Brittany’s Story (Chiari Malformation)

My name is Brittany and I’m 24 years old. Since 2007, I have had four brain surgeries; my most recent two being this year in February.

I spent most of my life with health problems that the doctors and specialists could not ever figure out. They ran test after test and would prescribe several different medications to try and help with my symptoms but nothing ever worked. I missed a lot of school because of my health, and as you can imagine I missed out on a lot of normal things, especially normal things teenagers do. My parents never stopped trying to find the cause of my health problems, and for the longest time neither did I. However, the day that a doctor told me that I should probably see a psychiatrist because my symptoms might be emotional I gave up. That day changed me forever and I was never the same.

I was fifteen when that happened, and with the decline in my health and with that being said to me my depression began. Around that time I was starting to have kidney problems, as well. My kidneys do not produce enough of the chemicals they need to function properly and as result I produce large amounts of kidneys stones. With this happening, my other health problems and my worsening depression; I completed my senior year in high school in a hospital home bound program through the school system. Somehow through it all, I was still able to graduate with honors.

I got my first job after graduation in child care and started college. It was shortly after that time when my good friend invited me on a ski trip where I ended up breaking my leg. At that moment in time, I felt ‘like what else could go wrong?’ However, it was truly my blessing in disguise because my orthopedic doctor was concerned with the numbness and tingling I was having in my hands and feet. I tried reassuring him that I had been having this for years and it had nothing to do with the fall down the mountain but he insisted on an MRI of my brain and neck just to be safe. When I got the call into his office and heard the news of my diagnosis, I was surprised. Over the years I had several MRI scans and not one doctor ever caught it… I had a Chiari Malformation. I never even heard of it before that day.

When I got to the neurologist and he reviewed my scans and examined me, he asked me a few simple questions: do you get a headache when you cough, or sneeze, maybe even when you laugh? I actually didn’t even know how to respond except by saying doesn’t everyone. I didn’t know that it wasn’t normal. He then referred me to my neurosurgeon where I was scheduled to have my first brain surgery on December 17, 2007. It was a day full of hope, excitement and relief. After 19 years of wondering and no answers, being made to feel like I was crazy, I finally knew what was wrong with me and I was having surgery to fix it. I was young then and looking back I don’t think I truly realized how serious the situation was. I was just so relieved to know what was wrong with me all this time. My surgery didn’t go easy; I had a CSF leak and a staph infection and had to have another surgery on January 16, 2008. I also had to have a PIC Line of a continuous flow of antibiotics for 8 weeks for the staph infection.

After what was a very long recovery I was finally living a life I never thought I would be able to. I wouldn’t have been able to do any of the things I did if I wouldn’t have had that surgery. Most of my symptoms were gone and the ones that I was left with were manageable. I was living on my own, still working in child care, going to college to become an elementary school teacher and interning in a 3rd-5th grade classroom. I was juggling lesson plans for my internship, program plans for work, homework, studying, bills, I was doing it all and keeping up. Like I said, I would have never been able to do that before, and the best part of all was my depression was better than it ever had been. I was off most of my medication and doing so well and I’d lost a lot of weight. I was feeling better than I’d ever had in my entire life. So when my symptoms started coming back, it was slow enough that I put it off as stress, lack of sleep and not eating enough; I was really in denial because I assumed I was ‘fixed’ once  I had my surgery. However, then I started passing out a lot and things started getting worse and as I started feeling worse physically, my depression snuck up on me fast.

I had to deal with my depression first off because I became suicidal. I entered a psychiatric facility to get help. From years of trying to find the right medications to manage my depression, I had been on every type of medication there was. So I was considered to have treatment resistant depression. It was in 2010 when I started my ECT treatments also known as Electroconvulsive Therapy. From May to December of 2010 I had 28 unsuccessful ECT treatments and it was very discouraging. As I was trying to fix my depression, my Chiari symptoms weren’t just slowly coming back; by 2011 they were back plus other symptoms I had never experienced before, and I’ve been experiencing symptoms of the Chiari since I could express that my head hurt.

By 2011, I’m not proud to say this, but I had tried to commit suicide twice. I was in a very low place and I had been hospitalized for my depression several times. After the second suicide attempt, I was introduced to a treatment plan called a Wellness Recovery Action Plan which my therapist, family, and friends helped me live by and manage. I wouldn’t have been able to pull myself out of of my deep depression without it or without them. I never thought I would be able to escape the emptiness and darkness I felt, but with the determination I had and with the support of others, I did. I owe so much to my therapist for the skills she has taught me because it was soon after that I found out that I needed another brain surgery for my Chiari Malformation.

On February 7, 2012, I went in for my third brain surgery. When I woke up, I had significant weakness on my right side. Unfortunately, after running tests, my neurosurgeon couldn’t give me any specific answer as to why except that there is so much unknown about Chiari Malformation and when it comes to the brain we just don’t know. Then after being home just a week, I developed two large gulf ball size lumps and started leaking spinal fluid. I was admitted into the ICU for 3 weeks with a lumbar drain. On February 24, 2012, I had my fourth brain surgery to close my CSF.

I had so much hope that with these surgeries I was going to have the same outcome as my first brain surgery as far as my symptoms going away, but unfortunately it wasn’t as successful. I’m now considered ‘well decompressed’ but left with all of the pain and symptoms of the Chiari and I need a walker to be able to walk. I am working in physical therapy to try and change that and also in ‘talk therapy’ with my therapist for support because it does become overwhelming. I do have my days, I have to admit. but I started a blog to not only share my journey through my recovery and illness but to help bring awareness to Chiari Malformation; which is considered a rare neurological disorder.

If you don’t know what Chiari Malformation is, it is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms (Conquer Chiari).

Although my life has not ended up where I had hoped it would be, or anything like I had pictured for myself, I know God has a better plan for me.  I know eventually my goals will be achieved as long as I keep believing in them and myself. I experience a lot of fear because of the decline I feel in my body at only 24 years old and it scares me for what I have ahead of me. But I read the power stories from the Fight Like a Girl Club’s website, I read my fellow Chiarians posts, I keep up with my blog and I look to my friends and family, and all together I am inspired to fight and to keep fighting every day.

Although my illness has brought me much pain and I hate what is happening to my body and inside my head, I’ve had so many blessings because of Chiari. Especially since my surgeries (I’ll admit most of them took me some time to realize). I’ve found new friends, became closer with people in my life, lost some others (for the better), I’ve met so many inspiring people along the way, found peace when I didn’t think it was possible and I can say that I have been actually humbled by the Chiari. I know pain, fear, hurt, loss, sadness, rejection and hate, and because of it, I know what it really means to feel happiness, laughter, love, compassion, acceptance and triumph. Oh, and know to truly appreciate it all.

I hope through my story I can show other who are going through a Chiari Malformation diagnosis or surgery that they are not alone because I know finding the support and resources can be difficult but it’s out there.

Brittany
Florida
Submitted 8-20-2012

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.