I knew going in for the MVD with "trigeminal Neurapathy " that I was taking a chance. Lord knows the medical profession loves that word or trigeminal differentiation over the AD word. I don’t have a medical degree, but I do know all of the above are unpleasant physically and emotionally. I know that I am not done healing so hope still exists. I go back to the surgeon Friday. If he mentions anything about the weight loss benefits of Topomax I will kick the legs out from under his chair. My right lip still burns incessantly. I did get relief from the burning on my gums. But, heres what gets me. No one returns your calls. I am so angry I am seething. I sit with ice on my lip or I mix lidocaine with small amounts of vasoline and put small dabs which help, but maybe he has something better. But I don’t know because he doesn’t call. I envision myself walking into his office grabbing him by the shirt collar and slamming him up against the wall. I needed this. Namaste everybody. I have to laugh after I wrote this because spell check kept correcting and putting that I mix lidocaine and gasoline together. It’s official. I am losing my mind.
Is it just your lip?
Not to minimize your discomfort…asking.
Most surgeons don’t call back much…even the greatest!
Try to minimize your anger friday… Maybe sad would be a better approach?
It took over one year for everything to shake back into place.
I share here that i am pain free… But. All bets are off in the freezer isles after 3 years…not shocks…but underlying discomfort
If wind is below 50
No hoodie no walking dogs
Keep posting!
Yes, crazy lower right side of lip. A little less today, sometimes right side gum. Had the issue before the MVD. Am I too impatient? Your the only voice of reason in the universe, for me now. It's my fear KC. I feel so frightened. I have no family here. I am in a retirement community where I have been considered to be anti-social, or weird or strange due to the unpredictability of the disease. I have only been here for three years. Just about the whole time that I have had this disease. Someone looked up the condition and now it's thought that I am suicidal. I went out and someone actually said oh you have "the suicide disease" Some days have been so painful I have actually wondered if I could bear it. The next day it would be better. I also have pressure in my lower front three teeth. Sensitive pressure. I felt so fragile after my surgery that I got spooked by a member who was upset over root canal injuries and actual vein issues. I had an obvious vein but opted for a Gamma instead of an MVD first, which makes my recovery difficult. I often thought I really did not want to do it anymore. I needed to come here. But it felt so hostile. I thought shoot I'm not smart enough to have this disease, and angry at the same time. Am I making any sense? I need this place.Its all I have. So it's been really hard. I look for you if I post. Simple and to the point. I know I sound crazy. It's the isolation. This terrible isolation. So thank you. And God Bless You.
Can you print off anything from here?
If you cant
I will send you some Wallet cards about TN,!
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They were mailed to me from scott who made them!
Then maybe get out more? What do you enjoy? Art, music, what is available inside your retirement community, and just outside it?
Have you got lidocaine mouthwash?? Make them call it in!
I had PTSD because of the meds, impending doom, depression,
Before MVD , AND AFTER. I isolated…i lost a few friends…and im 51
Email me!
Kimberly
Thank you for all the supportive remarks. I will regroup. The lip pain was so painful I could not sleep for three days. It has calmed down, as I have too. See specialist in Philly tomorrow. The chicken running around screaming the sky is falling will stop now. Blessings to you all. Will report back.
Amitriptyline was a LIFEsaver for me when I had burning CHIN pain. And I am taking it again now for my mouth pain and hot spot on my scalp. It works…maybe it can work for you too. I sure hope they answer your calls and HELP you SOON. I know you are hurting!!! I know what that feels like. I am sorry you are goin thru this right now…
Min
Min said:
Amitriptyline was a LIFEsaver for me when I had burning CHIN pain. And I am taking it again now for my mouth pain and hot spot on my scalp. It works..maybe it can work for you too. I sure hope they answer your calls and HELP you SOON. I know you are hurting!!! I know what that feels like. I am sorry you are goin thru this right now.....
Min
Had a heck of a time replying to this. I had a terrible time with nortriptyline, really hurt my stomach. I have issues with my chin. Will ask about the amitripiline. Will research it also. Does it work for the mouth pain? My mouth is calming down a bit. If I can keep my emotions under control, the pain is more manageable. Thank you for the input. All so helpful.