Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 02-06-2012, 04:21 AM #1
iguanabill iguanabill is offline
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Dear Bill -

Thank you for taking the time to write your most recent and considerably detailed post.

...

I can only hope the tDCS becomes an easier sell.
We resumed tDCS several days ago (the motor cortex/secondary somatosensory cortex stimulation that ballerina kindly described), but things were so bad today that we dropped the evening treatment. Not sure whether we'll resume. I'm becoming convinced that she's not going to respond to this modality.

Ballerina--how is your treatment coming along?
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Old 02-06-2012, 06:49 AM #2
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We resumed tDCS several days ago (the motor cortex/secondary somatosensory cortex stimulation that ballerina kindly described), but things were so bad today that we dropped the evening treatment. Not sure whether we'll resume. I'm becoming convinced that she's not going to respond to this modality.

Ballerina--how is your treatment coming along?
I am so sorry your wife has not improved but I wouldn't abandon the treatment yet. Please consider a consultation with Dr. Jim Fugedy in Atlanta.
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Old 02-06-2012, 05:39 PM #3
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Iguanabill,

Sorry for my short reply earlier today but I had to leave to drive my daughter to the airport. (something I would have been unable to do prior to tDCS.)

May I ask what occurred that made things go south. I ask only because on several occasions I felt real miserable after treatment, but when I kept at it I reasoned that my symptoms were probably the result of a bad day, and not the tDCS. The reason I initially pushed on with treatments was because I found no reference in the literature that tDCS increases pain.

To answer your question about my treatment I continue to make slow but steady progress. Although the drive to the airport is not long, in the past the vibrations and bumps would have ignited a flare. Although I was very ready to get out of the vehicle upon arrival at the airport and upon arrival home, was very tired and my pain level was increased, I bounced back after a rest. I was able to wear a thin shirt for the duration of the trip which is pretty remarkable given the fact that this time last year I was spending most of the day in one room with a space heater.

I am happy to report that the dystonia is still absent from my hand and my hand is no longer turning purple, (although it is still cold and weak) I still have absolutely no full body joint pain.

It is too soon to tell with reasonable certainty, but the small area of sensitivity on my left shoulder has improved today. Time will tell if the new tDCS protocol is responsible but my hunch is that it is.

I am hoping the change in protocol will address the pain and extreme sensitivity in my neck and right pec area. (my plan is to use the current protocol for at least two weeks.)

I am not missing the side effects of the drugs I no longer take. My cat can now get into my lap. He has learned to slowly and gently walk onto my lap rather than jump.

My service dog no longer attempts to lick my left hand and arm. Prior to she was constantly trying to lick my limb. I have no swelling of my right limb.

Each day I wake up filled with gratitude that I have improved so much. I admit, however, to becoming greedy-I want remission. That is what I am working for now.

I hoped with all my heart that your wife would find relief with tDCS. Maybe you could resume after she has taken a break. I wonder what would happen If you resumed treatment during a flare. Perhaps keeping a log her symptoms each day might be helpful. Just a thought.

Gentle hugs for your wife from me!!!!

P.S. I recently hugged my service dog for the first time! She was as amazed an I was. She rewarded me with profuse tail wagging and doggy groans!

Last edited by ballerina; 02-06-2012 at 08:58 PM.
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Old 02-07-2012, 07:41 AM #4
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Default Newly diagnosed with CRPS and tDCS treatments?

Since I am a responder to tDCS (which in itself is amazing since nothing else worked) I often wonder how the course of my illness would have been effected had I begun tDCS treatments immediately upon diagnosis. So far the clinical trials take patients with a duration of at least 18 months or patients who have more advanced symptoms or who have had CRPS for years.

If anyone is out there whose diagnosis is within three months of initial trauma please consider tDCS as a part of your aggressive treatment plan. tDCS addresses cortical reorganization which is the root cause of the illness.

Had I known what I know now I would have engaged in aggressive physical therapy, taken no narcotics, used my TENS unit, taken Trazadone for sleep and treated with tDCS.

Hope this helps someone!
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Old 02-08-2012, 01:00 AM #5
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ballerina, we've resumed tDCS, but just once a day for most of the past 4 days. Despite using excedrin, she's still getting headaches with the motor cortex/secondary somatosensory cortex position, though they are a little less severe. We might pick up the pace soon, hoping to see some benefit.

A week ago, my wife had a trial injection of bupivicaine (actually, four injections at each of the S1-S4 nerve roots) to see whether neurolysis would be beneficial. Unfortunately, she had limited benefit (pain went from 9 to 6 during the 4-hour window of relief), and the injections actually made her pain worse in terms of both extent and intensity. Neurolysis is now off the table.

I think we're headed toward ECT again, if she will follow through with it. Things are very rough right now.

Thank you for sharing your update. Wonderful news!!!
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Old 02-08-2012, 10:57 AM #6
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Quote:
Originally Posted by iguanabill View Post
We resumed tDCS several days ago (the motor cortex/secondary somatosensory cortex stimulation that ballerina kindly described), but things were so bad today that we dropped the evening treatment. Not sure whether we'll resume. I'm becoming convinced that she's not going to respond to this modality.

Ballerina--how is your treatment coming along?
Bill -

Sorry. Just saw this and the subsequent posts. Sorry to hear it's been so rough.

Mike
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