Monday, February 21, 2011

Part 3 ~ 2009~The Chiari (kee-r-ee)

January 2009
I started having all kinds of problems, but these problems were different.  I was dizzy, and my memory was really bad (worse than usual) the back of my head hurt where your neck and skull meet, like a headache... but just in that area. The pattern on the carpet (at work) would move up & down while I walked down the hallway.  My arms would go numb when I laid down to sleep, & I developed Sleep Apnea (due to the narrowing of my throat). Did I mention Dizziness??? Suddenly, I couldn't bowl anymore, I couldn't get my arms and feet to work together, I fell several times.  This is when I told my husband something was going on... And then, the one thing that made my family Dr order a MRI, I had lost the feeling in my left thigh, above my knee, on the outside, WEIRD!! My Dr actually thought I had MS. 

May 4, 2009 
I had a MRI. Come to find out I had developed a Chiari Malformation. That is a condition where your Cerebellum descends downward into your spinal canal. NOT GOOD!!  I suspect this happened because I still have my LP-Shunt in my spine.  It may not be working now, but when it did, I think on occasion it drained sooo much fluid that it caused  the descending cerebellum to occur. (I did some research on this.) I called a local Neurologist and made an appointment with him, bringing him my scans, with the report. Basically he was no help to me, and said I really don't know why your here. You need to see a Neurosurgeon... Now my neurosurgeon, on the other hand will not see a patient unless they have seen a neurologist first... Frustrating, I instantly call Dr Munoz's (neurosurgeon)office to make an appointment with him. LUCKY ME, he specializes in Chiari Malformations!! BONUS!! My husband takes me to Chicago to go see him, with my list of symptoms in hand... Scared to death! But freaking out because all the symptoms I had were making me feel like an 80 year old woman! I tell the Dr my story of how and when all this came about, he looked me right in the eyes and said, "some people have Chiari's, but with NO symptoms, these symptoms are obviously affecting your daily life, when do you want to schedule the surgery?" I had the MRI, saw two Dr's, & surgery all in May 2009.

May 29, 2009.
I had a Posterior Fossa Decompression. In layman's terms, they removed part of my skull in the back of my head, at the base, to allow the cerebellum "room". The cerebellar tonsils (the base of the Cerebellum) are what was being "pulled" down into my spinal canal, and was being smashed by my skull. So they remove part of the skull to allow room for it.  There's nothing they can do to reverse it, all they can do is help control the symptoms with the decompression surgery. Horrible, Horrible surgery...  He also took out my brain shunt to make sure it was working properly, and it was.  I remember shortly after the surgery telling my husband that I felt like someone shot the back of my head off with a shotgun! BADDD...MADD PAIN... I had never felt anything like it before. I've had my share of surgeries, Two Hysterectomies  (that's a whole different story), several scopes for Endometriosis, My Gallbladder removed, Appendix removed, knee surgery, but NOTHING compared to the Posterior Fossa Decompression Surgery...

Recovery was long. I was in the ICU for three days. The fourth day i was in a regular room, and had to have Physical & Occupational Therapy before going home.  Which was VERY interesting since that is what I do at work (an aide anyway). And the fifth day I was released to go home.  I slept in the car the whole way home, and anyone who knows me, knows that I cannot do that, EVER. But I was still pretty out of it. My husband tells me I threw up a few times on the way home, but I do not remember that.

I was throwing up for about a week straight after I was home, couldn't eat, could barely drink anything, even the smell of certain foods, ugh... I was not a happy camper. Then as I healed things started to get a little easier, the symptoms were going away, one by one, everyday.  My mom came and sat with me when Jeff had to go back to work, and Tiffany had to go to school. A few days later, I was moving around on my own, and didn't need a "babysitter".  A few weeks later, school was out, and I would take my cell phone (my daughter was home if I needed her) & the dog, and go for short walks, then I would go farther everyday to get my strength back. Soon I was walking a mile, two times a day, and was finally back to my old self, almost...

June 30, 2009
Me, being the superstar that I am, went back to work 4 weeks later... My boss was great, the first week back I only worked half days, the second week things were pretty much back to normal. I was just really tired. I look back at that now, and I should of stayed off work for 6-8 weeks... If I had to do it again, I would of stayed off work longer.

I still had headaches, the barometric pressures REALLY messed with my head after this surgery, I thought it was bad before... And the dizziness, and numbness dissipated. But the back of my head was sooo sensitive, it's now skin, Dura Matter (which is very thin), and Brain. Nothing there to protect it.

Then things were pretty good for a year and a half...

1 comment:

  1. So I remembered that u posted about being in the paper, and for some reason it popped in my head to look for it tonight. Jen, I can't even imagine how you feel going through what you have. Thank you for sharing your story! I am so glad that you have Jeff and Tiff to stand by you and help you. Know that you are in my thoughts, and that you are such a strong woman. <3