Start From the Beginning

Where to begin...? I suppose from the beginning. This is me

 

My name is Kelly. I am currently a 28 year old mother of two who struggles daily with neck pain, headaches, numbness, tingling, nausea, fatigue, basically- you name it, I have it!
 
About 3 years ago I was hurt in a car accident. Not long after, I started with debilitating headaches which start at the base of my skull (typically on the right hand side) and radiate upwards to my eyes. I went to my PCP, who sent me to a Physiatrist, who sent me for an MRI or my cervical spine and then another and then another. Finally he told me, in a way that made me think I had a month to live, that I had an 11mm syrinx (a fluid filled cavity in the spinal cord) from my C-5 to C-7 which to him was unfamiliar. From there I was sent to a local Neurosurgeon who quickly brushed me off.

Trying to find relief, I received injections, went to physical therapy, even saw a chiropractor and all to no avail. In fact-most times I left feeling worse then when I walked in. After hours of web searching and reading forums and blogs and WebMD, I realized that there are many other people who are going through the same things. Most have Chiari Malformation (where the bottom part of the brain, the cerebellar tonsils, sag into the spinal column creating crowding and blockage of spinal fluid.)

Desperate for answers, I sent my scans and medical information the The Chiari Institute in NYC. I couldn't wait for a response and took the first appointment they could give me. After 2 trips to NY and numerous more scans and testing I was told that I have Syringomyelia, Low Lying Cerebellar Tonsils, Retro Odontoid w/ Pannus and Osteopenia. It was recommended that I undergo a Cranio-Cervical Fusion. Put bluntly-I would lose about 40% range of motion in my head and neck for the rest of my life. They wanted to fuse my skull to my neck and cross their fingers. Don't get me wrong, the Chiari Institute are educated and thorough and sincere but this to me sounded like torture. I can barely get comfortable with the ability to move my head, what would I do if I couldn't any longer!?  I used traction and wore a neck brace and took more medications then I can count and nothing helped much. 
And so it began..more searching for now a second opinion.  The pain in my neck and between my shoulders was there more then it wasn't. I was waking up in the morning with no feeling in my leg what-so-ever. I would literally fall to the ground. It seemed so peculiar to me that all of these stories I have read are diagnosed with Chiari and I was not.

Skip ahead to today-at this point I have seen 4 neurosurgeons, 2 neurologists, a physiatrist, a family doctor, a chiropractor, and many others. One surgeron told me I need the fusion, one told me I do not need surgery yet and another said there is nothing wrong. Most recently I saw an SM specialist who says that I have Syringomyelia, Cerebellar Tonsillar Ectopia aka: Chiari 0 and show definitive changes in my Thorasic spine. Chiari! He says that the fusion is the worst possible route. He would like to monitor my symptoms over the next 6 months with pain management and repeat MRI's and consider performing a Chiari Decompression.

Meeting this person who may actually be able to fix this made me feel hopeful and scared and disappointed and excited all rolled into one. I am thrilled to have some answers and feel so much relief to know that there may be a light at the end of the tunnel but that fact that the tunnel is still so long makes me feel frustrated and sad.

The most difficult part about this illness is that some days I am perfectly fine. I can play with the kids and clean the house and run errands with no problems and yet the very next day I am unable to get out of bed and the pain is so bad I can' think or move or breathe without wanting to cry. I can't make plans because I don't know how I will feel. I want to help my family and schedule play dates and spend time with my husband who is impacted by all of this just as much as I am, but a lot of times I can't.

So as of today I am waiting. I am fighting and hoping and waiting some more. I started this blog because I have read others that have helped me so much. I want to help even just one person. I am hoping to document the rest of this journey and maybe one day it will help someone find an answer. Spreading awareness has allowed me to except. I hosted a charity walk this past June to benefit CSF. We raised over $6000 at our first walk and ended up with over 100 registered walkers. I have bumper stickers and t-shirts and bracelets to put the word out. I also don't want it to be forgotten that there are an incredible amount of people suffering from these disorders who don't know or who are told that their symptoms are unrelated. That is not true. The hardest part about the last three years was that I was told I have idiopathic Syringomyelia meaning=unexplainable. There are people who have no reason for their syrinx but are still suffering. This needs to be addressed. I can guarantee that I could go to a different doctor tomorrow who may tell me that it is all coincidental and/or offer me a different diagnosis. We need to educate. We need to learn and we need to have hope.

I appreciate you reading and hope you'll share. I will post as often as I am able and will tell my story until there is nothing left to tell. For now, here is wishing you a pain-free day! Thanks again :)