With a house full of pukey kids this week it provided both my guy and I with the appropriate amount of distraction as we built up to his appointment today. It didn’t really even bother me until I was sitting in the doctors office waiting for an appointment for number three.
I realized in that moment I sat in the same seat I sat in last year crying outside of our family doctors office. My guy next to me. We were both desperate. Desperate for answers and help. Those are the moments I often forget. Probably one of our weakest together. But also strongest.
As my memory jogged I got a butterfly in my stomach. I hurriedly checked my phone and baby girl #3 reminded me I just did it. Finally he text and let me know he was still in appointment. I made my way into office with her and she always asks for the run down on my guy and his latest. She again reassured me that he is working with some of the best doctors in the US and by far the best in Indiana. I breathed.
Finally I was able to talk with him. He seems comfortable with the new doctor and this new doctor is very familiar and comfortable working right along side Dr. Cohen. But like most neurologist (totally generalizing here) they want their plan and their method to start from scratch.
So he will wean off his current meds and then slowly add in a small dose of tegretol. This process will take threeish months and then we re-evaluate. He has worked with many post op MVD patients and said that is completely common for the the nerve to still be healing.
I won’t lie sometimes that feels like the canned answer and the thing you tell everyone who has a pain that you don’t understand. Not much explanation on it being bilateral and the occipital neuralgia we expected because it is just sometimes a part of this.
Therefore, a new beginning. I am glad for it because I would never want to rush back into surgery. We are committed to exploring all non-surgical options first. And when I saw we I mean him, I and his doctors. So it is a sit and wait and see what happens kind of situation. That way we know we have exhausted the safest routes before surgery is on the table again.
He does sound hopeful and that makes me so glad. Some of that may have been attributed to the fact that Mike Ditka announced yesterday he is holding an event at Arlington Park for trigeminal neuralgia. If you know my guy you know why this is a big deal for him. Not necessarily a huge Ditka fan, but football.
In three months he goes back and they reevaluate. If meds providing relief enough then he finds dosage that will work for him and his liver. If not then confer with Cohen and go from there.
Yea my guy and I are sitting there waiting again. We are a little less desperate and fearful. But still very much together and looking for the options.