Today was just another day for me. On & Off burning, shooting, jolting. No appetite, blah, blah, blah. Its been 3 1/2 weeks since my attacks came back from remission. I started in the ER (my first ever ER visit for TN), I've been using morphine & Xanax to help with the pain & anxiety that goes along with all the pain. I also have been trying an Upper Cervical Healthcare Chiropractic that I think I've seen 5 times now. I'm not sure if it's 100% helping, but my pain today, compared to 3 weeks ago is split in half. My highest pain today was about a 4, max. The occasional twinges are becoming the new normal, and a lot of the time I don't even notice the pain anymore, because I've had it so often in the past 3 weeks, my body just is used to it. Unless its a real good zinger, then I remember, Oh Yea, My TN is STILL in control. This sucks. I've been off work for 3 full weeks, going on 4. I'm broke. Trying to get on short term disability, which haven't heard a thing from our HR dept yet. No big deal, don't know if I'll even qualify. Went to my PCP yesterday, and he wants to do a referral to Mayo Clinic. So, we started that process, however, won't know for a week or so if I'll even be accepted to be a patient there. If that doesn't happen, then I'm going back to Dr. Gust at Sanford Hospital, Sioux Falls, SD, and hope that he would have some recommendations for me. I just know I cannot live like this with this pain forever. One thing that's been bothering me is the fact that everyone I speak with has had nothing but problems with any procedure or surgery. However, I need to continually remind myself that MOST people I'm connecting with on Facebook, and thru this blog are the unhealthy, the ones who are still struggling. Those people who have had failed medical treatments. Too bad all those healthy people who have had wonderful success aren't here for us who are scared, struggling, and uncertain as to what to do. Well that's it for today. Don't know when I'll check in again. Maybe tomorrow I'll go into remission and I'll be one of those people who falls off the face of the TN World and won't check back in until my next ZING! Love & Prayers to all my TN Friends & Families who struggle.
Robbie..I am one of those healthy ones and would like to let you know that I had MVD surgery 30 years ago and have been pain free ever since. I had excrutiating TN pain for 8 years till I finally got it diagnosed. 30 yrs ago the MVD procedure was just in its infancy. There are many many who have had this surgery and have had enormous success but you are right most of us have put it in our past. First thing is to make sure you have a highly qualified neurologist with extensive TN experience. I just this site just so that I could communicate to folks like yourself that there is potential long lasting hope.I pray that you will find an answer and an end to your TN pain.
Ed, thank you for encouraging us!!! Appreciate you not forgetting the ones who are still hurting.
Hi Robbie,
I too want to jump in and say my MVD 5 months ago changed my life for the better.
Although I’m currently experiencing some TN pain on my MVD side, it is nothing compared to pre-MVD!!
I’ve had no complications from the surgery.
Before April 9th ( my MVD) I was in 24/7 high levels of pain, my pain became refractory to treatment, (med resistant) and was progressing…
I knew going in to the surgery that this procedure might not take away my pain completely but I felt like it was my best chance at some relief.
It was.
My pain was predominantly type 2 with features of type 1 as it progressed on my MVD side, better long term results usually occur for people like Ed with type 1.
( I have type 1 on my right side which is quiet, managed by tegretol)
I would do it again in a heart beat.
I’m not advocating MVD but I am a big supporter of it as it is the only procedure available to us that if done by a qualified NS will not damage the nerve. That’s important to me.
When a cure is found, I want my nerve in its original state, so it can be treated and cured!!
Keep HOPE alive, thinking of you…(( hugs )) Mimi