I have received so many phone calls, texts, Facebook messages, etc. in the last forty-eight hours expressing concern, fears, support, and my all time favorite, humor.
Over the last three summers I have laughed at the fact that I had been invited to nearly twenty weddings. I make the joke, "I didn't even know I had that many friends!" I remember thinking the same back when I had my surgery, and I have thought it about thirty times in the last two days again. It amazes me the amount of support I receive from not only my family, good friends, fellow zipper-heads, but from the long-lost friends, brand new friends, and friends of friends, that in a nutshell, are strangers. If nothing else in this whole experience, I have learned the importance of sharing a kind word or gesture no matter how big or small. I know I sound like a broken record, but everyone has their shit and you honestly never know, flashing that smile, can truly, honestly, completely turn a day around for someone.
Okay, thankful, positive rant over. Onto these "answers".
Good news: My Chiari has not reformed. My tonsils are exactly where they should be after they were cauterized during the surgery. My blood flow is "beautiful" and they see very little turbulence.
Bad news: The pain is most likely caused by my Chiari.
Sounds like a riddle huh?
I sat on the phone and literally said, "Okay, soooooooooooo...."
I've read many, many people's blogs and stories of Chiari and how frustrating it can be. How doctor's aren't understanding of symptoms, are at a total loss, etc. I honestly don't feel like this is the case with my neurosurgeon. I love him, remember? I think he knows he has now done everything he can do to help me at this point with my Chiari. He has made my brain "look" the way it should.
But I still have to say, OUCH!
Luckily, when I did my extended "soooooooooo...", the physician's assistant said although there is nothing Dr. Vez can do to help my pain surgically (thank goodness, really), there is my neurologist that I originally went to in 2009. He is there to help support me with pain management and strategies to cope. She reminded me that he did in fact correctly diagnose my Chiari. I really felt like she was on my side, trying to calm my nerves that I was stuck with this pain forever. I got off the phone feeling relieved, anxious, happy, sad, overwhelmed, disappointed, and really optimistically scared. Oxymorons, I know.
So here I sit, today feeling pretty okay. I have had twenty-four hours to soak it all in and accept that I need to be proactive if I want to get my new aches and pains under control. I understand Chiari has no cure, has no forever-fix. I understand everyone has aches, pains, and hurts. I understand I do not need to panic. I understand that Chiari is just going to be a part of who I am, and I will learn to use any resource I can to help feel relief as I need to.
There we go. I don't know if these are the answers I was looking for, or if they are even answers at all. But I am very okay with the fact that I do not need to undergo another brain surgery, the fact my doctor isn't concerned that the paralyzing feeling will damage my nerves forever, and the fact that now this is the new bump in the road that I will overcome.
That's just life, right? Hey, but at least life is good. :)
Saturday, September 27, 2014
Thursday, September 25, 2014
Look Who's Back, Back Again ...
Freaking Chiari. That is what is back again. A little Eminem to start this rainy morning.
Actually Eminem didn't start this rainy day for me. An MRI and a Cine Blood Flow study at Capital Health did.
I delayed writing a blog, just because I have felt that I was being a Negative Nancy in the past few weeks and if you've read this before, you know how much I hate that.
However, today I posted a picture of my hospital bracelet so I think it is absolutely time to explain what is happening these days.
About a month ago I mentioned getting knocked in the waves while playing my dolphin and seal game and triggering a headache and some tingling. For the next few weeks I had a lot of pain around where most of my Chiari headaches originate. Two weeks ago, I was closing the windows in my loft and had a tough time pulling one down. Using a lot of effort and my killer upper body strength, I put my hands above my head and pulled down. I instantly felt the tingle and sharp pain from the base of my skull (where the Chiari headaches originate) into my shoulder, down my arm, and up my neck into my ear and cheeks.
For the next seventy-two hours I had a full blown, for lack of a better word, Chiari-attack. I was in debilitating pain. Not only a headache, but weakness down my right arm into my hand, my shoulders felt like a boulder was sitting on them, and I felt I couldn't hold my head up straight. Before my surgery, I referred to one of my symptoms as "Woody Arm", making an analogy to Toy Story when Woody's arm gets injured and he just drags it along as he is walking. For about two full days, I had a very serious Woody Arm. I had difficulty lifting my fork to eat, my cup to drink, and my markers to teach. While I was driving, I needed to support my Woody Arm with my other arm or rest it on the steering wheel. I forgot how horrible this pain was. During these seventy-two hours, I went to work, came home, laid on the couch, barely ate, and cried a lot. For the first time in over 19 months, I felt paralyzed, trapped in my own body again. However, at this point...I just kept saying to myself and others, "No big deal, this is just a weird Chiari fluke." -- Fluke is the right word, right?
Then, about a week ago, I was woken four times in the night from the most severe, sharp, shooting pain from the base of my skull into my right cheek and into what felt like my eye socket. I was honestly worried. It was a new pain, one I don't even remember having before my surgery. I considered waking up my roommate or calling mom and dad to take me to the emergency room. Again, I sat there and thought, "okay if I go, they will run the same tests, tell me nothing is wrong, blah..blah..blah. And, I love my job. I want to go to work tomorrow. The kids will make me better. My friends will help."
The pain continued though work. I was barely present. The right side of my face was completely numb. I was constantly asking my coworkers if my face was droopy. I felt like the water I was drinking was coming out of my mouth. I couldn't keep my eyes open. I couldn't focus, I couldn't react to things the way I normally do. I wasn't finding my little friends' high pitch voices and silly antics as cute as I normally do. I hate to say I felt paralyzed, but I did. I needed to make a call.
I HATE THE PHONE. The fact that with no prompting, no suggestion, and no demands from mom or anyone else, I picked up the phone and called my doctor. I cried hard when the nurse got on the phone and explained the pain. She said it was absolutely something to worry about. She warned me that a Chiari can reform even after a surgery. She suggested coming to Capital Health and getting an MRI sooner than later.
After spending a combined two days, three hours on hold, four dropped calls, and three missed calls, I got an authorization from my new insurance company and an appointment at Capital Health.
This morning at 7am I went in for a MRI of my brain. They took me out after awhile and hooked me up to a monitor so they could do a Cine Blood Flow study.
This is where we stand. Waiting...
Back before my surgery, I joined a lot of Chairi social media groups, to remind myself that it was normal to get the surgery, it was normal to feel the pain, it was normal to be frustrated. Man am I glad I didn't get out of any of them. Last night, I sat and read many fellow Zipper-head's posts about their pain and similar symptoms. It helped to know that I am not alone or crazy in my descriptions of my symptoms.
So many people have said to me in the last few days, "Hope everything comes out okay in your tests." How terrible is it that I am sitting here, anxiously awaiting a call to tell me something in fact IS wrong. I need an explanation. Why do I suddenly feel like I did 19 months ago? Why do I suddenly need to think before I jump a wave? Why do I need to think before I close a window? Why do I need to hold in a sneeze? Why is all this pain back?
I fear the phone call that says, "everything looks great." Because if that is the case, then what now?
Alright, that's enough complaining. I'm sorry! It has been a very confusing and frustrating few weeks.
Prayers and a lot of hope for curable answers...
Actually Eminem didn't start this rainy day for me. An MRI and a Cine Blood Flow study at Capital Health did.
I delayed writing a blog, just because I have felt that I was being a Negative Nancy in the past few weeks and if you've read this before, you know how much I hate that.
However, today I posted a picture of my hospital bracelet so I think it is absolutely time to explain what is happening these days.
About a month ago I mentioned getting knocked in the waves while playing my dolphin and seal game and triggering a headache and some tingling. For the next few weeks I had a lot of pain around where most of my Chiari headaches originate. Two weeks ago, I was closing the windows in my loft and had a tough time pulling one down. Using a lot of effort and my killer upper body strength, I put my hands above my head and pulled down. I instantly felt the tingle and sharp pain from the base of my skull (where the Chiari headaches originate) into my shoulder, down my arm, and up my neck into my ear and cheeks.
For the next seventy-two hours I had a full blown, for lack of a better word, Chiari-attack. I was in debilitating pain. Not only a headache, but weakness down my right arm into my hand, my shoulders felt like a boulder was sitting on them, and I felt I couldn't hold my head up straight. Before my surgery, I referred to one of my symptoms as "Woody Arm", making an analogy to Toy Story when Woody's arm gets injured and he just drags it along as he is walking. For about two full days, I had a very serious Woody Arm. I had difficulty lifting my fork to eat, my cup to drink, and my markers to teach. While I was driving, I needed to support my Woody Arm with my other arm or rest it on the steering wheel. I forgot how horrible this pain was. During these seventy-two hours, I went to work, came home, laid on the couch, barely ate, and cried a lot. For the first time in over 19 months, I felt paralyzed, trapped in my own body again. However, at this point...I just kept saying to myself and others, "No big deal, this is just a weird Chiari fluke." -- Fluke is the right word, right?
Then, about a week ago, I was woken four times in the night from the most severe, sharp, shooting pain from the base of my skull into my right cheek and into what felt like my eye socket. I was honestly worried. It was a new pain, one I don't even remember having before my surgery. I considered waking up my roommate or calling mom and dad to take me to the emergency room. Again, I sat there and thought, "okay if I go, they will run the same tests, tell me nothing is wrong, blah..blah..blah. And, I love my job. I want to go to work tomorrow. The kids will make me better. My friends will help."
The pain continued though work. I was barely present. The right side of my face was completely numb. I was constantly asking my coworkers if my face was droopy. I felt like the water I was drinking was coming out of my mouth. I couldn't keep my eyes open. I couldn't focus, I couldn't react to things the way I normally do. I wasn't finding my little friends' high pitch voices and silly antics as cute as I normally do. I hate to say I felt paralyzed, but I did. I needed to make a call.
I HATE THE PHONE. The fact that with no prompting, no suggestion, and no demands from mom or anyone else, I picked up the phone and called my doctor. I cried hard when the nurse got on the phone and explained the pain. She said it was absolutely something to worry about. She warned me that a Chiari can reform even after a surgery. She suggested coming to Capital Health and getting an MRI sooner than later.
After spending a combined two days, three hours on hold, four dropped calls, and three missed calls, I got an authorization from my new insurance company and an appointment at Capital Health.
This morning at 7am I went in for a MRI of my brain. They took me out after awhile and hooked me up to a monitor so they could do a Cine Blood Flow study.
This is where we stand. Waiting...
Back before my surgery, I joined a lot of Chairi social media groups, to remind myself that it was normal to get the surgery, it was normal to feel the pain, it was normal to be frustrated. Man am I glad I didn't get out of any of them. Last night, I sat and read many fellow Zipper-head's posts about their pain and similar symptoms. It helped to know that I am not alone or crazy in my descriptions of my symptoms.
So many people have said to me in the last few days, "Hope everything comes out okay in your tests." How terrible is it that I am sitting here, anxiously awaiting a call to tell me something in fact IS wrong. I need an explanation. Why do I suddenly feel like I did 19 months ago? Why do I suddenly need to think before I jump a wave? Why do I need to think before I close a window? Why do I need to hold in a sneeze? Why is all this pain back?
I fear the phone call that says, "everything looks great." Because if that is the case, then what now?
Alright, that's enough complaining. I'm sorry! It has been a very confusing and frustrating few weeks.
Prayers and a lot of hope for curable answers...
Subscribe to:
Posts (Atom)