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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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10-27-2014, 06:41 PM | #1 | |||
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Junior Member
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Has anyone tried or known of anyone who tried Calmare for facial pain? it is an off label use of the technology and I found some adverse event reports on the fda site about it where people got worse. They didn't say what type of pain was being treated.
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10-27-2014, 08:13 PM | #2 | |||
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There are past posts on Calmare, pro & con, you can find them with the search tool here- http://neurotalk.psychcentral.com/search.php
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10-28-2014, 02:25 PM | #3 | |||
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Jo*mar, Thank you for your reply. I had looked through many of the posts. Facial nerve pain is an off label use of this treatment and I didn't see any posts that included that.
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11-12-2014, 09:32 PM | #4 | ||
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I had Calmare for my CRPS in my feet and hands by Dr. D'Amato at Calmar Pain Relief Therapy in Rhode Island. I know that he had patients with facial pain, perhaps trigeminal neuralgia but it might have been other facial conditions. I was helped tremendously by Calmare and would never go anywhere else to receive treatment. Have you connected with him? If not, there is web site for his practice and it might be worth checking out! |
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"Thanks for this!" says: | bluekrikit (12-12-2014) |
11-16-2014, 07:34 PM | #5 | |||
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I was emailing him and he told me that this procedure is for cases where the injury has healed but the brain thinks it has not and is still transmitting pain signals. When I read that, I emailed a doctor who was involved heavily in my case because I was concerned that my injury has not healed and likely never will since the nerve was embalmed by the root canal material. I also looked in the FDA adverse event database and saw some reports where the procedure made people worse and one specifically was one of his patients. He had told me that he had no cases where anyone got worse. I asked him about it and rather than explain it, he ranted about someone who was bad mouthing the procedure on Yahoo and appeared as if he did not believe that I had talked to "my doctor". He told me he would not accept me in his practice. I emailed him back and apologized if I insulted him and told him what drove me to ask questions to my doctor and that I was petrified in making this worse and I wasn't sure if my injury would still be transmitting pain signals. It was his comment about the injury being healed is what caused me to do some additional digging about the procedure. He never replied and probably never read it.
I later read on this forum about many people who were only put into remission for a matter of months. This particular doctor did not say this, but another one told me that if it worked it would be permanent. I was less than impressed with his lack of professionalism and it left me feeling like anything but a good outcome from the procedure would be met with the same attitude. A shame since I thought this might be of help to me. Personally, I feel like it is a patient's right (and obligation) to research and ask questions...but I guess he doesn't think so. Better to find out now. If this treatment is really valid for my problem, it will catch on, there will be more data about it and more doctors will offer it. |
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"Thanks for this!" says: | bluekrikit (12-12-2014), Vowel Lady (11-20-2014) |
11-16-2014, 08:26 PM | #6 | ||
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Magnate
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I generally respond well to stellate ganglion blocks and they have helped me put spread into my face into remission for a year before it returned. I have to be very careful what I eat to not restart the pain in my jaw, teeth and tongue. I am set for another series of sgb that will hopefully work as well.
Not everyone is a fan of them, and it's a good idea to have a gentle massage afterwards to disperse the meds in your neck... Facial pain is the worst IMO. It hurts to talk, to eat, and when in a bad flare, to breath! |
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"Thanks for this!" says: | Enna70 (01-22-2015) |
11-23-2014, 06:55 PM | #7 | ||
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I'm so sorry about your experience with Dr. D'Amato. I'm shocked! I have never experienced anything but the utmost professionalism from him. You have every right to do your due diligence in making decisions about treatment options. Calmare is done by MDs in other states and I hope if you are still interested in it, your experience with Dr. D'Amato hasn't turned away from me. |
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12-02-2014, 05:02 PM | #8 | ||
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01-11-2015, 02:22 AM | #9 | |||
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Hi pained,
I'm sorry to hear of your facial pain! I was just checking in on this board because I haven't been here for a while and saw your post. My daughter has had really good results with Calmare, but the RSD started in her foot. You're right, the remissions sometimes only last months, but with RSD, it's well worth it. Her remissions are currently about 6 months, but during these remissions, she is pain-free and completely off drugs. I don't know about facial pain and Calmare, but I've always heard, too, that the injury MUST be healed for Calmare to work. But I thought I would post because I'm actually away from home right now with my daughter, getting dental work done back in California with our old dentist (we moved to Arizona 8 years ago). She's had a lot of pain, and had a root canal done and was going to get further surgery (she broke her front tooth on a rock while camping) but when he did the x-ray, the root canal looked really good, so he started experimenting working on her bite. He took about an hour and a half, making adjustment after adjustment, and she is SO much better. He also found a cavity that had been done wrong and fixed that. I wish you the best of luck with the facial pain issue, and perhaps look into bite adjustment? Anyway, I just thought I'd throw this in FWIW. |
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