My journey is very similar to other folks with CRPS. My options, however, may be more limited than many due to drug sensitivities. Ketamine is out of the question because I am allergic to it. I have grown weary of the tired advice that my pain needs to be better managed by drugs. I made the decision early on to heed the warning of research regarding Narcotics only increasing neuropathic pain long term.

Having had my share of frustration regarding what the medical profession has to offer me, most of what has helped me I have discovered from exhaustive research. I am fortunate that my treatment team has been open to trying whatever I bring to the table.

Since I decided early on that my thrust was going to be treating the cause of my pain as opposed to treating the symptoms I targeted anything that would address CRPS and brain plasticity.

Success with Graded Motor Imagery and Mirror Therapy, led me to Transcranial Magnetic Stimulation. I was turned down at three locations because I did not have clinical depression. When I discovered a t.D.C.S. Clinical Trial at Beth Israel in NYC I applied but was rejected. I appealed to the lead researcher and was treated as an outpatient last January.

While receiving the treatment I asked non-stopped questions of the lead researcher and physicians. I was struck with the simplicity of the treatment and commented that I believed that this treatment could be easily performed by patients in the comfort of their own homes, much like the operation of a TENS unit. That comment, like many of my comments to members of the medical profession, was not well received.

Since I had such a positive response to the treatment I decided I would attempt to convince my PM doctor to become trained and to offer the treatments. Although he initially agreed and I prepared an extensive stack of related research, prepared a detailed list of equipment needed with the most cost effective place to purchase the equipment as well as located resources for his training, after seven month of waiting it has not happened.

I wanted an additional series of treatments but could not afford the cost of putting myself up in NYC and shelling out $1,000 for the one week treatment. Fast forward to today. I took all that I learned, purchased the device and I am on my second week of treating myself. I am having a remarkable response.

Transcranial Direct Current Stimulation uses weak electrical current to affect brain plasticity by modulating the excitability of neurons. Think of it as recharging a car battery with jumper cables. The current is delivered by two saline soaked sponges applied to the scalp. The anode (+) stimulates the area under the electrode and the area under the cathode(-) is inhibited.

This procedure is quite safe and has minimal side effects, one cannot build up a tolerance to it, and it can be repeated indefinitely. It is effective for treatment-resistant chronic pain-everything from Fibromyalgia, Migraines, MS, to Tinnitus to depression and memory problems.

My first series of treatments last January ended my gastroparesis symptoms and they have not returned. All of the other gains I made in symptom reduction eventually wore off, similar to the way symptoms return with Ketamine infusions.

In only one week of treating myself for twenty minutes twice a day my tinnitus has vanished, my teeth clenching due to pain is reduced, my posture is improving, my right hand is no longer clenched. I am no longer sleeping with a bungee cord attached to my wrist and the bottom of my bed to keep my arm from curling up for eight hours at a time. I am able to wear a top for up to an hour and a half. (That's right-I can't wear anything on my upper body for any extended period of time- which means I am confined to one room of the house with a space heater, only half clothed) My range of motion is improving. Yesterday I unloaded the dishwasher for the first time in three years! Typically my body is covered in bruises because of falls. Although I have bruises on my abdomen and legs from a fall prior to beginning treatment about a week ago I have not fallen since I began treatment. By evening I am usually wiped and feeling irritable so I excuse myself and take an epson salts bath. For the past three evenings my husband has enjoyed my company so much that he insists I still take the bath but he comes in the room with me.

Two days ago was a most dreary raining and gray day. I looked out the kitchen door and noticed the poison ivy vine curling its way up the downspout. It had been a constant source of aggravation because I could not pull or dig it up. Suddenly is was a gorgeous orange and gold work of art. When I looked past it down the street I noticed the red and gold trees against the gray sky. The were absolutely beautiful. I had not noticed one single color of fall.

This is called not being able to see the trees for the pain.

My response has been truly remarkable and each day I see improvements. My plan is to continue treating until I see no additional improvements. I will then either wait until the treatment wears off or experiment with a booster treatment schedule.

The equipment consists of an Iontophoresis device used by physical therapists to deliver medication by way of direct current through the skin to the underlying tissues. The unit is powered by a 9 volt battery.

Additional supplies include sponge electrodes soaked in saline solution and wires (the kind used with a TENS unit)

I commented to my physical therapist last week that had she used the Iontparesis device on my brain, rather than on my shoulder when she first began treating my pain I would have probably gone into remission. She was less than pleased with my comment and stated that she would be recording in my chart that she did not condone my current use of the device. When I asked her if she had seen this kind of progress from any of her treatments in the last three years she admitted that she had not.

Oh well, onward and upward. I am either dragging the medical profession behind me or leaving them behind.

I would encourage any newly diagnosed CRPS folks to try this treatment for possible remission. There are many different protocols to try if pain relief does not happen on the first try.

I am an "old and cold" CRPS patient. Given the severity of my pain and other symptoms and the positive response I continue to have I would encourage others to consider this treatment.

Consider the costs and risks of a gold standard CRPS treatment, Ketamine infusions and the boosters that will be needed for life. A recent post detailed a total cost of $15,000 for a visit to Kirkpatrick for a round of Ketamine infusions.

I estimate my lifetime cost of treatment with tCDS to be at most $1,500.

Why has my pain management doctor not yet offered this treatment?????? I don't know. Food for thought-consider that pm docs generate most of their revenue from procedures, many of which are invasive, risky, or potentially dangerous to CRPS patients.

Hope this information is helpful!!!!!!

Dear Teri -

This is very exciting! And I am thrilled by your results.

I imagine the reticence of your doctors and physical therapist may have a lot to do with any potential risk in using a medical device for an off-label fashion, on the brain itself.

Quickly looking under PubMed, I was struck by the fact that a search of “Transcranial direct current stimulation CRPS” turned up no hits whatsoever, while a search of ” Transcranial direct current stimulation pain” was considerably more productive, with a total of 62 articles. And as to the reticence of the medical community to go off-label with tDCS, that may be “explained” – as these things go – by Arul-Anandam AP, Colleen Loo C, Perminder Sachdev P, Transcranial direct current stimulation - what is the evidence for its efficacy and safety? F1000 Med Rep. 2009; 1: 58, online text @ http://www.ncbi.nlm.nih.gov/pmc/arti...000000058.pdf:

Implications for clinical practice
The experimental findings described suggest that tDCS may emerge as a non-invasive therapeutic modality in the future, particularly for MDD, though there is a need for further replication in clinical trials, and clarification of the subgroup of patients most likely to benefit, before it can be recommended for clinical use. With a stronger evidence base, tDCS may present an attractive addition or alternative to available treatments for depression, particularly given its comparatively mild side-effect profile. For example, it may have a role in the treatment of patients unable to tolerate the side effects of antidepressant medications, and possibly in medication-refractory depression, if subsequent trials show efficacy in this subgroup. Moreover, tDCS has several advantages over other non-invasive forms of brain stimulation, such as transcranial magnetic stimulation: it is less expensive, less cumbersome and, therefore, more mobile, and may have longer lasting effects [31]. tDCS could thus be relatively easily implemented in a clinical setting. The evidence base is currently small, however, and more studies are needed before it can be recommended for general clinical application. In particular, a large multi-centric clinical trial is warranted to establish its efficacy and clinical utility. It is also too early to say whether optimal stimulation parameters have been discovered, and further work is necessary to establish this. [Emphasis added.]

Note
31. Fregni F, Freedman S, Pascual-Leone A: Recent advances in the treatment of chronic pain with non-invasive brain stimulation techniques. Lancet Neurol 2007, 6:188-91.

But at least the abstract to the paper by Fregni, Freedman and Pascual-Leone, who are among the top neuroscientists in the world, ends on what for many pain patients is the same frustrating note:

Abstract
BACKGROUND: Brain stimulation is a technique that can guide brain plasticity and thus be suitable to treat chronic pain-a disorder that is associated with substantial reorganisation of CNS activity. In fact, the idea of using invasive and non-invasive brain stimulation for pain relief is not new. Studies from the 1950s investigated the use of this therapeutic method for the treatment of chronic pain. However, recent advancements in the techniques of non-invasive brain stimulation have enhanced their modulatory effects and thus become a new, attractive alternative for chronic pain treatment. RECENT DEVELOPMENTS: Recent studies with non-invasive brain stimulation--eg, repetitive transcranial magnetic stimulation (rTMS) and transcranial direct current stimulation (tDCS)--using new parameters of stimulation have shown encouraging results. These studies explored alternative sites of stimulation, such as the secondary somatosensory cortex (rather than primary motor cortex) for the treatment of chronic visceral pain and new parameters of stimulation, such as repeated sessions of tDCS with 2 mA for the treatment of chronic central pain. WHERE NEXT?: The investigation of non-invasive brain stimulation for therapeutic effects is in its at initial stages; but the preliminary data make us optimistic. Several questions still need to be addressed before any firm conclusion about this therapy is made. Other parameters of stimulation need to be further explored such as theta-burst stimulation and the combination of tDCS and rTMS. The duration of the therapeutic effects is another important issue to be considered, especially because the current devices for brain stimulation do not allow patients to receive this therapy in their homes; therefore, maintenance therapy regimens, as well as the development of portable stimulators, need to be investigated. Further trials must determine the optimum parameters of stimulation. After that, confirmatory, larger studies are mandatory. [Emphasis added.]

PMID: 17239806 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/17239806

Accord, Rosen AC, Ramkumar M, Nguyen T, Hoeft F, Noninvasive transcranial brain stimulation and pain, Curr Pain Headache Rep. 2009 Feb;13(1):12-7, online text at http://www.ncbi.nlm.nih.gov/pmc/arti...ihms110681.pdf; O'Connell NE, Wand BM, Marston L, Spencer S, Desouza LH, Non-invasive brain stimulation techniques for chronic pain. A report of a Cochrane systematic review and meta-analysis, Eur J Phys Rehabil Med. 2011 Jun;47(2):309-26 at 324, (noting need in future studies for participant blinding when tDCS doses exceed 1 mA) online text @ http://www.minervamedica.it/en/freed...3Y2011N02A0309

Essentially, this may be yet another case of coming down to having the money to do the requisite studies. And unless a pharmaceutical company or an equipment manufacturer is willing to shell out millions of dollars for a “large multi-centric clinical . . . to establish . . . efficacy and clinical utility,” which may not be likely with your estimate of lifetime per patient revenues of only $1,500 – compared for instance to what a manufacturer clears for the sale of an SCS unit – we can’t except the private sector to foot the bill. Nor, in this age of incessant fiscal restraints, are we likely to see much assistance from the NIH, where chronic pain has never been one of its priorities.

That said, I came across one more (very recent) free article that makes for an encouraging read. Check out out:

Ross LA, McCoy D, Coslett HB, Olson IR, Wolk DA, Improved proper name recall in aging after electrical stimulation of the anterior temporal lobes, Front Aging Neurosci. 2011;3:16, Epub 2011 Oct 12, online text @ http://www.ncbi.nlm.nih.gov/pmc/arti...i-03-00016.pdf

Abstract
Evidence from neuroimaging and neuropsychology suggests that portions of the anterior temporal lobes (ATLs) play a critical role in proper name retrieval. We previously found that anodal transcranial direct current stimulation (tDCS) to the ATLs improved retrieval of proper names in young adults (Ross et al., 2010). Here we extend that finding to older adults who tend to experience greater proper-naming deficits than young adults. The task was to look at pictures of famous faces or landmarks and verbally recall the associated proper name. Our results show a numerical improvement in face naming after left or right ATL stimulation, but a statistically significant effect only after left-lateralized stimulation. The magnitude of the enhancing effect was similar in older and younger adults but the lateralization of the effect differed depending on age. The implications of these findings for the use of tDCS as tool for rehabilitation of age-related loss of name recall are discussed. [Emphasis added.]

PMID: 22016735 [PubMed] PMCID: PMC3191456

http://www.ncbi.nlm.nih.gov/pubmed/22016735

You bring us all hope.

Mike

Dear Teri

I am i tears of JOY for you sugar! this is amazing for us all! I have my case worker at my insurance company seeing if it is covered for a rental.
I will email him your comments too so he can see your results and i will take a copy of it to my new drs office appt tomorrow with my new primary care doctor.
continued great success wishes to you!

Very exciting. Can you give details on where you purchased the unit and what you do for your treatment?

Liz

The first thing you need to do is determine the most effective protocol for you pain (The placement of the electrodes). The protocols can be easily found. I started by doing a Pub Med search of Transcranial Deep Current Stimulation/upper limb CRPS. Some of the studies were readily available and others I obtained. You may purchase articles of interest or find someone who is either a staff member or student at a large university that has a medical school. The protocols are contained in the methodology section of the articles. You may also do a search of just protocols.

The equipment used for my original treatment at Beth Israel in NYC was an Ionto Phoresis unit by Iomed. By the time I decided to treat myself this particular unit had been discontinued. The unit I use now is advertised as the replacement unit for the Iomed model. The device is a Trivarion Activa Dose Phoresor. The wires needed are standard TENS unit wires. The electrodes are square sponge electrodes, which must be soaked in Saline solution. They are held in place with ace bandages.

I have used two different protocols. Both were helpful, but the current one has been more helpful. When I first underwent treatment is was a series of five day treatments each lasting twenty minutes. I currently treat twice a day for twenty minutes. When I am seeing no additional benefit I will stop treatment.

Please keep in mind that this is not a cure. Benefits eventually wear off but then the treatment is repeated.

Hope this info is helpful!

http://www.tmscenterofnewyork.com/

What about transcranial magnetic stimulation Can that help for neuorpic pain? I see the website above markets it as treating depression and alot of insurance companies accept it.

Yes, it can relieve neuropathic pain. My health insurance would only cover it for clinical depression. I could find no one who would treat me even out of pocket because I do not have clinical depression. Additionally transcranial magnetic stimulation has more side effects.

Hey Hampster,

Great news about your upcoming appointment for tDCS consultation. Here is the post by Ballerina that I followed when doing my own research. Like I said, it is a time consuming process and is not for everyone. It is a good skill to acquire though because it can aide in investigating other treatments too.

I have found no evidence that tDCS is a cure but I wonder if remission is possible with continued use. I only continue to make progress. A friend of mine recently pointed out that I am not yet back to where I was when I had the spinal cord stimultor implanted, which made so much worse that I received SSDI on the first try. I am just so happy that I am now out of the wheelchair, off the walker and now on a cane all of the time. I absolutely know that I will get off the cane.

I was working when I had the SCS implanted. My goal now is to return to work. I hope for similar results for you and your friend!!!!!!!!!

My physical therapist is finally warming up to my tDCS home treatments. She recently commented that she guessed "it would be OK for me to use the device because I "have a doctorate, after all, it's not like you are a bricklayer." In total astonishment I asked her if she felt comfortable providing a bricklayer with a TENS unit to use at home. She replied, "Of course I would." When I asked her to define for me how the technology of tDCS is substantially different from that of a TENS unit she was stumped. Finally she stated that TENS units are not experimental and tDCS is. I then suggested that perhaps she should let Blue Cross/Blue shield know that because even though TENS units have been around for 40 years, I was required to purchase my TENS unit out of pocket because it was considered to be experimental. I reminded her of her skepticism when I suggested that graded motor imagery and mirror therapy might help me. Now she uses both of these treatment modalities with other patients.

Maybe she should be paying me.

Please do not be intimidated by this treatment. It is not rocket science. I am still seeing improvements each day. Probably the best thing about my treatment is the decrease in the numerous sensations that can make us nuts, i.e. dizziness, tingling, freezing cold one minute and sweating the next, joint aches and pains, headaches, weird vision issues, a general overwhelming feeling of overall feelings of being unwell, extreme reaction to minor aches and pains like bumps, paper cuts, burning, stiffness, reactions to loud noises and vibrations, and sensitivity to touch and temperature changes. This treatment will not cure me but it is making it easier to manage the degree to which I suffer.

I hope my journey can help others.

Wishing everyone a Happy Thanksgiving!

Hello Ballerina...

I'm so happy and proud of you...for your spirit and will to dig and never give up...RSD has a way of dropping us to or knees without much energy left to fight... It is so nice to having refreshing news... I support you and I appreciate all that you have to share!!!

Have a really wonderful Thanksgiving to you and all of our friends here!!!

Hugs, Kathy