tDCS protocol video
 

hey everyone:

FYI:

in case you have not seen this -- this is a very well done video by some tDCS researchers who are trying to standardize the tDCS protocol.

http://www.jove.com/video/2744/elect...nt-stimulation


voner

So funny you would post this...I just came across the same video in the past hour and downloaded the PDF on their site to read through. Great minds I guess and all that. :)

The purpose of this video is not to standardize tDCS protocols. It is merely an example of one of the research protocols. Many folks with chronic pain have no response to this particular protocol.

I agree that the video itself doesn't seem like it is meant to standardize the protocols...but the researchers in it say that they would like to. Tha PDF download gives some more information about a couple of different protocols and the common benefits and limitations of each one.

I am so excited about trying this out. I ordered everything (hope I got all the different parts I need) yesterday. Honestly...my biggest concern is trying to figure out the best times of the day to do the treatments. Assuming I am allowed to return to work, my hours are pretty funky. Do you do the treatments at the same time every day or do you think it matters? I don't think my workplace would be a good place to do the treatment as it is extremely rare to ever get a break where you don't get pulled back out to the floor for something and I know you sort of need to sit still with the tDCS treatment.

But I'm getting ahead of myself I think. I haven't even started yet and already I am worrying about how to fit treatments in with my work schedule.

It would probably be ideal if you did not start tDCS the same time you are returning to work. Doing so may be akin to starting two new meds at one time. If you have to return to work next week it might be a good idea to adjust to work first to more or less get a baseline for you pain level during the workday and then begin tDCS so you can assess how the treatment is effecting you.

I agree that treatments at work may be precarious if you can't get a total of twenty minutes of quiet, uninterrupted time. Fitting the treatments in should not be a problem as long as you allow at least six hours in between treatments.

Another reason for adjusting to work first is to also establish how work is effecting your sleep. Beginning the job and tDCS may present a challenge if your sleep is disrupted and you are not sure what the culprit is. For me if I do tDCS after 5pm my sleep is disrupted, but others do not have this issue.

Just my random thoughts.

Best to you!!!

Thanks for the advice...I will definitely keep this in mind. I hadn't thought about that but it does make sense. Delaying the tDCS for a few weeks while I adjust work will not kill me. I have no doubt that my sleep habits will be wonky after I start back to work...though maybe I will be able to get more than 3-4 hours if it tires me out. It's just that it is not uncommon to work until 1am-2am in the morning when working the closing shift and then need to be back there at 6am to open up the next morning. But I am sure I will adjust. Thanks for the advice.

I still haven't heard back from work though...sigh...it seems they are going to continue to play games with me. Oh well...I will get that all sorted out soon enough one way or another.

Your Doctor sounds amazing
 

I just had to respond to your post after reading it. What a rare doctor you have! I mentioned tDCS to my Pain Specialist and this is what he said "Oh you should be careful about any treatment out there that is experimental. They'll just suck up a bunch of money and be ineffective plus most of them have little to no evidence to support their claims. I would not do it unless there has been a double blind study with CRPS patients." And I'm thinking to myself what medication have we tried that has had a double blind study with CRPS patients? And that was the end of the conversation. He had never heard of it, he didn't care to look into it or discuss it.

Anyways, it is great to hear that your doctor is on board! Please keep us posted on how the treatment goes once you start. I really hope it works!

I know...she's been so great. I almost had a heart attack back in November when I called on a Monday to schedule an appointment with her and the receptionist told me, "Wednesday is her last day...we can get you in tomorrow." It was one of those moments where I felt someone must be looking out for me because I just called on a whim because I had a few minutes to spare...I had planned on calling Wednesday. So I spent all day Monday completely stressed out...worried she was moving out of state or something. Thankfully...no...she was just moving to a different practice because the one she was in (while great) had just been bought by a large medical group that was going to impose a bunch of restrictions on the amount of time they could spend with patients and a lot of other stuff like that and she felt moving to an independent group would be better for her and her patients. She's very frank about stuff like that.

I am so so so lucky to have found her. She's a general practitioner, is not an RSD specialist, but I have gotten better care with her than any other doctor since I got RSD. My lawyer kept giving me a hard time (my RSD is the result of a work injury) insisting that I needed to get to a board certified pain management doctor (which work comp wasn't approving anyway...long complicated story) but this was at a point where my health was finally improving and I was finally getting better instead of getting worse and I just told him that I needed to do what was best for my health which was to continue treating with my current doctor. I told him that if work comp wanted me to see a pain management doctor then I would (assuming I didn't have to pay for it) but that I would not stop treating with my current doctor and mess up a treatment plan that was working. He may think I am crazy but I decided to put my health first and I am so very thankful I did.

It is a shame that your doctor responded with ignorance. I suspect that since he is a pain management doctor he recommends and or implants spinal cord stimulators for CRPS patients. If so why don,t you ask him if the devices he recommends/implants have met his same criteria. As to "sucking up a bunch of money" tDCS is the cheapest form of pain management I know of. Does he know the actual cost?

Did you ask your doctor about tDCS because you are interested in trying it? If so has his response discouraged you? If you have been discouraged by his comments you might supply him with some research, suggest he avail himself of the training offered by Harvard, ask him to consult with physicians knowledgable about tDCS, find a new doctor you don't have to educate, or save yourself time and money and try the treatment yourself.

Just some food for thought.

Hoping better days are ahead for you!

Good for you for putting your foot down!
 

It is great that you stuck to your guns about staying with a doctor who is working for you. I find it is sometimes hard b/c we get pushed around by doctors, lawyers, insurance companies and after all that it is sometimes hard to listen to our own intuition, wants and needs. I'm really glad that you were able to do that and that this doctor has been able to help you. I hope you have further success with the tDCS.

Hi Ballerina,
I know he does implant SCS, but he has never offered me one. I think b/c he knows in my file it states that I have already refused them from several other Pain Specialists. He does a lot of medications and believes in the functional restoration model to help people manage their pain.

If I can get some research together, I would like to bring some in to him to see if he would be interested in taking a look at it. I've looked at some articles on PubMed; the frustrating thing is that they only offer abstracts. I don't think that would get his attention. Also, he seemed to stress the double blind research paper approach. Do you know if there have been double blind studies done with tDCS for chronic pain? Also, you mentioned training by Harvard. What do you mean by that?

Thanks for your help! I hope you are hanging in there and doing well.

Tdcs should be right up your docs alley if he is committed to functional restoration!

Rather than wasting your time trying to educate your doctor how about having another one do it for you. You might put in a call to Jim Fugedy at the Transcranial Brain Stimulation clinic in Atlanta and ask if you could arrange for a long distance consultation between you, Dr. Fugedy and your pain doc. An alternative would be to schedule your own appointment with Dr. Fugedy and make your decision based on a physician who is knowledgeable with the treatment.

Just for fun why not ask your pain management doc why he requires double blinded studies for a non-invasive, low side effect treatment like tDCS but not for implantation of Spinal Cord Stimulators.

Harvard has physician training in tDCS if he is interested in learning so he doesn't continue to make misinformed comments to future patients.

The hardest part of my journey was not fining the correct treatments and avoiding dangerous ones, but learning how and when to leave a doctor behind who was impeding my potential improvement.

This is so true. It was a hard decision for me to make last year when I was getting bounced around by doctor after doctor...all of them telling me there was definitely SOMETHING seriously wrong with me but none willing or able to do anything about it. What finally spurred me in the rear was my family doctor who had literally been my doctor my entire life told me that I would probably have to spend the rest of my life in a wheelchair. That was the last straw and I wish I had not wasted so many months with him and the doctors he referred me to as they all proved to be a waste of time and money. No sense dwelling on the past though...I ended up with a wonderful doctor as my replacement and who knows if I would be where I am today if I had not switched when I did. All the trials of dealing with the bad doctors has made me stronger and more educated about how to deal with everything that I am going through. But there is always that fear...particularly when you hear the horror stories about people who cannot find good doctors that if you leave a GOOD doctor you will not find a GREAT doctor and then be in the same or worse position in the future.

Great point Catra.
I elevated dumping docs the to the level of fine art. I audition the new ones prior to dumping the old. I keep a current thorough file of every PT note, Doctor note, etc. so I don't have to have the new doc send for the records from the old doc. Once I identified a doc who was impeding my chances for remission, good, bad or somewhere in the middle, he/she was history.

CRPS? Just say no to spinal cord stimulators
 

I have recently joined the forum and hope to help others through my successes and failures with treatment for CRPS. I was diagnosed with CRPS in 2006 after run of the mill knee surgery, which began my CRPS trouble. After trying the usual treatments (blocks) and the more unusual treatments (HBOT) and the typical array of meds, my condition only worsened. My pain management doctor suggested a Boston Scientific Spinal Cord Stimulator. I was nervous but desperate for pain relief. I spent hours on the internet reading first hand descriptions of success stories. My trial was successful and although recovery from the actual implantation was grueling I was excited to get my life back. I had a good experience with the Boston Scientific rep, starting with my request to do my own programming, which hastened tweaking my stimulation. (I now know that self-programming has no relation to positive outcomes for SCS and CRPS patients. A patient receiving a spinal cord stimulator behind CRPS and self-programming is like a passenger being permitted to steer the Titanic behind the encounter with the iceberg.)

I was so sold on my experience that I became an outspoken advocate for SCS for other CRPS patients. Unfortunately, after about 20 months the stimulator just stopped working. A revision surgery caused a spread to my other leg and another revision resulted in a spread to my wrist shortly thereafter. When the doctor suggested implantation of another stimulator to address the wrist pain and try to get me out of the wheelchair that the failed SCS left me in I decided I’d had enough and it was time to do some real research.

I had the good fortune of being evaluated by a knowledgeable neurologist who I wish I had found prior to the SCS implantation. He explained what my own research had already uncovered.

Spinal Cord Stimulators (even the competitors of Boston Scientific like St. Jude) have long-term success with types of pain like Failed Back Syndrome. Relief for CRPS is at best limited to months or a few years. SCS for CRPS eventually increases and aggravates vasoconstriction and inflammation and further disrupts brain plasticity (the culprits of CRPS.) The eventual result of my spinal cord stimulator was rashes, sores, swelling and my alodynia was much worse than prior to implantation. Additionally, each revision surgery began a new area of CRPS pain as well as initiated the spread to my other leg and wrist. The neurologist explained this action to me in this way: The stimulator stimulated the pain fibers in my spinal canal, which spread the CRPS to other areas, like a freeway efficiently facilitates transporting vehicles to distant locations.

I told the neurologist that my pain management doctor said the spread had nothing to do with the SCS and that “CRPS spreads” and to prove his point he suggested I “ask the rep or call the company.” My neurologist found this laughable and stated, “Conversations like this demonstrate ignorance, greed or both.” Regarding the rep, I couldn’t have asked him questions if I wanted to because as soon as he found out I refused additional business for him he ignored me-yes totally acted like I was a stranger in the waiting room. When I approached him and asked to speak with him he claimed he was “busy” and would call me. Never happened.

My biggest regret is not that I failed to do my own research prior to implantation, or that I did not listen to my gut with the revisions, or even that I ignored the many warnings of other CRPS patients who had similar failures, or that I didn’t notice that the “success stories” were from people who had their stimulators for relatively short periods of time-months to a few years. My biggest regret is that I assertively encouraged other similarly desperate and naïve people with CRPS to have spinal cord stimulators implanted. Three of these people that I know of have had failures after initial good results, which, like me left them in much worse condition.

Since I can’t undo the damage I have caused others the only thing I can do is to share my experience and encourage others with CRPS to “just say no” to spinal cord stimulators, no matter how desperate you are for pain relief.

I was working when I was implanted. Now I am working my way out of a wheel chair and fighting spread, dystonia, skin infections, rashes, and alodynia that is far worse than prior to implantation.

My condition is now rapidly improving through the use of tDCS, which I learned about from this forum. How I wish I had tried this treatment prior to being debilitated by the spinal cord stimulator.

If you are considering a SCS the last place you should go to ask about risks is your pain management doctor (who stands to loose upwards of $40,000 if you decline, even more with revision surgeries), the company rep and testimonials of patients less than three years out from implantation.

I wonder where I would be today if the fork in the path had led me to tDCS rather than to a spinal cord stimulator?

It is better if I don’t really think about that too much but I hope others who still have a chance to protect themselves will.

continued improvements with tDCS
 

I am happy to report that treating the opposite side has greatly reduced the sensitivity on the other side of my body. In fact at times I do not noticed it at all!!!!!!!!!!!!

I am now adding treatment of that side to my schedule. I am still walking a mile every day, (except when it is windy) I am working very hard trying to get the strength back in my right hand. I am so happy that the atrophy is gone from my right limb but I want that strength back. (Not there yet, I dropped a glass and shattered it this morning-back to tupperware for a while)

My energy level is improving, my joint pain is still totally gone. Every morning I wake up and still recoil when I start to rise in anticipation that the full body joint pain will slam me. I have to remind myself each morning that it is gone.

I screwed up big time this week. I started a new compounded pain cream since all other compounded creams caused nasty skin reactions. Rather than try a small amount on a safe spot I applied it to the right side. Who knows why I did something so stupid?

The good thing is that, although the resulting skin reaction was just as miserable as before it did not ignite a major lie on the floor crying flare!
(I should probably give up on pain creams since the only one that helped my pain contained Ketamine and I am allergic to that.)

On the not so positive side I had a six month follow up with the GI doc who was amazed that the symptoms of gastroparesis appear to have permanently vanished and that I was walking a lot better. He said I was his first CRPS patient who had gastroparesis symptoms disappear. Unfortunately he was very defensive when I told him how my improvement occurred and it had nothing to do with the medication he had prescribed that made me sicker and I had not followed through with his referral to get a spinal cord stimulator, (which should not have been a surprise since I had informed him I would not have that procedure.) I was actually chastised for using tDCS, even though he was unfamiliar with it. He indicated that he was making a note in my chart that he counseled me against its use. When I asked him if he would prefer that all of my symptoms return again he stated the following as he abruptly left the room, "I can't help you if you don't follow my recommendations." I had to bite my tongue to keep from reminding him that he in fact had not helped me.

Can't waste valuable time an energy trying to bring him around. It's dump time. Hopefully I won't need a gasto doc in the future. If so I hope to find one whose ego does not enter the room before he does.

Is anyone else treating both sides?

Has anyone else cracked the booster treatment schedule nut?

Wow...I am SO happy to hear that things continue to go well with your treatments. It is exciting to hear that you are having success treating both sides (since both sides of my upper body are affected)...and that has got to feel amazing compared with what you have gone through in your life with RSD. Sounds like you are getting quite greedy...wanting to get the strength back in your hand...lol! It will come...just gonna take some time. Hard to believe where you are now compared to where you were just a few months ago prior to the tDCS treatments...it is really incredible and I just an over the moon happy for you and your success.

Stupid gastro doc and his ego...definitely time to say goodbye to him and hopefully not need another one in the future. I hate when the people we are paying to help us (be they lawyers...doctors...whoever) say that they cannot help us if we don't follow their recommendations. I understand on the one had the sense of what they are saying but as the client/patient it is up to us to decide what will be best long term taking into account the entire picture of our lives and if they cannot respect our wishes and the decisions that we make then they CANNOT help us...they are merely concerned with helping themselves.

But good for you! Keep updating us on your progress and I hope to be able to compare notes soon about this treatment. Take care!

I got my Iontophoresis unit and sponge electrodes today. Of all things...the lead wires are backordered until 3/14/12. I wish they had told me that on something other than the packing slip. At any rate...I just place an order for another set on amazon for $5 (this included the shipping cost) and those should come soon. I'm also still waiting on the pin to banana adapters. I am very excited to start treatment but it looks as though I will have to wait just a little while longer....

tDCS new update
 

Two days ago I developed run of the mill constipation. Unfortunately the associated inflammation set off a CRPS chain reaction. Result-swelling everywhere, joint pain on duty again, had to use cooking oil to get my rings off, limb pain, screaming abdominal pain. My husband begged me to go to the ER- (I might-when pigs fly)

Yesterday I could not even blink without severe pain. I was down for the count and in bed all day. I fell when I got up to use the bathroom.

Here is the good news. Prior to tDCS I would have been down for days and would have had to claw my way back. The last time I had a setback I got myself right back on a tDCS treatment schedule and the flare ceased.

This time I am on a maintenance tDCS schedule. I treat twice a week for twenty minutes each. My day to treat is not until Wednesday so I am waiting.

Today I am bouncing back with no intervention of any kind except Excederine for a headache which is now down to a dull roar. (In the past the headache would linger for days) I probably should have taken advil instead since it is an anti-inflam)

I have already done the first round of my exercises and hope to walk outside this afternoon-will have to wait and see on that one.

What amazes me is the absolute belief, based on my level of pain, that I was done and that this flare had undone all of my progress. I don't think that my belief was the result of negative thinking, but rather the result of the amount of full body pain I was in and the knowledge of what typically would follow.

This morning I put my rings on again, (although I took them off-dont' want to press my luck) My full body pain is gone, joint pain is gone, electric shock type pain down my legs is gone, and the abdominal pain is now discomfort.

There seems to be a battle going on in my body. CRPS versus tDCS. I am so thankful that at this point in time tDCS is in the lead.

Hope this is helpful to someone.

I am still looking for input from anyone who has had a successful maintenance schedule of treatments.

I'm sorry that you had such a bad flare...but it is amazing that you are bouncing back so quickly without even having to do any additional treatments. That is really fantastic.

I want to thank you all for posting about tDSC. This is the first I have heard of it and have been watching this thread with fascination. I asked my pain doc about it and he said he has heard of it but would not write a RX for it. He wouldn't give me a reason why not (I don't think he implants SCS). I have a question. Does it help with muscle spasms? I have had RSD for many years and a few years back got stuck sitting in traffic for an extended period (after a fenzian treatment). The result is terrible muscle spasms in the glutes & hamstrings and inflammation in the ischium. I've had several injections (trigger point & cortizone) and another ischium injection scheduled for next week. Long story short, I have not had lasting relief from any of these. I cannot sit without pain & as the day progresses so does the pain level. Maybe if I can get the muscles to quit spasming, the pain will decrease.

Linmarie
:grouphug:

Sorry you are many years into CRPS. No doubt you have tried numerous meds and treatments. Muscle spasms only add to the misery. My concern is that given your history of treatment failures, your physician would not explain his refusal to support you in a trial of tDCS. My hunch is that he is not knowledgeable in the application of tDCS to CRPS.

Since you are asking about the effectiveness of tDCS for muscle spasms it sounds like you either did not get an answer from you doctor, or were shut down by his/her response and did not have the opportunity to ask additional questions.

Like every treatment for CRPS some folks are responders and some are not.
For those who are responders most get relief from spasms. I had very little relief from spasms until tDCS. I truly do not know where I would be today without this treatment. Similarly, I don't know where I would be if I had been anything but implacable and relentless in the face of a steady stream of physicians who impeded my progress, either due to ignorance, financial gain or both.

Since your doctor will not write a scrip for the tDCS device if you are serious about trying this treatment you can purchase the equipment yourself and find out if you are a responder. Another option is to consult with a physician who is knowledgable about tDCS and its application to chronic pain.

If you have been treating with this pain management doctor for an extended period of time and still cannot sit at the end of the day it sounds as though this doc is out of treatment options for you.

And yes, when the spasms lessen so does the pain.

Hope better days are ahead for you!!!

New Injury
 

It is with total disbelief that I am sharing a new injury. This morning I took a bad fall on gravel in the street. This fall resulted in a sprained ankle and a nasty bruise. For the first few hours it just felt like a sprain. By the afternoon it began to burn like fire, swell and turn bright red. Now the burning is moving toward my knee and alodynia has set in. I had been on maintenance tDCS but as a result of the fall I am resuming my regular treatment schedule since I know the burn only too well.

Please forgive me for not answering my pm's but I have to tend to this for the near future.

Dear Terri,

So sorry to hear about the injury to your foot. If you haven't aleady started
doing so, start taking extra Vitamin C. Studies show an 80 percent reduction in risk. More than once when my daughter has suffered injury she
had taken this. I think the studies were 500 mg but my daughter took 1000
mg daily for weeks after her injuries.

You will be in my evening prayers for a speedy recovery. Hang in there.

:hug:Joydee

Dear Ballerina -

If you haven't done so already, call your pain doctor ASAP. A fresh injury creating spread in a previously unaffected extremity is in all likelihood a fresh case of CRPS, where you were clearly aware of a lot of inflammation at the site of the ankle sprain. And here I admit to be working somewhat off the reservation - but not far - where a number of studies out there (of new treatments which they hope to show success with) have restricted their sample population to people who either (A) have developed RSD within the last 6 months OR (B) have had spread to "a new extremity" within that time period.

How do we prove this? It’s really quite straightforward. Fresh cases of CRPS are associated with high levels of certain cytokines. See, Neuropeptides, neurogenic inflammation and complex regional pain syndrome (CRPS), Birklein F, Schmelz M, Neuroscience Letters 2008;437:199-202. And among all of the cytokines that have been measured, one class stands out for practical purposes: TNF-[alpha] and its soluble Receptors I/II.

Why? Because unlike - say - Interleukin 12 - tests for TNF-[alpha] & Co. are available from commercial medical labs while those for IL-12 seem a little harder to come by. On the other hand, according to one abstract I've found, the level of statistical significance for Substance P is not nearly as high as that of either TNF-a or IL-12. Systemic inflammatory mediators in post-traumatic complex regional pain syndrome (CRPS I) - longitudinal investigations and differences to control groups," Schinkel C, Scherens A, Köller M, Roellecke G, Muhr G, Maier C, Eur J Med Res. 2009 Mar 17;14(3):130-5:

Abstract

OBJECTIVES: The Complex Regional Pain Syndrome I (CRPS I) is a disease that might affect an extremity after trauma or operation. The pathogenesis remains yet unclear. It has clinical signs of severe local inflammation as a result of an exaggerated inflammatory response but neurogenic dysregulation also contributes to it. Some studies investigated the role inflammatory mediators and cytokines; however, few longitudinal studies exist and control groups except healthy controls were not investigated yet.

METHODS: To get further insights into the role of systemic inflammatory mediators in CRPS I, we investigated a variety of pro-, anti-, or neuro-inflammatory mediators such as C-Reactive Protein (CRP), White Blood Cell Count (WBC), Interleukins 4, 6, 8, 10, 11, 12 (p70), Interferon gamma, Tumor-Necrosis-Factor alpha (TNF-a) and its soluble Receptors I/II, soluble Selectins (E,L,P), Substance-P (SP), and Calcitonin Gene-Related Peptide (CGRP) at different time points in venous blood from patients with acute (AC) and chronic (CC) CRPS I, patients with forearm fractures (FR), with neuralgia (NE), and from healthy volunteers (C).

RESULTS: No significant changes for serum parameters investigated in CRPS compared to control groups were found except for CC/C (CGRP p = 0.007), FR/C (CGRP p = 0.048) and AC/CC (IL-12 p = 0.02; TNFRI/II p = 0.01; SP p = 0.049). High interindividual variations were observed. No intra- or interindividual correlation of parameters with clinical course (e.g. chronification) or outcome was detectable.

CONCLUSION: Although clinically appearing as inflammation in acute stages, local rather than systemic inflammatory responses seem to be relevant in CRPS. Variable results from different studies might be explained by unpredictable intermittent release of mediators from local inflammatory processes into the blood combined with high interindividual variabilities. A clinically relevant difference to various control groups was not notable in this pilot study. Determination of systemic inflammatory parameters is not yet helpful in diagnostic and follow-up of CRPS I. [Emphasis added.]

PMID: 19380284 [PubMed - indexed for MEDLINE]

And in this regard, please note that the generally utilized test for ongoing inflammatory processes, that for "C-Reactive Proteins" has been shown to have no correlation with acute CRPS in the first instance, both in the above referenced study, and an earlier study by the same authors. "Inflammatory mediators are altered in the acute phase of posttraumatic complex regional pain syndrome," Schinkel C, Gaertner A, Zaspel J, Zedler S, Faist E, Schuermann M, Clin J Pain 2006 Mar-Apr;22(3):235-9.

So, where any rheumatologist should be able to test for your serum levels of TNF-[alpha] and its soluble Receptors I/II, if they are elevated, it follows (going back to Birklein and Schmelz, 2008) that you - in all likelihood - have suddenly developed have a fresh case of CRPS. And this is actually good news, at least with respect to the newly injured area: 3 - 4 days of continuous regional anesthesia or a solid round of perhaps 6 - 8 LSB's over the course of three weeks (I found that the "bilateral block" works best) with PT everyday following a block when it's at the height of its effectiveness can and should knock out the "fresh case" in its tracks.

And here, you would be talking about starting the therapy within a week or two of the onset of symptoms, a treatment unheard of in the United States, outside of the U.S. Military, not to be confused with its dumping ground, the VA. See, e.g., A Unique Presentation of Complex Regional Pain Syndrome Type I Treated with a Continuous Sciatic Peripheral Nerve Block and Parenteral Ketamine Infusion: A Case Report, Everett A, Mclean B, Plunkett A, Buckenmaier C, Pain Medicine 2009 Sep; 10(6):1136-9. Epub 2009 Sep 9 (rapid resolution of an unusual presentation of complex regional pain syndrome type I in 17 y.o. female West Point cadet after four days of treatment with a continuous sciatic peripheral nerve block and a concomitant parenteral ketamine infusion).

Good luck and God’s speed!

Mike

I haven't been here the past few weeks; very busy with work, and my wife returned to ECT, with improvement after just 4 treatments. It's been the single most effective treatment for her.

Have you tried botox injections for the muscle spasm? Many pain physicians will do this, though insurance may balk. At one time it helped my wife's pudendal neuropathy...until the stuff hit the fan.

Ditto here, Terri.

And Mike, I love your cerebral and methodical approach. Keep it up!

tDCS recovery from CRPS spread
 

Many thanks for the phone calls, messages, pm's and emails. Please forgive me for my late replies. I have devoted every second of my days to beating the spread to my left ankle and leg.

I am amazed that as of this morning the spread appears to be totally gone.

Here is what I did. My PM doc had nothing more than blocks to offer me. I decided against that for the following reasons. In the past, he had not even recommended blood draws and insisted on a virtual colonoscopy for fear of igniting a spread. Additionally, no pain management doctor I have seen has ever had a patient go into remission with blocks, despite many with early intervention, and despite the conventional wisdom that early blocks can promote remission. My pain management doctor has had patients that have experienced spreads after blocks. I personally know of three patients who have experienced serious spreads and have learned of additional examples through forums. Even if I had a block that helped short term I did not want a short term solution.

Left to my own devices I doubled my Low Dose Naltrexone and took anti inflams to deal with the inflammation issues. I immediately began an aggressive desensitization program every fifteen minutes all day long. Basically, what ever my leg hated I gave it a quadruple dose plus more. I refused to give into my body screaming for oxycodone although admittedly that was almost not successful. I went back to 50 mg of Trazadone for sleep issues and night sweats.

Instead of pain meds I used mirror therapy at least every 90 minutes (sometimes once an hour)to knock the pain down enough to move, bear weight and do desensitization activities, (very miserable) and used a TENS unit on my leg.

I went back to my treatment schedule of tDCS twice a day for twenty minutes each and I am still treating.

The only color change that remains in my leg is the bruising from the original fall. The extreme burning, alodynia, sensitivity to air and clothing is gone. The accompanying exacerbation of the addition miserable symptoms (extreme sensitivity to light, loud noises, cold rapid heart beat, sweating all over joint pain, etc. had lessened.)

Basically everything I did dealt with preventing change in brain plasticity and cortical reorganization. The most important thing is that I did nothing invasive.

Only time will tell if I have dodged this bullet for good.

Hope this is helpful and useful information to someone!

Wow...I applaud you for pushing yourself to go through all that...it must have been really hard. As one who has experienced spread following a block, I completely understand your decision to not go through that. The other stuff may be more painful in the short term but it appears that you have done all the right things and that you succeeded in your fight against the RSD spreading into your leg. Just goes to show that there is rarely just one thing that helps...but rather it is about taking all those treatments that you know and using them in combination to see results. Thank you for sharing all this...spread to new areas is always very scary and it is encouraging to hear that you CAN do something about.

For me...I will start my twice daily treatments with tDCS today. Fingers crossed that it is successful. I know there will probably be some trial and error involved in finding the right electrode placement and everything but I am very optimistic. Thanks again to everyone for their posts and suggestions.

Dear Ballerina,

This is wonderful news!!!!

:hug:Joydee

All day today I have been touching my ankle, to see if the pain is really gone. To my amazement it is totally gone. Three days ago I was crying rubbing raw rice laced baby lotion on my ankle, followed by drawing yarn over my calf that felt like knives. My leg felt as though it had been set afire. Even the breath of my cat was unbearable.

Although extremely fatigued I am so very grateful that the spread, and or fresh CRPS has been thwarted.

When my husband asked me how I wanted to celebrate I decided I would dig into a cheesecake with a serving spoon. YUM! (Tomorrow I will be back on track with my CRPS diet)

Wishing cheesecake celebrations to all!

If anything is worth a cheesecake celebration...THIS is...I am so happy for you!

Now let it be known . . . .
 

Ballerina -

A little late, but let me add my congratulations as well. Congratulations!!!

What you have accomplished is HUGE. If, based on the stuff in my last post here, and other (far more reliable) sources, "spread" to a new extremity is in fact a fresh case of RSD/CRPS, then it follows that your protocol should be generalizable to all fresh cases of RSD/CRPS!!!

Seriously. Or as put in the land of pedantry, Q.E.D.

What more is there to be said? You rock! :Tip-Hat: :Head-Spin: :winner_first_h4h::Head-Spin::Tip-Hat:

Mike

Hello everyone, I'm from the UK

My sister has had CRPS for a year now from banging her foot against something hard by accident. I don't know the specifics of her CRPS and I don't know if it's spread either, she's been keeping quietly to herself about the condition and only recently I've learned how horrific this condition actually is. I don't know if it's spread anywhere recently (she seems to be in ache/pain moreso lately)

I want to help her get better so I suggested to her she ask her doctor about tDCS and TENS machines (and perhaps low dose ketamine infusions athough I don't know specifics about these and I'm not sure she can actually afford all of that). Maybe just tDCS and TENS will be good enough... I hope :/ Maybe even mirror therapy? I've read that it has caused spreads and such so I'm not sure if I want her to risk it. Now knowing that spreads are a fresh case, I'd prefer if she got her tDCS and TENS first I suppose

One thing I'm definitely curious about is if TENS units (sorry, slightly off topic) have ever caused spreads or whatnot although generally they seem like they're safe?

Are there good online stores that you guys who have had success used that ship tDCS and TENS units internationally (to UK ;p)? I would love to know, I just want to help her and get her life and happiness back

I use a TENS unit with much success and I have never heard of any issues with them causing spread. BUT...they do not work for everyone and for some people using a TENS unit can actually be more painful (maybe cause a fare but not spread...at least from what I have heard). That tends to be how things go with CRPS...but considering how non invasive it is and the possibility of success I definitey think it is worth a shot for everyone...much as I feel tDCS should be tried by everyone before doing anything more invasive.

I don't know what companies might ship to the UK or if there are any UK based medica supply stores where you might get a TDCS unit. It might help in your search to know that the unit that is used for tDCS treatments is an Iontophoresis Delivery Unit...and you will have to buy different lead wires and electrodes to convert it for tDCS treatments.

Thanks for the response. I'll try checking out more stores first, she's going to get a Bier's block which had worked for her before so I'm going to urge her to use tDCS and TENS as early as possible too

TDCS trial report
 

This is a report for anyone interested in tdcs trials.

Upon reading of ballerinas success with tdcs, and then doing considerable research on the subject (I live in a town where I can go to a university to get access to this the published scientific literature) -- I obtained a similar tdcs system as ballerina uses and have done a couple 10 day trial periods. I did one 20 minute session a day, at 2 milliamps.

I have experienced no discernible change whatsoever in any of my symptoms. In the 1st ten-day period, I placed the anode over and a little below the EEG C3 location, and the cathode on my forehead above my left eye. I experienced some significant sleep disturbances, which caused me to stop and reevaluate.

In the 2nd 10 day period, I placed the anode over the EEG C3 location and a little above and behind towards the rear of my head, and the cathode on my forehead above my left eye. I did not experience any sleep disturbances in this trial, but nor did I experience positive changes in my symptoms.

I have a very angular head -- and using the square rather inflexible electrodes is rather frustrating for me -- because the C3 location is right at where my head does about an 80° bend!! I may purchase a those round flexible electrodes & sponges.

Almost every session I do experience some flashing in my eyes -- which settles down within a few minutes, and my forehead sometimes is a bit irritated/burning under the electrode.

Just fyi for you all! I will continue to make adjustments to see if I can make any progress in reducing pain/alleviating some of my symptoms.

PS> I found FMMichael’s references to Dr. Llinas’s groups research and theories to be quite fascinating -- thanks a lot! And thanks to ballerina!

Hi Voner,
Glad you are trying tDCS. I am a little confused. It sounds like both electrodes are on the same side of your head. Is that correct?

crpsjames,

sorry i wasn't clear. I'm following standard tDCS for pain protocol. anode on one side, cathode on the other. So far, In my case, anode on the left side.

regards.

voner

So...just to be clear, you then have the anode on your left side and the cathode above your RIGHT eye? I know I personally had to really think about it the first few times...I was overthinking it I think.

I started doing treatments twice a day starting Sunday and so far so good I think. I believe I have noticed some pain reduction...though to be honest I don't notice the pain level dropping so much as I notice that after a few hours it goes back up again. I think it's just because I have gotten so used to the high pain levels all the time that it's throwing me off. I'm going to continue with this current electrode placement for another week and see if there is any significant difference over time and if not I will try a different protocol.