Huge answer to prayer this weekend! Thank you to everyone who has been holding me and this appointment with my neurosurgeon in your prayers.
The MRIs of my brain look good. My surgeon explained that the fluid pockets the ER was freaking out about is a surgical glue he used as another sort of seal. This glue is supposed to dissolve over time and he believes that’s what the collection of fluid is and is not overly concerned about it.
The feeling of the ball in the back of my head and the extreme pain in my head and scalp is from the Occipital nerve. He had to spread my muscles apart during surgery and the nerve was compressed and is still inflamed. He said full healing is going to take about a year. Nerves are slow to heal.
The treatment plan for this is a nerve blocking pain injection. Hopefully, my neurologist can do that in his office.
The full MRI of my spine showed several areas of Degenerative Disc Disease in my neck and lower back. We are going to just monitor the neck for right now, but I will start getting injections in my lower back that should help with my back pain.
I feel really good with this appointment and this plan of care. It’s heartbreaking having an illness and chronic pain that’ll be there for the long run, but I feel settled a bit knowing there’s a good plan in a place and with the relationship with my surgeon. He was awesome.
I had a hard time getting phone calls returned from his office a few weeks ago and shared my frustration. Turns out there was a problem with their phone system, but they are also adding a “Chiari” option to their phone tree that will be checked multiple times a day for messages from Chiari patients. I appreciate their responsiveness. I just got caught in the craziness of switching systems.
Going forward, I feel like we have a good plan in place. I will continue to work with multiple physical therapists for different therapies and really work on gaining strength and balance. He also mentioned treating my fibromyalgia more aggressively and said a pain management doctor can help do that along with the injections in my lower back for the Degenerative Disc Disease.
We are going to do another MRI in 9 months and come back to Colorado for a one year follow up. I’m definitely feeling more encouraged with this last appointment.
We also had a trip home with Angel Flight West! It was a smooth flight on a very cool jet! The pilot was so kind to donate his time and plane.
Thanks for all the prayers,
Shae 💜
Weathering Chiari 