Hello @haach76 ,
No need to apologize. I welcome your questions. I want to shout my experience from a mountain top, to warn hurting TN patients, who are searching for solutions.
I had trigeminal neuralgia for 18 months V3 distribution of the nerve. My primary physician referred me to specialists 5 hours away from home because he said, “This is serious, the local neurologists only see this problem occasionally and I want you to be treated where they are up on the best medical evidence to treat.” So the team of neurologists at [identifying information has been removed by ModSupport] Hospital diagnosed me with typical trigeminal neuralgia and glossopharyngeal neuralgia with recent development of type II characteristics (moderate constant pain as well as intermittent exacerbations of severe pain). The only other health problem was hypothyroid, considered unrelated. They prescribed Tegertol and Percocet. The Tegretol was a miracle for me; it stopped my trigeminal nerve from misbehaving, and I did not need Percocet. I had side effects from Tegretol, it made me feel drunk, slur my words, confused, emotional, staggering, trembling hands and dropping things, vomiting, terrible short term memory, vivid dreams, anxiety attacks, just terrible. But the neurologist assured me and my husband that as my body became accustomed, the side effects would minimize. So I kept taking it and happy to put up with side effects, just for the relief of pain. But then I got a rash. The doctors said I must stop taking it. I argued maybe the rash will go away. So they did blood tests and concluded if I keep taking Tegretol, it would kill me. By that time I was so ill from taking Tegretol, I had to give it up. The rebound pain after stopping Tegretol was worse than before, plus, I still had all those neurological side effects for a long time after stopping the medication. I was referred to their top neurosurgeon Dr. [name removed by ModSupport) . He looked at my records and said he would perform a microvascular decompression of the trigeminal nerve. He told me and my husband that he can fix this, that I can go back to work 2 weeks after the surgery. I asked [the doctor] are you going to do a MRI to see if there is a vascular body impinging the nerve. No, he didn’t need it. He does this all the time and he will find it in surgery. I said to my husband after that meeting, [that doctor] is so arrogant and he scares me. My husband says “He’s a brain surgeon, what do you expect?” My husband and I researched the surgeon and the MVD surgery. We concluded this was the right decision because MVD is the “gold standard” treatment. [The doctor’s] public reputation and credentials looked excellent on the internet. We found he is the top professor of neurosurgery at [the university]'s hospital. We watched testimonials on YouTube, and read reviews from patients that had the MVD, and he seemed wildly successful.
I was in brain surgery for 30 minutes, my husband and family waiting to hear news. But instead of hearing from the surgeon, my husband got a phone call to the waiting room, from an intern who said, she’s in recovery, [the doctor] did not find a vascular body on the nerve, so he did not do a MVD, he cut the nerve a little instead. My husband said WHAT? We did not want the nerve damaged, that is not what was discussed. What is that going to do? The intern said he didn’t really know, its kind of experimental. My husband said, You are experimenting on my wife? No no I didn’t mean it like that and the intern got off the phone.
I was in recovery all day long because I was not stable enough to take to a room until that evening. I was in so much pain a team of anesthesiologists administered ketamine to put me in a hallucinatory state and shut up my screaming. My family took turns staying with me in my room 24 hours until I was released to watch over me while I was having seizures and hallucinating, not knowing who or where I was. My family tried to get a straight answer about what he did while he was in my brain and they would say the surgeon has not finished his operative notes.
The State of Florida recently decided that I am permanently disabled and will begin receiving SSDI. The State of Florida has said that I am not disabled from the time I stopped working from trigeminal neuralgia, but I am disabled from the day of surgery when I acquired a brain injury that has left me with many neurological problems, epilepsy is one of them.
Much later we found out that he performed a partial sensory rhizotomy on my trigeminal nerve. After rhizotomy, medical records say “all is done”. Meaning doctors will not do any other procedure for trigeminal pain after the surgeon permanently damaged it.
We went to follow up appointment with [the doctor]. He said I would not be able to work, all that is left for me is pain management. He did feel that the surgery was successful because I had a small amount of numbness. He said that this happens in 1 out of 5 times he goes in to do the MVD. He cant find the vascular body so he does a partial sensory rhizotomy. He said that he apologizes for not fully communicating that before surgery. As for my new neurological problems, that is not his area, I would need to see a neurologist about that. He only does neurosurgery, then he is done with that patient, so no need to call his office or ask any further questions.
@haach76 , you can look him up on YouTube. He just did a new PR video. He is famous, he owns an airplane, his children are successful, he is rich, he has tenure and political position, he will tell you all about how wonderful he is. He also has sovereign immunity under the umbrella of a teaching hospital.
I may have a brain injury, but I recognize bait and switch, lack of legal consent, medical battery. I believe he performs the rhizotomy so that he can bill for the procedure, as opposed to billing for a lower paying exploratory craniotomy. With our medical system, doctors are rewarded by the corporations they work for financial gain instead of patient outcome. The hospital has shown no interest or care in my outcome, and yet they are protected with sovereign immunity as a teaching hospital.
Brain surgery is a big deal for the patient, but a bigger deal for the hospital and neurosurgeons who perform them because its their biggest money maker, next to cardiology.
Now I apologise for such a lengthy answer. But the story and context matter very much to me.
January 17, 2014
[identity and location of doctor removed by Modsupport]
He said my complications are not his concern.
So beware
