Blog

My Journey

Stuck Between a Needle and a Hard Place

The long awaited appointment with the neurologist was earlier this week and it was a complete disappointment. The neurologist was not at all familiar with Chiari Malformation and was not comfortable treating it. She focused the first half of the appointment on all the previous misdiagnosis before I was diagnosed with Chiari Malformation, starting when…

Answered Prayers

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…

“Accidentally Switched”

Hello friends, I know it has been a while since I have posted an update. It is still a challenge to keep up with messages and reaching out, being social, but I do read everything, and I appreciate and love all of you. It can still feel overwhelming, and I tend to need long breaks…

Slow Spin

Today is my 23rd birthday.  I know God has a plan for me, but I feel so overwhelmed. There are all these unknowns and unfinished pieces spinning around me that just won’t come to a rest.  It has been a while since I posted an update because I was waiting to have some more answers.…

Waiting.

Today I started weekly IV infusions for preventative measures against the horrible migraines I keep getting. Hopefully these infusions help. It is a migraine cocktail for pain, nausea and hydration. This morning I got an email from the Mayo Clinic telling me that they received a request for an appointment with their neurological clinic. They…

One Year Anniversary!

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.…

Answered Prayers

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…

Enough

It has been six months since I had brain surgery. Sometimes it feels like it has been so much longer, other times it feels like it happened yesterday. I’m grateful for the surgery, for all the symptoms it has relived. Mainly the horrible head pain in the back of my head. The symptoms are still…

Colorado & OHSU

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…

2 Month Update

It is hard to believe it has already been almost two months since I had brain decompression surgery. A few weeks ago I started physical therapy for my neck, it’s still super stiff and sore. I still cannot move my head up or down. I will not be cleared for that motion until I meet…

Loading…

Something went wrong. Please refresh the page and/or try again.


Follow My Blog

Get new content delivered directly to your inbox.