Guidance needed to locate products you mentioned
 

I found the Activa Dose II and the wires at 3b scientific, but the sponge electrodes I cannot find. amrexusa does not list the product or using the item code #2-A103. :confused: So can you tell me where the last place you ordered it from, ect it would be appreciated. getting the md order will be the easy thing. After already paying thousands of dollars for meds, IV's , hyperbaric chamber, ect....we are willing to try anything. The no disposable ones are the ones I think you are using. Thanks, M:)

I found the electrodes today on Banner Therapy Products Part # 55-100 size 3 inches. Mine are reusable. I rinse the sponges and let them air dry.

Great appointment with my neurologist today!
 

I had not seen my neurologist in three months. He was amazed that my posture is almost normal, my balance has greatly improved, the CRPS sores that had been occurring with regularity have vanished, the allodynia has been substantially reduced, my sensitivity to noises and vibrations has improved, I have not had pain reaching above the level of 6 out of 10 when level 9 was not uncommon, my episodes of profuse sweating and racing heart rate have improved as well as GI issues, I can hold a pen, button my sweater, (which I can now wear for a few hours at a time) wear a ring on my hand, and most amazing, the claw hand is gone!!!!!!

My neurologist stated that he wished he could take credit for my improvement and stated that he had never seen this kind of improvement in a CRPS patient. He suggested that he would not have seen this kind of improvement with Ketamine infusions. He asked me about my equipment and treatment protocols because he would like to purchase a unit to treat migraines.

Just didn't have it in me to use my appointment to educate him on tDCS since I had other issues to discuss. I am so done with using my appointment times and co-pays to educate treatment members on the various treatment and meds that have helped me. I referred him to one of the tDCS treatment centers that offers training to physicians.

There truly is not much out there that can fix dystonia. tDCS addresses the root cause of neuropathic pain. It has interrupted the progression of the disease for me and greatly improved the quality of my life. This past summer I was feeling pretty desperate, not knowing how much more I could take. Given my remarkable response to tDCS, I believe that remission may be possible for me over time.

I truly hope others who feel similarly desperate will consider this treatment, particularly if the sense of desperation is causing consideration of risky and invasive procedures such as Spinal Cord Stimulators.

I hope this information offers hope to all!

Ballerina:

Great for you.

I love your attitude & I love this quote of yours:

Me too!! I spend half my time at a doctors appointment educating the doctor -- and then, of course, they charge for an extra long appointment time!!

I have been doing my research -- I have a physical therapist who is quite interested in these techniques (he is a big proponent of mirror therapy, etc) -- but I would like to use him for what he can do for me that I cannot do myself. So I am out there trying to research and figure out which device to buy, what electrodes, etc.

I have looked at the numerous of the recent publications on tDCS and high density tDCS devices that are under development. I noticed that at Spaulding rehabilitation Hospital (Beth Israel?) They are testing a high density tCDS device on mechanical allodynia and hyperalgesia -- which is which are some of my most debilitating symptoms. I would love to get some information on that experiment. information on the exact placement of electrodes for allodynia and hyperalgesia would be very useful.

I am also intrigued by vagal nerve stimulation. In the spirit of do what you can for yourself, I did run across a paper in a yoga journal where some dudes measured brain activity in a fMRI while people chanted “Ommmm”. Kind of makes sense – your vibrating your vagal nerve mechanically – like a Vegas nerve stimulator that is implanted, etc.

here is the reference (since I do not have enough posts on this forum -I cannot post Web references -- and apparently I cannot personal message people either):

title: Neurohemodynamic correlates of ‘OM’ chanting: A pilot functional magnetic resonance imaging study



I found this wonderful forum while researching tDCS…. you folks sure know a lot!!

voner

Hi Vioner,

Welcome!

Hope these suggestion help you on your journey.

1) To cut down on the frustration of physician education on your own dime and time try the following. When I needed a referral for my first tDCS treatment at Beth Israel I prepared a binder of pertinent tDCS
research material for both my neuro and pm docs. One binder was geared toward neurology and the other toward PM, with notes attached to please review prior to my next appointment. Prior to my appointments I called the office to inquire if the materials had been reviewed and if not I would need to reschedule my appointment. One doc had not so I rescheduled and no they could not charge me a less than 24 hour fee because I was prepared for the appt. and he wasn't. (Happily this doesn't happen any more)

Both docs reviewed the materials and although their levels of knowledge were at a basic level I got what I wanted-referrals.

2) Regarding the research you mentioned at Spaulding-I am assuming that the research is not readily available. I suggest contacting the lead researcher to express your interest in the research and request either a copy of the research or a summary of findings which they may release prior to publication.

Additionally, you may use any friends or associates connected with higher education or a medical school to get published research articles for you.

3) It may be useful to consult with a doc familiar with tDCS and its application for your particular diagnosis. I would in general be wary of PM docs unless they list tDCS on their websites. Most pm docs butter their bread with costly procedures. The more costly the procedure (thus the more lucrative) the less likely they will be to consider offering a low cost, extremely effective and non invasive treatment with no side effects. Please do not underestimate the big business of costly, risky and invasive procedures many with short lasting, damaging or no results, and the threat that tDCS poses to the ever growing medical procedures/pain management industry.

Best to you!!!!

ballerina:

Thanks for the information.

i'll keep digging.

I am a little surprised it should have so much luck with getting medical doctors to take a look at research you have prepared.

I do this -- but I have only had one medical Dr. should take a look at research before the appointment.......... I guess maybe I should try being a little more assertive.

Partnership with Doc is essential
 

Voner,

The first part of the equation is to select docs who are interested in developing partnership with patients. If you don't have that kind of relationship with your doc, or feel that you cannot, for whatever reason develop that kind of relationship, you will probably not be successful in getting him/her to review research.

This is a very slippery slope when it comes to treating a disease such as CRPS. It could also mean that you have a hammer and nail kind of doc. He/she is the hammer and you are the nail. He/she has a particular vent on your treatment, whether it be motivated by money (i.e. expensive procedures like spinal coed stimulators that come with a long, revenue producing feeding chain i.e. sales reps), or a lack of interest in learning anything new or state of the art, or an uneasiness with partnership relationships in relation to his/her patients.

Hope this helps!

This is so true. Until I started working with my current doctor I had never experienced this sort of doctor/patient relationship where it really felt like a partnership. I was lucky that I also had this sort of relationship with my physical therapist. To have those 2 key people on board and interested in learning about RSD and trying different treatments has made such a difference in my life. It has also helped me really feel like I have some control now over this RSD monster and am not just at its mercy and at the mercy of the doctors. Having that partnership with my treating doctor is truly priceless.

tDCS progress
 

Just a quick update of my treatment with tDCS. I recently had a very minor sinus infection that did not require antibiotics. To my surprise my CRPS symptoms returned with a vengeance. The return of a stiff claw hand was very scary. After having a brief pity party I surmised that my illness, however slight, ignited an inflammatory response that snapped the CRPS to attention, much like spreads of CRPS ignited by surgical procedures.

I am assuming that I was correct because soon after the illness resolved the CRPS flare subsided.

Hope this is helpful to someone!

Thanks for the update. As you've said before...the tDCS doesn't seem like it offers a "cure" for CRPS but has the potential for helping to control some of the most debilitating symptoms. I am so inspired by your journey and the success you have had. Occassional setbacks just serve as a reminder of why we fight so hard to beat this thing. I pray that through the use of tDCS as a treatment that people with CRPS find a tool that helps lead them to remission or at the very least to a quality of life they haven't been able to have before. Please keep us updated and good luck!