Weathering Chiari

Hello friends,

It is hard to believe today is the one-year anniversary of when I had brain surgery. On one hand it feels like it was only yesterday that I was in a hospital in Colorado, and on the other hand time has felt like it has slowed, and the months have drag on endlessly.

I went out to dinner with my family to celebrate how far I have come in a year! We went around the table, and everyone told a story from that day in Colorado. My parents shared how intense it was for them waiting in the waiting room for seven hours. Its funny to me because from the time I was taken into the surgical room to waking up in recovery it felt like ten minutes. When I woke up in recovery, I think that was probably one of the funniest moments of my life. I woke up because someone was talking, after a few minutes I realized it was me who was talking to a nurse sitting by my bed. Once I realized I was the one talking, I still couldn’t stop myself from talking. I have never had that in my life where you feel like you’re watching someone else speak through you. The nurse was so patient, but he also seemed a bit exasperated. I was going on and on about how my head was falling off and someone needed to do something about it. The nurse kept telling me that my head was fine, it was still attached to my body and if it did fall off, they would call the neurosurgeon to come sew it back on. I countered with the fact that the neurosurgeon lived in West Virginia (I have no idea why that state was floating in my mind) and because of that he wouldn’t be able to come. I remember I kept thinking, “why am I saying that?” and “stop talking.” Thinking back to his facial expressions I wonder how long I had been talking before I started waking up.

This past year has been the hardest year of my life. I was diagnosed with a rare neurological condition, had endless appointments and tests with different doctors and specialist, underwent brain decompression surgery, had most of C1 removed, and was misdiagnosed with ALS. It’s been surreal and a whirlwind of emotions.

 Through it all though there has been countless blessings and answered prayers. I connected to the right neurosurgeon, Then I fit the criteria for surgery. Finally, I was able to go to Colorado to have the surgery because my family, friends, and people I have never met came together and helped me get there.

Currently, I go to physical therapy once a week, I am still working on strengthening my neck and overall strength and balance. Before I had surgery my symptoms were so bad, I couldn’t do much and so I became deconditioned. I am working on building up my stamina, endurance, and just overall strength.

 The surgery itself was a success and did what we wanted it to! The biggest thing surgery helped was constant pressure headache that would not relent. They physically removed part of my skull and C1 to take the pressure off and make more room for my brain. That helped a lot of my symptoms and did what we wanted it to do.

When I first met with the neurosurgeon in Colorado, he discussed with me that some of my symptoms were not caused by Chiari Malformation. Which is why the previous neurosurgeon didn’t think Chiari was causing my symptoms and that surgery wouldn’t help. The neurosurgeon in CO said that these symptoms wouldn’t be helped by surgery because they were unrelated to Chiari. That is why I saw a neurologist at OHSU and was wrongly diagnosed with ALS. There is some neurological thing going on that is puzzling the doctors. The left side of my body is weaker than my right and my left hip sometimes isn’t stabilizing. I continue to have headaches/migraines, visual distortions, nerve shocks in my limbs, numbness, and I still am not sleeping well. There are a lot of other weird symptoms that shift around.

My doctor and neurosurgeon have decided to send me to the Mayo Clinic in Minnesota. They said that I have exhausted the specialists in this area (OHSU and UW) and have been trying to determine which Mayo Clinic, Harvard, Sandford, or the Cleveland Clinic to send me to. My primary care doctor suggested I reach out to all of them to see which of them thought they could help me. My neurosurgeon was able to narrow it down to the Mayo Clinic in MN. He says that would be the best place to go for a “neuromuscular disorder”. I am relieved because all the paperwork and talking to so many different places felt so overwhelming, and we hadn’t even started yet.

The next step is to meet with my doctor and then he will write the referral letter to the Mayo Clinic.

This year has been an emotional roller-coaster. There has been moments of pain and sorrow and joy and relief. There has been periods of isolation, loneliness, heartache, and anger mixed with peace and rest. I am learning to look and cling to the joy and the moments of happiness in the chaos as opposed to waiting for the storm to pass to find it. It does not always feel like a storm because I’m passed the worst of it, but it sometimes feels like I’m in a desert. I still don’t have the answers and they seem like they are just off in the distance, like a shimmering mirage that is just out of focus. Hopefully going to the Mayo Clinic will be getting closer to some of those answers.

Thank you to everyone who has helped me throughout this last year. I am so thankful for all the support I received and the love I have felt.

God bless you all,

Shae

“The steadfast love of the LORD never ceases; His mercies never come to an end; they are new every morning; great is Your faithfulness.” Lamentations 3:22-23