My Story

   mystory5I am a married mom to two precious daughters. We had our first daughter in March of 2010. About a month after having our daughter I started having pressure headaches which got worse with sitting down to standing up or vice versa and bending over. This went on until about mid-July when I finally mentioned them to my husband, he insisted that I see the doctor about this.

   Luckily, my mom is a nurse and we always get the ‘royal’ treatment with medical care, I was in the next day to see my primary care physician, she ordered me an MRI of my head which I got just a few days later. I had a call from my doctor within a day to tell me that my MRI showed I have Chiari Malformation. This was all foreign to me, had never heard of this before, I proceeded to ask what that was and what usually happens. She explained that it is where your brain is too big for your head but she did not know too much about it and to look it up online and get in touch with a Neurologist, also that this condition usually results in brain surgery. Needless to say, it was a very hard, shocking phone call to receive. When I got off the phone I was in hysterics and called my husband as well as my mom and dad to tell them the news. mystory1-1
 
   The days to come had lots and lots of research online until I could get in to see a Neurologist. When I went in to see my Neurologist he showed me my MRI and that my cerebellum tonsils were protruding 22mm (they recommended surgery when your herniation is more than 6mm, they were shocked that I didn’t have permanent nerve damage with such an extreme case) out of my skull and into my spinal canal which was blocking off the spinal fluid from getting to my brain which was causing my pressure headaches and my new symptoms of extreme dizziness and tingling and numbness in my arms, hands, legs and feet. It was obvious my symptoms were progressing rapidly.

   I met with a Neurosurgeon that my medical covered and decided to go with a second opinion. Found an amazing Neurosurgeon who we chose to go with at Scripps in La Jolla who I switched my medical coverage for and was in for my first brain surgery where they performed a decompression, a C1 laminectomy (removed C1 from my vertebrae) and a partial C2 laminectomy (removed part of C2 from my vertebrae) and duraplasty (sowed a patch made from skin from a cow’s heart to the dura of my brain) on Thursdaymystory6 September 30th, 2010. I spent three days in ICU and four days in a regular hospital room. Everything seemed to go well although I was in extreme pain. I went home on that following Wednesday October 6th, 2010. Thursday morning after eating something that was too rich for my stomach I got sick and threw up, as I was throwing up I felt something inside my head pop. My husband and I knew something was wrong.
 
   After a trip to see my Neurosurgeon and a call to after-hours emergency Neurosurgery my husband saw that I was getting sicker and weaker and decided that we needed to go to emergency room on Saturday October 9th, 2010. After days of testing, ct scans, mri’s and strict bed rest they confirmed that I did indeed have a spinal leak caused by my throwing up and that one of the stiches which sowed my patch to the dura of my brain had exploded which caused my spinal leak and that my brain had swelling, sagging and looked very worrisome. That Monday night October 11th, 2010 I felt like my whole world was upside down, how could this be happening and me having to go back in for another surgery.

   I had to go back in for surgery on October 12th, 2010 to repair my spinal leak and insert a tube from my head to my lower back to drain the excess fluid. I was then in the ICU for four days in the worse pain I have ever experienced where they kept me heavily drugged induced trying to control the pain, which honestly did not really help much and then another three days in a regular hospital room. I finally, got to go home on Monday October 18th, 2010. All those seventeen days in the hospital were spent away from our then 6 month old daughter, it was soooo hard not to see her. Thankfully through it all my husband never missed a day with me in the hospital, our families and close friends were also very supportive. Getting home to see our precious daughter was the highlight of that whole experience. My husband took off almost two months to care for our daughter and I while I recovered. Thank goodness for him being there, because I could not shower alone, lift, carry and barely could walk alone.
 
   We thought I was good to go and that my symptoms subsided besides the dizziness and forgetfulness that I learned mystory4was just part of the ‘new’ me. The pressure headaches started up again and we decided if we were going to go through this again that we were going to find the best of the best. We found Dr. Batzdorf at UCLA who is one of the, if not the best in the world when it comes to Chiari and is very well known when it comes to Chiari research. I just had my third and hopefully last brain surgery on January 23rd, 2012 by Dr. Batzdorf in Santa Monica at Santa Monica UCLA Hospital. This time they cauterized my cerebellum tonsils, attached a metal titanium plate with 4mm screws to my skull for more support (Dr. Batzdorf felt they removed too much skull the first time around) and removed my patch from my dura of my brain and sowed my dura back up. I spent two days in ICU and four days in a regular hospital room. I was blessed again with the support of my husband Roger, our daughter, my dad who flew out from Tennessee, my brother, my mom, my step dad and my in-laws (Roger’s parents).
 
   So far I have had some pressure headaches return and the dizziness is worse than ever. My back hurts almost every day, I still get the numbness in my arms, hands, legs and feet some days. My memory seems worse than before as well. Although, we are hoping for a better outcome this time overall and hope to never have to go through this again. I have been so blessed with the support of my amazing husband Roger, our angel daughters and our amazing families. I am looking forward to a fulfilled life going forward and am so blessed to be doing as well as I am. I am very passionate about Chiari Malformation and spreading my story so that others don’t feel alone in this struggle we go through on a daily basis. We appreciate your support.

Love Ya'll, The Johnson's Xo 

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