[Leggiesmcb]

Hello all!
About 1 month ago I had my 2nd nerve stimulator trial. The first was unsuccessful as I received sensation in my all my limbs (my RSD is located only in my left arm). They presumed the lead may have moved… but after checking all was where it should have been. Anyways, my second trial produced the exact same results but gave stimulation all the way up through shoulders and ears. And I was not getting it in the right points in my arm. It was like the stimulation skipped the areas containing the RSD. After hours of tuning 2 days after putting it in, my pm Dr. took it out (they used an anchor this go round to ensure no lead movement. He told me he was going to use 2 leads then waking up afterwards the St. Jude rep. said he just used one because he thought he had covered the area. That was frustrating to me in the sense that he sent me to a surgeon to see if I should get a 2nd trial with two leads… so I thought that was the entire point of a second trial.) concluding that stimulators are not for me. No the rep said in her 28 years she has never seen something like this. Only sensation into the entire body if that was what was intended. Has anyone had any experience like I did??
My pm Dr. said has nothing left that he can perform so he is sending my for a nerve scramble. He did bump my gabapentin from 3200mg to the max 3600mg. My pain meds keep going up as my RSD gets continually worse. I am wondering has anyone had a nerve scramble and how does it work? Have you had good responses to it? Any information or experiences about the scramble or if anyone has had the nerve stimulator work like mine did I really would appreciate hearing about them. I have many other “unusual” health issues and being 21 its frustrating to keep hearing that doctors don’t know what to do with me and I am such a mystery because I feel so alone. People who don’t have RSD really just don’t get it. My mom and I wish to go into my drs like the endocrinologist to get a diagnoses to know hear we are dealing with and how to combat it but I somehow have continually been landing in categories all by myself.

[Littlepaw]

Hi Leggies,

You have been through so much lately. It gets so tedious going to doctors and trying things only to have them not work as hoped. I am sorry your stimulator trial didn't go better. It must have been very frustrating about the leads.

It sounds like they are thinking to refer you for Calmare. I could be wrong on this but Mayo did a study on Calmare "scrambler therapy" for neuropathic pain. They got good results but it was a small study. As with everything, results vary. I don't think it can be used when CRPS is full body. There is a current thread just a few down on the page about Calmare. You may want to check if that is what your doc meant. Do your research and make sure you get an MD experienced with CRPS if you go ahead. I think there may be other practitioners beside MD using these. IMHO Since you are "special" I would go with the person with the most overall training and not a chiro or something.

I hope someone can hop in with an answer on the SCS. There is an SCS sticky thread under the "medications and treatments" section.

Thanks for letting us know how the trial went. Keep up the fight and keep trying new things, you never know when the healing is going to kick in. I am sending hugs and healing love,

[RSD ME]

hi leggies. i'm sorry the trial scs didn't go better too but don't give up hope. there are other treatments out there for rsd. i agree with littlepaw that you should make sure to get an MD experienced with rsd and also maybe an experienced PM dr and neurologist. i will keep you in my prayers that you find some relief from your pain soon. soft hugs my friend.

[Leggiesmcb]

Originally Posted by Littlepaw

Hi Leggies,

You have been through so much lately. It gets so tedious going to doctors and trying things only to have them not work as hoped. I am sorry your stimulator trial didn't go better. It must have been very frustrating about the leads.

It sounds like they are thinking to refer you for Calmare. I could be wrong on this but Mayo did a study on Calmare "scrambler therapy" for neuropathic pain. They got good results but it was a small study. As with everything, results vary. I don't think it can be used when CRPS is full body. There is a current thread just a few down on the page about Calmare. You may want to check if that is what your doc meant. Do your research and make sure you get an MD experienced with CRPS if you go ahead. I think there may be other practitioners beside MD using these. IMHO Since you are "special" I would go with the person with the most overall training and not a chiro or something.

I hope someone can hop in with an answer on the SCS. There is an SCS sticky thread under the "medications and treatments" section.

Thanks for letting us know how the trial went. Keep up the fight and keep trying new things, you never know when the healing is going to kick in. I am sending hugs and healing love,

Thank you for all your encouraging words and for ALWAYS replying to mine and others threads. You are incredible. I will most certainly research more of the scrsmble. You know I did read the post yesterday and it didn't seem to me that Calmare didn't have such great results. Have you used calmare?

Also about the "sticky " posts, I don't understand what they are and how I would get involved with ghem. Any chance you could clue ke in? That would be a great help if you don't mind!

I can't tell you enough what a help you are. Thank you for devoting your time to keep us all informed/encouraged. You are in my prayers. Best wishes to you!

[Leggiesmcb]

Originally Posted by RSD ME

hi leggies. i'm sorry the trial scs didn't go better too but don't give up hope. there are other treatments out there for rsd. i agree with littlepaw that you should make sure to get an MD experienced with rsd and also maybe an experienced PM dr and neurologist. i will keep you in my prayers that you find some relief from your pain soon. soft hugs my friend.

Thank you very much for your advice and kind words. It is so wonderful to have your gracious support. I agree finding doctors who are knowledgeable in RSD can be quite treacherous. It is pretty viral so that a procedure does not cause spreading. I do get very fearful of that. I will pray for you. Keep your spirits up, you are so strong and I can just tell ftom what I have seen of you on this forum.

May God bless you. I wish you all the best,

LeggiesMcB

[Littlepaw]

Gosh Leggies thank you for the kind words and prayers. It is a blessing for me to have gotten to a place that I can offer encouragement. A year ago I could not have done so.

Sticky threads are threads that stay at the top of the individual forums so they don't get lost. They will say "sticky" and you can respond to them just like any other thread. The SCS sub forum sticky is under the "Medications and Treatments" page on the main neuro talk index.

I have not tried Calmare though I am open to it. The nearest provider is 3 hours from me. The two week commitment is tricky. I am not a 100% sure with my complicated nerve injury and its delicate repair if stimulation would be good or not. I went with the ketamine to start since I could get it at home and it has no unknown impact on my repair.

We had a recent poster who went to RI in June for Calmare. I heard from her the first week and she was getting results. I did not hear from her after that and she has not been back on. I hope she is out enjoying the world. She did a lot of research before going to RI. Another provider was in a nearby state and the testimonial videos seemed IMHO to be a little suspicious due to the hallelujah factor. I had a hard time believing someone could Be in a wheelchair four years and just walk normally with no gait difficulty at all. My first round of five months on crutches left my gait in need of concentrated work even though I was super active and fairly athletic.

This doesn't mean I don't think it would work. The Mayo study was positive. It definitely provides results for some. I would like to see more studies. I do believe individual response is highly variable to any treatment and we must honor what works for us without causing harm. I try to keep an open mind but also a degree of suspicion. Some of the new technologies, laser, shock wave, Calmare, etc. have practitioners making crazy sounding claims. One Calmare site said the system uses and "artificial neuron" to send the signal. I think they meant the sticky pad! LOL.

I think ultimately it is worth trying if someone has the resources. It seems to be minimal risk. If the procedure caused any pain I would stop the course. It is certainly worthwhile exploring and getting information. You can always get a consult with a provider and maybe try a couple sessions. If I had not kept systematically trying new things over the last two years I would not be as improved as I am today.

I hope you have a good week Leggies. Thanks for jumping in on the recent College thread and giving such sound advice for balance and self care. Those are good reminders for all of us.

Sending hugs and healing vibes,