Trigeminal numbness

Posted by gregk @gregk, Aug 31, 2018

About 3 months ago I awoke with my tongue numb on the right side. The next day the numbness was all over the right side of my face. I've had a CT scan, MRI scan, blood work and I've met with a neurologist. No signs of palsy, MS…nothing. All my blood work is clean. The only symptom is that it feels like the trigeminal nerve on the right side of my face is numb. No pain, just numb.
I had some fatigue and dizzyiess for a bit. Then my PCP, with a consult from a neurologist, prescribe gabapentin. I feel that exacerbated my dizziness, fatigue and now double vision. After my visit with a neurologist he said that there's no reason to be on that so I weened myself off. I've been fine ever since. No fatigue, dizziness, or double vision anymore. But I still have the nerve numbness.
Anybody out there with the same? Any recommendations? Any doctors have a cure?

Liked by gregk

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

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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.

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Thanks Jennifer. I will look into that!

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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.

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@kraison1979

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.

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@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

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@kraison1979

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.

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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?

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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.

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@kraison1979

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.

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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?

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@kraison1979

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.

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@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.

Liked by rwinney

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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.

Liked by lioness, rwinney

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Good. Please keep us posted.

Liked by lioness

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@kraison1979

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.

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@kraison1979 sounds good. I hope you find a good neurologist to help you. Remember, the more information you give the neurologist the better he or she can help. So gather as much of your records as you can leading up to that surgery. The new doctor may do further testing for guidance. @kraison1979 hang in there. I have palsy of the trochlear nerve as a result of my ruptured AVM. The palsy is causing my double vision. Initially I lost my taste. It took over 2 years to get that back. It was totally unexpected. I don’t know how that happened. At the time I was on the Keto diet. I know the diet has neurological benefits. A friend who had tremors used the diet for weight loss. He noticed his tremors stopped. After a couple of months he got off the diet. That is when the tremors returned. I also had tinnitus prior to my AVM but I noticed that also disappeared. I can’t say the diet definitely attributed but I was pleased. Too bad the neuropathy stayed 😔.

Liked by lioness

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@rwinney

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?

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about 2-3 weeks after surgery. About a month after the surgery which took place i Gainesville, FL, I moved up to NY near family as my husband had passed away 10 months earlier. I needed to be near my family and very close friends that are more family than anything. I will get my medical records from Shands Hospital and follow-up here in Rochester, NY – hopefully at Strong Memorial Hospital.

Liked by rwinney

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@kraison1979

about 2-3 weeks after surgery. About a month after the surgery which took place i Gainesville, FL, I moved up to NY near family as my husband had passed away 10 months earlier. I needed to be near my family and very close friends that are more family than anything. I will get my medical records from Shands Hospital and follow-up here in Rochester, NY – hopefully at Strong Memorial Hospital.

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@kraison1979 Sounds like a plan. Good luck.

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@kraison1979

about 2-3 weeks after surgery. About a month after the surgery which took place i Gainesville, FL, I moved up to NY near family as my husband had passed away 10 months earlier. I needed to be near my family and very close friends that are more family than anything. I will get my medical records from Shands Hospital and follow-up here in Rochester, NY – hopefully at Strong Memorial Hospital.

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@kraison1979 when making an appointment with your neurologist, you may be able to sign a medical records release form at his or her office. Discuss this with your neurologist. The neurologist may be able to get the medical information needed to help you. Sorry to hear of your loss but I am glad you are amongst close family and friends. That makes a big difference in being around people who care. I wish you well.

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