Mind set is very important! I am a social butterfly, volunteer a lot and do speaking sessions and events, and sing. Well the loss of feeling stopped that as I could not feel my tongue in mouth or against my teeth. However, I have taught myself to speak fairly well out of the one side and have joked with friends you cant keep a good talker down lol. I have decided if this is who I am, then this is who I can be, but it is painful in a way, and I do have crazy tingling that causes me to instinctively scratch, and I would feel amazing if I could get the feeling back. I am here in my first support group looking for support and maybe give some too :)
artana said:
Hi Christine: I had surgery to remove a benign tumor which was causing trigeminal neuraligia. The tumor was stuck to the trigeminal nerve and even though they had two doctors to be sure nothing caused numbness when they saw the tumor direct (as opposed to MRI) the surgeon opted to free me of pain but leave the right side of my face numb. Yes, it is not pleasant to have your friends constantly telling you with gestures or whatever, that you have food on your chin and mouth.
It is kind of like one hour from the dentist except it is 24 hours a day rather than one of 24 hours. However, what I have observed is after 3 months and a couple of days I have had some diminishment of numbness. At this rate, I estimate that if it clears it will be 10 to 12 months. My surgeon is optimistic that much of the numbness will go away over time--he even mentions "years"..
Yes, I agree that numbness is it's own form of minor irritation and pain--and although my sister and others who have seen me before the surgery are jubilant that the pain is gone, numbness is another kind pain and I agree it is hard to live with. However I* am taking a new path with perception and my numbness. , I haven't been able to do it YET but I have had success in the past with "mindset" where I just decide something or someone is not going to "bother" me. I just decided 2 days ago that I should try the mind set approach. No success yet, might take me 6 months or so to find the mind "key" but that is what I am working on at the moment. If I get to a different place in my "perception" I will let you know. And I will tell you what worked for me. Anne
Thank you for writing to me and also thank you for being patient with a response. I wanted to be sure to sit down and give your letter the attention it deserves.
I am so sorry to hear of your symptoms, but felt some relief that someone else in the world can relate to what I am going through. I have posted to this site many times and have received a few responses, but no one before you was going through the same things.
While I did not have the MVD, I did have Gamma Knife, followed within a year by Cyber Knife. I wish with all that I am that I would not have had the second procedure. My pain was terrible, but it was not constant, like my burning and numbness is now. I take low-dose vicodin every day just to make my life bearable. No other meds I have been on have touched my symptoms.
My current neurologist thinks I should see a psychologist, as I am getting pretty down :-(
Like you, I have food fall out of my face all the time. Unfortunately, if I don't have family around someone usually points-out that I have drool, snot, or yogurt on my cheek, chin, etc. Hopefully this made you laugh a bit. I am sure your kids keep it light and things in perspective for you, huh?
Your ear trouble sounds quite terrible. Are you healed from that now?
I hope we can stay in touch and please let me know how you are. Are you going to pursue legal action?
Hope your days are better and that you are feeling good.
Christine
4timesmomma said:
Hello, I am so glad to have read your post. I am completely new to this site. I had MVD surgery on my right side, and now have no feeling on the right side of my face, eyelids/vision doesn't quite work right, I cannot speak or eat well, but I am single mother so my children enjoy telling me im drooling or have food dribbling. my ear feels plugged and just recently had it hemorrhaging because it was badly infected and I could not feel it. I am sorry for they symptoms you suffer as I can relate. I have not read all the replies you've received, but have you received any relief yet, any good advice, has it gotten better??
I meant to ask you - are you able to work? I find it very difficult, as my speech is affected. Just wanted to know about this part of your life.
Thanks and be well, Christine
Christine P. said:
Hello, 4times,
Thank you for writing to me and also thank you for being patient with a response. I wanted to be sure to sit down and give your letter the attention it deserves.
I am so sorry to hear of your symptoms, but felt some relief that someone else in the world can relate to what I am going through. I have posted to this site many times and have received a few responses, but no one before you was going through the same things.
While I did not have the MVD, I did have Gamma Knife, followed within a year by Cyber Knife. I wish with all that I am that I would not have had the second procedure. My pain was terrible, but it was not constant, like my burning and numbness is now. I take low-dose vicodin every day just to make my life bearable. No other meds I have been on have touched my symptoms.
My current neurologist thinks I should see a psychologist, as I am getting pretty down :-(
Like you, I have food fall out of my face all the time. Unfortunately, if I don't have family around someone usually points-out that I have drool, snot, or yogurt on my cheek, chin, etc. Hopefully this made you laugh a bit. I am sure your kids keep it light and things in perspective for you, huh?
Your ear trouble sounds quite terrible. Are you healed from that now?
I hope we can stay in touch and please let me know how you are. Are you going to pursue legal action?
Hope your days are better and that you are feeling good.
Christine
4timesmomma said:
Hello, I am so glad to have read your post. I am completely new to this site. I had MVD surgery on my right side, and now have no feeling on the right side of my face, eyelids/vision doesn't quite work right, I cannot speak or eat well, but I am single mother so my children enjoy telling me im drooling or have food dribbling. my ear feels plugged and just recently had it hemorrhaging because it was badly infected and I could not feel it. I am sorry for they symptoms you suffer as I can relate. I have not read all the replies you've received, but have you received any relief yet, any good advice, has it gotten better??
HI Christine
Your message motivated me to sign up to this blog. I had Cyberknife in Nov. 2017 and had a year of perfection (no pain). A year later I got facial numbness and have trying to fine help for a year now. I keep a napkin handy to keep near my mouth (especially around eating) because I can’t tell if I’m having any fallout. I also have issues with my eye even though my opthamologist says I am perfect. The problem with trigeminal numbness is that it is invisible. You can’t imagine how many doctors I’ve seen who wonder why I am seeing them since I am so perfect and so symetrical and show no signs of anything wrong with my mouth or my eye.
I finally found a neurologist who at last listens to me and talks to me, but again, there seems to be no cure. But have not yet given up.
Since this happened in 2013, how are you now?
Linda