Hello, I’m looking to hear from anyone whose procedure left them with permanent facial numbness - how extensive is it? Does this affect your quality of life? Dramatically? Do you or someone you know have facial drooping because of a procedure?
I’m considering ablation through trigeminal tractotomy-nucleotomy.
Thanks for your responses!
From 20 years of reading and talking with patients, I’ve seen a fair number of mentions of facial numbness following MVD or RF Rhizotomy (Ablation) procedures. Numbness either long term or short term is probably the most common side effect of these procedures. Facial droop is less common but still occurs. The stats are on the order of 25-30% with some form of numbness.
What is harder to read in this statistic is whether the numbness or loss of tactile sensation is “bothersome”. A lot of patients I’ve heard from regard the numbness as an acceptable tradeoff for pain relief, and a blessing in its way. Some clearly do not share this view. I don’t think there is any way to predict in advance how an individual may be affected.
I have had a P.S.R. (percutaneous Stereotactic Rhizotomy) done about a year ago. I have numbness from my lower lip to a point in my scalp, on the left side of my face.
The main problem I have is with my eye if I don’t keep active I will let it bother me. My doctor told me I would have to stop thinking about my eye and he is right. My first thought was that’s like saying go sit in the corner and don’t think about pink elephants
As I said it only bothers me if I don’t stay involved in doing something…I am glad I had it done though .The only other thing that I believe is related is that my eyelid and the place on my scalp itch.
My numbness covers a much larger area than it should have.It should have been in one area of my face. But I still am glad I had it done. The numbness is something like when a dentist numbs you for dental work.
PTD
Do you talk like when you’re numbed up at the dentist’s office, too??
Sorry for the delay but I had to go out right after my other post. I’m one of those people who doesn’t see a dentist often. but I don’t notice any effect on my speech. My tongue and nose are numb on the left side, also a little in my throat .
I’m retired minister so I still do a lot of talking.
Sloane I responded go your request about numbness the other day. As I thought about it later I realized you could have thought my whole left side of my face was numb. That is not the case. It is about 2 1/2 inches from my nose as I said up to a point on my scalp starting at just below my lower lip.
I’m glad I had it done.
I had a Glycerol Rhizotomy about 2 months ago and am definitely experiencing bothersome complications in addition to facial numbness from my mouth to well into my hairline on the same side of the injection. Right away the ATN pain was gone and I thank God for that but for the first 10 days I was on pain killers for the pain in my cheek. Soon after I started having severe muscle cramping that makes my my lip curl up in a snarl while my eye squeezes closed. It hurts during the cramp and after the area feels sore. I can’t control it and isolated myself even more as it is embarrassing- did I mention it also makes me talk funny, as if I have a speech impediment. Yes the pain is much less but I’m still sitting with an ice pack on my face most of the day.
From day one, my eye on the side of the procedure feels like it has bugs crawling around the edges of the lid and stopped producing tears. I have to use eye drop gel every few hours to avoid damaging my eye and reduce the scratchiness. The gel helps numb the “bugs” but the gel is slowly loosing its effectiveness.
The only other problems are a swollen area about the size of a quarter at my temple that is very tender. If pressed, it feels like a punch in the face. And my top left lip feels like it is so chapped, it is on fire. I have to use a heavy waxy chap stick along with a numbing gel you would use inside your mouth.
In the beginning, the ER gave me Valium but that made me crazy loopy which freaked out my husband so he finally got interested, took m to my doc and they decided I didn’t need to be on Valium (I agree), as well as took me off my soma, Effexor, and tapered my gabapentin from 900 mg 3x/day to 300mg 3x/day. My fibromyalgia, for which I take the Effexor, has become a problem again so back on that.
I pray for strength and to not loose faith. I believe I must have something important to do for the devil to take such an interest in me. My advice, do every bit of research you can. All the doctor phamlets and websites are primarily advertisements. Even Facebook has lots of “our kind”. Ask the tough questions. Don’t make decisions while in the midst of an attack. If possible, ask someone to help be your patient advocate. I never thought I could be on the small side of so many stats (% of people with ATN, % of people not responsive to my number of other procedures and now the tiny % of people with very bothersome complications after glycerol Rhizotomy). God bless! Pettus