I also have supra orbital neuralgia along with neuralgia in another set of facial nerves. Ive had some relief from injections like ur hubby but it has not lasted very long. I recently had bilateral Radio frequency ablation but it did not seem to help like the bilateral RFA to the sphenopallatine ganglion which did work very well for part of my pain.
My doctor also mentioned that there is a surgery that can be done to the nerve. I will be seeing him later today and will see what I can find out about this as I might also be going down this route. I will let you know!
I saw my headache guy earlier today. There is a surgery where this nerve is taken out of its channel. but it cannot be predicted ahead of time who will be helped or not. It can make w things worse...or better. He said that he is attending a conference in June where the guy that developed this procedure will speak. In the meantime, for me, Botox and a new med is what we decided on for now in my case. FYI
thanks for your comments. We were sooo excited when the first nerve block worked, but it only last 9 days. Each injection since has not lasted as long as the one before. Yesterday he had a significant attack, but then it went away. Let me know if you learn anything else about surgical options.
Has Botox been tried? I've heard a lot of positives about it. In fact my doc is working on getting approval for it from the ins company. Once approved I will have it done every three months. In the meantime when I learn more about this surgery I will def get in touch.
One of the issues with this nerve is that it stems from cranial nerve five and too much stuff can cause eye probs, droop etc.
Whoever has a success story and name of their surgeon, please email me at ***@**** for supraorbital neuralgia, then I will discuss with you details of my case. I had surgery to brow area in 2015, and in 2016, wasted a lot of time seeing neurologists, and specialist for nerve blocks and specialists who cudnt tell me what I had except to say probably scar tissue compressing nerves. It is believed all these injections made more damage to an already sensitive area. I live in Canada and will have to receive treatment outside of Canada it appears. Don't believe lies of how great Canada's medical is. It is free. Certain prescriptions and meetings, hospital visits. That's pretty much it. U can get your broken leg fix or even heart surgery but apparently in Canada, I can't be helped and I've looked everywhere. Grrrrr. Any way someone please email me with success story. PLEASE!!!!!!!!!!
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