I have had several days to think about how, or if, I wanted to share my health crisis of last week. I usually use humor or other upbeat ways to share how Chiari impacts my life. And I take my responsibility to the newly diagnosed very seriously. It is a fine line we ‘old timers’ walk with the newly diagnosed Chiarian. We try not to inundate and over whelm them with information, advice or feed their fears – and if there was a way to block this being read by them, I would. But this time, I feel compelled to use my experience as an educational opportunity to share with healthy normals who walk with us, and do not grasp the seriousness of Chiari Malformation and the co-morbid diseases that Chiari creates for us.
There are 300,000 people in the USA with Multiple Sclerosis – every one knows about MS and MS is rarely a fatal disease.*
There are 300,000 people in the USA with Chiari Malformation – very few know about Chiari. Sadly, this includes the medical profession. And if you follow my page at all, you know I post too many purple candles to honor someone with Chiari Malformation who has died.*
I am going to be very blunt and detailed. It has taken my three children, Donald and Pam, and a very smart Army Major Doctor – who actually knew about Chiari – to help me piece together what may have happened to me last Thursday…
A few weeks ago, I shared – and bragged – about my 2000 mile round trip vacation. The truth is – I over did it and when I got home, I did not rest and recuperate. So, my medical emergency last week – I brought on myself by not taking care of myself.
I live alone, so every day, someone in the family calls to check on me. It was my son Jeffery who called on Thursday, April 21st around 2:30PM.
I was exhausted and we only spoke a few minutes – I told him I was going to bed. After we finished our call, I headed to my bedroom to lie down. I keep my house very cold – 62 in the daytime and 58 at bedtime. As I walked into my bedroom, I noticed the heat grate was open, so I bent over to close it. As I stood up, we believe I experienced a Postural Orthostatic Tachycardia (POTS) episode – my heart races but my blood pressure drops – I faint or we call them ‘drop attacks’ – many Chiarians have POTS. I grabbed on to the draperies as I began to fall but lost my grip, broke the drapery rod, fell backwards and hit my head on an antique chair, knocking myself out.
The doctor feels the blow to the back of my head may have caused the Chiari to quickly swell while I was unconscious and put pressure on my brain, spinal cord and brain stem. This swelling caused all of my vital systems to slow down and I did not regain consciousness.
When my daughter Laura and brother Donald could not reach me the next morning, for the AM call, Donald came over and found me. I was blue and non-responsive. This was now Friday, April 22nd around 11AM. I had laid in the same spot for 18+ hours. Within this time frame, hypothermia set in, I aspirated saliva or stomach juices and was in respiratory failure. On the Glasgow Coma Scale I was scored severe: 3 – 8. The Glasgow score means I was in a deep coma by the time Donald found me.
The doctor told us, had Donald and Laura not checked on me, I would have died with in a hour.
My core body temperature was 82 degrees when the paramedics scooped me up and brought me to the ER. I was placed in a warming “cocoon,’ given warm IV solutions, warmed oxygen and warming packs around my head. It took hours to bring me out of the hypothermia crisis.
I was placed on a ventilator – I had aspiration pneumonia and was in acute respiratory failure.
I was moved to ICU sometime on Friday, April 22nd and my family was told my prognosis was ‘grim.’ My daughter Elizabeth flew home from Arizona and they gathered and waited .
Friday led into Saturday and I still showed no signs of coming out of the coma. The neurologist poked me with needles, rubbed my chest and feet HARD (I was told) and still I did not respond. (Saturday was my 15 year anniversary of my Chiari decompression surgery)
All the while, I laid there in ICU – my kids, my family, my friends talked to me around the clock. They placed my iPod/Jawbone next to my ear and played my favorite’s lists – my Motown tunes and songs I had sung to my kids for over 45 years. Donald read John Steinbeck’s Cannery Row and Margery Williams The Velveteen Rabbit – my two favorite books. They played phone messages from the “little ones” in the family who call me Auntie B. They gently rubbed my feet, my hands, my head. They kissed my cheeks and forehead over and over, and laid next to me in the bed. They told B stories and laughed while holding my hands or touching my arms.
By Sunday evening, I began to respond to stimuli. My family said I started to scrunch my eyes when they told a story. And my heart rate would rise when they would talk softly in to my ear or a new person would enter the room. By Monday morning, I was waking up and the vent was removed.
The hypothermia saved me from severe neurological damage (we’ll see … lol)
You hear stories of people who come out of a coma and what they felt or ‘saw.’ I did not see or feel anything but I could hear my loved ones muffled voices, like I was under water, and they were talking near by. I remember yelling at them — “I’m here!! I’m coming!!” Now – this ‘hearing’ my peeps may have occurred in the moments just before I opened my eyes but it is a neat memory so I thought I would share it with you 🙂 Our hearing is that last of our senses to shut down — I could hear my family before I could see them or touch them!
So … I made it through another Chiari induced crisis.
I am using a cane again and I have to go through a round of physical therapy, occupational therapy and speech / cognitive therapy. My pneumonia is getting better. I am staying with Donald and Pam until the pneumonia resolves.
I am blessed to have such an amazing family and friends to rally around me and bring me ‘back.’
To all the healthy normal people out there who judge a Chiarian friend because they “don’t look sick” and you walk away – please don’t do that – be kind, listen … because it may be the last time you hear their voice. To all you healthy normal people out there with a friend who has Chiari – please don’t stop asking them to go out because they always cancel – be loving and accepting when the cancel, say “that’s ok sweetie, maybe next time” – please keep asking. Ask to come over and help them clean or cook a few meals. Ask them to let you come over and marathon watch your favorite movies together. Life is very short and slips by in the blink of an eye — your Chiari friend is a Warrior but even the best and bravest Warriors need an Army to stand behind them to help fight the fight.
*My point is statistical and my information was taken from the National Institute of Neurological Disorders and Stroke, and reads in part: “While MS sometimes causes severe disability, it is only rarely fatal and most people with MS have a normal life expectancy.”
EVERYONE knows of MS. Very few know of Chiari. There is no comparison – one is not worse than the other – just different. My hope is one day Chiari will have the same name recognition.
Copyright © 2016 Brenda L. Surin. All Rights Reserved.