Since May my guy has been feeling off. Since May I have watched one thing after another eat away at him and I have cried so many tears. I am so damned sick of crying. All I knew is he was not himself. I started to wonder if it was me or if TN just took much of him away to recover from.
A month ago I begged him to see a specialist again. It seemed past the surgery recovery phase and it was just staying the same. He admitted he wasn’t feeling the best. By August he was on several meds again and dealing with horrible headaches.
We went on Thursday. We didn’t expect what we got. He now has occipital neuralgia which means it has moved to another main nerve coming out of that nerve center. The surgeon is unsure if this happened as a result of damage during surgery or if it just the nerve still healing.
My guy also believes his TN is not in the surgery induced remission because since it has been cold he has been struggling with jaw pains again. The surgeon is not convinced. He feels like we have to deal with the ON to figure out the TN.
The headaches I have been yammering on and on about for t he last four months were occipital migraines. A very painful migraine. But thankfully (I guess) his tolerance for pain is high because he barely notices it or classifies it as pain. As we discussed with neuro my guy kept saying, “But it doesn’t really feel like pain.” But I watched the Dr.’s face and he shook his head and grabbed my hand and said, “That is nerve pain.” He went on to explain that his inability to recognize it as such is concerning.
Next Thursday my guy will undergo a nerve block procedure that will aid in the diagnosis of and possible treatment of the occipital neuralgia. It is done outpatient in the neuro and spine center in Fort Wayne. If it is just a healing nerve his relief should be immediate and it should allow him time to heal. He also can continue to have them every six months as needed. If it doesn’t help than we are looking at nerve damage.
That doesn’t mean he is out. It just means our options are different and risk/benefit analysis needs to happen. There are med options and surgical options. And the med option we already tried. He took him off all of his previous meds which were dangerous to continuously take. He replaced it with some that are kinder to his body and geared more toward the neuralgia he is facing.
I feel positive about this because he has a plan and again he doesn’t feel crazy. All of the neuralgia’s are not common which means you have to have skilled doctors who know how to not only treat, but to treat the patients they work with. Thankfully, we have been blessed.
I am still rejoicing in the fact that our lives are better than they were. I am rejoicing that he can be a daddy and husband. I am rejoicing that he can go to work and wants too. I am rejoicing that I have the usual support system I do.
Sometimes I do wonder when it all gets easier. But I know that I am lucky because I have him with me. I go to bed at night with him and wake up with him in the morning.
And again I know there is a story here to be told. I am just not sure how to tell it other than my blog. The most important story though is the one my family is building. My girls get to see love and marriage and commitment. They get to develop and witness great strengths beside great defeats. There is beauty and character in a story like that. But nothing more important than Great Love.
I am not gonna lie and tell you that it all looks as beautiful as it is written in the above prose, because it doesn’t. I am sad, I am angry and I am heartbroken. I want it to stop and I want to say no more. But I can’t. I love this man. I hate that he has to go through any of it. But I also know his pain is much deeper than my own so I will fight on.