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.
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