Spinal Cord Stimulators and CRPS / RSD

There is a big question as to whether a Spinal Cord Stimulator (SCS) is truly the great answer to CRPS / RSD pain that a lot of Pain Management doctors state that it is. 

There is literature and feedback on both sides of this debate.  Below is information on what a Spinal Cord Stimulator is supposed to do to help alleviate or decrease the pain for those that have CRPS or RSD. 



Unfortunately, what they don’t tell you is that there are also articles out there from Neurological Publications that the Neurosurgeons utilize that have shown studies where in some cases SCS have been known to cause the body to build up a layer of scar tissue around the leads or paddle of the SCS.  This same scar tissue then continue to grow around the Dura that protects the spinal cord, and if it is not caught it has been known to cause paralysis by putting pressure on the spinal cord.  Yes, you read that correctly!

Unfortunately, I have never heard of any doctors or representatives from the SCS companies ever mentioning this to their patients prior to having a Spinal Cord Stimulator implanted.  It is never mentioned with the possible risks. 

What is a Spinal Cord Stimulator?

When more conservative therapies have failed, the cost and risks of managing pain rise. Increasingly, many healthcare providers are employing a multi-modal approach to pain that includes spinal cord stimulation.

An implantable system delivers electrical pulses via a lead to nerves in the dorsal aspect of the spinal cord. Pain signals are inhibited before they reach the brain and replaced with a tingling sensation (parasthesia) that covers the specific areas where the pain was felt.

A spinal cord stimulation system consists of 2 implanted components:

·         Neurostimulator – Rechargeable or non-rechargeable implanted power source that generates electrical pulses according to programmable neurostimulation parameters and features

·         Lead – A set of thin wires with a protective coating and electrodes near the tip (percutaneous lead) or on a paddle (surgical lead). The electrodes transmit the electrical pulses to the stimulation site

Two external components to a spinal cord stimulation system allow the therapy to be customized for each patient:

·         Clinician Programmer – Used to program the implanted neurostimulator

·         Patient Programmer – Empowers patients by giving them a way to manage their pain relief – within preset physician parameters – to optimize outcomes

 

Other Information:

Prior to having the actual Spinal Cord Stimulator (SCS) implanted a patient will go through what they call a trial.  This entails having an external SCS set up with normally 2 leads that are surgically implanted at the correct level on the spine / vertebrae to reduce your pain.  The actual SCS itself is outside of your body and kept in a fanny pack that you have to wear, but it gives you an idea if this will work for you.

There have been some patients that have had a very successful trial where the SCS trial decreased their pain levels.  Only to have the real SCS that was implanted fail.

There are several manufacturers with this device, most of the time the patient does not have a say in what manufacture is going to be utilized.  The Pain Management doctor typically has their preference as to a specific vendor.  I highly suggest that anyone that is to the point of considering a Spinal Cord Stimulator to please do your homework.  Don't feel like you have to move forward with this just because your doctor has told your to or has suggested it.  There are other options out there to help decrease your pain, and once this has been done it is very difficult to un-do!

For additional information or if you would like to speak with me regarding Spinal Cord Stimulators please feel free to contact me at:  rsd.crpsforum@gmail.com.

You can also post responses to any blogs on our forum here.   

 

What is Complex Regional Pain Syndrome (CRPS)...

Complex Regional Pain Syndrome (CRPS),  also known as Reflex Sympathetic Dystrophy (RSD) or Causalgia, is a chronic systemic disease characterized by severe pain, swelling, and changes in the skin. CRPS typically is expected to worsen over time.^[1] The majority of the time it initially affects an arm or a leg and often spreads throughout the body; 92% of patients state that they have experienced a spread and 35% of patients report symptoms in their whole body.^[2] Recent evidence has led to the conclusion that Complex Regional Pain Syndrome is a multifactorial disorder with clinical features of neurogenic inflammation, nociceptive sensitisation (which causes extreme sensitivity or allodynia), vasomotor dysfunction, and maladaptive neuroplasticity, generated by an aberrant response to tissue injury.^[3] Traditional treatment is complicated, involving drugs, physical therapy, psychologic treatments and neuromodulation and usually unsatisfactory, especially if begun late.^[4] 
There are other treatments available outside of the United States that I will go into with you later. 

CRPS is associated with dysregulation of the central nervous system^[5] and autonomic nervous system resulting in multiple functional loss, impairment and disability. The International Association for the Study of Pain has proposed dividing CRPS into two types based on the presence of nerve lesion following the injury.

• Type I, formerly known as reflex sympathetic dystrophy (RSD), Sudeck's atrophy, reflex neurovascular dystrophy (RND), or algoneurodystrophy, does not have demonstrable nerve lesions. With the vast majority of patients diagnosed with CRPS being of this type, most of the literature thus refers to type I.
• Type II, formerly known as causalgia, has evidence of obvious nerve damage. Type II CRPS tends towards the more painful and difficult to control aspects of CRPS; type II scores 42 out of 50 on the McGill pain scale ^[6] (however there is seemingly little or no data pertaining to type I specifically here). In Type II the "cause" of the syndrome is the known or obvious nerve injury, although the cause of the mechanisms of CRPS Type II are as unknown as the mechanisms of Type I. In type II it seems less likely that pain from the site of the original obvious nerve trauma will spread to other areas of the body for no apparent reason, as in type I; however established type II sufferers may be more prone to developing new areas of type II CRPS. For instance, a person with an established type II area of pain (for clarity, say somewhere in the head or face) is likely more prone to develop a new area of type II with, for instance, a herniated disc causing sciatica and low back pain. Timely corrective surgery for such a scenario, as well as proper pain control during the whole episode, may well be the difference between adding a new area of severe perpetual pain for a type II causalgia patient, or limiting the suffering to the original area. One could imagine how pain control could become difficult for such a patient when a new source of bad pain is introduced into the mix, especially temporary, resolvable pain--when the patient is already on pain meds to deal with the original type II pain.

CRPS has the unfortunate honour of being described as being one of, if not the most painful long term condition, scoring 42 out of a possible 50 on the McGill pain scale, above such events as amputation and childbirth.^[7] Lack of social awareness has inspired patients to campaign for more widespread knowledge of CRPS^[8] and lack of clinical awareness has led to the creation of support groups seeking to self-educate with the latest research.^[9]

Evidence suggests that CRPS has both physical and psychological factors. CRPS is said to cause physiological problems (rather than physiological problems causing CRPS); whilst "research does not reveal support for specific personality or psychopathology predictors of the condition" there are psychosocial factors to CRPS (such as reduced quality of life and impaired occupational function) and psychological problems (which include increased depression and anxiety).^[10] Unsurprisingly, there is overwhelming evidence of limbic system involvement.^[11] Sadly this very poor quality of life for some has led to high rates of depression and suicide among sufferers, which has motivated appeals for greater understanding. The AFPS leaflet on CRPS and prevention of suicide is available online here.^[12]

Daily vitamin C has been shown to reduce the chance for the occurrence of CRPS after an injury, leading to calls for greater awareness, especially in the emergency room setting.^[13] In two placebo-controlled randomized clinical trials Zollinger et al. showed that patients who took 500 mg of vitamin C daily after a wrist fracture were less likely to incur the problem.^[14] The cause of CRPS is currently unknown. Precipitating factors include injury and surgery, although there are documented cases that have no demonstrable injury to the original site.

With the growing body of evidence persuasively indicating the progressive and systemic implications of chronic CRPS,^[15] there is concern that these patients may be erroneously also diagnosed with fibromyalgia. Fibromyalgia has a MPQ score of 35.7/50,^[16] whereas CRPS averages a 42/50 MPQ. Chronic CRPS patients would react to the pressure points of the brachial plexus, the intercostobrachial (ICB) nerve and concomitant L5-S1, injury.^[17] Similarly, when patients with multiple sclerosis were tested for CRPS, incidents of the disease was more than 50 times higher than in the average population.^[18] This has led to calls for research and more understanding of chronic CRPS symptoms which may include muscle twitching and tremors, wobbliness, falling and visionary disturbances.^[9]

As Complex Regional Pain syndrome is a systemic disease, any organ could potentially be affected.^[19] There are many internal complications which are frequently not acknowledged, "CRPS affects the systems of: cognition; constitutional, cardiac, and respiratory complications; systemic autonomic dysregulation; neurogenic edema; musculoskeletal, endo-crine and dermatological manifestations; as well as urological and gastrointestinal function".^[20

CRPS has many affects that can arise.  As the patient you need to take the lead in your treatment.  Don't be afraid to ask questions, if you don't understand an answer from a medical professional then ask them to explain it to you again, research your options and don't feel like you have to do exactly what has been suggested.  This is your body, your life and the road that you are having to go down.  Take the time to get educated on the condition, and know that you are not alone!

If you have specific questions or would like to communicate with me please feel free to either leave your comments on the blog or you can email me at:  rsd.crpsforum@gmail.com. 

Welcome to RSD-CRPSforum!

I am starting 'RSD-CRPSforum' for many reasons.  There is information out there on both RSD and CRPS, but not all of it is accurate.  Many people suffering from this disease or diagnosis, or even family member of those that have been diagnosed are desperately seeking current information. 

My goal is to provide you with as much information on this subject as possible.  Yes, I do know about CRPS first hand.  Thus, I can provide an abundance of information for those individuals, family members or loved ones that are seeking more knowledge.



RSD / CRPS is a life changing / altering diagnosis.  From the first day that you actually receive your  diagnosis to the day you are able to wrap your head around it - you are desperately seeking information...  You want to know that you're not alone, because the majority of people diagnosed have never heard of Complex Regional Pain Syndrome or Reflex Sympathic Dystrophy.



I would also like to have a safe place for individuals to feel free to voice information on their challenges, treatments, what has worked or not worked for them.  This is all information that can be helpful to others - information can be powerful.  This can seem like such a lonely diagnosis, but in reality it is estimated that there are over a million people in the United States alone that have been diagnosed with either RSD or CRPS!  This is not counting those in other countries...



Please encourage others people that you know to visit our forum and I will do my best to keep you updated with the most recent information on treatments from the United States and from other countries. 



There are options out there, but unfortunately the information is not getting out.



Welcome to the initial post on the RSD-CRPSforum blog!