Brain Surgery/Recovery Fund

Brain Surgery/Recovery Fund

From Kimberly Brown

Help Kim stay afloat while she awaits and recovers from brain surgery. Donations go directly to bills, medical equipment, and travel to surgery.

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Update #8

about 1 month ago

Surgery was a success! They had to fuse a bit farther down in my neck than expected but it shouldn't impact my healing. The first 4/5 days were extremely painful but I am home now and nearly two weeks post-op. Each day gets a little easier. Full recovery is expected to be anywhere from six months to a year but I can already happily report improvements in two of my symptoms.
I am SO incredibly thankful and relieved to have had this surgery so I can start to move forward with my life and my goals :) We are unsure when I will be able to work again but that prospect is both intimidating and exciting.
Thank you all for your support!

Important Note: This surgery did not "fix" me. We knew it wouldn't per the advisement of three neurosurgeons prior. I may continue to have related symptoms because damage was done due to the impingement of my spinal cord, brainstem, and cerebellum. It remains to be seen what will improve and what will hang around but I have hope :)
I also still have Ehlers Danlos Syndrome and damage to a few joints including my lumbar spine so I will always have chronic pain. This is just a reality. None of this is to say I am not optimistic about my future! I have a great medical team and am confident I will find my new normal as a happy, hopeful, ambitious, and resilient disabled woman

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 type 1.5 , 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:
about 1 month ago

Update #8

Surgery was a success! They had to fuse a bit farther down in my neck than expected but it shouldn't impact my healing. The first 4/5 days were extremely painful but I am home now and nearly two weeks post-op. Each day gets a little easier. Full recovery is expected to be anywhere from six months to a year but I can already happily report improvements in two of my symptoms.
I am SO incredibly thankful and relieved to have had this surgery so I can start to move forward with my life and my goals :) We are unsure when I will be able to work again but that prospect is both intimidating and exciting.
Thank you all for your support!

Important Note: This surgery did not "fix" me. We knew it wouldn't per the advisement of three neurosurgeons prior. I may continue to have related symptoms because damage was done due to the impingement of my spinal cord, brainstem, and cerebellum. It remains to be seen what will improve and what will hang around but I have hope :)
I also still have Ehlers Danlos Syndrome and damage to a few joints including my lumbar spine so I will always have chronic pain. This is just a reality. None of this is to say I am not optimistic about my future! I have a great medical team and am confident I will find my new normal as a happy, hopeful, ambitious, and resilient disabled woman

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Kimberly Brown posted a new update:
4 months ago

Update #7

Surgery is scheduled yet again. At this point, it is scheduled for June 15th.
After fighting with Medicaid for out of state coverage and nearly losing hope, I posted on an online support group and was directed to a neurosurgeon here in Colorado about four hours away. I met with him and he can do what I need. Being that there are only a few surgeons in the country who can do this surgery, it felt like pure luck that there was one closer to us (thank you to online community!). This surgeon has approached my case with curiosity, humility, and a desire for collaboration. I trust him and feel safe.
There will still be expenses with traveling in state (pet sitter, hotels, gas, in hospital comfort items, etc) so I am incredibly thankful for all the support from this campaign! I do believe it is still accepting donations even though it says "0 days left" so if you would be willing to share this with people in your circle to get us closer to the goal, I would really appreciate it.

Thank you all so much!
-Kim

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Kimberly Brown posted a new update:
7 months ago

Update #6

I've been putting this update off for a bit...my surgery has been postponed. The issue is mostly insurance coverage. Keeping everybody updated on everything is a lot on top of a difficult situation so I'm stepping back from sharing progress for a while. Thank you all again for the support and kind words. I appreciate it all.

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Kimberly Brown posted a new update:
8 months ago

Update #5

I forgot to mention in my recent update that I have opened an Etsy store! We are still struggling to make the trip to NYC work and since I have seen an improvement in symptoms since wearing my neck brace, I've fallen in love with sewing! Please take a look and share with friends and family :)

https://www.etsy.com/shop/KimsSickStitch

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Kimberly Brown posted a new update:
8 months ago

Update #4

Update:
I have a surgery date! I've been nervous to share it should something change but so far it seems pretty solid. On February 22nd I will be in New York City undergoing a rather intense surgery to treat my Chiari Malformation type 1.5, Cranio-Cervical Instability, and Basilar Invagination. Because the intersection of these conditions is pretty rare, my surgery team in NY is one of three in the nation. I will be operated on by a team consisting of a neurosurgeon to treat the Chiari, a neurosurgeon to fuse my cervical spine, and a plastic surgeon to put my neck muscles back in place (this is important for people with Ehlers Danlos Syndrome).
I've pasted a few links below that talk about the surgery I will be having, though I don't have a specific surgical plan in place (there are a few different ways to operate for Chiari depending on the patient).

https://www.columbiaspine.org/rarest-of-the-rare-chiari-patients-who-also-need-fusion/

https://mayfieldclinic.com/pe-chiari-surgery.htm

https://drgilete.com/7-things-know-craniocervical-instability/#:~:text=Craniocervical%20instability%20is%20common%20amongst,due%20to%20a%20ligamentous%20hyperlaxity.

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Kimberly Brown posted a new update:
10 months ago

Update #3

Small update because I don't have too much to share. With COVID and my surgeons not really being on the same page, surgery hasn't yet been scheduled. I'd be content to have a solid plan and date to plan for but at this point I don't have either. Here's a photo of me in my new accessory that essentially holds my head on. I will meet with my team again in six weeks.
Happy Holidays to everybody! Hope it treats you well.

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Kimberly Brown posted a new update:
11 months 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:
about 1 year 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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