Barely coping...not good at all!

Hi everyone. I’ve been reading all of these posts and it is comforting yet very sad that we all go thru this same pain. I have been having a very difficult time. I had a rhitzotomy done May 25. I really was praying this would help even if it was short term. Any relief was all I wanted. I feel so depressed and disappointed. It helped for a couple of weeks and some of the pain is better except for this excruciating pain that feels like its deep down in my ear like the worst ear ache one could ever have. It doesn’t stop. Before surgery I had already been home unable to function due to meds and pain. That was for 6 months and I just tried going back to work 2 weeks ago and I am barely able to do this. I am exhausted and the pain is unbearable most days. How am I suppose to live like this? Is it ever going to get better? I have also gained so much weight. I just can’t do this anymore. What do I do next? Right now all I feel like I can do is cry. I really am trying so hard to pull myself out of this hopelessness but nothing is working.

I had a rhizotomy on the 25th of june, it got rid of the stabbing pains, but I still have the deep ear pain and teeth pain. I just got an appointment with a neurosurgeon in NY and am hoping he will help, I cant work either, am bored and depressed out of my mind. I just changed my meds and the anti-depressants I am on seem to help with the ear pain. I have been in pain now for 5 months and at my wits end as well I just keep telling myself , it will get better.

I just try to live each day, and I know , it sucks, this is the worst, but there is support here for you to vent, scream, rant or whatever. I wish I could give you a hug!! I so know how you feel. Its the wondering if we will ever get well thats the worst. I just keep trying different meds, different doctors and hope that one day one of them will have a good plan of attack.

I do hope it gets better for you


Have you considered MVD?

The meds drove me to it. But I chose one of the TOP in the MVD field and flew to michigan.

Dr. Ken Casey will do a consult over email

just google him! He's world renowned and was on my insurance approved list.

Here is also a link I posted a while back about sadness over this HELL we've been through---

AND ask your doctor for some prescription lidocaine -- comes in nasal, mouthwash and topical - whichever you need most or more than one perhaps - helps good

Thank you everyone. Yes I have thought about MVD but I thought I was making the best decision for the time to try rhitzotomy first because it’s less invasive. I was trying to avoid the MVD. However now at this point I am now willing to look further into it. I am in so much pain that the quality of my life is nothing. Something has to help. Thanks for all the great tips. I’ll ask my dr for lidocaine prescription. Any other advice is helpful.

Praying for all of you as well

On a scale of 1-10 as far as brain surgery - Dr. Casey calls MVD a 1 - compared to removing tumors, and other horrible things that happen to people

The more you read and watch videos here and on the site

AND read the book Striking Back by Ken Casey - you will find out over 200 options to try to get short term or long term relief

If you consider MVD -- the more procedures you have before it - the percentages get lowered for the highest success rates

Which are NEVER 100% forever by the way - no one is ever cured - we live it or we live remission.

Keep learning - and keep hoping, its a good combo!

I’m sorry your in this spot. I’m right there with as you saw in my thread. I wish I could say something that would help you feel less hopeless. You’re not alone though and some how we will and can crawl out of this darkness. Hope you are having good and pain free day today. If you need to vent or cry whine whatever you can always message me. Take care

I agree with KC Dancer's comments about MVD. I had one 4 weeks ago and it got rid of my TN. It was very scared before the surgery, but was willing to go through it to get my life back. And I did! My surgeon also said it is very low on the risk scale as far as brain surgery goes. It was not a total piece of cake and for the first 2 weeks I was very limited in what I could do. But the surgery/recovery was no where near anything I went through with the TN pain. Not even close. I know not everyone has an easy time with it and some have complications. But the statistics for that happening are pretty low, especially if you are otherwise healthy. Please do not give up and do your research. I used Dr. Fukushima at Duke. I would highly recommend him to anyone. My scar is only about 3 inches and at 4wks post op I am feeling about 90% back to normal. He found 2 vessels compressing my nerve. Do not give up...there is hope!