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 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.

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....

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.