Trigeminal Nerve Recovery - Numbness

[kmr1969]

Hi all,

I just passed the 8 month anniversary of my surgery and things continue to go pretty well for me with the exception of the greatly increased numbness in my face post surgery versus pre surgery.  To be clear, my face works perfectly fine with the exception of my right eye which blinks slightly more slowly than my left eye, but the majority of the right side of my face is very numb.  I can feel it but I would have to say the sensation is about 50% less on the right side of my face when compared to my left.  The numbness occurs both on the outside of my face and the inside of my mouth, but seems a little worse on the inside of my mouth.

I started chewing gum on my way to work each day because when I eat, I chew almost exclusively with the left side of my mouth - to avoid biting my tongue and also because my taste buds seem to work better on that side.  I was getting concerned that if I didn't keep exercising my muscles on the Roth side of my face that maybe they would stop working properly.  Been doing this for about 2 weeks and no difference in the numbness.

It gets tough to measure/keep track, but it seems like the numbness has gotten worse lately and I wonder if that could be because I am exercising everyday - doing the P90X program - which is fairly intensive and involves a lot of jumping around.  Tonight is day 90 for me so I won't be doing that again for a while.

Any advice on what I should be doing, should not be doing, or should I just expect this to be my new normal?

Thanks everyone,

Ken

[LakeErie]

Ken, I am at 21 months post-op and my pre surgery facial numbness and tingling persist. That said, the area affected is less than what I experienced before the removal of my AN. The inside of my mouth and tongue are still numb, but I no longer experience the scalded feeling. The area from chin to along my jaw line is primarily involved. I did have numbness higher on face before surgery and immediately after as well. I am resigned to to it continuing as I am almost at 2 years. Good luck.

[phantagrae]

I have had facial numbness as the primary symptom of my AN for a little more than a year now, though I have not yet had my treatment--I'm due to start FSR treatments this Monday.

One thing my doctor told me is that the numbness may never go away.  Now, I'm not having my tumor removed, like you would have had during surgery, but if the tumor damaged your trigeminal nerve it may be that it might not go away, or it could take a while for the nerve to recover.

I'm certainly no expert and I'm sure there are folks around here to have more experience or insight than I do, but one you mentioned rang a bell for me.

I have noticed that when I'm well rested, first thing in the morning or right after a good nap, that my face and the inside of my mouth feel a bit less numb, a bit more normal.  It certainly doesn't go away, but I feel that it's not as aggravating, especially inside my mouth and in my eye, which has been affected.  My scalp feels less numb, my eye feels better, my teeth and gums feel less "off".
So, it could well be that the intense exercise is adding to how you feel and that making sure you get a good night's sleep, or taking the occasional nap may alleviate some of that.

I don't know that you need to "exercize" your mouth by chewing gum.  I think that as long as you're moving your jaw when you chew, even on your unaffected side, that you won't lose muscle tone.  I try to continue to chew on my affected side simply because I don't want to have more wear on my good side, and I just kind of ignore the odd taste sensations, but it's true that it seems easier to bite your lip or cheek on the numb side.

But try paying attention when you first wake up--if it's better then, maybe you can avoid over-taxing your body.  I'm not talking about avoiding exercise, but simply making sure that you get plenty of rest to let your body continue to recover.

Good luck!

[kmr1969]

I absolutely do notice that the numbness is less in the morning when I wake up, sometimes when I am in that barely awake place it almost feels normal.  I also still get all sorts of weird feelings, tinglings, etc. primarily on my tongue throughout the day, so I am hopeful things will continue to get better.

After surgery I mentioned the increased numbness to my surgeon and he remarked that there was nothing remarkable about it during the surgery.  Obviously the nerve had been affected by the tumor before surgery and after the tumor was removed and the nerve moved back to its normal orientation it was affected again.

Thanks for the feedback. 

[Unjaded]

I'm also at the 8 month mark and am going through the exact same things. Besides the numbness, my eye HURT all the time. It finally dawned on the neurosurgeon 2 weeks ago that it was probably the trigeminal nerve causing the eye pain since my eye looked and acted correctly. He gave me meds for nerve pain and I feel like a new woman. The point of my post? It most likely is your trigeminal nerve trying to recover from the tumor and its removal. Like everyone above said, it feels much better when I'm well rested.....less numbness, less pain, less stiffness, etc....

[lifeisgood]

What was the meds for the nerve pain he gave you? I am 10 years out and the trig nerve pain is what gets me the most.
About 1 time per month (hormonal) I get a tight clenching feeling on the Surgery side. I feel hung over and then it moves into the nerve and can at finds feel unbearable. I take imitrex when it gets too bad and it cuts it very well after about an hour and lasts for about 8. I can only take 2 per day so I take them only in crisis mode.  I have been taking them for 5 years now.  Wearing my bite guard also helps. I am a clencher at night.  I have been on Neurontin, Topamax, and Effexor, and a host of others but nothing really helped all that much.

I also went off GLUTEN and had a dramatic decrease in episodes for the month. I went from 4 episodes down to just 1.

This pain also switches to the other side as well.
It can be aggravated by too much of a workout like yoga.

[Unjaded]

Neurontin

[lifeisgood]

Glad it helped you! Did not help me.
Tried Topomax too and aside from turning into a size 2 didn't help either.
Has anyone had a MRI and seen the aftermath of their trigeminal nerve ?? I am going in for a scan and insisted that they get a view of the nerve.

I definitely think that each surgeon should have a team post surgery to help us as we recover or at the very least be able to tell us exactly why we have these deficits.

Prior to surgery, I did have issues as well so maybe it was a combination of tumor pressure and trauma afterward.

It also affects my non AN surgery site as well .

Mary

[hruss]

Hi everyone,

I just read these posts and although the thread is outdated, I feel I can chime in here!

I had my fifth ANniversary this Oct (2013) and the numbness on my face has always been there post surgery. My tumor was BIG so both the trigeminal and the facial nervew were affected  by the tumor and therefore during the surgery.

Right after my last surgery, the whole affected (AN on the right) side was numb. Once I was able to go to the dentist's, the first couple of times I saved money from anaesthesia. With time some of my feeling got back, but the sensation on my face and skull, where I have had them, has never been as clear as on the left side. I continue not feeling in my right part of the front skull, around my chin, the corner of my mouth, around my nostril and in my eye - I can't tell if I have an eye lash that otherwise would irritate my left eye immediately. I still bite my cheek and doesn't have working taste bulbs on the right side of my tongue. However, that doesn't stop me from chewing on the right side as much as I can (I can't open it as wide as the left side). Actually, I think it is better that I try to chew on the right side, because thus I do not exert all chewing pressure on my left jaw and keeps my face muscles on the injured part involved.

One of the exercises my surgeons recommended right after my surgery, was to evenly spread an ice cube on my AN part of the face. This exercise helps wake up all the nerves (no matter I did not feel the coldness at first.) Also, having the tingling feel in your cheek is a good sign for your nerves are still recovering.

Best,
Hrissy