Numbers 4 and 5

Goodness. Here’s a catch up from last fall and my Trigeminal Neuralgia...


I had Neurosurgery in November 2017. It was my 3rd and not yet my final. My surgeon was Dr. McGregor at the James Cancer Center at Ohio State University. This man.... where do I begin? He’s full of compassion, kindness, care and has such a gentle spirit. In addition to being one of the best in his field I feel fortunate to have found him.

The surgery has a 98% success rate at getting rid of pain by 80%+. I fell into the 2% where it made my facial pain far worse and brought on new symptoms I didn’t have before. I now have electrical shocks through my teeth and gums on the right side of my face at least 50% of the day. Taking a shower is proving to be interesting as water falling down my face can bring on a full TN attack. I take my chances.

Now that 6 months has passed I have scheduled back to back neurosurgeries at the end of the month. I’m having Neuromodulation devices implanted near my brain stem, my face and my spinal cord. These surgeries will be done by a colleague of Dr. McGregor. It’s considered experimental. I’m perfectly ok with that.

Upon seeing my newest MRI my new surgeon, Dr. D, told me that my Trigeminal Neuralgia has actually changed into a neuropathy. This news was devastating. I have 3 kinds of nerve damage in my face. Nothing is paralyzed and I’m grateful for that. He asked me what was my best case scenario for pain improvement after this procedure. I told him 10%. The edge would be off and I’d be able to function. He’s hoping to give me 30%. If I get 5% I’ll see it as a success.

If this doesn’t work then the implants are removed. I’ll ask about brain radiation. Ketamine infusions. Pain pumps. There are more options. I won’t give up.

In the meantime I am meditating, praying, visualizing, reading, listening to Irish musicians (Dermot Kennedy is a favorite)

https://m.youtube.com/watch?v=iad-ixZRlK4

After reading this you can imagine how exhausted I am. I won’t lie. The online communities are wonderful and there’s so much information to learn on making your life simple. I hired a housekeeper which takes so much pressure off. My slow cooker is my best friend. Having the laundry room across from my bedroom is beyond convenient. My twins have become very independent over the summer, which is a tremendous help.

I literally treasure every email and text I receive. To be thought of, written to... feels special. I’m grateful to those who reach out.

I apologize for any spelling/grammar mistakes. I need to sleep. Nite all.