I have noticed that food does taste different, maybe then I won't want sweets anymore LOL. My ear does pop a lot and feels like there is water in it. For some reason I think I have every symptom you can possibly have after MVD!!

How are you doing with pain? Any relapses?

Unfortunately, I have relapsed bretty badly since my surgeries. After about 3 months, the pain started to come back in my left ear. It wasn't as bad as it was before the operations, but by about 5 months post-surgery, I was back to having daily pain. I really hope you don't have the same happen to you. Unfortunately the doctors I'm dealing with in Alaska have no idea how to properly treat my condition, so we're making it up as they go.

Today was a bad day for me. Answering phone calls over the weekend aggravated my nerve more than I had though, so today my ears were a lot more sensitive to triggers & I experience more frequent attacks. Thankfully tomorrow is my day off, so I can keep everything away from my head & let it get back to normal.

I'm so sorry you're surgeries didn't help. I'm sending positive thoughts your way in the hopes your doctor's will figure out a way to control your pain.

Rest up on your day off!!

Going tomorrow for my 6 week follow up and hope to get some answers about my jaw. I recently had my braces taken off and I'm wondering if this could be contributing to the pain. I guess having it all done at age 43 probably wasn't the best idea!!

Itzag you should get as much info and copies of things that have helped others and then suggest /show to your docs . I know its the poops when you have something doctors dont know or have little experience with treating. its like you yourself have to guide, point,...kick them into the right direction .suggests meds or other options to them docs if they are stuck on neutral.I am sorry the operation didnt help as much as it has for others. I know more of the latter where it doesnt last for life.but it still helps thousands of others because each of us and or symptoms are different. as well as the surgeon . are you taking any meds now? did any meds help before the surgery? sending waves of low pain and good energy at you and relax on your day off.
Tracy hope your follow up is good and leads to some relief and answers.Also its nice to see you both connecting but I wish it was over something more positive. Peace
BMW (Tina)

I went for my 6 week follow up yesterday and found out the jaw issues I was having are NORMAL!! Apparently the trigeminal nerve affects two muscles that contribute to chewing. Who would have known? He told me heat or massage can help. Because of so much manipulation of my nerve ( 3 veins wrapped around it) this can happen.

I am very relieved and will start using these these tips. The massage actually feels awesome!!

I go back in 6 more weeks and he is very confident the numbness and jaw issues will resolve. I will continue to keep faith that this will get better with time. I guess we all just have to take it one day at a time

Even after everything I've been through I can honestly say I would do the surgery all over again. I will take the numbness and stiff jaw over the pain I was having before. My hope is to remain pain free!!

Thank you to everyone who has responded to may complaints. I will be updating everyone on my continued progress. I know where to come when I have bad days and I know there will be more with the continued decrease of medications.

Tracy,
I wanted to check up on you sooner, but have had out-of-town company for the past few days. They left this morning. It's dark and rainy outside and I'm sitting on the couch enjoying my quiet, empty house.

I'm glad you got good news at your follow-up visit. That's so encouraging! The odds are way in your favor that the surgery will be successful and you'll be able to get off all your medications.

Did you have to take steroids after your surgery? I think that was the worst part of my recovery. I ate constantly, but nothing tasted right. And I was in a terrible mood. I now have a lot of sympathy for those who have to take steroids regularly.

Did you get the excruciating zapping pains with your TN? Did it come on all of a sudden or gradually? How long did you have it before you had surgery?

I had never heard of trigeminal neuralgia until I got it. It took a couple of months before I could even pronounce it correctly. I'm so glad I finally found a place where I can talk to others with the same condition.

I hope you're doing well, Cheryl

happy to read your follow up was good yesterday Tracy. You gotta give your body yourself time to heal. The doc is Right your nerve was manipulated allot.As well as your jaw, neck . massage and warm /cold compress should help. YES t.n. sister KEEP Faith things will get better ! Your just starting to mend . Things will continue to get better one day at a time.

No steroids thank goodness. I don't do well on those. I've been taking Advil instead, but only when really necessary.

My pain started after a root canal. I had zapping pains in my lower teeth and horrific jaw pain. Nobody could figure out what was wrong. I saw my dentist who did a repeat root canal, an endodontist who said the root canal went great, and two general physicians. The second doctor finally gave the TN diagnosis.

I had never heard of it before either. As a nurse myself I finally started researching it.

I had the pains for 14 months before surgery....ugh!! That whole time I was on Norco for pain. Luckily I'm off of it with zero problems. I was scared about withdrawal symptoms.

I'm feeling pretty good 6 weeks post op. This site has helped tremendously as well

I'll keep posting as my progress (hopefully) continues to go well!!

Unfortunately, I don't have a very good relationship with my Primary Care doctor, who also is in charge of my Pain Management. She's not abusive, and she seems to want to help in her own way. Unfortunately, her way involves me dropping all pain medication in exchange for physical exercise, which will somehow release enough endorphines to relieve pain all day, every day. I know that physical activity helps to relieve pain, but I have to be very careful with what I do & how much I do, otherwise I end up experiencing intense pain for at least an hour, or even the rest of the day.

Thankfully, I know I'm not the only one who thinks I'm not being treated correctly. When told of my treatment history up here, the doctors down in Seattle were shocked & couldn't understand why the Alaska doctors were basically shooting in the dark with their treatment plan. At least I know I'm not just crazy.

If anyone has suggestions on how to talk to your doctors when they aren't inclined to listen to you, I'd appreciate any tips. Would also appreciate any tips on what a person can do to relieve pain when it happens.

Maybe another doctor would be more helpful. I do know one does not get to pick and choose doctors at will and its more who is covered or in net work on your insurance ...if you are luck to have some or you are left with the one thats nearest etc. I found for me that Writing things down on paper and bringing them to doc apts and giving to the doctor was very helpful . it is the best way to have things on record and in your file with each of your doctors. I would write my questions why isnt exercise helping lessen the pain as your doc suggests... my "wonders" I wonder if this med would help more... My worries . i would sometimes go to my appointments with 4 or 5 pages of stuff . a copy for me and one to give my doc . the doc should put this in your file they have . it will give more time for the Doctor to read over and take in things . you can also print things off your comp or web sites to show your doctor. I did this with another issue unrelated to t.n. and the gastro doc took out his phone went to the website and promptly started me on the med suggested and I am doing good. Yes be careful with exercise because it changes the blood flow and that messes with the pain monster. I am gonna read some posts and respond to the pain relief question after . hope your having a relaxing night. Peace
BMW