u/JessRae770

I posted the other day about looking into a new facility for nerve decompression surgery as my surgeon from Johns Hopkins is no longer with the hospital. Turns out, I was a little confused and my initial Plastic & Reconstructive Surgeon consult is leaving the hospital, but as far as I know, my second opinion is still there.

I still may look into The Florida Institute as my family and I may be relocating next year, however.

In any case, for some reason, I started thinking, has anyone had the nerve decompression surgery, and it made your life / pain far worse than it is now? I can’t imagine being in more debilitating pain than I have been in for the last 3+ years. It has taken a toll on me not only physically but mentally. In fact, I was hospitalized in a Behavioral Health unit for 10 days last year and much of it was due to the toll Occipital Neuralgia was taking on my life. Some days, I wish I wasn’t here and would be better off dead. I would never do anything to hurt myself. I have too much to live for with my littles. But the pain is so severe, it messes with me mentally and emotionally, and I can’t imagine having the surgery, and it being worse.

So, I’d love anyone’s honest answers to know if the surgery was worse or better for you?

I’ve been suffering from debilitating Occipital Neuralgia for more than 3 years now and have seen nearly 10 different doctors in 3 different states — some of it because I relocated during that time — but mostly because I could not get anyone to treat / diagnose me properly.

Although I live in NC, I finally found a surgeon at Johns Hopkins to do decompression surgery once my diagnosis was finalized with one final neurologist. Unfortunately, I just found out, the surgeon is leaving next month.

I am likely relocating to Florida sometime in the next year and realized there is a facility called The Institute of Florida (also called The Institute for Advanced Reconstruction) that does Occipital Nerve Decompression Surgery.

Has anyone had the surgery done there before? If so, what was your experience? Good? Bad? Ugly? I’d love all the details. Thank you so much for any insight you can provide.