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.

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....