Donate to Fix Kim's Brain

Donate to Fix Kim's Brain

From Kimberly Brown

Help Kim stay afloat over the new few months while she awaits out of state brain surgery. Donations go directly to bills, medical equipment, and travel to surgery.

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Update #2

22 days ago

The big neurosurgery appointment was last week! The surgeon informed me that I actually have Chiari Malformation type 1.5, not type 1. That just means that my brainstem is also herniated into my spinal column which explains the severity of my symptoms. We decided to go forward with surgery in New York City after Thanksgiving. I have a few more tests to get done before I can officially schedule to make sure the rest of my organs are up for it. The tentative surgical plan is a posterior fossa decompression and occipitocervical fusion. That may change based on more imaging and what they see when they open me up. It's a pretty big surgery and recovery will be lengthy but I will be able to do most of it at home. This surgery won't cure any of my conditions but I should see significant improvement in my symptoms and slowing of progression.

Some good news we received is that my basilar invagination (the scariest of my issues in my neck) is not as bad as we thought and won't require any extra intervention there!

I am thankful to have a plan and am hopeful that after all of this I can move forward with my dreams for the future.

More Info

TL;DR My skull and spine didn’t form properly so my brain and spinal cord are being smooshed.

From when my back pain started in 2014 to 2018, I successfully adapted to school and work even remaining in CrossFit a few times a week. I was often injured in adolescence, so I learned early how to pivot, to a point. By the end of 2019, the pain was so debilitating I had to quit working and started using mobility aides. In January 2020 I was rear ended and experienced whiplash which kicked off a whirlwind of neurological symptoms. I have since been diagnosed with Chiari Malformation, Cranio-Cervical Instability, and Basilar Invagination. All congenital defects though the symptoms were likely triggered by the collision.

 A Chiari Malformation is when there is not enough room in a part of the skull, so the cerebellar tonsils “herniate” into the spinal column and, in my case, press on the spinal cord from the back. Google will tell you this is common but it is less common than MS. Basilar invagination means that on top of instability in my Cranio-Cervical junction, my C2 vertebra has moved back and up so that it is pushing on my spinal cord from the front. Basically, what this means is that I have two cranio-cervical junction malformations in the same place pressing on my spinal cord from the front and back. This is causing significant crowding on my spinal cord and interrupting the flow of cerebrospinal fluid. Basilar invagination is a rare and serious anomaly which if injured, puts me at increased risk for stroke, paralysis, and death.

There is a surgery to fix this combination of anomalies, but I will need to travel out of state to do it. This discovery, while important and valuable for my plan of care, has pushed out plans for treatment delaying hope for improvement in my symptoms. At this point, I am unable to do much by myself. I would prefer to not bare my soul much more by sharing all my symptoms but if you Google the symptoms of the two conditions, I’ve got at least 90% of them.

I have also in the last year been diagnosed with a Hypermobile Spectrum Disorder (likely hypermobile Ehlers Danlos Syndrome), spinal osteoarthritis, degenerative disc disease, and Erythromelalgia. The hypermobile connective tissue disorder is my umbrella diagnosis that all the others fall directly under. The connective tissue disorder determines the types of treatment I receive and how successful they are.

There are a lot of pieces that make up the wonderful life I’ve had the privilege to live. I am proud to be recent graduate with a master’s degree in clinical social work (literally finished graduate school in  a pandemic with my brain falling out..). I am also a partner, friend, fur mom, and so much more. I am incredibly resilient and will come out of this experience stronger. I hope that I also come out of this experience able to work in the field I love. Currently, working even remotely is not an option for me. Engaging in everyday activities that I used to take for granted (showering, reading, talking on the phone, browsing YouTube) are nearly impossible to complete without debilitating fatigue and pain. I get migraines from face-timing loved ones and vomited my way into a full flare the last time I tried to kayak for 30 minutes.

I have never been in a body that is struggling so hard to keep functioning. Every year I gain respect for the amount of function and mobility I still have, though it is declining. I paint this picture to say that I no longer have the medical capacity to be too proud to ask for help. Any donation or share will help Amber and I pay our bills, acquire medical equipment I need, and pay for travel out of state for surgery. *I know finances are hard for many right now. Please only give what you can do so comfortably*

Thank you for taking the time to read and share! 

Warmly,

Kim  

**Please do not send me suggestions for magical cures or things you believe I could do for work. I have tried it all. I require surgical intervention**

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Kimberly Brown posted a new update:
22 days ago

Update #2

The big neurosurgery appointment was last week! The surgeon informed me that I actually have Chiari Malformation type 1.5, not type 1. That just means that my brainstem is also herniated into my spinal column which explains the severity of my symptoms. We decided to go forward with surgery in New York City after Thanksgiving. I have a few more tests to get done before I can officially schedule to make sure the rest of my organs are up for it. The tentative surgical plan is a posterior fossa decompression and occipitocervical fusion. That may change based on more imaging and what they see when they open me up. It's a pretty big surgery and recovery will be lengthy but I will be able to do most of it at home. This surgery won't cure any of my conditions but I should see significant improvement in my symptoms and slowing of progression.

Some good news we received is that my basilar invagination (the scariest of my issues in my neck) is not as bad as we thought and won't require any extra intervention there!

I am thankful to have a plan and am hopeful that after all of this I can move forward with my dreams for the future.

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Kimberly Brown posted a new update:
2 months ago

Update #1

Update: I still do not have any news about surgery. I imagine it will be quite a bit before I get a solid plan for that with COVID, waitlists, and insurance. In the meantime I will be doing physical therapy, pain management, and speech therapy. I met my physical therapist today and our plan is the best I've had yet. I am hopeful!
I am forever grateful for all of the people who have taken the time to read my story, share, donate, and send me a encouraging messages. Truly, I am in awe of the generosity in such a tumultuous time. I am feeling supported and loved.

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