Please Help Free My Sis from RSD agony!

I HAVE to do this for my Sister, Cameron (pictured right), who suffers from RSD/CRPS (Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome) every day and has for almost 14 years.  She has always been there for me... She's my big sister.  I found out that she can receive ketamine infusion treatments if she pays for them herself (minimum $2500 per treatment).  She has raised two AMAZING boys, Gino and Anthony, by herself while living in HORRIFIC pain daily.  She NEEEDS these treatments!  They are her only hope to significantly reduce her pain or even make her pain FREE!

Cam's RSD "Journey"
Just under 14 years ago, Cam developed a steadily worsening burning pain and edema (swelling, redness) of her hand/wrist which quickly spread to the opposite hand/wrist area, and eventually involved both hands and arms completely, along with other painful symptoms.  Over the next year,  she was started on various medications, and she underwent a battery of tests and diagnostic procedures to help rule in or rule out various diseases and conditions.  In addition to these tests/diagnostic procedures, Cam underwent experimental procedures as well.  Doctors performed an intravenous regional sympathetic bretylium/lidocaine blockade where the forearm was tourniqueted for an extennnnded period of time to the point of absolutely excruciating pain and the medication injected into the wrist/hand below the tourniquet.  This procedure was absolutely torturous and had zero benefit with increased pain afterward.  Another experimental procedure included the doctor injecting a large volume of glucose/lidocaine solution into the wrist joint, which was like filling up a water balloon (but her hand and wrist instead of a balloon!) essentially causing severe inflammation on purpose!  in hopes the body would kick start its normal sympathetic response (fight-flight) and return to normal functioning. This procedure was yet again like torture and left Cam with an enormously swollen hand and wrist for days and in excruciating pain, and no positive change in her RSD symptoms.  
Cam then had a series of stellate ganglion blockades where a large very long needle was inserted in through the front of neck/throat and pushed alongside the trachea and esophagus all the way back to the sympathetic nerve bundle next to the vertebra and the nerve block medication injected.  Cam had this procedure repeated twice weekly (one per side) for several months.  Her response to these procedures would ultimately provide enough information for a definitive diagnosis.  In approx 2001, Cam had major neurosurgery and had a spinal cord stimulator implanted on her cervical spine for pain management.  At the time, the spinal cord stimulator provided enough relief that she was able to significantly reduce her medication.  Within the first couple months though, one of the spinal cord stimulator wires fractured, which changed how the stimulator functioned, draining the generator much faster than normal, and caused the stimulator's generator to die within six months, as opposed to the usual 5-7 yrs!  Cam then had to undergo neurosurgery every six months to replace the generator so she could continue to have the benefit of the spinal cord stimulator for pain management.  

Over time the RSD progressed with increasing pain, new symptoms and spread of the disease.  Cam developed some tolerance to the spinal cord stimulator's effectiveness, which is not uncommon, and her pain continued to increase, new meds were added to help with pain management.   About 3 years ago, after years of twice-per-year surgeries, she finally received implant of the longer-life rechargeable generator which really DOES last 5-9 yrs before needing replacement although she must spend hours and hours every day charging this generator as even the new rechargeable one drains very quickly due to the prior wire/lead break.   

In June of 2008, Cam and one of her sons were in a car accident, another car ran a red light and slammed full speed into their car while they were turning.  Cam's son was uninjured thankfully.  Cam's leg slammed into the dash and she eventually was found to have suffered an ACL tear.  Within a very short time, the RSD had spread to the knee and now she has full RSD in that knee as well. Because of the RSD, no ortho surgeon will repair the ACL tear so she is forced to live with that pain, instability and limitation, along with the RSD that spread to that area.  

Through all of this, the ûps and downs of the disease and the various treatments, and living with extreme pain 24/7, she has stayed positive and hopeful that some day a cure would be found or a treatment that would help return her life to something close to normal.  Ketamine infusion therapy is providing those results!!

WHAT IS RSD/CRPS?
There is NO cure for RSD.  Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), is a chronic,  progressive, neurological syndrome characterized by, but not limited to:
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  • severe burning pain; cramping, stabbing etc
  • pathological changes in bone and skin
  • resulting muscle atrophy
  • excessive sweating
  • tissue swelling and edema
  • extreme sensitivity to touch (extreme pain even with light touch, even something as simple as a soft bed sheet touching the skin of the affected areas).
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CRP/RSD is ranked as THE most painful form of chronic pain today, it's pain described as much worse than that of childbirth.   Even light touch can feel excruciating to an RSD patient.  Something as simple as a needle stick can cause spread of the disease.  Pain flares can result from many things, temperature extremes, increased activity, stress, or for no reason at all.   RSD can spread at any time, and can spread to the entire body with or without provocation.  

RSD wreaks havoc on the body and even things as simple as showering, sleeping, sitting, laying under a blanket, and many other things are extremely painful and impossible to do if you have RSD.  We are in desperate need of more research, education of the medical community and the public, as well as more treatments readily available and hopefully SOME DAY A CURE!!  Even though RSD is the most painful disease out there that causes so many to suffer in silence, so little is known about it.  The medical community does NOT teach much about it, and the public doesn't really even know about it even though it has been afflicting patients and known about for over 140 years.  

 This is just a small window into life with RSD.  Over time, patients with RSD have been found to have actual physical changes in their brains also.  Chronic pain like this causes so many other health problems; high blood pressure, muscle atrophy, depression, various side effects from medications, etc., to list just a few.   Please visit rsdsa.org to learn more about RSD/CRPS  and ketamine treatment for RSD/CRPS.

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Ketamine treatments have been proven over many years to significantly reduce or completely alleviate the pain from this disease in many many patients. Patients are reported to be immediately able to stop taking pain meds and the other various RSD meds, all with their own side effects.  Large percentage of patients experience complete remission on average for six months.   We are stilllll waiting for the FDA to approve this treatment for RSD, even though it has been and is being used as definitive treatment for RSD for many years by the leading university hospítals and pain specialist physicians and all over the world. It is still not covered by most insurance carriers, still after all these years considered 'experimental', and patients must pay out of pocket for this life changing treatment, with their own physician's referral required.  Most of these patients, like my sister, are permanently disabled and cannot afford the $2500 minimum per treatment cost.  Many patients have significant relief/remission after infusion for several months!

We need your help!!! Cam could be able to live a NORMAL LIFE for the first time in almost 14 years!!!!!  I miss MY SISTER!  She deserves this!!!  This is in conjunction with the petition that is ongoing and is currently being circulated (See link below).  We need this until insurance will cover it..  Please help!  Any donation in any amount will help make a difference and is greatly appreciated!  You may donate anonymously if you prefer as well.  Even if you cannot donate, you CAN help our effort greatly by sharing this page on your Facebook page and getting the word out.  Thank You !

#PainFreeForCam

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Cam's boyfriend, Mike, wrote this recently in regards to this potentially life changing treatment~
"This is not some bs FB survey, this is an active petition to urge the bloated bureaucracy that is the FDA to catch up with the rest of the world on a treatment that has been shown to be effective all over the world. I watch a person every day, try to balance between pain management and living her life. Consider once having to decide between a visit with friends or with family because both would be too much. Deciding between shopping or going out to eat because both are too much. Deciding between simple yard work or chores around the house because both would be too much. The simple thing taken for granted by us are instead major decisions for her and those suffering from this disease. Having to plan every task, every action, or activity based on how long it will take to regain control of pain levels. Knowing how much pain is coming and making the decision to "do it" anyway, and never letting those around her know how much she is suffering--you think you know, but you do not know. This treatment could give real and effective treatment for the first time for those that are chained to the anchor of debilitating pain. The ability to live a life without the knowledge that what they do will bring their pain level to a point of agony. Freedom from drugs that are partially effective but lower quality of life, freedom from implanted spinal stimulators that limit physical movement. Ketamine infusion therapy can help bring their pain to a level that a "normal" life can be a reality."

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The following links are available...(if link is inactive, copy&paste the URL into your browser)

Petition for FDA approval of ketamine treatment for RSD/CRPS-
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Please sign this petition to require education about CRPS/RSD in medical schools.  Too often, physicians in their quest to help their patients with ongoing unexplained pain after a trauma or surgery, will perform additional surgeries and immobilization, which causes rapid progression of this disease.  Pain specialists are well educated on CRPS/RSD but treatment of this disease must begin as soon as possible, which cannot occur if the general physician is not educated about the disease.  This is so important in the early diagnosis and treatment of CRPS/RSD, and can prevent a lifetime of suffering for patients.  
Please take a few seconds to make a difference!  Thank you!


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RSDSA Organization- info & resources re: RSD/CRPS
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RSD HOPE

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"The Spoon Theory" - an amazing article that portrays living daily with chronic pain of any kind.  A must read for anyone who cares about someone in chronic pain.  http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf

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Organizer

Sarah Elizabeth Cooper-Roth 
Organizer
Lathrop, CA
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