I have posted in the past about the success of the MVD I had last June. I have had no electric shock pain since then. I did have a fair amount of numbness in lip/chin/tongue for a while after surgery which gradually got better over time. However, I continue to have these "spells" where for a few days my head near the surgical sight will feel super tender/tight and the numbess in my face will increase. It freaks me out everytime it flares up because I am afraid the pain will come back. I wondered if anyone else has experienced something similar? For the past two days my head is really tender near incision site. It almost feels like it could be a little swollen, but I'm not sure if that's just me worrying or I am really feeling something. I have had trigger points on the back of head for years from muscle tension. The surgical sight is near that on the right side. So, I wonder if it could just be muscular in nature. I have been under a lot of stress. I emailed my surgeons office this afternoon and should hear back from them tomorrow. He is 3 hrs from where I live, so it is not like I can just go see him at a moment's notice. If anyone has input, I would be interested to know your experiences. As we all know, once you've had TN it's hard to forget and not be in fear of it returning!
(((( blder )))),
Can’t answer your questions, but wanted to say hi and send you some hugs!
Hopefully it’s just the stress, and yes the fear of it returning is always there I imagine. Like PTSD …positive thoughts, Mimi xx
You are doing the right thing -- in the interim is there a nurse practitioner or GP who can just look at the incision site - then follow up with driving 3 hours each way - bummer but necessary !
Let us know!
Thank you both for your responses. I have felt better today. The numbness has subsided for the most part and my head is feeling a little better. I really think once you've suffered with TN for years, you are changed mentally. I agree that it's almost like a form of PTSD, Mimi. I'm so very thankful that my electric shock pain has not returned since my MVD...but any of these flare ups I have make me fearful that it could!! I try to live in the present, though, and not focus on the what ifs. Somedays I'm successful...other days I have my little freak outs:) I also think that it can just take a really long time to recover from MVD. I know with other surgeries I've had it took many months for nerves to grow back and I had pins/needles, numbness, etc. I shouldn't expect my head/brain to be any different! The pain of TN is just something you don't ever forget or want to repeat once it is taken from you! I still haven't heard back from my surgeon's office. I will call them tomorrow if I don't get a response to my email.
YES! PTSD is definitely going to become part of a TN diagnosis SOMEDAY in the far future!!! We all have that in common!
Hi blder1,
When I tell my family and friends that I think I have PTSD, they just look at me as if I am joking. My MVD was Dec. 21 and the slightest pain in my face will send me into a depression. The shocks are gone but not the fear of the shocks. I went out to dinner on Sunday and bit on a piece of hot chicken which sent a pain up a tooth and into my nose. I suppose I should see a dentist but cannot convince myself that it is not the TN coming back and I don't want to hear the dentist say it is not my teeth. I've been there already. So, while I cannot help you, I can tell you that you are not alone. Whether we are having pain or have been relieved through medicine or surgery, we are all in this together hoping and praying for a permanent cure.
Good luck to you.
Hello bldr1 was reading your story after MVD about tenderness at the incisional site so many months after MVD. First let me say am so glad you are feeling better, cut yourself some flack it does take awhile for healing. This is a. Ery big operation. Everyones healing time is different. I truely believe we are forever changed dealing with chronic pain. Always on guard waitng, just waiting for the next attack. Its scary , especially after a big surgery like MVD. We all,want so,much to feel better and you will. I understand that discomfort at surgical site, still suffering after 17 months since MVD. I keep waiting to be able to sleep,on that side again with no pain. Question did yours just resolve or do you still have episodes? I will keep yoi in prayers that you remain on this positive course of healing. It makes me happy to hear such sucessful stories of MVD even if it takes months to finally put your guard down. Take care!
My Best
Joanne