Diagnosed with Trigeminal Neuralgia

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Aloretta Dethly
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Re: Diagnosed with Trigeminal Neuralgia

Post by Aloretta Dethly »

I had my 6 month checkup with my neurologist last week and he referred me to a neurosurgeon to talk about options. I was surprised to be able to get an appointment only four days later. I had that appointment this morning. The neurosurgeon said that Gamma Knife surgery could be helpful for me but that he was reluctant to consider Microvascular Decompression because no compression of my Trigeminal nerve was present on my MRI. His opinion was that my problem may not be vascular (i.e. no vessel pressing on the nerve) and it may be related to MS. Although my MRI showed no lesions on the brain and my neurologist doesn't think it is MS, the neurosurgeon was leaning that way because of my age. He said more often than not anyone younger presenting with Trigeminal Neuralgia has it because of MS. He gave me the name of another doctor that has a special interest in Microvascular Decompression if I wanted a second opinion on if that surgery would be right for me. Otherwise he said it is my choice whether I want to pull the trigger and get Gamma Knife done or wait and see if I can maintain on my current medications. I started on Cymbalta at the end of January but it hasn't helped with the pain at all. The neurologist didn't want to increase my Gabapentin either because it makes me so tired.

I'll take some time and think over what I want to do. This is exhausting.
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Aloretta Dethly
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Re: Diagnosed with Trigeminal Neuralgia

Post by Aloretta Dethly »

I had a pretty sudden development two days ago. I got a call that the neurosurgeon that specializes in TN/MVD had an appointment open up and I left work to go. I was not prepared at all. He spent a lot of time with me going over my symptoms, progression, treatment, imaging, and what he could do for me. He told me he was at Vanderbilt for twenty years and in that time did the MVD surgery between one and three times a week. He is confident I have a compression on my nerve causing this pain (he seemed to see it on the MRI) and says the surgery has a great success rate and doesn't damage the nerve like the Gamma Knife procedure does. He's been at this Neuroscience Research Institute for just under two years.

I was not expecting at all to be told that brain surgery was my best option.

He put no pressure on me for an answer and said to come back in three months or whenever I felt I needed to. I can always just continue my medications and see if it gets worse.

I talked it over with my parents and they didn't really say one way or another. I really wish I'd had time to take one of them with me so they could ask questions. I don't know at this point what I am going to do. It really seems inevitable that I'm going to have to have it done, it's just a matter of when.
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Laura Ferguson
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Re: Diagnosed with Trigeminal Neuralgia

Post by Laura Ferguson »

Glad you may have another option, and that you can take some time to decide.
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Stormy Peak
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Re: Diagnosed with Trigeminal Neuralgia

Post by Stormy Peak »

I hope that soon, you can have something done to relieve you of the pain....and get you off the meds...which all seem to have some kind of side effect that isn't good for the body in other ways.

Sorry you are having to deal with all of this.

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Darcy McBride
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Re: Diagnosed with Trigeminal Neuralgia

Post by Darcy McBride »

I hope one of these options is the best for you, and will relieve your pain! Which ever option you may choose, I will pray it will work for you, and you will be off the meds as well.
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John Nicholson
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Re: Diagnosed with Trigeminal Neuralgia

Post by John Nicholson »

Hi aloretta
Whichever option you choose I hope it works out for you.
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