Shonderi's Arnold Chiari Malformation Journey Part II
by Shonderi
(Walker, MI, United States)
Continue....
In 2008, My life was the same normal routine and I still had back and neck stiffness daily...I would take over the counter Aleve, IB profen, and Advil just to get through my daily routine. Meanwhile, I was walking to my mailbox and I end up slipping, which I hit the left side of my head, which I was able to get up and go in the house. I then went to the Emergency Room and had a CAT-SCAN and X-Ray done, which I had a minor head injury w/ no signs of broken or fractured bones. Furthermore, my neck and back pain had gotten worse and my new doctor refers me to a pain clinic, psychologist, and chiropractor!! RIGHT! Funny, he wasted my money....not one of these listed specialist could help me! I spent my entire summer of 2008 at the clinics with not sign of relief. I finally went back to see my primary doctor and told him that the CAT-SCANS are not showing the problem, so I done researched information about MRI's and what they are for! I told him he needed to order an MRI, because something is seriously wrong! So, In October 2008, he finally does an MRI and my results came back that I had Arnold Chiari Malformation Type II.
The journey of pure darkness, I had no clue what Arnold Chiari was, so I started researching information online....the information was slim, because Chiari is a rare disease. Arnold Chiari is when the bone (tonsil) in the back of your neck is pushing down on your spine, which blocks the flow of cerebral spinal fluid. In addition, due to the blockage an individual can develop syrinx, which is fluid pockets that can cause serious issues. So, my primary did not refer me to any specialist or even my nuero. He said, it is nothing to serious and a great deal of individuals have the disease and still live his or her daily life. I am like....HELLO! I am in pain all day everyday!! Lets do something about this! So, I was left to figure this out on my own....did not have time, because in Nov/08 I had a brain stroke...I felt a volt go right through the right side of my head down to my foot! I feel head first in the tub; luckily my mom was with me...she called the 911..I had loss vision in my left eye, balance and coordination on my right side, which I literally shook when I walked, my organs were shunting down as well. The E.R. could not do anything and my neurosurgeon was not registered at the hospital I was at, so I was sent home and put on blood thinners.
In Dec 08, my nuerosurgeon scheduled me to have decompression surgery on the 18th. I was ready! My grandmother and uncle drove me to the hospital. As soon as I got to my room and did the basic test, like urine sample, blood work, and blood pressure there was a big problem...I had developed a bladder infection, my blood pressure was high, which for me to have surgery was to risky; meanwhile, the surgeon still wanted to operate, but told me my chances of surviving were slim...so we decided to get a second opinion and not go through with the surgery.
Well, its been 10 days and I am still alive with a collapsed lung, spasms, and not able to walk! So, the second opinion was on 12-18-2010 and this neurosurgeon knew what needed to be done. During the appointment, my uncle and mom asked if I was able to go to Ann Arbor for another opinion and he stated to her, "no" she will not make it and I am surprised she has made it this long! So, without hesitation my mother goes along with the surgeon and soon after I left is office I went straight to the hospital to prep for a morning surgery, which was to tie shut the old stunt, because it no longer worked.....that was the worst surgery I ever had....I got out of surgery and had dry heaves, which I so vomiting up nothing..I could not hold down ice chips at all. I still could not walk. So after a week I was sent down to therapy and I hated it! It was like a full time job 8-5 doing occupational and physical. Problem on the Neuro unit. Meanwhile, I was in a lot of pain(upper left side of back) this pain was bad! Well, I stayed in therapy through Christmas Eve and Christmas. I finally was released from the hospital and within 2 days....I was back in the hospital! My MRI came back showing a syrinx and not progress from the stunt tying....this is the surgery I dreaded for....Brain Decompression surgery...well! I cried, prayed and went through with the surgery! I did not like the fact he had to shave off my hair...he stated a little, but boy it was more! Well, surgeon thought he was just removing the bone in the back of my neck...he was in for a surprise! All the spinal fluid backed up..he said it was like water coming out of a balloon with holes...leakage everywhere, which was not good...when I got out of surgery I was in ICU and had all these tubes coming from my head...after a week! I was sent to the brain unit and the fluid was draining, which he had to put a tubing on my head to catch the excessive fluid. The fluid of infection and my face broke out extremely bad, so the infectious disease control doctor looked at my face and took cultures, which were syrinx. Well, after the fluid was drained, I went back down for surgery, which I needed a stunt put into my brain to balance out my spinal fluid.
To make a long story short, I did a year of therapy in 2009! I went from working full time at a Corporate of for 7 years to becoming total disabled at 26 years old. I have extreme weakness on my right side and chronic pain everyday! I take nerve pills, relaxers, and hypertension pills. I am a stroke patient! I now drive, but my body gets tired easily! My arms and legs fall to sleep and got numb within seconds. I have sleep deprivation and crave sugar extremely bad!
This is my journey! My husband studies Naturopathology and believes in natural healing! He told me to look into this and find out how Holistic Therapy can help you! We are going green and by a lot of organic supplies/foods.
I know my disease has no cure and can cause me to become fully paralyzed, but as long as I am alive and can think; then I can help someone!
My name is Shonderi and I will not let this disease overpower me! I want my mind, spirit, and body to be in harmony!
Thank you,
P.S. I am on Facebook and we have Arnold Chiari awareness!
