Help Mom Face Risky Brain Surgery

Oh...where to begin without droning on and on and on.

My name is Brooke and I'm a photographer and a single mom to two beautiful kids who are 8 and almost 12. The photo (courtesy of Lisa Carmody Photography ❤️) was taken when I was still okay. It was 4 months after the (second) car accident that changed my life. I looked okay and my headaches were getting worse but the doctor didn’t think anything of it. I could still function then.

I was just recently diagnosed with Chiari I Malformation, EDS, tethered spinal cord, and multiple herniated discs. I had a neck fusion in January and am facing more surgeries.

EDS is a genetic connective tissue disorder that causes extreme and chronic pain and fatigue among other issues. Chiari Malformation is a skull deformity that causes your cerebellum to “fall” down into your spinal column I causing compression and a vast list of debilitating symptoms.  

While people with Chiari were born with it, mine was acquired. I had no problems living a normal life until a man texting and driving robbed me of my future 4 years ago.   I just didn’t know it at the time. He changed my entire life and took my ability to be the best mom I can be.  My ability to work.  My ability to function.  And he walked away without a scratch and just a ticket.  

I have been fighting this battle for over 4 years now.  And thanks to the new answers and diagnosis I received a couple of days ago, it looks like my battle has only just begun.  They believe that the type of EDS I have is vascular type which doesn’t always have the best prognosis. Neither EDS or Chiari are curable but there are treatment options. I can live a normal life.

I went to a neurologist after the rear end collision multiple times and she didn’t think an MRI was necessary. My symptoms were scary and extreme. They just got worse and worse. My symptoms began to affect my business and my life in such a negative and traumatic way and my life started to decline at a very rapid rate. Very few people believed me. And I don’t really blame them...with multiple visits to a neurologist combined with many ER visits that all said I was fine...what else could they think? I tried so hard to hide it for so long. There were times I would stand up at sessions and feel like I was going to pass out. Editing took longer and longer until it became impossible to do without excruciating pain or motion sickness. I would either sleep too much or not at all. I was terrified but I didn’t know where to turn.

Well, I knew something wasn’t right. And so did my family. They didn’t think it was physical at that time. But I never really let anyone know how bad that second accident was. I pretty much blocked it out after it happened. I mean who ends up severely injured in two separate car accidents they didn’t cause? So I got my medical records. The neurologist had diagnosed me with a head injury and post concussive syndrome and made note of multiple things that would usually result in an MRI. But the neurologist never told me any of this. Finally this past November I went to the ER with dizziness, extreme pain, blurred vision, and multiple other symptoms. And the doctor there talked to me for quite some time as I cried and told her everything. She called the neurologist and sent me straight there and an MRI was ordered that same day.

I am now under the care of a great team of doctors who are all working together to decide what’s best for me. They found all the answers. Usually they would suggest surgery for my spine and the brain surgery, but I have to have genetic testing for the vascular EDS first. Depending on what type of EDS I have it could change the type of surgery.

So for now, I’m in a waiting pattern. And this isn’t even the first set of injuries I received because of a negligent driver.

13 years ago I was in a devastating car accident caused by another negligent driver. I shattered my entire right foot and ankle including my heel and did damage to both of my knees. After a 7 hour surgery to put a plate and 10 screws into my foot, months in a wheelchair, and years doing PT and using assistance I was able to walk again.

However, while I look perfectly normal on the outside, I have pain every single day. I can't stand for long periods, walk long distance, or walk on uneven surfaces like sand.

While I've suffered pain for quite some time I started my own photography business about 6 years ago and was able to make do and support my kids. I also went to school and earned an associates degree while running my business and working another full time job.

However the pain was becoming unbearable the last 6-8 months and I went from shooting up to 14 sessions in one weekend to being unable to work completely.  

In the last 4 years I have suffered from daily headaches along with other scary symptoms such as balance issues and my hands and feet going completely numb, collapsing, trouble swallowing, extreme fatigue, migraines, shooting pain in my head, and pain all over.  

Since I cannot work my mom is currently paying my bills. But she can only do so much. There are treatment options that aren’t covered by my auto claim. They will cover the Chiari and spine injuries but they won’t cover the EDS or testing because it’s a genetic disorder. I do not receive any help from the state as of right now.

Any help would be greatly appreciated and would go towards medical costs or living related costs. It is frustrating to have worked so hard and have had so much taken from you. I will always continue to fight and to work harder every day. I know this is just a temporary set back for me and I will be back to my photograph business and back to being able to LIVE my life.

Thank you all so very much and just know that I will one day pay it forward.