Me

I guess I should tell you a bit about myself in the first post :) I'm 30 years old, married for nearly 9 years, together for 12. We met when we were teenagers and quickly fell in love. We also have 3.5 year old identical twin girls that are the absolute light of our lives! They drive us crazy at times but we love'em anyways. I'm also a huge animal lover and share my home with 4 dogs, 2 cats, 5 snakes, 2 frogs, and lots of fish. We live in the country, 9.5 beautiful wooded acres, huge lake, no neighbors in site and we enjoy living out our lives here. Oh, I also happen to be disabled. It's a long story but here goes.

5 years ago this past May, when I was just 24 years old, I was diagnosed with Syringomyelia. It's a lesion in the center of your spinal cord that progresses over time and can lead to paralysis and also death in some cases. In a hunt to find the cause of this, I went through a few doctors that told me it was no big deal and to come back when I could no longer walk. I didn't like that answer and decided to move on in search of a "real" doctor, a specialist in one of the diseases that causes this "syrinx" 80% of the time. 5 hour trip one way and I got my answer, Arnold-Chiari Malformation. It's a rare, congential condition where basically your skull is too small for your brain so in order to make room, your brain falls into your spinal column, blocking csf (spinal fluid) flow and thus causing it to back up and causing this lesion. The plan? Immediate, that day surgery! I was stunned, in shock, didn't know what to think. I've always been a healthy person and now they want me to go to brain surgery THE SAME DAY! While I was there, they did something called a cine mri that measures your csf flow. Mine was zero, I had no flow to my brain. This could easily cause a stroke or death. The doctor insisted I stay, I insisted I go home. At the time, I was in shock and did not realize the severity of it.

Surgery was scheduled for less then a month away. I continued to work and one day, shortly before surgery while I was enjoying a nice book outside during my lunch break, I started to feel funny. Tingling, dazed, confused almost. All of sudden, my body went limp. I couldn't move anything, I could not speak, I was paralized. Luckily a few co-workers were walking by and noticed me slumped over a park bench, called my MIL (why not 911, I don't know) and my MIL came and picked me up and took me to the ER. She explained what I was recently dx with and the severity of it. They ignored her. Several hours later, and my mom and husband down their throats, they finally agreed to give me a MRI to see if anything had progressed, luckily it did not. 13 hours later, I started to regain function and it took a few days to completely regain any normalcy. The reason local doctors said what happened??? Panic attack. Wow. I did not know a panic attack could do that, oh wait, it wasn't a panic attack in the first place! The specialist said it was absolutely a stroke like episode and I'm lucky I regained function the way that I did.

And that is why I have yet to find a good doctor where I live. I've been looking for all these years. My specialist has since moved and is now 5 states away now! I live near a very large city, 3rd largest in my state, yet no one knows what they are doing here. I have been told to make paper airplanes out of written prescription tablets b/c I don't want meds, I have been told that I should be dead or retarded <--her word, not mine. I was told that they could just laser the lesion off my spinal cord (which btw, they are not curable and surgery is merely a treatment, not a cure), I 've been told that nothing is wrong but to come back when I couldn't walk and maybe, I could be helped. Another doctor wanted to stick needles directly into the lesion and see what happens. Uh, no thank you.

Okay, this is getting really long. So I had surgery, surgery was successful in the fact that my syrinx (lesion) is now stable and has not progressed all these years but it was unsuccessful in taking my symptoms away. Just to name a few: daily headaches, blurred vision, numbness/tingling in hands/feet, chronic pain, muscle weakness, balance issues, neck/back pain, unable to open anything or even write with a pen b/c it hurts so bad, trouble swallowing, trouble walking due to muscle weakness, unable to feel hot/cold well, did I mention chronic pain? I have a list of approx 80 symptoms and I am still med free. I manage my pain with a healthy mind set, exercise (I have twins remember?), and good eating habits.

I also had neck surgery in 2007. A fusion and straightening surgery that left me with a cadavor bone graph and a metal plate w/ 4 screws. This was due to a shattered deg disc that left shards of bone in my spinal cord and also cervical kyphosis that was reversing the natural curve of the neck and causing my spinal cord to flatten out. My specialist gave me 1 year or less before it would snap my spinal cord and paralize me from the neck down.

My full diagnoses are: Chiari Malformation, Syringomyelia, Deg Disc Disease, Cervical Kyphosis, Scoliosis, Hip Impingement (need surgery for this right now), and Hypotension.

It's been a hell of a ride. My twins were delivered right in the middle of all of this. Children were not suppose to be an option for me. We went against the doctors and on the first try, with no medical help, I conceived our twin girls. That story is for another day :)