CRPS Patients Happy and Hopeful About Chicago Meeting

CRPS Patients Happy and Hopeful About Chicago Meeting

by Ed Coghlan

When several dozen physicians gather on October 22 in Chicago, it could be a major step toward standardizing care in the use of ketamine to treat CRPS.

RSDSA is sponsoring the meeting.

“Patients are quite desperate,” said Dr. Peter Moskovitz, a board certified orthopedic surgeon who is chair of the RSDSA. “This meeting in Chicago is important to create a real starting point in getting agreement on how to use ketamine to treat CRPS.”

Complex regional pain syndrome (CRPS) is a chronic pain condition most often affecting one of the limbs (arms, legs, hands, or feet), usually after an injury or trauma to that limb.  CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems.

For patient advocate and CRPS sufferer Gracie Bagosy Young–who will attend the meeting–there is hope and caution.

“Ketamine can be a very powerful tool in combating RSD/CRPS when it is administered in a professional setting by a properly trained Physician. As a chronically ill patient that has experienced IV Ketamine infusions that were extremely successful, and many that were less than successful, I know that there is a wide variation in protocols and ethics. That being said, I think it will be difficult to set a standard for everyone, as each patient is completely different than the next. I have to believe that if CRPS behaved the same in all of us, and responded the same to treatments, scientists would be able to find a cure for us!”

For another CRPS sufferer (and contributor to the National Pain Report), Katie O’Leary work toward standardizing how CRPS is treated is very important.

“As a patient with a severe case of CRPS, it terrifies me any time I travel outside of California if something happens to me, most hospitals and doctors will not know about my condition nor will they have the resources to treat it,” she said. “The Ketamine protocol at USC Keck hospital has changed the lives of many patients with neuropathic pain. It is a safely monitored program supervised by nurses and it has worked tremendously for so many.”

O’Leary who was injured playing sports in college has suffered from CRPS for several years.

“We need to standardize the use of Ketamine at more hospitals all over the country, and not just a few states. If we can spread awareness and share the current research with doctors everywhere – they can not only educate themselves on rare neuropathic disorders, but also offer new solutions or research. Fresh eyes always help when it comes to scientific research. More research means more hope for patients like me – who want to be able to travel home and be unafraid of the consequences. We need to share the benefits of ketamine treatments to more states, so that all the patients who suffer in silence – can finally be heard.”

For Jim Broatch, the long-time executive Vice President of RSDSA this opportunity is important and critical.

“We hope that our faculty and attendees can agree upon a protocol to treat CRPS. The next step is to find a funder to conduct a clinical trial,” Broatch told the National Pain Report. “Ketamine works but insurers too often have refused to pay for it because deem it an experimental therapy.”

Things may be changing because of the Chicago meeting.

Here’s a link to the conference.

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Authored by: Ed Coghlan

There are 12 comments for this article
  1. mhause at 11:57 am

    MY KAISER DR SAID STARTING NEXT MONTH HE IS CUTTING ME BACK 10% A month until he gets me to 90mgeq. I NOW TAKE 320 MG OF OXYCONTIN DAILY DUE TO DEGENERATIVE DISC DESEASE AND STENOSIS AND ARTHRITIS THEOUGHOUT MY SPINE. MY 1ST PAIN MGT DR TOOK A YR TO GET ME TO THIS LEVEL AND IT HAS WORKED FOR 7 YRS. IVE BEEN WITH KAISER FOR THE PAST 3 YRS AND THEY JUST CONTINUED WHAT MY PREVIOUS DR DID. KEEP IN MIND I HAVE DOCUMANTATION OF EVERYTHING AND I HAVE BEEN A STELLAR PATIENT. SINCE THE GUIDELINES ARE NOT LAW AND I WILL SUFFER GREATLY. IS THERE ANYTHING I CAN DO? KEEP IN MIND THAT KAISER IS THE INSURER AND MEDICAL PROVIDER. I AM CONFIDENT THEY ARE DOING THIS TO SAVE HUNDREDS OF MILLIONS OF DOLLARS USING THE GUIDELINES AS AN EXCUSE. I WAS BEDRIDDEN AND WILL BE AGAIN
    THIS SEEMS TO BE AN OBVIOUS CONFLICT OF INTEREST AND MAL PRACTICE.
    DO I HAVE ANY RECOURSE AT ALL OR DO I JUST LAYBACK AND DIE.
    THE PAIN IS THAT BAD!!. I WONT LIVE WITH IT AGAIN. I REFUSE TO.
    ANY GOOD ADVISE OUT THERE.

  2. K Hirte at 10:08 pm

    I have a right arm problem due to compression of the subclavian artery.
    Once, long ago, I was prescribed enough opiods to manage chronic nerve death, along with chronically/failed/nerve regeneration-pain.
    Both being unchartable pain, going around the clock.
    I am suffering badly. I live 25 minutes from the Loop. (Downtown Chicago) I live about 50 yards into Indiana due to low finances and now, my loss of a moderate 401k fund. I was left alone 13 years, keeping my elder in-home and after 7 years she had to be placed in nursing care. I had to be present to my minimal ability..4 days a week, four-five hours, to oversee her care, in typically horrific Medicare facilities. The first one finally was shut down.
    I put my inheritance and a vacated brothet’s share of that money, in a trust for her.
    And in my over stressed caretaker status, wild pain increased horrifically. I found no GOVERMENT HELP, for 2 Americans, both from hard working, blue collar origins. There eas a five year wait list for any help for her or me. This is how tax payers home iwners, managing until near the end, are managed.
    I began, totally mindlessly, just using my 401k funds for state demands placed against me. I did not have any thoughts except trying to convjnce the state she had care expenses and needed a good diet and comfort, and I had my costly gas fill ups -travel costs.. 60 miles a trip etc. $55 a tank then. Took a toll. She need lots more heat than I. In my draftty home. She had a small cancer spot on her lung. She was depressed. I can not stand long enough to cook. So we both ate organic foods. Expensive when bought in ptepated form. I have immune dysfunction issues that almost killed me. So we both ate safer foods. I had forgotten to point out her “fraudulent Lithetan Aid nising home insurance..was $500 a month. Yes I was completely washed out from home care and driving..and fetching food en route and sitting, noy reclining. I forgot and State emplyees ignored her $500 payments for a fraudulent policy. Again, to lost and just hanging on, to fight?
    Now, no medication? Seriously AMA is this ethical? Part of the hippocratic oath?
    No doctors can screen for the most exteme levels of pain.. and take on patients after checking opiate use on record. Why not?
    I am so run down, without pain relief.
    I cant find the strength to search for proof of what 2 States demanded in cash from me, as POA..They just did not see all her insurance premiums.
    I was accused of using her funds unfairly. So untrue. She had nothing after her expenses. And I was lost – ptedictably.. physically in deep hell, mentally washed out and half there. and still am.
    I do know the deadline to demand/ask/ file intent /for the trust to fairly compensate my losses to 2 states for her care, and qualification for care IS GOING TO BE CUT OFC THIS WEEK OR NEXT.
    No thanks to the mran whirlpool I am going down down without minimal help now..from One Doctor somewhere who CAN stand up for a high level, highly documented human in the last corner before Section 8.. unfairly. I pay my bills. But I cant function without medical attention NOW.
    I am choking on anxiety constantly now.
    As I am almost past the window for filing a claim..as the bank and the trust attorney did not bother to assist at all after my continual pleas for help.. ////as a fully, permanently, physically and mentally disabled caretaker. Was clearly not equipped to manage the cost of being pressed down hard, with an elder I love, left alone.
    I cant focus, or find the demands from 2 states that placed demands on my remains of my last davings in the world. Demanded by threatening to “deny” my mothets Medicare nursing qualification. (Financially)
    Both my attorney and the bank got paid well for years,~ and to close the trust with my costs for managing my mother’s needs, and my losses.
    So I tell me why the lack of doctors, or help to find appropriate doctors, which is so critical right now, is not being addressed? Am I not human because I need medicine that helped me?
    Medicine that has somehow lost favor, with no documented, and no reasonable explanation ?
    Is it ok that I live with my hard earned mini pension, in my simple personal home?
    Can I be allowed to suffer less, and have some help soon?
    Before I loose $35,000 in eldercare expenses, when my greatly loved elder, was left behind, with only a disabled daughter- to take her home… Am I someone who is best left to find her way to Section 8, after non- stop decades of great work, before the deadly wreck ..
    I never had to fight, until now, to not be dependant on minimal living from goverment funded housing? I just kept going. Bjt now, the AMA has turned away. Left some to die.
    All because I cant have my usual medication, because its suddenly, judged, by a figurehead in the FDA..who decided, recklessly, that I dont have to use basic, tried and true medication that has kept me alive and reasonably functional for decades?
    No, its not a cure. It cant remove ALL of the pain. But it kept me intact, with basic dignity. Not left hurting horribly in a hell all day, or possibly in a nighmare nursing facility. Why?
    Where do people like me belong, if not in our owned homes?
    I will have to give up my 95 year old home and rent 2 rooms in Illinois. Because..I have a referral for a REAL pain doctor in the North Suburbs of Chicago. Does not have a license for Indiana residents. I stand to loose a lot of equity as I have a lot of home neglect. Eas hoping to fix with my portion of that trust reimbursment from mom’s demands from state accountants with poor skills.
    I cant fix or clean/paint or pack up to move from my neglected home.
    So.. I will loose any equity, plus my doen payment. Because showing a mess to buyers will never bring the value it has.
    My AMA. I need a doctor NOW.
    I am glad you keep posting studies on non opiates. But many people have tried to play along with new ideas. Some patients dont nerd opoiates. All fine and good. Others are left to rot. Find yheir own way.
    I need a doctor and I need one immediately.
    I dont SEE why I cant be referred to any doctor anywhere. my last doctor was too late on the one referral he offered and then left the area. I have had only 2 practices that prescribed my medications in 25 years. Never any problems or abuse. I moved 75 miles from the first one. And he eventually became director of Hospice in South Bend Indiana, then Nashville and now Tampa.
    What are doctors doing to help patiens being dumped by doctors?
    Are patients with the worst, highesy levels of pain supposed to find a needlr in a haystack, on their own?
    I am at the rnd of my rope. To loose my meager housing..to live even smaller is beyond wrong. I was managing my lige reasonably, except when my mother also eas denied minimal physical help in my home. I am not going to let my pain causr my total loss of minimal walking and use of arms.
    Is squalor my next move..on my own? No advice or assistance to avoid acceletayed dererioation due to crippling pain?
    I had a surgery with a top cardio vadcular surgeon at Northwestern. Ranked #1 by peers in Chicago. With no improvement. Horrifically painful aftermath. Wrong approach used, promises broken. Maverick student of the textbook author and not found in time..-surgeon. Then wedged into The Rehab Institute of Chicago since upper cervical spine involved. Surgery was for hi risk, rare, cervical RIB resrction. Thru btachial llexus. Tip under clavicule.
    I hope doctors simewhere, think they maybe should HELP defend patients who DO need opiates for minimal quality of life, should not be thrown from ALL reasonable care. And who do nlt enjoy or abuse opiates. But survive with minimal relief without causing one problem for docyots who are willing to care for them.
    Otherwise nursing homes that are 100% neglect and worse are our fates.

  3. David Blumenthal at 11:06 am

    Kathy
    What state do you live? Maybe I can help. Send an email address, pleaee
    David B
    father to RSD sufferer(survivor)
    dblument001@me.com

  4. Donna Rubinetti at 10:37 am

    Has anyone with CRPS been urged to take LOW DOSE NALTREXONE by their practitioners? It’s been touted as a wonder drug for CRPS patients. Of course you CANNOT have ANY opioids in your system as it is an opiod antagonist. I would like to know your opinions. Thanks.

  5. Deb Barnard at 5:56 pm

    Instead of Ketamine, folks should be talking about how to make Calmare, aka Scrambler Therapy, more accessible and affordable to those suffering with CRPS! Calmare is noninvasive, does not involve drugs and is very effective in either eliminating or significantly reducing the horrendous, chronic, neuropathic pain associated with CRPS! It treats the chronic, neuropathic pain associated with many other conditions as well!

    Training and certification standards already exist and treatment allows for the unique needs of the individual. Calmare is FDA cleared and has been proven effective through scientific research, trials and patient testimonials. The Calmare device uses a multi-processor able to treat pain areas by applying surface electrodes to the skin. The device creates and sends a no-pain signal which through the brain’s plasticity and treatment repetition, becomes the signal accepted by the brain, overriding the pain signal and providing relief for the patient.

    Calmare reduced my 9/10 CRPS pain by 60%, which in turn resulted in a clearer mind, reduced narcotic use and the opportunity to learn new skills to manage my remaining pain. Although, like other treatments, Calmare does not work for everyone, thousands of people have been helped by this technology! Why aren’t leaders within the CRPS community pushing to make this noninvasive treatment available to those who are suffering?

  6. Kathy at 11:53 am

    I had ketamine nasal spray, it was a compound that helped me for a couple of hours with one squirt. The cost was $35.00. Although I needed it more often, the cost wold still be reasonable. Unfortunately, I live in a different state and my local doctors don’t have a clue how to help me, nor would they refill the nasal spray that was compounded in my state.

  7. Diane Smith at 11:27 am

    It is the only thing that works for me. After trying many many meds that messed with my brain and so many terrible side effects for 6 years. I will stay with ketamine!!

  8. Jayne Perkins at 9:51 am

    It is essential to get Ketamine approved. It is the only thing that retrains the brain, but obstacles are limited Drs who administer and affordability. We have the expense of travel in order to receive it.

  9. william weber at 7:44 am

    A major step toward standardizing care in the use of ketamine to treat CRPS.?? I thought that all CRPS patients respond differently?

  10. scott michaels at 7:09 am

    ketamine really. the sister drug to pcp. horse tranquilizer. NO THAnK YOU..! ILL KEEP MY OXYCONTIN.
    People are going nurz. ive seen people on this stuff. its friggin deadly. My pain meds work fine. i dont want to get completely wasted on ketamine or weed

  11. Matthew J. Smith at 4:15 am

    Let’s hope this gets applied to Arachnoiditis Patients as well, as they have had success with this treatment, but there are SO FEW Doctors who are doing it, and they are too far away from many of us !!

  12. connie at 3:15 am

    When will it be realized that people are individual and often do not respond to the same treatments? If a person is under treatment for a physical issue and doesn’t respond to the “normal” treatment why not carry a flash drive outlining the treatment they use and have medical providers use it to continue your individual treatment? If it meant getting proper treatment I would be more than happy to carry one!