Improve protocol
 

Hi in last few weeks i loking in more details how tDCS works and how inprove it.

here is few ideas how create a good protocol:

1.Find the target
Find a specific neural structure and brainwaves

2.Cortical folding
Find cortical folding of this area.
How is interidivitual variability of cortical folding?

3.Adjust ealectrode size and placemet
Skin iritation/pain limit
Field orintation
Field intensity
(model is be best but may be posible partialy aproximate this data)

4.Filed intensity in the cortex , treesholds of polarization of varioous parts of neurones and effect of the whole nework

5.Stimulation parameters nad waveform
Try to aproximate from the model and use EEG to observe changes. (idelay use with fMRI)
If it not go wll try to create feed back loop with EEG and constantly change the stimulation parameters (use frequenci folowing responce and other stuff).
*in case if you traing changing brainwaves too
---------------
Currently used protocols with standart tDCS pads is very bad in focality
and didnt bother with many importhant things.Clinical researchers copy protocol one from ther without thinking what is actualy work (use oversimplified models).

voner,catra,crpsjames,etc...
 

How is it you are all doing this tDCS treatment but no one mentions how or where they got the protocols on placement of the leads. Where did you learn how to apply them? You all seem so educated in the treatment but I don't hear you talk about any doc who is following you or making the protocol suggestion. Did anyone go to any trials and learn the placement? You could spend your life on Pubmed searching but unless you have a goal you're lost in cyber space. Just throwing out this question since I'm very new to all this, but am a firm believer. Thanks.

Hi Hampster,
Very cute name! It sounds like you are new to this. I can only speak for myself. I learned through extensive research, mostly on Pub Med. It was arduous and very time consuming since I do not have a medical background. I followed suggestions on this thread and reviewed the methods section of tons of Pub Med articles. You must realize that there are very few doctors who use this treatment for many reasons which are mentioned in this thread. Every person responds differently to different protocols. You also have to know that like any medication, what works for me may not work for you.

If you are not comfortable digging through research and basically teaching yourself, and many are not, you might want to consider consulting with a doctor who is very comfortable with this.

Many have gone to James Fugedy. I suggest you give his office a call as a starting point. It would be a shame to just stab in the dark with some protocols only to conclude that you are not a responder, when with the proper guidance tDCS may really work for you.

Some one posted not too long ago that she was planning a visit to Fugedy, I think her name was Debbie. Try shooting her a pm. I know that Ballerina visited Fugedy as well as one of the other treatment centers. She could tell you more details about how to arrange a visit with either of those places to get the kind of support you need.

Hope this info is useful!

For me...I did some research and read some PubMed articles as well as watching the Jove video and reading the PDF file that was with it which gives a list of several different protocols along with their benefits and limitations. But the current protocol I am using is one that was suggested by ballerina who has done EXTENSIVE research, went through a tDCS trial, and has tried a number of protocols on her own to see what was most effective.

My primary care physician wrote me the script for the equipment and is supportive of my treatment with it...but she herself does not have a lot of experience with this sort of treatment and is not really overseeing my treatment or making any recommendations about it. But as there are no side effects and it is not invasive...it is very safe to treat myself at home.

I know there have been posts about Dr. Fugedy and even a link to his clinic in Atlanta that have been posted. I find the website for the clinic to be very informative about the benefits of this treatment and if I felt the need to treat with a doctor at a clinic...that would be where I would want to go. But for the cost of equipment and a bit of my time to research I think home treatment was the best option for me. The first protocol I tried didn't go as well as I hoped...but I was prepared to spend some time doing trial and error to find what worked best for me. I feel very lucky that I responded well to the second protocol I tried. If I couldn't get one to work for me I was prepared to schedule a visit to see Dr. Fugedy.

I hope that answers your question? I think that one of the simply wonderful things about tDCS is that it is a non-invasive, safe treatment, that can be done at home. My only fear about doing it on my own was that I would not be able to find a protocol that I responded to.

tDcs in Atlanta
 

Thanks so much crpsjames & catra: I am friends with deb and she and I are planning a trip to see Dr Fugedy. We also learned about a dr. shneider here on Long Island where we live. I'm waiting to hear from him about his knowledge for pain treatment. His practice treats autism with the tDCS. So we thought he might be able to help us here and we wouldn't have to travel. But, my question was just in general about how you knew the protocols for RSD. If we can learn them from internet why can't we get more docs involved to help all the chronic pain sufferers. Plus I wanted a place to refer to if the protocols we are taught by Dr Fugedy fail. Again thanks so much for your response and I will be in touch often after going to Atlanta.

Hampster,

I believe you would be better served seeing Fugedy. I would not want you to be disappointed with your outcome on Long Island, only to have to spend more money and time for better care. I, myself would not visit the doctor you mentioned.

I believe Fugedy follows up with his patients if protocols do not work. You may want to ask him about this.

Your question regarding tDCS not being used to help more patients is bluntly ignorance perpetuated by greed.

How many pain patients do you think a doctor like Fugedy has to treat with tDCS to equal the implantation of one spinal cord stimulator?

Best of luck to you and your friend. It is a small world indeed!

Hi Hampster,

All the responses made to you are excellant. I thought to add my own.
My daughter has CRPS. As her advocate/ researcher in addition to the
very helpful responses made by other members, we were also led to Dr.
Fugedy in Altanta. Since my daughter could not travel by her self and
we were a great distance from Dr. Fugedy's practice it was a major feat
just to find a time when we could go so the appointment was made for the
first week in April. I had hoped by this time I would be posting wheather
she was a responder or non responder.

As someone said the best laid plans of mice and men often go astary. Three
weeks before the target date our family suffered illiness of others in other
states, and the same month the death of another family member so it was
necessary to post phone the treatment date. Doc Fugedy's office says they
can usually get another appointment quite soon but we are still dealing with
uncertainties regarding an ill family member so it will be awhile before we can reschedule.

That said, for my family and others like our situation I think going the route
of someone like Doc Fugedy is the best option and the experience I have had
thus far suggests he is a capable and caring doctor. I do have one regret due to the time line. I did a lot of research education wise and
some learning about TDCS but since we were going to the Doc in April I did
little other research. I regret that, we were surprised when my daughters
PM doc said he would write a script.

Suffice it to say while going to visit Doc Fugedy is not off the table in the
least, I have nevertheless put myself in action mode. I had began a search
for the protocals since we do not know what other delays we might face.
While my perference is for a visit with Doc Fugedy I am also getting ready
and it may be my daughter might join the ranks of home use. I have already
obtained the protocals used at the study in Beth Isreal. I have found getting
hold of one study serves to explain so many things. So much research on TDCS felt like being in a sea of info but reading the full text of the docs who
did the study is extremely helpful.

Regarless, of the route we take we will keep everyone posted. You TDCS
users and posters are my families hero's. You fill me with inspiration and
courage. Good luck to everyone.

:hug:Joydee

tDCS protocol info
 

Edever, I did go to the Jove Video that is mentioned by Catra. I glimpsed at it and it does seem to give you a great deal of info and understanding. Go to Jove Video and you'll see what pops up. It looks very informative. Hang in there we will be going on April 27 to see Fugedy and we'll keep you informed as to any lessons we learn and progress. Follow CRPSJames also and he's aware of other info that provides protocols. Talk soon.

I am SO excited to here that you and Deb are going to visit Dr. Fugedy. From everything I have heard he is a very knowledgeable and compassionate doctor. I will pray for a very successful visit. April 27th is not too far away.

I'm sorry to hear that your visit got delayed (and also for the reasons that it has been delayed). I hope that things sort themselves out soon and that you are able to see Dr. Fugedy soon or that if do begin treating at home that this is successful (and would then save you the trip). I will keep you and your daughter in my thoughts and pray for your success as well.

Trying to decide, need help
 

Deb and I are still on the fence as to wheather we should go to Atlanta or go to Dr. Schneider here on Long Island. We have spoken to both docs and they are very helpful and want to help us but we have conflicts as to who's the better long term help. Anyone have experience they could share???

I'm lost in tDCS space
 

OK, I give up. I've tried to find protocols for tDCS and all I keep getting to are abstracts. I love reading all the great things all these fine docs are saying but, where do I find an actual protocol??? How did Joydee find the Beth Isreal protocol she mentions in her last post? I've just spent hours going from one place to another to no avail. Any help would be great. Thanks so much.

Hey Hampster,

I suggest you read through the tDCS thread. There are multiple postings on how to locate electrode placements. You have to get past the abstracts.

It is too bad there isn't a one size fits all but there are new publications almost weekly with new information.

Given the amount of frustration you are having an appointment with an experienced doctor might be more beneficial for you in the long run.

Hope this helps,

Heading to fugedy
 

Just an update..Irene and I booked our flight and will be seeing Dr. fugedy on may 5th! .....will keep you updated,
Debbie

Hi Debbie,

"Yay" you. Best of luck on your visit with Doc Fudegy.

:hug:Joydee

Hi Hampster,

Just read your post but just as I am getting ready to leave and I will be late
if I try to respond now but I will get back with you.

:hug:Joydee

CRPSJames, thanks
 

James, I'm not looking for a one size, I'm looking for any size. lol I have read everything since Jan on this thread no one says how you get to the protocol. I get to the abstracts and I read them but then I'm at a wall. How do I go further and not end up back into some other abstract? You all mention Pubmed and that's where I start but still can't find a protocol. I wondered how Joydees family got the Beth Isreal protocol. Deb and I are finally going to Atlanta and I hope we'll learn a lot more but, how much can we learn in site of 4-5 hours? I'm looking for a back up system to do research on the protocols for when we return. I've read so many abstracts I'm bleery eyed. Give me some direction if that's possible. Am I using the wrong terminology?

Hi Hampster,

I am back. Just finished a post but took so long to write it, it was not
accepted and had to log in again.

First off all James gave you excellant advice and he is correct, There are
more than one protocal. I don't know what part of the body your CRPS
is located but I first became familiar with the Beth Isreal study on CRPS
the RSDSA web site. I became farmiliar with the names of the docs involved
in that study.

I got lucky. I wish I could provide you with a step by step procedure but
I don't know what key words I typed. I went through Google first not
pub med. Dont despair before posting I played around with some key words
and came up with the screen and can share from there. Go to goggle,type
in Non-invasive transcrainial direct current stimulation for neuropathich pain .
This will bring you to a screen. Look at one of the titles which has the names Knotvova H. and Cruciani RA. Click that and this will take you
to pub med. That Pub Med abstract will say. " Non-invasive transcraincal
direct current stimulation for the study and treatment of neuropathic pain"

You don't want just the abstract on that screen see other souces and you
will see springerlink. You don't want springer.com unless you are assoicated
with a facilty which has access. I registered so I could get a copy of the
full article. It cost 39.00 dollars.

This has some portocals mentioned but please understand this is not all your
homework, helpful yes but not all. Both Voner and Catra also posted a
web site which is not the TDCS thread that has another site, with some
protocals out of Harvard I think.

Hope this helps

:hug:Joydee

Hi,
Hampster, sorry about the recent message. Was in a huury so I did not
have time to proof etc. For my family either way we go be this ending
with doc Fugedy or what, it is the better part of valor to study
since this gives you a so much better grasp of the entire situation and
also puts you in a better postion of being able to communicate and discuss
with the doc or if not doc, just gives knowledge for self adminstration but
don't give up, knowlege is power but knowledge is often gained inch by inch
not over night. Study a little, get some sleep, make sure to eat a good meal
and be patient.

:hug: Joydee

Hampster,

I thought I should correct use of word in post. I did not mean to say
there was a protocal from out of Harvard not on the TDCS thread posted
by both Voner and Catra. Rather that this is where think I saw it. Sorry
about that.

Joydee

Thank you so much. I appreciate all you have suggested. Please don't think I'm looking for short cuts when you guys have done all the work. I want to do the work you've done and Voner, Catra and Ballerina and of course James. I just reached a wall when all I kept coming to were the abstracts and no I do not have access to any facility. I was asking if I could be pointed to the right place so that I could go deeper into learning about the protocols. I understand there are many different ones, but until I see one I won't even know what i'm looking at. I'm excited about making the trip to Atlanta and Doc Fugedy. I think I wanted my knowledge to be greater before the trip. I'll keep hunting, not ready to abandon ship yet. Thanks so much for all your input. Hope is well in your family by now. It would be nice if we all went to Fugedy together.

Hi again Hampster.

If you have not already been exposed to this interview you might try
goolging ( ORLIVE. Inc: Defining and treating chornic pain.)

It is an interview with Richard Cruciani who was one of the docs involved
in the Beth Isreal study on CRPS. The study itself was on CRPS of both
the upper limb and lower limb. The fellow patient in the interview is detective Tobin I think his name is, He developed CRPS as a result of
a knee surgery. Doc Crunicani was his PM doc. Detective Tobin was taking
35 different pills.. Detective Tobin is also featurned on Doc Fugedy's site
While limited in this interview with Richard Cruciani there are in the interviews
some pictures of the TDCS treatment being applied. ( Note how the doc
is meausring his head.) I read an udpate on Detective Tobin not long ago
he continues to have treatments since he lives in the area, only every few
months. He says the longest he has gone without pain is five months, but
then has to go in for a TDCS treatment.

Hang in there

:hug:Joydee

protocols
 

Find best protocol is hard becaouse all is wrong ,they to oversimplified the effect of tDCS.The currenttDCS rpotocols dindnt consider many importatant thigs.Yes they may work but noone know how,why.Same prtociol in another person with same problems may end up absolutly different.With standart tDCS pads you modulate almoust half of the brain.

Absolutly ideal be HD-tDCS guided by fMRI model , i triing to find ways ho to imrpove protocol without fMRI effect can me much more precize and stronger but stil far awy from fMRI based. Still be needed so try and error based aproachs.

*edit*

Hope this helps Hampster
 

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!!!!!!!!!

Hi,

Yes, unfortunately not all folks with CRPS are responders to TDCS. Nevertheless keep in mind when it comes to these kinds of treatments
while reseachers have been studying them over the past ten years it is
only in recent years they are emerging through the pipeline. I recall a post
from Ballerina when after she went to Beth Isreal and was a responder
asked how many years it would be mainstream treatment and was told
five to ten years. Ballerina's response to that was that was not good
enough for her and she took matters into her own hands, much to the rest
of us good fortune.

The point I make is none us can wait and we all need to move this process
along through a grass roots level. It is more important than ever due to
the new imaging techniques we become our own advocates and advocate
for each other. Strides will be made but together we can make them happen much faster. I would have to search for a comment made in a post
by voner but I recall she said he heard some manufactor was working on
a new model for a unit. Perhaps Voner can elborate on that. What I got
out of her post was someone was working on a unit that had greater capacity
so perhaps we can also look forward to future units being ever more effective
than ones now existing. Its going to be tough for Pm docs to get with the
program simply because there is not a lot of money involved for the PM docs .
Not all PM docs are moved by money. I think doc Fugedy is moved more
by ciompassion so we need more docs like him but they exist out there.

Faith is the bridge to success, keep up research and faith.

:hug:Joydee

Hi Hampster,

If you find an abstract that looks especially promising write to the author and request a copy. Most will be happy that you are interested in their work. It is not hard to develop a resource at a university. Develop a list of articles you want, then develop a list of your friends who have kids enrolled in a University. I also enrolled to take a course on an audit basis at a large university and had plenty of access. If you have a doctor who also teaches at a university there is another resource.

I have found that persistence is the key to dealing with chronic pain. There is always a way to get information. You just have to find a way to knock the information barrier down.

A Little Overwhelmed
 

I have not posted in a while because I have been overwhelmed by requests for tDCS information. I initially gave my phone number out to some who needed more in depth discussion, and now many interested people have called me, unfortunately sometimes a dozen or more calls a day. I have had to turn my answering machine off so I can get some rest since I get calls as early as 7:00 am and as late as 10:00 pm.

I have been so inspired by everyone with whom I have spoken. Last week I met a most inspiring person. Although I did not recognize her since she posts on another section of NT I felt like she was my sister after I hung up.

She has a Spinal Cord Stimulator but wants to come off narcotics, and she wants better relief. I was immediately taken back to my days of narcotics and my constant fear that they could be withdrawn, and I might have to start the search for a new doctor to prescribe them. My new CRPS sister lives in a state that makes it especially hard to risk rocking any boats with doctors for fear of being dumped and not being able to find another doctor, thus being without narcotics which provide her needed relief to function. (Clarification-we are not talking addiction here, just day to day function. We are also not talking a newbie but a seasoned CRPS veteran, and a very sharp cookie.)

What is so remarkable about her journey is that she is taking it upon herself to try tDCS and had already identified three different paths to tDCS treatment before she even called me. Remarkable! I have dumped so many doctors due to ignorance, greed or just due to impeding my progress, that I have lost count. I can not imagine being locked into one doctor and being fearful of being dumped if a new procedure, not offered by that doctor is undertaken. This is nothing short of intellectual, medical and emotional imprisonment.

The worst part of this is that she is a real leader in the CRPS community, and even expressed fear of sharing her upcoming tDCS trial openly with other CRPS patients. She acknowledged greed as a major deterrent of tDCS being readily available from pain management doctors.

Three cheers for you!!!!!!!!! How remarkable that you did not let your doctor's ignorance stand in the way of advocating for yourself.

You can't be out now but I am praying that tDCS ends your need for narcotics as it has for so many others and that you can one day be out of the closet and share your journey with others who may be struggling with the same issues.

I think about you often and now you are on my list of most admired people. Thanks for blazing the trail for others behind you!!!!!

Dear Ballerina
i am SO happy that you have found this new treatment and that it is working for you! It lifts my spirits to see others making progress.
please stay in touch
Your friend always
Lori

I'm so glad to hear that so many people are trying to learn more about tDCS...but sorry that it is taking up so much of your time. You really have inspired a lot of people and I hope that they all get the relief from tDCS that you have.

An update for myself...I have finally been getting some decent sleep. I stopped taking the amitriptyline a while back and at first my sleep was still pretty broken but was better than it was before I started taking the amitriptyline last year. Now I am getting 5-6 hours a night of sleep instead of 3-4 and those are USUALLY consecutive. Sometimes I still wake up in the middle of the night but I can usually fall back asleep without too much time staring at the ceilling.

I haven't noticed much of an improvement in the pain since my last post...but I have been adventurous and been wearing short sleeved shirts around the house. The weather got cooler here again so I haven't had the chance to try going outside without a jacket and gloves but I am hoping that once the temps get back into the 70s-80s that I will be able to go out without those things. I still have to wear a scarf almost all the time though because the sensitivity in my neck hasn't yet gone down. But that's one of the first places the RSD spread to last year after my block where as my hands and arms were the last...so I am still hoping that with time I will see improvement there as well.

Not really related to my tDCS treatment but a win for me on the RSD front anyway...I have finally succeeded in cutting pop out of my diet. It was my one big vice and obstacle in committing fully to the 4 F's diet that I have been on for a while now. Vitamin water, juice, and regular water...that's pretty much all I drink now and I'm okay with that. The vitamin water was the change that helped me overcome the pop and my caffeine addiction.

So things are actually going pretty well for me at the moment. Now if I could just get the whole work situation figured out and settled I would be batting 1000%.

Hope everyone else is doing well.

Wow Catra!!!!!

Better sleep and falling asleep when you wake up. So exciting!!!! Sleep was the first thing that improved for me. Short sleeve shirts?????? I am so happy for you!!!!

Everyone I have spoken with who responds to tDCS, without exception, has had improvement in the last areas of spread first. The toughest areas seem to be surgical sites. Interesting.

Has anyone seen any improvement in original surgical pain site or spreads to surgical sites like with Spinal Cord Stimulators?

Last night I woke up at 12:30 and never went back to sleep. Dead on my feet now but will use tooth picks to hold my eyelids open so I sleep tonight.

Since I got CRPS I am very sensitive to chocolate. Just before bed last night I had two huge brownies made with coffee added. Big, big mistake. The amazing thing is that I am not cranky. Since tDCS the crankies are a thing of the past.

I am so darn chirpy that I can't wait to get up each day, knowing that I won't face the incapacitating morning pain that made it so difficult to do my home PT program without tears.

I am still making gradual improvements. I am doing two forty minute sessions twice a day. I still don't have the booster thing nailed down yet. Anyone find any research regarding length of time between booster treatments?

Here's to short sleeve shirts for Catra!!

Better days are ahead for all of us!!

Tdcs=100% medication free for me
 

Update,

I have been officially medication free for three weeks. I had initially intended on adding back meds once I came off everything but decided to see if I could hack it med free.

I originally took 26 pills a day. Then I got down to 13 pills a day. With all of those meds gone I don't even have to take colace, which I just assumed I would live on along with the other meds, for the rest of my life. That was all pre-tDCS.

I am seriously considering adding back Low Dose Naltrexone after I do additional research.

My body feels so much better off drugs.

So now I am wondering if I will eventually be tDCS free.

Yes, I admit it, I am becoming very greedy!!!!!!!

Yes, I am also wondering if remission is possible!!!!!!!

I did not have one doctor who believed I would ever be off meds given the severity of my condition, so who knows what the future holds.

All I know is I am keeping out of ER's due to flares, which is huge because, although I was initially diagnosed by an ER doctor, I generally detest the way I am treated when I go due to a severe pain flare.

Now I am watching the calendar to see how many flares I get. I put a red x on those days and keep the x going for how ever many days the flare lasts.

NO X Marks for the month of April so far! Of course I am very careful about triggers but this time last year I had severe flares no matter what I did or did not due.

WHAT I WOULD LIKE TO SEE IF FOR THOSE NEWLY DIAGNOSED TO TRY tDCS TO STOP CRPS IN ITS TRACKS. IF I GET THIS KIND OF RESULTS FROM "OLD AND COLD" CRPS, WHAT WOULD A PERSON WITH A FRESH CASE EXPERIENCE???????????

If you are in the desperation mode, wether due to initial diagnosis or advanced CRPS. please consider tDCS prior to treatments that carry risk and side effects, with little hope of lasting relief.

There is no question in either my mind or the team of doctors treating me that at a minimum the progression of the CRPS has been arrested.

I wish what I have for everyone else!!!!!!!!!

Hi,

This is wonderful news. I am so happy for you. This is the goal I hope
for my daughter when she is able to try TDCS. I hope my question is not
to personal and I will understand if you do not feel comfortable to resond
but when you say you are off all meds does this mean the pain has been
reduced to a point where you do not feel the need for meds or does this
mean the pain is gone completely.

Of particular note I spoke with Doc Fugedy on Friday. I am also waiting
on family members to return from out of state. when they do I hope to
present a solution to the obtacles we are working through before TDCS
can be tried and will update on the site our progress.

:hug:Joydee

Not at all too personal Joydee.

I am indeed on no meds period. I still have pain and alodynia. What I don't have is the many additional components of CRPS that I had prior to tDCS: Tinnitus, on fire burning, spasms, extreme sensitivity to light, sound, vibration, inability to wear any clothing on my upper body for any length of time, severe gastro intestional problems, shooting pain, stabbing pain, dystonia, atrophy, tremors and I could go on and on.

Woud I sleep better with meds? Yes. The problem is that the only med that helps me sleep also causes tooth decay, which I cannot risk since a root canal ignited a spread to my jaw.

The most amazing thing is that I was able to reverse a serious spread with aggressive swelling, color change, burning, spasms and nail changes. Of all the doctors I have seen I have been told that nothing stops a spread, if indeed it is a spread and not just a flare. Two Doctor's diagnosed me with a spread and with a short period of time it was totally gone and has not returned. My leg feels totally normal.

Would I have less pain if I took meds? Yes. Narcotics really got the pain but they also had miserable side effects, not to mention the scientific fact that narcotics only increase neuropathic pain long term.

There are three things I have focused on since very soon after diagnosis. 1) Long term solutions as well as long term side effects. 2) treatments that do not just cover up or mask the pain. I have really not focused treating pain, rather I have focused on treatments that deal with brain reorganization-the root cause of the pain. 3) Since I got CRPS from trauma, and surgery spread it, I refused anything invasive.

This approach led me to tDCS. I continue to make progress, which absolutely amazes me.

Do I believe I will be cured? No

Do I believe I will see remission? I used to say "I hope for remission" or "I pray for remission." Now I believe remission is very possibly within my reach.

I used to fear the constant cycle of becoming worse. Now I no longer fear becoming worse. I do not believe that the CRPS is progressing, nor do I believe it has been frozen in time, like sleeping beauty, waiting to be awakened. (Although I know it could if I injured myself or had surgery) I believe it is retreating.

What I have learned about CRPS is that it is looking for reasons to spread and looking for reasons to retreat.

The problem is that most treatments do not focus on retarding CRPS but covering up pain while the CRPS marches along.

I hope this answers your question Joydee.

I so hope that your daughter has the kind of response to tDCS that I have had!!!!!!

Can't wait for tDCS
 

Deb and I are seeing Fugady this w/e and we are so excited to be among all the people hoping for some kind of improvement in our struggles with crps. I believe Deb and I have some big expectations for this treatment. We've already gone the Dr. Rhodes STS route in Texas so we know what it's like to place high hopes on any treatment only to be disappointed. We hope to bring back to our support group exciting news and to all of you. Ballarina I hope your friend finds some improvement in the trial she's joining. It's great to know others are doing all they can to bring add'l info to this disease. Hopefully she'll share her experience with us all. Catra, I don't think I've read where your rsd is. I have upper body with major skin sensitivity. So I was happy to read you are able to wear short sleeves. Is this due to tDCS? Joydee, sure hope you'll get to Doc Fugedy soon, we'll bring you all we can rom our trip. Talk soon. Have a great day.

My initial site of RSD was my left ankle but after a lumbar sympathetic block in January 2011, RSD spread to my entire upper body between my waist and my neck including both arms and hands. Since treating with tDCS, I have experienced a significant reduction in the sensitivity in my hands first and now my arms as well. My hands and my arms were the last areas that the RSD spread to so I can only hope that it is a sign that I will eventually have reduced sensitivity everywhere. The pain is still there and I still get the occassional flare (usually triggered by cold or air movements) but it is a lot less than before. I had to wear gloves and always long sleeves to protect my hands and arms (I wear a scarf around my neck to protect that as well because it is VERY sensitive to air movements of any kind and cool temps)...but now if the weather is a decent temperature and it's not too windy I can get away with no gloves. Same goes for around the house now...I almost never wear gloves anymore in the house except to get stuff out of the fridge/freezer or if I am answering the door or something.

Anyway...I am very very happy for you and Debbie and I will be praying for your success. Nothing would make me happier than to hear that you are both responders to the treatment and that you find relief in this.

I saw my doctor yesterday and she was very happy with the success of the tDCS treatments so far. Both she and her nurse were very impressed with how well I am doing, how good I look, etc compared to how I was when I first saw them a year ago. It has been a long journey but I'm getting there. What is great about my doctor is that she is very openminded and I know that with my success with tDCS that she will now consider recommending it to other patients with chronic pain. Like me, she is optimistic that with time I will continue to see a reduction in RSD related symptoms and pain. It will take time and I am sure there will be some bumps in the road...especially once I return to work (which it appears MIGHT be happening soon)...but I have never been as optimistic about the chances of remission than I am right now with the successes of tDCS. But even if things never get any better than they are right now in this moment, I will still be very grateful to tDCS and ballerina for introducing it to me and for giving me hope that things CAN get better.

Catra,

I am so happy for you! This is such wonderful news. Isn't it great when the doctor and office staff get wowed by our progress?

I too am hoping for an eventual return to work. My progress is still unbelievable to me. Although I am not yet to the baseline of where I was prior to the implantation of the Boston Scientific Spinal Cord Stimulator I am close. This is truly remarkable because given the incapacitating spreads caused by the stimulator, I am now wheelchair and walker free. Now I am working on getting off of the cane.

tDCS has given me a chance for not only recovery from the common failure and side effects associated with CRPS and Spinal Cord Stimulators, but I believe it is my only chance for remission.

If we can have this kind of response to tDCS I can only imagine what effects the newly diagnosed would have

Please share the detail of your plans to return to work when you can!

Hi Hampster and Deb,

I have received many inquiries regarding selecting a tDCS doctor. Several inquiries have specifically asked about my knowledge of Dr. Harry Schneider. Sorry it has taken me so long to respond to your requests. I was not ignoring your pm’s. Please forgive me-I have been a bit on overload with tDCS questions.

For what it’s worth, this is how I determine if I will schedule an appointment with a tDCS doctor, (or any doctor for that matter)

I begin with a review of the material offered by the doctor on his or her website.

Regarding Dr. Harry Schneider I immediately saw many red flags prompted by information listed or omitted from his website.

The first was his assertion that iontophoresis “delivers a very weak current to the brain.” That is incorrect. The design of iontophoresis is transdermal drug delivery. In order for an iontophoresis unit to be used for tDCS it must be modified. tDCS does not involve the use of Iontphoresis. ( delivery of medication to the brain or muscles.)

The next red flag was that Dr. Harry Schneider is not board certified in pain management. In fact, from his website we really don’t know what his credentials are , although some are buried under the “Autism” section.

It gets even more interesting. Dr. Schneider claims to have “advanced degrees in language and linguistics.” What are those degrees and from what institutions?

What do degrees in linguistics have to do with pain management and more specifically with the treatment of pain with tDCS?

Dr. Schneider refers to himself as a “medical specialist.” In what?

Dr. Schneider’s website has listed for some time that he is “about to publish” research on language and the brain. Why hasn’t he published it?

Probably the most disturbing thing is the Doctorate in ”Speech Language Pathology” that Dr. Schneider claims to have. He notes that he hasn’t had time to complete the dissertation and will “when he is able.” A quick on line check of the requirements of the Doctor of Speech-Language Pathology at Southeastern Nova University includes, among other requirements, “successful completion of an applied dissertation.” Dr. Schneider is claiming to have an advanced degree that he has not earned.

Dr. Schneider makes a fleeting reference to tDCS at the end of the Autism section of his website, claiming results based on his own “research.” In addition to the results of his proposed treatment for autism sounding too good to be true for me, as well as some of his treatments being readily available in self help literature on Autism, I wonder what the costs of these treatment are?

Most notably Dr. Schneider does not publish his “research” regarding the success of tDCS and Autism on his website. What type of research, what is his methodology, how many subjects, over what period of time? What exclusion criteria are used, to recruit subjects, such as subjects IQ? What conclusions does Dr. Schneider draw from his data.?

The final red flag is Dr. Schneider’s description of himself as a “neuroscientist.” Seems like a stretch to me.

Dr, Schneider’s section regarding headaches makes no mention of tDCS, which is curious because one would expect a neuroscientist to have basic knowledge of the application of tDCS to headaches. The stroke Rehabilitation section mentions that stroke patients “have already experienced noticeable improvement” regarding lost speech and language due to “new methods and “new therapies” but Dr. Schneider declines to name those treatments and therapies.

The above is only my assessment of one section of Dr. Schneider’s website. I decided it was not worth my time to review the validity of his published material, which, based on one abstract was less than impressive to me.

Lastly, the following quote from the website left me wondering what Dr. Schneider’s shtick is. “Dr. Schneider feels that if a patient has a condition that is brain related, such as Parkinson’s or Multiple Sclerosis, then chances are he is involved in its management…”

Based on my opinion of the content of Dr. Schneider’s website I did not continue my usual process of researching patient reviews (which do not necessarily sway me one way or another) and a background check of possible sanctions, (which also may not sway me one way or the other.) The very last step in the process for me is to call the doctor.

More doctors fail my process than pass it.

Based on the material supplied by Dr, Schneider I would not consult with him regarding the application of tDCS to anything.

I cannot stress enough the effects of pain-induced desperation on our ability to make the best choices for treatments and physicians.

Getting ahead of the desperation and submitting all doctor’s and treatments to the utmost of critical review is really the only tool we CRPS patients have to protect ourselves from physicians and treatments that can make us worse, can waste our money or can scam us.

The same obsessive use of critical thinking and ruthless research can led us to better choices. In my journey with CRPS I have found that the enemy is not ignorant and or greedy doctors, or questionable, useless or risk laden treatments, or even pain itself.

The enemy is desperation.

I am so excited that you both will be trying tDCS. I wish you every success!!!!

Wow...just...wow. Thanks so much for sharing your detailed assessment and your process for evaluating which doctors to treat with. I know I learned quite a bit from that and only wish I had learned it prior to treating with my last PM doc whose name I got off a referral list from my previous PM doc who was retiring. Hindsight though...it's always 20/20.

Debbie and Hampster...I am thinking of you guys and hope you meeting with Fugedy this weekend goes well! Best of luck to you both!

Hi Catra,

I can't tell you how happy your report makes me along with hearing all this
good news others are going to see the good Doc Fugedy. We still have some
details to work out but think we will soon be re-setting the appointment with
Doc Fugedy for the consult etc.

:hug:Joydee