1 year ago
My husband had tmj and he was seeing an orthodontic specialist who was fixing a bite. His bite wasn’t getting better. His family doc thought maybe a neurologist should be consulted. I was applying to grad school for my PhD.
10 Months ago
My husband was in the middle of the worst pain I had ever seen any human in in their life time. I remember him dropping to his knees and wrapping his arms around my waist and begging me to help. I remember that was moment I realized this was so much more serious then what I believed. There was a horrendous snow storm going on outside, but I called my in laws and said I need you to come get the girls and I took him to the emergency room. Hours there and many pain killers, muscle relaxants and steroid shots later and he was still writhing pain. The ER doc mentioned the condition of trigeminal neuralgia and I was confused. My guy seemed to have heard of it before and had recently had it mentioned to him. They gave him enough meds to sleep. He barely did.
11 months + 1 day ago
The pain was unbearable and my husband was on 48 hours of 10+ pain scale and barely any sleep. We were on an emergency phone call with a neurologist who admitted him to the hospital and tried multiple drugs. They tried to get him to eat. He couldn’t. Two day hospital stay with a neurologist whose wise words were, “Well I could keep you here, but that isn’t going to change anything. You are going to just have to learn to live with the pain.” I went from thinking my husband had a common jaw disorder to a neurological disorder in 48 hours and I was NOT going to accept this as his new life or mine.
11 Months + A week or so ago
Multiple calls to doctors and tons and tons of research and a few connections with other TN sufferers and a week or so of my husband in the worst pain known to man and my children sitting watching it and I was fired up. Finally lined him up with a neurosurgeon and they adjusted a few meds and wanted us to hang out. We tried. It was probably the hardest 6 weeks of my guys life. He couldn’t talk, eat or even breathe without it hurting.
10 months Ago
A half an hour work up withe neurosurgeon and he knew he was in over his head and his head nurse was on the phone with two neurosurgeons for my guy to have an micro-vascular decompression aka brain surgery. A surgery that is not a guaranteed fix or promises nothing. A surgery performed by only a few and his doctor one of the leading ns to deal with trigeminal neuralgia.
10 months and two weeks ago
My husband was in the ICU with machines attached to him everywhere. I saw him in the most vulnerable state any human could be seen in. I got to tell him the news at least 6 times that two compression on his trigeminal nerve were found because he was so out of it. I sat vigil by his bed and hung out with other spouses who were also sitting vigil. I felt powerless, helpless and vulnerable myself. We all identified with one another.
Life slows way down ago
The following months were filled with trying to regain some normalcy in our lives. Only to see that TN was not going down without a fight.
5 months ago
Began recognizing that it was going to be one thing after another. Another call and another call to amazing ground breaking surgeon.
1 month ago
The temperature started to change and as it changed more and more I began to see familiar things. Facial contortions, rubbing of his face, worried eyes, anxiety. Add in the side effect of the surgery that we were not expecting: bad horrible headaches. I again get fired up and a call to ground breaking surgeon and a plan of action. A plan of action that at first was slow and steady but soon followed with needs to happen sooner.
So yea we wake up every single day and go to work, take care of our girls and our lives. But we do it in constant fear of how TN is chipping away slowly at our normal life. And I am not naive enough to think that I deserve anything normal or that normal even exists. But a world where TN didn’t drop in and blow up my life. Nothing about this life resembles anything I thought it would a year ago. And I suppose the same could be said for my life being completely different a year from now.
I also wake up every morning wondering how today will go. I hope his meds work and his pain stays at a minimum. And that is all centered around him. I worry we will be where we were a little less than a year go. I fear seeing my spouse that way again. I fear him having to feel that way or even having to worry about feeling that way.
That doesn’t even cover how I feel about my girls in all of this. He saves his best for them.
I could list all the things that TN has taken away from my husband, but that is his list to make. I know my list is long and I don’t even suffer. I suffer as the spouse of a TN sufferer. All I can say is it has changed me to the core. It has changed how I deal with life, people and my husband. I cannot unsee the things I have seen. It has only widened and deepened my love for him. But it has also made me bristly. I am insanely protective of us, our story and our struggle. But I also see the strength.
I have total and utter faith that love always wins. But this is the hard part….Love winning suggests fighting and we are in the fight.