I am so sorry for being MIA the past two weeks. As most of you know, with Chiari, everyday is unpredictable. My pain has been uncontrollable the past few weeks, and the past few days have been the worst. Most of my time has been stuck in bed. I wanted to get on here and share Teresa’s Story with you all for Chiari Awareness Month. I hope to be up and writing again soon.
I never thought my life would change so much. I always thought I was different even as a kid. I felt labeled as lazy and faking it to get out of whatever. It seems like you live with a headache every day, it’s just the intensity changes daily. I thought I was crazy; living at the doctors all the time, being told all your test came out fine, we can’t find anything wrong . Gosh if I had a nickel for every time I heard those words! For over twenty years blood test, ct scans, MRI , X-rays , this pill or that pill, do you take the blue one today or the red one, and we can’t find anything wrong.
I was working at telemarketing, a job that is very hard and takes a toll on you after a while. The way people once again label you, my hands and shoulders were going numb and burning (this was in the summer of 2010) I thought I had carpel tunnel because of my job and the way my hands were being affected. I got sent to a neurologist neurosurgeon who did an EEG and MRI. That was the beginning of my nightmare. I had Chiari, something I never ever heard of or could say. Today that’s all changed.
I wish I knew everything then that I know now. I don’t think I’d ever have surgery. My first surgery for decompression was August of 2010, they removed the bones out of my neck , three months hadn’t even passed and I wasn’t feeling any better, in fact, I actually worse. So they did another MRI and decided a piece of my skull needed to be removed. Why they didn’t do this the first time I have no clue but anyways only days apart from being a year apart for my second decompression surgery August 2011.
This surgery was harder than the first. My blood pressure had gone so crazy high for days and they had to keep giving me shots to bring it down, the headaches? OMG! They didn’t know if surgery or my blood pressure was increasing my pain but it’s like I became a test monkey and I’d watch that morphine pain pump for time to pass to push that button. I don’t think I even slept; the pain was so horrible and I just wanted those meds. I spent like six days in the hospital. My boyfriend whom I had basically just met was so awesome always there by my side. This was all totally new for him. Living in ER’s and doctors offices became our life. When it came time to get my stitches out I was so ready, the nurse began taking them out and when she took this one stitch out I swear it felt like my brain dropped. I got a sick “I’m going to blackout” feeling and she said that’s normal.
Emmanuel ( boyfriend ) and I went out to eat to celebrate the stitches being removed. As we were sitting waiting on our food I got really sick to my tummy and had to go to the restroom , and I wondered what was wrong . It was too late to call the doctor so I kind of blew it off for a couple of days. My head started to increasingly hurt really bad. I would lay flat and it seemed to help. I think we had to call an ambulance about four different times if not more to take me back to the ER cause I could not sit up , the pain was unbearable sitting up. I think they thought I was in there for drugs because the first two or three times basically all they did was dope me up and send me home, the next time we went I was so pissed and refused to leave until they did more tests and figure something out. The doctor came in the room and told me he was going to have to do a spinal tap , I’m thinking he said this to scare me. He doesn’t believe something is wrong, my head hurt so bad I didn’t even know they had already done the tap. I had a CSF leak , apparently one of the stitches had come out of my Dura patch and also I was told I had a brain aneurysm which needed immediate attention.
So in September 2011 they are opening my brain back up to repair that leak. The beginning of my total hell started that day. After a few days and stuff started wearing off, the right side of my face, head , ear and shoulder felt like the sun was three inches away from me and it was constant. In October I’m back in the hospital having my aneurysm operated on (the only way they can reach it is through the groin area), they said if it bust I wouldn’t even make it to the hospital. Even if I was in the hospital my chances were I wouldn’t make it.
Well I’ve had three surgeries on it so far to coil and stent it. It keeps growing my last surgery on it was April 2, 2014. I go again in October to see how things are going. So for this horrible burning pain I ended up having to take things in my own hands cause it got to where my doctor that did my Chiari surgeries would not see me anymore stating the burning pain in my skull and face wasn’t surgery related. I lived in the ER for almost a year until I found another doctor. They did nerve blocks. My back went out during this, so my new doctor did surgery to try and fix that problem. It helped a lot but now I’m starting to have that pain again. That surgery was November, 2012. I had pins put in both sides of my pelvic area for sciatica. I went through so many different drugs trying to kill the pain, nerve blocks, burning of nerves, nothing helped until I got sent to another doctor who suggested an occipital lumbar nerve stimulator. I have had so many problems with the stimulator but will take this any day over that burning pain in my head and face. They think I’m rejecting it. I had it permanently put in on December 9, 2013. It seems the past four years have been a trip to hell. I feel like a burden, I hate my life and feel so sorry for my boyfriend. Life isn’t anything like I was thinking it would be for us. If this pain would leave and my body could heal from monthly surgeries maybe he and I could experience Utopia.
I find it strange how after you get some sort of really serious illness you own it, live it, breathe it, what it’s all about. I’ve become such an advocate for Chiari and try to talk to anyone I can about it. I have educated so many doctors and others in the medical profession. I’ve started groups and I’m like a sponge when it comes to learning anything about Chiari. I find myself trying to find away to make me feel as though my life hasn’t become a complete waste. I’m trying to make a change. I’ve become so compassionate for others and it kills me to see anyone in pain because I so know how they feel. Chiari changes your life so much, it’s like one day your this person; next thing you know you have surgery and that person died and another was born on that operating table, a person struggling to find out what happened, where I went. I for one know life will never be the same and wonder will I ever enjoy it again. Will the pain ever cease? The pain is like voices in your head so loud just want it to be calm.
Thank you Teresa for taking the time to share your story.
Stay Positive dear readers!