Last Thursday I met with a new doctor for a second opinion. I was very hesitant at first because I was so scared of doing something that could make me worse. After the appointment I finally felt like I had found more answers. This time I left with hope and not a suicide death sentence.
Dr. McDonnell feels that my excruciating scalp pain is from my previous surgery in 2009. I also have pain on Cranial Nerves V and VII. The pain over my eye, in my eyebrow, in my eye, and down my cheek into my nose is coming from Cranial Nerve V. The pain I have in my ear and the lower jaw by my back teeth is coming from Cranial Nerve VII. He hasn’t given me an official diagnosis because he is having me undergo additional testing to rule out other possibilities.
I did have an MRI this week and it came back ruling out MS and it did not show a compression of the trigeminal nerve (Cranial Nerve V). Now I am aware that just because there is not a compression shown on the MRI doesn’t mean there isn’t one. There are numerous people that have had negative MRI’s but ended up with surgery confirming the compression. I am scheduled for 2 injections after the first of the year. The first one is a sympathetic nerve injection to help see if any of the pain I am having is a result of my sympathetic nerve system firing out of habit for so many years. The second injection is going to help be more diagnostic for the cranial nerves. Theoretically, it should help minimize or relieve the pain all together.
Dr. McDonnell also wanted to change my medications and see how well I responded to that. First we started by lowering my current medication and adding 2 new ones. Well 2 days on one of my new medications and I could hardly walk. I spent 90% of the day on the floor because my legs were too weak to move. That medicine was quickly stopped the next day. I was quickly reminded just how much my current dosage is keeping the pain at an annoying but tolerable level. So once I had the negative reaction to the new medication they had me increase the original medicine back up. The second medication I am on seems to be helping. It took several days for it to build up in my system and just today I can tell a difference. I have had several periods of break through pain that was pretty excruciating.
Overall I feel pretty positive about my new doctor and our current treatment options. It still amazes me how I am still able to feel pain even with the amount of medications I am on. Some days I even wonder how I can function.
My support team is still amazing and rock solid. One of the most beneficial members is my friend and neighbor that just happens to be in a similar boat. We share war stories daily and help encourage each other to keep pushing forwards. I really do not know how I would manage not pulling my hair out without her….oh wait I already got rid of that 😉 But seriously having someone going through the same thing has been a life saver. She makes me feel normal and that I’m not completely crazy.