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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   I feel lost and alone after the specialist appointment (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/104385-feel-lost-specialist-appointment.html)

cindi1965 10-03-2009 01:45 PM

I am soooo sorry that you had to go through this. It sounds almost like my story. Don't give up!! Almost all of us on here have been through this. I have been to so many doctors and finally I found a PM doctor that actually believes me. We are all here for you, when you're lonely, down, or just need to vent we will always listen. I always say that this board makes me feel better than talking to family members and friends. Good luck and big gentle hugs!:grouphug:

SandyRI 10-03-2009 03:59 PM

[QUOTE=fmichael;573736]Sandy - I had an in patient 5-day lidocaine infusion in Philadelhia via Dr. S. im Feb. 2004, which my insurance co. covered in full, notwithstanding the fact that I had at best minimal evidence of spreading. Although standards may have changed in the intervening 5 years, I don't know.

One of the nurses there told me that it worked for a strong majority of people (I've for forgotten if she said 2/3 or 3/4 - who then came back for periodic boosters). Unfortunately, I was apparently in the minority for whom it did no good at all.
______

Hi Mike -

I wasn't lucky enough to get the 5-day lidocaine infusion, only the 300 mg infusions which take approx 1-2 hours. I had 3 of them, and I noticed a very definite improvement, especially in my right leg where my RSD had spread, after the first 2. The facility where I am treated is only licensed to perform the 300 mg infusions. I really wish I could try a 5-day lidocaine infusion, and perhaps I will if the ketamine doesn't work. I have an appt with Schwartzman in June of 2010. I am really glad you brought this topic up. Lidocaine has fewer risks than ketamine. Do you happen to know what the success rate of the 5-day infusions are compared to one another?

I say that my doctor "only" recommended the lidocaine infusions for full body, but now that I think about it, it could be that he recommended them as the next step subsequent to my blocks, because despite the blocks I was still in pain. I remember discussing with him the fact that we had done 7 stellate ganglion blocks, and that the risk of the blocks vs. the return made it not worth persuing any further, such that it was time for another modality. For his pain clinic the next modality is typically lidocaine infusions.

Unless its too late, I should go back and change my post. Thanks for your attention to detail...you are the best!

Hope your weather is better than ours in the NE - its raining and damp, just plain miserable for a Saturday. Take care

XOXOX Sandy


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