Life ain't perfect

I have been feeling the need to share my story of my struggles with my health for a while now, but honestly I don’t understand a lot (most of it) and I don’t have answers on how to handle it or how to make it better, and neither do my doctors. I often refer to my diagnosis as “my brain thing” cause that’s easier than saying Chiari Malformation, and it is a coping mechanism, it makes me sound like I don’t know what I am talking about, cause half the time, it is hard to know what I am talking about.

I was diagnosed 9 years ago at the age of 11. I had seen “headache specialists” my entire life and they kept telling me that my headaches were from stress or that it was all in my head, everybody gets headaches. But I knew, and my parents knew, that mine weren’t like the headaches that everyone else gets. I remember holding my hands to my ears and squeezing my eyes shut as I cried and cried cause there was nothing that would make the pain stop. I remember having to tune out my teachers, my siblings, and all surrounding noise. Rooms were always kept dim if it were up to me, and I spent most of my time with my head on a pillow asking my mom to bring me things. They were unbearable. And they were constant. Always weighing down on me. Finally when I was 11 doctors started to take me seriously and referred me to a neurologist to get an MRI at Primary Children’s Hospital and shortly after that I was diagnosed with Chiari malformation. Traditionally, Chiari Malformation has been defined as the cerebellar tonsils descending more than 3-5mm out of the skull. However, research has shown there is no real correlation between the amount of descent (or herniation, basically my brain sticking into a part of my skull that it isn't supposed to be) and the extent of the symptoms. Some people with herniations of less than 3mm are extremely symptomatic and some people with quite large herniations are symptom free. Because of this, doctors are now focusing on whether the cerebellar tonsils block the normal flow of cerebrospinal fluid (CSF). The current theory is that disruption of CSF flow is a more important measure than the size of the herniation (from what I have researched, this is why I could possibly have to have a C-section because the stress of labor can be too much for my CSF fluid to handle). 

 They put me on a medicine called Diomox that was supposed to help keep the symptoms controllable and slow the progression. I was on that for 7 years total. I got MRI’s every three months to track the progression of the herniation, and when I was 13 received a spinal tap to relieve some of the pressure that had built up in my spine causing extreme pain. There is also a pocket of fluid in my lower spine, called a Syrinx. “Syringomyelia is a neurological disorder characterized by the formation of a fluid-filled cyst (syrinx) within the spinal cord. This cyst may, for unknown reasons, expand during adolescence or the young adult years, destroying the center of the spinal cord as it does. As the syrinx expands, it affects the nerves that stimulate the patient's legs, arms, back and shoulders. In turn, the affected individual may feel considerable pain and weakness, and may lose the ability to distinguish hot from cold objects. The combination of symptoms and signs may vary considerably from person to person, depending on where in the spine the syrinx is located and how much it expands over time. Often, the symptoms develop slowly. Unless the condition is treated surgically, it may lead to neurological deficits and chronic, intense pain.” Since mine was found when I was 13, during my adolescence years, it was my growth spurt that was making the symptoms flare up. My arms constantly felt like bags of sand, 1000 pounds, like someone was sitting there punching them over and over. I still have this syrinx today, and the main symptom I experience is excruciating back pain between my shoulder blades, like an ice numb feeling. 

My vision started to get really bad around the age of 13/14, I experienced blackouts, constant blurred vision, and if I were looking at something for too long, like watching tv the room would start to shake. My peripheral vision almost disappeared. Mostly what I remember from this time is missing too much school to go to doctor appointment after doctor appointment; I was almost held back in 7th grade. I was told Chiari acts up or the symptoms worsen during growth spurts, which is why everything got worse around this time. I was told by my doctors that surgery normally makes the symptoms worse, and that most patients still experience severe migraines after the surgery, so I decided that it wasn’t worth it, cause brain surgery is a big deal, and it was too much for my 13 year old self to think about. After my spinal tap and a higher dosage of Diomox, symptoms started to slow down and become manageable. MRI’s went down to every 6 months, and then moved to once a year. When I turned 18 we moved states and I was now at the age to see a regular neurologist, one that I did not like. She took my off diomox and basically said I was good to go, I don’t need to come in for regular check ups anymore and basically live life like I don’t have Chiari. Come to find out, this was probably the worst thing that could have been done for me. My symptoms slowly started to creep back at an ever forceful rate, like they were making up for all that lost time.

In the past year or two, the symptoms are just as bad as they were when I was 13. I experience a migraine guaranteed everyday. Getting out of bed is hard because I feel like I am going to fall over the second I stand up. My arms are numb a lot of the time, an my vision goes in and out of being blurred. I can feel the pressure built up behind my eyes and I feel like they are going to be pushed out of their sockets at any time. I am always tired and weak. My body doesn’t have the tolerance I need it too. But because I have been living with this my entire life, I get really good at pushing the pain aside, trying my best to ignore it and do everything as normal, when sometimes I have to realize, that just isn’t reality for me. Since I have been all over the place these past couple years it has been really hard for my doctors to keep up. Each neurologist has a waiting list of at least 4 months, and half the time they don’t even know enough about Chiari to help me in any way. With my symptoms getting back to pretty much unbearable, I have been doing a lot more research on the surgery. I don’t want any old neurologists to do it, I am nervous enough as it is. So through out my research I found a neurologist that specializes in Chiari Malformation and the surgery., thankfully to my advantage, he is located here in North Carolina! 5 hours away, but I was willing to travel anywhere so this is amazing! Unfortunately we can’t do anything while I am pregnant, but I have already talked to the doctors and we will jump right into getting things hopefully worked out after the little lady comes!

Now I know this is a lot and it can get confusing! Trust me, its me and I have a hard time keeping it all straight!  And I don’t even know why I’m really sharing all of this cause normally I keep it all very private, but I’ve just felt that I need to get it all out lately. I mean even my very best friends don’t know this! Really the only people that know all of it are my husband and my mom. It feels good to get it all out.

I would like to say I've had the most positive outlook through all of this and fought it with a smile, but that is not true. There are days that I just complain and complain and wish that I could just jump on the tramp with everyone else, walk up the stairs without feeling like I am going to drop to the ground, wishing that I could play outside all day without the heat beating me down, and so many other things. But there are so many things worth smiling about, worth laughing about, and no medical struggle is going to stop that!