Connect
← Return to What Type of Doctor Diagnoses CRPS/Resource re: Treatment
Discussion
What Type of Doctor Diagnoses CRPS/Resource re: Treatment
Chronic Pain | Last Active: 15 hours ago | Replies (21)Comment receiving replies
@rivermaya34
Hi maya34. I am so happy to see your post today. I am suffering CRPS for longtime but conformed after four times Stellate Ganglion shot last year. I was told the first shot is to confirm the diagnosis and the following shots were treatment. But I have no response to those shots at all. My incidence was happened 10 year ago by doing a neck C6-C7 spinal steroid injection. The needle went too far to injured my nerve. I had to scream but the damage was done.I have been having left 5th, 4th finger pain since. I was treated again and again with the same shots for many years until Dec, 2023. My surgeon did C5-C7 fusion due to severe stenosis( But I never have a neck pain. That surgery triggered more pain on my pinky finger. Then I saw the hand specialist. He checked and according to the Budapest rules. He said I have CRPS. Then I went to Cedar Sinai in LA very well known hospital to see a Doctor who is familiar with CRPS. He said to his assistant that for sure I DO have this terrible disorder. I am under a pain specialist care. I am taking Morphine before. Since Morphine is not available in LA . He put me on Oxycodone 10mg Q6h. I also had Ketamine infusion 4 time with a little help. My doctor said the dose is not high enough. I will go back again. I heard one person told me that he had Ketamine infusion continue 5 days. He had no pain for one year. the another time he had no pain for two years. I think that is a wonderful outcome.
How are you doing now? I like to share the treatment with you since your doctor has the same disorder. Because CRPS is not well known disease. A few people heard but the treatment are limited too. I am living in LA, CA. I google it now, There are a little more clinic mentioned Ketamine infusion. Have you tried? What is your doctor's opinion?
Would you please keep in touch with me? Thank you for reading.
Replies to "@rivermaya34 Hi maya34. I am so happy to see your post today. I am suffering CRPS..."
Connect
@songfamily2025 Hey there friend! I'm SO sorry to hear of your ongoing challenges...what a difficult battle you are fighting, but you are very brave not to give up! As I was reading your post, I could *literally* feel your pain. Ouch! You are exactly right - CRPS (RSD) is known about, but underdiagnosed and not talked about enough. It's so complex, I realize, and very hard to get right because each individual is different and no case alike. I've heard so many mixed reviews about any kind of fusion surgery, especially the cervical kind like you had. I would be very hesitant to let anyone mess with my neck unless it was nearing life or death, or absolutely necessary, to say the least. I am very glad to hear you are receiving care - hopefully it's taking the edge off and giving you relief enough to function and enjoy life as best as you can. CRPS is definitely a "new normal." I never took morphine or ketamine, although Ketamine was next on my list to pursue. However, I'm waiting to see how this new track I'm on will pan out - plus, some outside factors have changed, i.e. less constants - but I'm very interested and have heard all good things about Ketamine infusions, including what you mentioned - the long-term pain relief, for however long that may be. There are some places here where I live that do it and I know my neurologist would be on board if I ever suggested it. He is a wonderful advocate on my behalf! I wish everyone could be under his care - he's the model Dr, honestly. Both he and my pain Dr's know about CRPS (my pain DR actually lives w/ CRPS, so it's very personal for him). Yes, of course - I'd be happy to keep in touch. I try to get on here somewhat regularly, but sometimes life gets in the way, so please don't take it personally if radio silence happens from time to time. Sending good thoughts and wishes your way!! Sorry you have CRPS, but glad in one respect because you are another kindred soul who can raise awareness and help others deal with this tough disease. You are an encouragement to me!