Trigeminal numbness

Hello @gregk -- Welcome to Connect. I'm tagging @JustinMcClanahan to see if we should move your post to the following discussion where you will be able to meet more members with similar health concerns:

Groups > Brain & Nervous System > Trigeminal Neuralgia*
-- https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/

John

Hi Greg,

I've had some issues with the trigeminal nerve too because of extreme muscle tightness on one side of my neck. It's a TMJ type problem and I was grinding out my fillings on one side because of this. With all of this, I also have thoracic outlet syndrome making my neck and chest tight and much worse on one side, and I had a spine disc problem and have had successful surgery for that. Since the spine problem has been corrected, the muscle spasms that cause this kind of trouble are much reduced. I think a physical therapist could help you who is familiar with cervical spine and TMJ issues.

Thanks Jennifer. I will look into that!

I too have ha trigeinal neuralgia surgery on my right side. When I awoke from the surgery, I was in the most excruciating pain. All they would give me in the hospital was tylenol. However, it has now been 15 months later, and my tongue is numb, I have blurred vision, the surgery site is still painful, and the right side of my face is still numb. Like you, I was prescribed gabapentin. I am currently taking 1200 mg twice a day. I am fatigued, have little to no appetite as I really cannot taste food. My PCP tells me it takes some time to get over this kind of surgery. I have had a number of different types of surgeries and while the surgery sites did cause some numbness.after the pain subsided, the numbness went away. I'm at a point where I think this is the best it's ever going to be. I don't know where to turn to now.

@kraison1979 Hello. I'm so sorry to hear your story. Do you feel surgery was the right move or still too soon to tell? I wish you well.
Rachel

Hi @kraison1979, sorry for your difficult time with the aftermath of your surgery. Is it possible you have an infection at the surgical site since it is still painful? Perhaps there is inflammation or scar tissue causing the deficits from the trigeminal nerve? Do the surgeons or physicians give any explanation? The surgery took place 15 months ago. How much time is needed to get over the surgery, and what does that mean? It takes over 15 months to heal, why?

I have contacted the university of Gainesville, fl where the surgery was done. I asked to speak with the surgeon & all I got was a nurse and basically was told "to deal with it' ns hung up the phone on me.

NOT acceptable. Call back, keep calling until you get a message into your Dr and schedule a follow up appointment. When was your last follow up since the surgery?

@kraison1979 It sounds like they are giving you the “brush off” treatment. I would ask for my medical records and seek another doctor for consultation in efforts to find answers since they don’t want to help. You want the records of the surgery for another doctor to review.

I do still have the address & phone # of where I Had my surgery done. Thanks for the advicee- I will try to get an appointment with a neurologist up here - now that I am living in NY.