Originally Posted by ballerina

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!!!!!!

Originally Posted by betsykk

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

Liz

Originally Posted by bent98

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.

Originally Posted by ballerina

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.