Monday, December 28, 2009

Quality of Life Question

I wish I could say I was always all sunshine and roses about deciding to go through with the surgery, but the last few days that hasn't been the case. I has been looking on the positive side of everything and pretty much still am, but after my last visit with Beijanni I started to second guess my decision.

I took a tumble on the ice a couple weeks ago and did everything I could to not hit my head to the point that I hit my head. So I had been feeling a bit off and called in to the office and they sent me for a CT, after the CT they sent me for an MRI, just to make sure everything was ok and to make sure I haven't developed Syringomyelia (cyst on the spinal cord) luckily everything looks good. I had my follow up appointment on the 23rd and took my parents into meet him. It was then that my mom asked the one question that I had neglected, "What exactly should we expect in recovery"? Well sure I know that part of my head is going to be shaved and that I'll be off work for six weeks. I knew that I was going to most likely be waking up in the ICU and spending a couple nights in the hospital. But it was the word PAIN that came out of his mouth that smacked the reality into me. PAIN, I am always in pain so what's the difference? Well, its the kind of pain that makes you question why exactly you made the decision to do this in the first place. Oh yea and then there was the whole, "Melissa, you can't do anything for six weeks, I mean anything, you can't even lift a gallon of milk or you are looking at 6 months...not weeks" Oh....crap. That is a lot of time, and I love lifting gallons of milk, it's like my favorite past time, I am screwed.

Christmas weekend was great and relaxing for the most part, I was hurting from all the running we were doing but of course was in such a jovial mood that it didnt bother me. Saturday Ryan and I decided to start organzing the upstairs of our house because we are getting new carpeting and I decided I could move a dresser by myself, which of course doesn't sound like much, I used to do that all the time, but about 10 minutes after I did it, I knew I was screwed. Oh so looking forward to the day I can move dressers and lift gallon jugs in the same day!

So really I am just freaking myself out for no reason, it feels real now, it's going to happen. I'm still ready that isn't a question, I just suppose I'm being more realistic now. It will improve my quality of life. As I'm writing this, I just took a nice big muscle relaxer and IB8 combo because my legs weren't working after playing Wii for 45 minutes....that was it.

I suppose the question a lot of my friends/family ask is, if this was there all along why is it so bad now? That is a question I ask myself everyday. A lot of the people I have talked to that have CM or SM have all said the same thing, it is through this disorder that you truly find out who cares about you and who your real friends are. I'm starting to see this. It was hard for some of my friends to understand why I was always sick or why I would cancel plans, it's because I just don't know what is going to happen every day. Every day I wake up is a challenge, if I sneeze I could throw my whole body into overload and have a Chiari fit, if I stay outside in the cold 2 minutes too long, if its rainy, if I sleep wrong, if I don't sleep at all, if I don't eat right.....the list goes on. To hear a friend tell you that you aren't there anymore and the only time you speak to them is to talk about your big brain or gush about your husband and your wonderful life, that hurts. Friends are supposed to be there for the good and the bad, right?

So when I start to freak myself out about the road I'm about to go down, I have to remember, how important is the quality of life to me? I'm 26 years old, married to the most wonderful man in the world, working for an amazing company, getting my masters and have my sights set on starting a family. So yea, the quality of life is worth it to me, because I have my whole life ahead of me, and I'm not letting some stupid big brain hold me back.

To make things more official I'm taking the big steep tomorrow and scheduling all my pre-op work and doing everything I can in the next few weeks to keep my mind off of it and just enjoy myself. By summer I'll be all active with my dresser moving and gallon lifting and if I get real crazy may even start going to the gym again. Yea, I'm going there.

Tuesday, December 22, 2009

33 days and counting

I have never been one for this whole blogging concept. I attempted one about 4 years ago when I was living in New York City, and that was pretty much about life as a college student so no real content. The purpose of this blog is to not only help myself but help others that are coping with life as a Chiarian.

Perhaps I should backtrack just a bit. Last year I was diagnosed with having Type 1 Chiari Malformation. This came after years of battling awful headaches, dizziness, frequent spells of nauseaus, numbness in my arms and legs, the list goes on and on. For years I just thought I was crazy and passed it off as drinking too much caffeine and not getting enough sleep. But after collapsing in my kitchen, backing my car into the side of our garage, and falling over in a restaurant my parents and fiance begged me to see a doctor, so I did.

Let the needles start poking...

So after a multidude of blood work, CT scans and MRI's the call came. I will never forget that day, January 20, 2009. "Everything looks normal, but there is a borderline Chiari Malformation showing in your MRI, you should see a Neurologist, click" Yea that was about the extent of the conversation. What the crap is a Chiari Malformation?? I need to see a brain doctor, like McDreamy on Grey's Anatomy?! What is wrong with me????

So we went to see a neurologist, and heed my warning, DO NOT GO TO A NEUROLOGIST when diagnosed with CM1. In fact, do research and find someone that has experience working with this condition. And here is why....

The Neurologist saw me that day, and after about an hour in his office told me I needed sleeping pills and anti-depressants. Sweet, I'm crazy! Forget this Chiari crap. So I went on with planning my wedding and did all I could to focus on the positives in my life. The summer came and things were moving along great, until I woke up one July morning and couldn't move my head. I was experiencing the worst neck pain of my life. I visited my PCP who prescribedme muscle relaxers and pain medication and sent me to PT 3 days a week. The pain didn't go away, it got worse. Again, thinking I was a walking nutjob I pushed through and went along with life.

September came, finally, the day of my wedding!! I had been symptom free for a few weeks and sooo excited to start my new life. I was convinced that everything was stress induced from the planning and life would get back to normal. After a perfect wedding and a perfect honeymoon we came back to reality. September 26th was the Walk for Chiari Awareness, and even though I had doubts of my diagnosis I wanted to participate. It was a cold, rainy Pittsburgh day. I stood in this group of people and was amazed at the positive attitudes and stories I was hearing of people who had been living with this their whole lives. I was convinced at this point I was crazy, there was no way what I had been feeling was as bad as what they had been feeling. I had a mild headache that day, but as it went on, the pain got worse, and spread through my whole body. By the time we got home I couldn't walk up the stairs, my husband had to carry me. It was from that moment on that I was aware that Chiari was real, and it was affecting me. I contacted a girl that was at the walk and she gave me the name of her neurosurgeon, I decided it was time to give him a call. Dr. Beijanni was ready to see me in a few weeks....

My visit to Dr. Beijanni was scary at first, what if he thought I was crazy? What if he told me to get a life? He looked at my MRI scans from the January before and asked me about my symptoms, I told him "You think I am a nutjob, don't' you?" He said, "Nope I think you are a girl that has been suffering from Chiari for her whole life and is ready for answers, you have Chiari, 7mm herniation with a fast progression of your symptoms. The only option is surgery and its up to you if you want to have it. You need to think about the quality of life."

I AM NOT CRAZY!!! Most people would hear something like that and freak out, I heard it and felt like a 200lb brick was lifted off my shoulders. There is something truly wrong with me, and I have a choice. So, after talking things over with my husband, I decided to take the big step to fix my big brain. I go in for my decompression on January 25th. I'm terrified and excited at the same time. I know this is not a cure, but it will help me get through one day without going home and crying myself to sleep. It will give my husband the wife he deserves. It will give me a life back to have energy and not have to fake a smile everyday. It will make me normal.

Bring it on big brain, bring it on!