Facial numbness - my new normal...

[lsawyer9971]

The whole left side of my face is numb from the bottom of my jaw to the top of my cheek bone and it extends to the exact middle of my nose. This numbness continues to my inner cheek and gums inside my mouth. The very interesting thing about it is that it seems to "only" be the outer skin that is numb. I can feel pressure and I can chew (although very carefully to not bite the inside of my cheek). I know exactly what happened. I had trigeminal neuralgia along the jaw nerve and I had explosive pain during any pressure, like eating or putting my teeth together. I went to message boards and saw this can be a symptom of MS and that I was not alone in my pain. I saw many doctors, dentists, and specialists before they figured out that it was not a dental problem but a nerve problem. This pain was destroying my quality of life and I had to be extremely careful in doing normal things, like eating and even talking or singing. I was on anti-seizure medicines which helped only to a point. I suffered for at least a couple years. When I got a referral to the surgeon, I wondered what they could possibly do for a surgery to help the issue? Would they just cut that nerve out? They referred me to have a procedure called a "gamma knife". This is extremely strong, pointed radiation to only the 5th nerve in my brain which controls nerves in the left side of my face. I don't remember the surgery assistant telling me of any side effects of this procedure but I was hoping for relief of the pain which I had not been able to get with medication or even trying to "wait it out". Did she say numbness "might" happen? It is possible, but don't we all hope that the "mights" just don't happen to us? So I get this procedure done and it is over in a few hours. I had to have this metal crown screwed into my head with a light sedative, so I was conscious. They then put me in this machine that looks like an MRI machine. I don't remember any of this or the discussion that I apparently had afterwards. For a few months (maybe), I still dealt with the pain, but they it started to lessen. It was great! I even asked the neurologist if I needed to continue the anti seizure meds since it was starting to get better. He told me to continue them anyway. Shortly after this conversation, about a year after the gamma knife procedure, I started to feel a numbness only in my chin. I rubbed it often and tried to "wake it up" but it didn't work. The numbness expanded little by little further up my face and I bit the inside of my cheek more than once (very painful). I talked to the neurologist and even went back to the surgeon to ask about the numbness. They asked "how is the pain?" The pain was minimal, it was starting to go away. Although, the pain was decreasing the numbness was increasing. I cried at first. I didn't want numbness but I didn't want the pain either. I was worried. At first, so were the doctors, they even worked me up to make sure it wasn't a stroke. It wasn't. My face wasn't drooping, it was just numb. I didn't have any other stroke symptoms either - no slurring of words and my arms didn't droop when I lifted them. My face was just numb and it is still numb. Two years now of numbness. I didn't want it to be but I wondered if this is my new normal? Is this what I would have to deal with for the rest of my life? I don't know that but I am careful, and I continuously have to discuss it with my doctors and specifically with dentists so they know the situation and that I can't feel it when my gums bleed. I eat with a napkin in my hand and consistently wipe my face because I can't tell when there is food hanging out on my lips or if I drool. Embarrassing. Ugh. BUT, the pain has subsided, except for the occasional faint ache sort of like when you lose a limb. BUT the pain is gone... :/

[Jesmcd2 CommunityAmbassador]

Welcome lsawyer9971 sounds like you went through Alot to get rid of the pain. So maybe it was a good thing?

As far as the embarrassing stuff, just smile through it! And hang in there! 🤗💕⛄

[bxrmom]

WOW lsawyer9971 I have never heard of that procedure before. I'm glad your pain is gone for the most part. Sorry that you have constant numbness that you have to aware of 24/7. Glad your dr made sure that it wasn't a stroke causing the numbness. Did any of your drs say what could be causing it? Is it from the nerve that was causing your pain?

Gentle hugs,

Jessie

[hairbrain4]

Numbness on the left side of my face and tongue was what eventually got me diagnosed with MS. I have never had any pain with it though. The numbness comes and goes. I was diagnosed in 2005.

[mm1527mm in reply to hairbrain4]

Numbness on my right side of face got me diagnosed as well. My face mouth cheek lips went numb and i was hospitalized and given steroids

[hairbrain4 in reply to mm1527mm]

My PCP sent me for an MRI right off the top & when the results came back with consistent with MS he sent me to my first neuro & then the test began!

[mm1527mm in reply to hairbrain4]

Luckily after my second visit to the hospital and many dr visits i was also sent for brain mri also went thru tap and all the testing and also diagnosed. Sad and difficult time but glad it was diagnosed. Blessings

[greaterexp]

I’m sorry about the numbness. Though it’s great to have that debilitating pain gone, the numbness can sure be a problem.

[mm1527mm]

This is a terrible disease. Sorry to hear about the pain and numbness. Prayers

[rjoneslaw]

welcome did your dr say what causing the pain numbness?

[mrsmike9]

Wow! That would drive me nuts! Although if I would have to choose between pain and numb, I would choose numb. So sorry you're going through this! Also glad they have ruled out the big scary things. Hang in there!

[RoyceNewton]

the bits I read say trigeminal neuralgia, no fun at all.I like cyber knife as a treatment. Look it up and see if you can travel to where it is done, well worth it. Good luck and nice to meet you.

Royce (the ms writer)

[twooldcrows]

wow hope it continues to get better ...but i would of course not want the pain but it is scary to have the numbness ...i had it for a while when i first started to have different things going wrong when i woke up one day ...but it is still a little numb but not bad actually can forget about it so hopefully it does for you....take care ..