Friends,
There was a HUGE answer to prayer today!! I finally got an appointment with a Neurologist after a year-long wait! I have only been able to see a neurologist twice since I was diagnosed with Chiari Malformation two years ago, and that was after I had brain surgery. Once Chiari was the diagnosis I was sent to a neurosurgeon.
I had my appointment with my doctor today and we discussed the issues with referral, all the systemic issues, and not being able to get an appointment with a neurologist until March. He told me that he was going to reach out and talk with two neurologists at OHSU that were recommended to him by the pediatric neurologist. He was also going to reach out to other neurologists too.
Before I had surgery none of the migraine medications I tried helped because my headache and pain were physically caused by my brain stem being compressed and squished by my skull. My brain decompression surgery fixed that. Post-surgery I am feeling other types of headaches that were probably overshadowed before.
My neurosurgeon and a neurologist both agreed that I have at least three different types of headaches/migraines. While my brain has been healing, I have not tried many headache medications, just one and it didn’t do much, it just left me groggy and irritable. Today, I asked my doctor if he thought there was a medication I could try for my constant headaches.
Since I have had brain surgery my blood pressure has been on the lower side. I have always been on the lower side of normal, but now I am just a few numbers off from it being a concern (my last reading was 97/56). Beta-blockers are usually what is used for migraine prevention, but my doctor said that a side effect they have is dropping blood pressure and heart rate, which makes him nervous. He did put me on a different kind of preventative medication, and I should know if it is helping in a month. It is not supposed to stop the migraines completely. It is just supposed to lower the pain down a notch and cut down how many migraines I get.
We also discussed getting a patient advocate to help navigate everything. We left the appointment and then about an hour later a manager from the office called and said that my doctor had talked in depth with her about the issues and she wanted to talk them through with us. After we talked, she asked if she could make a few calls and then call us back.
Five minutes later she called back with an appointment NEXT MONTH, on the 20th, with a neurologist at Good Samaritan Hospital in Portland. She said the neurologist said that he wants to go over everything and help find a root cause. Praise the Lord!! Thank you to everyone who prayed with me!!
I also had a great weekend! Yesterday, I went up north to a concert in Chehalis, WA with my best friend, Mercedes, to see Mac Powell and We Are Messengers. It was such a fun day and so refreshing and needed time with my friend. We have been friends since we were twelve when we met at Bible camp, the same week I gave my life to Christ. I have always been grateful for our friendship, but these last couple of years I see what a treasure it is from the Lord. She took good care of me.
The concert was amazing! There was this moment when I was standing singing songs that I listened to while I was waiting for surgery, hospital stays, and the times I could not make it out of bed or off the couch. There I stood in a crowd of believers worshiping the Lord for all He has done for me. He has been so faithful to me and steadfast in his love.
At the concert, a woman came up to me and said she felt the Holy Spirit wanted her to ask me about my health and to pray with me. It turned out that she also has a chronic neurological condition. The three of us ended up talking and praying together for two hours after the concert. It was beautiful.
We were also able to meet the lead singer of We Are Messengers, Darren Mulligan, which was amazing. We talked together for a few minutes, and I felt encouraged and hopeful afterward.
There were moments yesterday at the fair that were hard on me physically. I had a lot of nerve pain, headache, weakness, and numbness, but I was determined to have a good time and Mercedes was a great help to me. I even went on two rides which is something I did not think would happen. We spent a long-time walking lap around the rides trying to find the ones that would be gentle and less likely to trigger an episode. We went on the Ferris Wheel and a swing.
I felt it afterward, but it was not the overwhelming, sending me to the ER kind of pain. This afternoon I went for my weekly infusion and now I am going to rest and have a quiet week. God is good. His mercies are new every morning.
Be blessed,
Shae
Weathering Chiari 