Cranial Decompression Surgery (pt 2)

Hi! My name is Brittany and I currently reside in Orlando, FL although originally from New Orleans, LA. Throughout my life I have battled debilitating migraines, ever since I can remember. Little did my family and I know, there was an underlying reason for these migraines. In 2013 I got into a major car accident and after this the migraines increased in frequency and pain. We started taking many trips to the neurologist to find a solution and eventually got escalated to a neurosurgeon. It wasn't long before my neurosurgeon diagnosed me with a birth defect called Chiari Malformation. This is a birth defect that usually goes unnoticed unless you have some type of imaging done. Thankfully because of my car accident, we were able to find this problem and take the proper route to try and solve it. The car accident was a blessing in disguise.

Chiari Malformation is a birth defect in which your skull is mishaped thus your brain cannot rest as it doesn't have room. This normally causes the brains tissue to began to fall into the spinal canal. This can cause a variety of symptoms not limited to just migraines but also problems with motor skills, neck pain, muscle weakness, and more. We discovered that because my brain tissue was falling into my spinal canal it caused a sack of fluid called a Syrinx or Cyst in my spinal column. Should this cyst continue to grow, it can result in permanent damage to your spinal column as well as paralysis known as paraplegia or quadriplegia. After weighing our options, in December 2014 I had a cranial decompression surgery to help relieve this pressure and lessen the syrinx. The neurosurgeon shaved the back of my head, made an incision, and went in to remove a bone in my skull. This would allow my brain to have more room and remove the blockage my brain tissue was creating. It was one of the most painful experiences, but I was so thankful and excited to find some relief. Things got much better after that, I had less frequent migraines and they weren't so intense, life had become much better.

Unfortunately in 2019, symptoms started to come back. I was constantly getting migraines that would bring on nausea, light/sound sensitivity, auras, and more. The cyst also began to cause issues in my coordination/balance and I would get consistent numbness or tingling in my hands/arms/legs/feet. Post-Pandemic I returned to the doctors with a new neurosurgeon located here in Orlando. Since 2021 I have had multiple doctors appointments to discover what was going on and to hopefully find a solution. Nine MRI's later and multiple doctor visits, here we are. Most recently my neurosurgeon was able to confirm that my cyst is still in my spinal canal and it has grown in length and width. While the first Chiari surgery did remove the blockage and created more space for my brain, it unfortunately failed when it came to the cyst in my spine. My neurosurgeon presented me with a couple options recently on ways to solve this. Those being:

Speaking with my mother and looking at my current symptoms and timeline, we have decided to proceed with the cranial decompression surgery. This surgery is exactly the same as my first brain surgery expect that the bone is already removed, the neurosurgeon will be going in to replace the original derma placed during my first surgery with a synthetic one which will allow for even more space. It seems the scar tissue has also calcified into a bone like material so they will be removing that as well. While I am terrified and my previous experience with this surgery was miserable, I am looking forward to a day where I can get back to living my life without the fear of a migraine disrupting that. This is where the GoFundMe comes in. The surgery will result in 4-8 weeks out of work. While I do get short term disability, I only get up to $200 per week. That means I am losing about 70% of my normally monthly salary. While I am thankful I will at least get something, I will not be able to cover my rent, bills, etc... I am asking friends, family, and even those who may have stumbled upon this page to donate if you feel incliined to do so. At the end of the day the support and kind words from those that surround me will always mean more than any monetary donation.

Surgery was originally schedule for May 20th, but due to financials and some work things arising, we have moved the surgery to July 1st, 2024! This GoFundMe will be open up until the last possible minute, but we have decided to start collecting donations now so that we can prepare financially the closer we get. Any donations are truly appreciated. If you would like to learn more about Chiari Malformation or support others with this same defect, you can see the links below. I have included a link to Conquer Chiari, the largest private funder of Chiari Research, as well as links to learn more about Chiari Malformation, its symptoms, and treatments.

(https://www.conquerchiari.org/donate)

(https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Chiari-Malformation)

(https://www.daysoftheyear.com/days/chiari-awareness-month/#:~:text=History%20of%20Chiari%20Awareness%20Month&text=State%20officials%20across%20the%20country,September%20as%20Chiari%20Awareness%20Month.)

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

Thank you for taking the time to listen to my story. If you would like to share this, it would be much appreciated. Keep on the lookout for updates as we get closer to the procedure as well as post-op update. Thank you!