Has anyone had a permanent nerve block for pain relief? My last appointment at Lenox Hill I went for assumption the AVM was growing back air a new one, they thought so based on physical presentation, but once they did the ultrasound there was nothing. I developed CRPS after my first embo, it improved since the initial procedure, but I have severe flare ups, my leg was purple my whole appointment with capillary refill so my doctor feels the CRPS is progressing and wants to do a permanent nerve block. The thought of not wanting to chop my leg off everyday is enticing but I’m nervous. Looking for someone who has had it done, that can maybe provide some insight.
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Hey, I am so sorry you are going through this. I developed CRPS after my attempted embolism so I really get what you are going through. In terms of treatment I personally have had IVRA (where they essentially isolate your CRPS and do a local anaesthetic infusion), a lumbar sympathetic block, and an infusion treatment. Unfortunately in my case these didn’t really help. But if you have any specific questions I will try to answer best I can (although I was sedated for the lumbar block, but I will help the best I can with it)!
You can also check out here: https://www.burningnightscrps.org/ as they have resources on CRPS
I had two sympathetic nerve blocks when it first started, the wound from treatment got severely infected and I was hospitalized the day I had my second nerve block so I honestly don’t know if it helped there was just so much going on and then I found out I was pregnant so treatment stopped. The doctor I was seeing at the time mentioned a spinal stimulator but we just never got that far and then everything changed so much with the pregnancy and my insurance changed so I wasn’t able to see him anymore. I’ve been just dealing with the flare ups, I take lyrica at night but it really doesn’t do much. I’ve never heard of IVRA, which of your limbs are affected? Mine is in my left lower leg from the knee down. Do you have issues with mobility? I feel like I can’t bend my toes most days and get like foot drop at times where I feel like it’s dragging behind me.