hi again alaina. i just wanted everyone to be clear on my last note on this thread regarding your dr and scs and ketamine. i did not say your dr wasn't knowledgeable on rsd. he does seem to know about various treatments out there for rsd. what i said was that their may be MORE knowledgeable drs out there who may be able to help you manage your pain better. the reasons i said this was because first of all your dr took so long to get back to you when you were in pain after implanting the trial scs. IMO a good rsd pm dr would either have called you back asap or had a 24 hour hotline available for their patients in case of emergency. the second reason i questioned his knowledge was because he said that rsd doesn't spread. though drs may disagree on the measure of rsd spread, rsd can in fact spread and he is incorrect in saying that it doesn't. there is an abundance of research done that proves it spreads which you can find on this forum and online. the third reason i questioned your dr was that usually with rsd a knowlegeable dr will try the least invasive procedures first in order to avoid any spread or infection of rsd. first meds are tried (sometimes including gabapentin, narcos (which may need to be adjusted at times) and short term prednisone.) and then usually nerveblocks are tried up to usually six times yearly depending on your insurance. then there are other non invasive procedures like pt, aqua therapy, heat, tens units, calmare, hbot. then there are the more invasive procedures like accupuncture (though that caused spread for me but everyone is different). then there are iv procedures like ketamine which i believe are offered at places like drexel with dr. schwatzman (i am not sure if this is the correct university or dr for ketamine, but i think it is). then their is the trial scs and then the permanent scs. then their are pain pumps used for the really bad cases of rsd (i believe that morphine is sometimes used in these). your dr did the scs before ketamine. though i am not a dr, i would have suggested the ketamine before the scs because it is less invasive.
and like i also said in my last post that though i read of people who had no help from ketamine. i have also read of people who have had short lived positive effects from ketamine and who said that that drug is not easy to tolerate. that doesn't mean it will be that way for everyone who tries it. what i've learned from myself through the five and a half year of living with rsd is that not everyone responds the same to treatments and what might help me might not help someone else. and what helps someone else might not help me. it takes alot of trial and error and a good pm dr to find what will bring you the most pain relief. i am sure your dr is trying everything he can to help you but with rsd being so tricky to manage you just need to be extra careful (IMO) of what you try and who you try it with. i am not a dr but have had spread due to some procedures and i just don't want that to happen to anyone else suffering with this disease. i also don't want to discourage anyone from trying something because i may not agree with it. i am only saying to do your research on rsd and the different treatment options available and discuss it with your dr. then weigh the pros and cons and make an informed decision. ultimately the decision has to be yours and your alone. you have to be comfortable with what you decide and in time you will learn to trust your gut and know what works best for your individual needs. i hope this clears up any misunderstandings. i think everyone here on NT is awesome and all of us living with rsd are true warriors who need to stick together to help manage our pain and hopefully find a cure someday. i wish you all a pain free as possible night tonight. soft hugs to all.