Weathering Chiari

Yesterday, at my OHSU Neurology appointment there was a HUGE answer to prayer. The neurologist took ALS off the table! He said that theoretically I could develop ALS down the road, but that he would be shocked if that happened. Benign Fasciculation Syndrome (what they diagnosed me with there a few months ago) and ALS do overlap. but they are completely different conditions. I have gained strength and if I was developing ALS I would be weaker. We think the ALS scare happened because they were not looking at me before through the lens of someone who was only two months out from brain surgery. Also, this time many of my responses to the neuro tests were improved.  Last time I saw them, I was still so weak from surgery and barely past only walking to the mailbox and back.

I’m so grateful and feel relief over that.

There are still some symptoms that do not have any answers yet, but he will know more are he reviews my upcoming brain and cervical spine MRIs.  We will and go from there, the same response as my neurosurgery team.  They need more information first. I don’t have reflexes in my legs. I asked the neurologist why that was, he laughed and said that was a good question.

We came up with a new rescue plan for migraines and headaches and adjusted my medication. It’s been a challenge because I struggle with multiple types of headaches. Medication will not help with Chiari headaches, but sometimes it’s hard to know what kind of headache I am having. I don’t always recognize the migraine symptoms as migraine symptoms.

Thank you everyone for praying for me. God answered our prayers yesterday. It took a bit to sink in. It was a really stressful morning. Just preparing for that appointment I was not sure what to expect. There have been so many different disappointing neurology appointments over the last several years, but I think it went well.

While I still wish I had more of an answer about some symptoms I think there is a good plan in place. We told him everything my therapists have been saying and he placed an order for a neuro-rehab at OHSU to help with the cognitive issues. We also told him how everyone in my medical team is deferring to the neurosurgeon, but that the neurosurgeon did the surgery and does not do the aftercare. He said that he would take over and manage all the ongoing neurological issues. Which was a huge relief and another answer to pray.

I also have a lot more strength than I realized. He said while I’m having some weird neurological symptoms, he’s not too concerned and that the therapists can calm down a bit and continue on with treatment.  He said to assure them all that I am still healing from brain surgery and to continue with my treatment plans.

One of the therapists told me, the last time I saw her, that I was the first person she has worked with that has had this kind of surgery and C1 messed with to any extent. Most of my C1 is gone, so my neck must feel very strange to her, with such a large soft area. I’m not going to lie, that was a little unnerving. I think it’s just complicated because Chiari Malformation is not really heard of or understood that much, even in the medical community.

Thank you again for all your prayers and for walking with me through this. I am so grateful for all of you and your prayers, love and support. I am so thankful for all of you!

With love,

Shae Sobottke

“Wrong will be right when Aslan comes in sight, at the sound of his roar, sorrows will be no more. When he bares his teeth, winter meets its death and when he shakes his mane, we shall have spring again”

C.S. Lewis – The Lion, the Witch, and the Wardrobe