Trigeminal neuralgia misdiagnosed!!!

About seven years ago, I went to the ER with horrible facial pain. The ER doctor came in and diagnosed me immediately with trigeminal neuralgia, he didn’t do any tests, he just spoke with me in reference to my pain and diagnosed me. Once I was diagnosed, even after visiting multiple neurologist, it was never even talked about whether I might have something else. The pain got so bad over the next couple of years, that eventually I saw a neurologist in Sarasota and signed up for the decompression surgery. When I was first told about it, it was made to sound very simple. It was so much more than I thought, the numbness that occurred after the surgery was very annoying, and the pain not only did not go away, but it actually got worse. I saw acupuncturist, ENT doctors, other neurologist, I even went to the Moffitt clinic and spoke with a neurologist because my son is a patient there and they knew what pain I was going through. The Neuro surgeon at Moffitt refused to discuss a second surgery with me because he could see no indication of the nerves hitting on my MRI. They knew I was in pain he just felt that a second surgery without better indication of the trigeminal was out of the question. He had done both my sons brain surgeries for his cancer and so I completely trusted him. However, my pain continued to be horrible, I was in so much pain, I could barely lick my lips. It hurt to drink water. I couldn’t speak, it obviously affected my work. I then went to a neurologist who was doing the surgeries at another hospital in Gainesville. The neurologist there read my file, and quickly determined that I should have surgery again. I sat in his office crying, asking if there was any possible way I did not have trigeminal neuralgia? Since the first surgery didn’t work, was it at all possible it could be something else? His response, was that the first surgeon just did not do it right. I then agreed, even though I was rather anxious, which is totally not me, to have a Second surgery. Again, I came out of the surgery in more pain, if that was even possible, then before I went in. I continue to suffer for at least another year, dealing with my sons cancer it was hard to put much time into my issue. However, at one of my sons appointments, the doctor up there suggested I go see a specialist that treats and trigeminal neuralgia at John Hopkins University Hospital in Maryland. I called, the doctor read my file and agreed to see me my husband and I flew up there, and went and saw the neurologist there, who after speaking with me looking at all my information, enlighten me that he felt I had been misdiagnosed. He wondered why from day one I was never sent to see an oral surgeon? And all the times I asked every doctor, everywhere, not one person suggested I see an oral surgeon. I went to every doctor, every institution, that any physician had suggested with the hopes that I would find some relief for my pain. Obviously, had I been sent to an oral surgeon I would have went. I flew back to Florida, made an appointment with an oral surgeon in Bonita Springs, he shook his head, said he never heard a story like mine. They fitted me with this outrageously expensive mouthpiece, and the pain went away. I was on the highest dose of gabapentin and carbamazepine you could take a day, I couldn’t remember peoples names, dates, the basic information because my poor head was so fogged over from the medication. The oral surgeon told me I had the worst case of TMJ possible. I should’ve had my jaw broken, my teeth aligned, I am in my 50s, and he said because my alignment is so bad that’s what started the pain. I wear this brace all the time, we have still talked about breaking my jaw etc., but right now I am not in any pain. I do not take any medication whatsoever. I also removed most carbs, and gluten from my diet mostly because I wanted to lose weight, but it appears it has also helped. Anything that involves any inflammation, does have some direct connection to all those nerves in there so of course it didn’t hurt. I encourage everyone to see your oral surgeon, and see a really good one, one with a lot of experience who has seen a lot. After my second brain surgery, the numbness is all along the right whole side of my face, part of my lip, and part of my tongue. It goes up behind my ear. Obviously it was never even necessary. I wish everyone the best of luck with your situation, please be sure you are diagnosed correctly from the beginning. Once that ER doctor labeled me as trigeminal neuralgia, my symptoms fit that profile, no one would even consider it wasn’t something that I had. To me, I feel like I’ve been through a miracle. Best of luck to every one

Donna

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