Last month, I had my two month follow up in Colorado, with the neurosurgeon. I had another MRI and then met with the neurosurgeon to review where I was at in my recovery. The neurosurgeon said the MRI looked really good and that my healing was ahead of where he thought I would be in my recovery. He said that it will still be a full year until I am fully recovered, but that I am headed in the right direction.
The surgery did exactly what we wanted, it was a success!! I am so thankful for all the people praying and supporting me throughout this journey and everyone that helped make it happen! God has clearly had His hand on me and was working in the details.
A week after I returned from the appointment, I had a neurology appointment at OHSU.
Originally that appointment was to rule out MS, but since I made that appointment, six months ago, I was directed to CO and had the surgery. We decided to keep that appointment because the neurosurgeon said that he thought I was having migraines with the Chiari headaches. The neurosurgeon also believes that some of my symptoms are not caused by Chiari. So, I went to OHSU to become an established patient and to discuss migraines.
My mom and I spent two hours going over all my neurological symptoms that don’t fit with Chiari. The neurologist asked a ton of questions and did some test and then brought another doctor into the room, who redid the same tests and some more followed by more questions. The tests showed that I don’t have any reflexes, which we already knew and is one of the symptoms not caused by Chiari. I have no tickle reflexes in my feet and weakness in my arms, legs, grip, feet, and significantly more on the right side of my body. I showed videos on my phone that I took of muscle spasms that I have been having for a year now. They went through all my videos and asked questions.
After having a discussion in the hall they came in and said they agree that some of the symptoms I am having are completely outside of Chiari. For example, the loss of reflexes, if it was caused by Chiari they would be hyper reflexes, not absent.
OHSU diagnosed me with “Benign Fasciculation Syndrome”. Which is persistent muscle twitching, tingling, or numbness in muscles. They made it very clear to me that it could just stay that and be that forever. They also laid out for me that it could progress into ALS. They said they want to see me every three months to monitor the diagnosis. They said I need to monitor my symptoms and if anything changes or I have any new symptoms I need to let them know immediately, because it could rapidly change.
It was shocking and scary. I met with my primary care doctor after that appointment to review everything with him. My primary care said if they were really that concerned then they probably would’ve done a nerve conductivity test in that appointment instead of waiting three months for my next appointment.
Another thing is: while there are still symptoms that are not caused by Chiari, I’m also still recovering from brain surgery, so that could be causing the weakness. My neurosurgery team also said they have never had a patient with Chiari and ALS.
In the meantime, the plan is for me to continue physical therapy and add in occupational therapy and swim therapy. My doctor said if there is a neuromuscular disorder the best thing to do is build up muscle.
I’m still struggling a lot with fatigue and Neuro fatigue. After I do physical therapy, I lay in a dark room with no visual stimulation for an hour. At first I was really annoyed that I have to do this, but now I’m grateful for the rest. The physical therapy feels like a full time job, it is hard and exhausting. I feel frustrated at how weak I feel afterwards.
It was hard to receive such great news from the neurosurgeon and then have it stomped out by this recent diagnosis. I keep needing to remind myself of how far God’s already brought me. Honestly, I just felt so defeated after that appointment and I’m still struggling with that feeling.
Please continue to pray for me and my family as I continue to navigate these rough waters and pray for some wisdom for the doctors. God had already brought me so far and I know He will continue to guide me through whatever comes.
May the Lord bless you,