me all there is about pain, physically, emotionally and psychologically. How to live with it using the mind, spirit and body to overcome flareups and maintain a modicum of sanity. Because of them I’ve been able to teach others what they taught me and find some joy and laughter in pain.)
Western Dental – Elk Grove Florin Road, Elk Grove, California
Dr. Tooloei, Staff.
You did great. Thank you for trying before I left for Hawaii. Trying meant enough to me.
Trudy Thomas, Featured BlogTalkRadio Host of the Living with HOPE Radio show on the Body, Mind and Spirit Network.
So proud of you and all you’ve given, selflessly. Happy that we have each other and our friendship survives the things we can’t do anymore.
Honored to have been both your co-host and guest speaker and warmed that you will always be family. Thank you for being all that I can count on as honorific leader/admin of my group. I love you!
Roy, MD Junction – http://www.MDJunction.com (Honored to have lead your Reflex Sympathetic Dystrophy Support Group for years.
Glad to have lead the ADHD support group on behalf of the children and parents who needed someone to oversee it. Pleased to still be a Senior Member and
MDJ Advocate. Love you all!)
Barby Ingle, www.BarbyIngle.com
(Together we can! Together we will! And together we are! Through MDJ and Trudy we found each other. I’ll forever remember the ones who cherished me for cherishing them. All 3 of you! Onward I go with #iPain. I love you!)
My Mom and Dad(s) (I know my dad is watching over. Gone since I was 22. My mom and dad was married 25 years when I closed his eyes. My mom and dad have been married 20 years and dated prior to that. So Mr. Don Tresca has been my father just as long as my birth dad was. I pray I’ve honored them all evenly and fairly as their daughter. I love you!)
Erik, Kharisma, Rikki, Kurtis and De’Mantai (my 5 lights). (Awards and recognition is great but not if they are seemingly meaningless to those that it should have mattered most, too.
There’s so much I’ve advocated for on your behalf’s that you’ve never even seen. I know that it all gets stale at some point but if you only knew it was never more for someone else than it was for you. Seek and you shall find. love you! Ohana.)
I’m so glad Daddy saw, felt, and knows now. Sometimes it takes a miracle and that miracle came. It’s all good. Ask him ~winks
Annie-Marie Garcia (30 years! Time in between where we had gaps because life does that with work and loss. We don’t want to add burden to those we love or stomp on someone else’s, okay. That’s what we tell ourselves at least. I’m glad I got you now in the illness you should have never ended up with. I wish I was there when you were first going through it and if only I had known. Lets never let anything separate us again. For you and I, we have something special, we can see each other every day, or have weeks, months or years go by, but we always know that when it comes down to it, we are the ride or die. I love you!)
Maryann Kupidlowski Stafford (My sister since our babies were babies. Young teen daughters. If we weren’t there together we would have never met. Your curiosity, my extended learning, teaching. We both did, and we both gave, mine was just for extending natural order A decade? 12, 13. Time flies. Here we are moving forward in light, love and tomorrow. I love you!)
Eileen McCready (A long time now too, background, foreground, compassion and understanding beyond pain. Sister of mine, always. I love you!)
Saskia Hubelmeijer (My international sister who does all she can in the Netherlands despite pain and hardship, and for America, too. Who’s assisted in leading my group since 2011, as formal admin and informal I love you!)
Billy Rose (Thank you brother for leading light and love above pain and hurt for all people. You demonstrate what the world needs more of and you are providing the change needed to overcome it all again) I love you!
The Council (We are who we are and one day when the earth is over, or death takes us, we’ll still be us, together, teaching, giving, inspiring, awakening those asleep all in their own time) I love you all. http://www.councilofenlightened.org/
(In memory of IRJR http://www.irjr.com/, a great man, friend, Clamper, who many years ago when founded Widders Web honored me with his chat program instead of the one I was using for us, I used his to then honor what he started years previous to that. http://www.irjr.com/widderschat/ While the pages are currently not found and the chat needs updating, I wanted to thank him again. Mr. IRJR is no longer with us.
SPPAN (State Pain Policy Advocacy Network) (I hope we continue on)
Thar Pharmaceuticals Inc. has received Food and Drug Administration approval for phase 3 clinical trials of its core product, dubbed T-121. Marketing of the oral drug, which will be used to treat severe, persistent pain, is expected by 2019, according to President and CEO Raymond Houck.“Getting to phase 3 is a big deal,” said Mr. Houck, 58.Phase 3 trials last up to four years. The test is intended to gauge a drug compound’s effectiveness, according to the FDA. Only 25 percent to 30 percent of drugs reach phase 3.Thar, which was founded in 2008 and employs seven people, is targeting complex regional pain syndrome, a condition that usually follows a bone fracture, serious burn or other trauma. About 70,000 people nationwide experience such pain, which can abate over time or become a disabling condition.There are no Food and Drug Administration-approved treatments for the pain. Thar developed the drug through the FDA’s orphan disease program, which allows for expedited review, tax credits and other competitive advantages for medications that help fewer than 200,000 people. Historically, big drug companies have shunned diseases that affect few people, focusing instead on making the next blockbuster statin, a medication taken by millions of people for high cholesterol.But Big Pharma has been increasingly paying attention to orphan disease treatments because of the potentially big paybacks for new prescription medications. Thar is not yet profitable and funding for operations has come from private investors.Thar’s focus is converting intravenously administered medications into ones that can be taken orally, preferred by health insurers because oral drugs are less costly to administer. Patients also tend to prefer oral drugs because administration is noninvasive.Thar’s T-121 is an oral version of Novartis’ intravenous-only zoledronic acid, which is sold under the Zometra brand name and prescribed to prevent or treat weakened bones and other conditions. Zometra’s safety record is expected to further speed FDA review of Thar’s oral version, Mr. Houck said.
Kerry Whyman suffers from complex regional pain syndrome, which makes her highly sensitive to noise. Photo: Paul Jeffers
December 6, 2015 – 12:15 AM
For 16 years, Kerry Whyman secretly thought she had bone cancer and was dying – “secretly” because she’d stopped telling doctors how much pain she was in.”I’d wake up and my ankles were swollen and bruised, like they were sprained,” says Ms Whyman, 55. “The doctor would ask ‘what have you done?’ I’d say ‘nothing.’ He’d send me for ultrasounds and they’d come back normal … I decided to shut up because I felt I looked stupid.”If the pain wasn’t in her ankles, it was somewhere else, sometimes in her organs. It seemed to move around Whyman’s body at will. And it became more intense when she was exposed to noise. “My television is turned down to the lowest volume possible, and it’s still too loud.”She got by all those years on paracetamol, anti-inflammatories and lot of drinking. Advertisement. One day in 2008 Whyman met a woman with the same symptoms. The woman told Whyman that she was suffering Complex Regional Pain Syndrome, a rare and baffling condition that was first described during the American Civil War – and until 10 years ago was routinely dismissed as a psychiatric disorder.”When I asked my GP if I had CRPS, he said he’d never heard of it. He thought I had carpal tunnel syndrome. But tests showed I didn’t.”A neurologist finally confirmed CRPS. It most likely began when Whyman fell and fractured her right wrist 23 years ago. In most cases, Complex Regional Pain Syndrome is an ongoing consequence of a fractured limb – the broken bones heal, but the pain lingers, wanders randomly, and is aggravated by changes in weather, stress and noise. Since the diagnosis, Whyman has been on “a merry-go-round” of treatments, most of them not working. The only thing that has given Whyman relief has been intravenous injections of ketamine, the hallucinatory anaesthetic.Three times a year she is admitted to hospital for a week, and kept on an intravenous drip. She’s knocked around but the pain goes away. Except in September, her most recent hospitalisation – it didn’t work. She’s resisting suggestions to undergo direct stimulation of the spine.”They say I’m a perfect candidate, but surgery has to be the last resort,” she says.Depending on the research, there are between five and 25 new cases of Complex Regional Pain Syndrome per 100,000 every year. The actual prevalence is much higher because people, like Whyman, suffer for years.About one in 10 people with a fracture go on to develop some form of the pain syndrome, says Professor Peter Drummond, a psychologist at Murdoch University, one of the few people doing research into the causes.The Australian & New Zealand College of Anaesthetists is funding a study by Professor Drummond and Adjunct Professor Philip Finch, a pain medicine specialist, to unravel some of the complexity. They have together been researching various aspects of CRPS for 25 years.A recent study found there is an increased number of alpha-1 adrenoceptors on skin cells and nerves in the damaged limb of Complex Regional Pain Syndrome patients. These receptors are involved in the stimulation of the sympathetic nervous system, which controls the “fight or flight” response. It may be that pain nerves are being over-stimulated. The researchers are further exploring this discovery.”We’re not sure why these receptors are over-expressed,” says Drummond. “It seems to be a product of injury to the nerve itself or the inflammatory process. We’re studying that in cell cultures, to work out what the stimulus it might be.”The new project is looking at the idea that the brain, in failing to adequately suppress pain, distorts normal sensory processing in the syndrome.In a world first, Drummond and Finch will study the interaction between the auditory and pain-processing systems in CRPS patients. They plan to measure brain stem activity as the left and right ears of patients and a healthy control group are subjected to various noises. They are guessing that noises heard on the injured side of patients – reportedly are distorted and painful – will generate wave forms in the brain different to those generated by the auditory system on the healthy side.Drummond and Finch expect they will be disentangling Complex Regional Pain Syndrome for many years to come.
MAKING COMPLEX REGIONAL PAIN SYNDROME SIMPLE FOR A JURY
A start-to-finish strategy for proving the chronic pain and resultant damages of CRPS
When God was testing the faith of Job, the worst punishment was physical pain…. He lost his lands and property, his family – but it was not until physical pain was inflicted that Job broke. (Job 16:6).
A case dealing with chronic pain can be difficult to prove due to the subjective nature of pain itself. This is especially true for Complex Regional Pain Syndrome cases (“CRPS”). CRPS, formerly known as Reflex Sympathetic Distrophy Syndrome (“RSD”), is an incurable chronic pain condition that is often debilitating. For trial lawyers and their clients, this disorder is especially troubling because of the controversy surrounding its diagnosis and treatment. As its very name implies, the disorder is “complex” in nature, is routinely misdiagnosed, and as such, is difficult to explain and prove to a jury.
Take a recent case that had a mixed diagnosis: Some doctors thought it was CRPS, while some did not. In the end, what mattered was our client had severe pain that would likely afflict him for the rest of his life. This was something the jury understood, whether we called it CRPS or not. The primary purpose of this article is to explain the basics of CRPS, highlight some of the challenges in dealing with a CRPS case, and discuss some useful strategies from a recent trial.
CRPS – WHAT IS IT?
CRPS is a chronic pain condition most often affecting one of the limbs (arms, legs, hands, or feet), in which the pain is out of proportion to thc injury. There are two designations of CRPS: Type I and II. Typc I, which this article will focus on, is a result of trauma. Type II stems from a specific injury to a nerve.
Some researchers have said CRPS is potentially the worst chronic pain disorder a human being could endure. Doctors describe the severe cases of CRPS as being higher on the pain scale than childbirth and amputation. However, over the years, pain management practitioners were overzealous in diagnosing chronic pain patients with CRPS. In the early 1990s, “RSD” cases were popping up everywhere, perhaps in part due to the unclear diagnostic criteria at the time. Now, after the hype has calmed and thorough research has flushed out a more clear understanding of the disorder, CRPS cases can and should command the same attention as other severe injuries such as brain and spinal cord injuries.
To begin with, CRPS arises typically after an injury or trauma to the affected limb. For example, a seemingly simple fracture to the ankle eventually causing a severe pain disorder in that limb. The most frightening aspect of the disease is that it often initially begins in an arm or a leg and often spreads throughout the body. In fact, according to the National Institute of Health, 92 percent of patients state that they have experienced a spread, and 35 percent of patients report symptoms in their whole body.
CRPS is characterized by prolonged or excessive pain and mild or dramatic changes in skin color, temperature, and/or swelling in the affected area. These signs can be subtle in nature, or dramatic, depending on the severity of the CRPS.
CRPS symptoms vary in severity and duration. The key symptom is prolonged pain that may be constant and, in some people, extremely uncomfortable or severe. The pain may feel like a burning or “pins and needles” sensation, or as if someone is squeezing the affected limb. The pain may spread to include the entire arm or leg, even though the precipitating injury might have been only to a finger or toe. Pain can sometimes even travel to the opposite extremity. There is often increased sensitivity in the affected area, such that even light touch or contact is painful (called allodynia).
People with CRPS also experience constant or intermittent changes in temperature, skin color, and swelling of the affected limb. An affected arm or leg may feel warmer or cooler compared to the opposite limb. The skin on the affected limb may change color, becoming blotchy, blue, purple, pale, or red. As discussed in more detail below, due to the complexity of the disorder, CRPS cases are often overlooked, misdiagnosed, and not properly worked up.
VETTING A CRPS CASE
As trial lawyers, we appreciate that many of our clients do not have the type of medical treatment and insurance required to get a complete medical workup and diagnosis. Often, an injury like a brain bleed or spinal fracture might go misdiagnosed. With a disorder such as CRPS, this is truly one of the injuries that often require an attorney’s eye and attention to appreciate the client’s dilemma.
The following are a few points to consider when interviewing a client to determine if he or she potentially has CRPS:
• An injury causing pain which is out of proportion to injury,
• Changes in skin texture on the affected area; it may appear shiny and thin,
• Abnormal sweating pattern in the affected area or surrounding areas,
• Changes in nail and hair growth patterns,
• Stiffness in affected joints,
• Problems coordinating muscle movement, with decreased ability to move the affected body part, and,
• Abnormal movement in the affected limb (most often fixed abnormal posture, or tremors of the affected limb).
For a full CRPS potential case checklist, please contact the author.
Spencer Lucas is a trial lawyer at Panish Shea & Boyle and specializes in complex catastrophic personal injury, products liability and wrongful death cases. He has extensive experience in cases involving traumatic brain injuries, spinal cord injuries, and chronic pain.
Panish Shea & Boyle, LLP
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•Significant cortical thinning in the prefrontal cortex was observed in CRPS patients.
•Patients with CRPS made significantly more perseverative errors on the WCST.
•Patients with CRPS showed significantly longer stop-signal response time.
•The alterations may explain executive dysfunction and disinhibited pain perception.
Few studies have examined the involvement of specific sub-regions of the prefrontal cortex in complex regional pain syndrome (CRPS). We analyzed cortical thickness to identify morphological differences in local brain structures between patients with CRPS and healthy control subjects (HCs). Furthermore, we evaluated the correlation between cortical thickness and neurocognitive function. Cortical thickness was measured in 25 patients with CRPS and 25 HCs using the FreeSurfer method. Pain severity and psychiatric symptoms were assessed using the Short Form McGill Pain Questionnaire and the Beck Depression and Anxiety Inventories (BDI and BAI), respectively. Neurocognitive function was assessed via the Wisconsin Card Sorting Test (WCST) and the stop-signal task (SST). The right dorsolateral prefrontal cortex (DLPFC) and left ventromedial prefrontal cortex (VMPFC) were significantly thinner in CRPS patients than in HCs. CRPS patients made more perseveration errors on the WCST and had longer SST reaction times compared with HCs. Although BDI and BAI differ significantly between the groups, they were not correlated with cortical thickness. Our study suggests that the pathophysiology of CRPS may be related to reduced cortical thickness in the DLPFC and VMPFC. The structural alterations in DLPFC may explain executive dysfunction and disinhibited pain perception in CRPS.
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toward drug diversion. We know this isn’t the final answer. It allows an option for patients to
continue to be treated with opioid analgesics and removes many of the barriers involved in non abuse
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management and who is having difficulty receiving ongoing pain care.
We are aware of many individuals who are not receiving proper medication management or treatment
and others who had been receiving care that are now facing obstacles.
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