Hello to all, I'm Karina from Texas and I would like to share my experience from October of last year to May this year. So last summer, I had episodes of being sick where I was dizzy, had shortness of breath, compromised vision and others symptoms that prevented me from leaving home. This happened at least 3 times and ended up going to the emergency room. They checked me out but couldn't find anything at the time and ruled out Covid. They suggested I follow up with a neurologist to make sure I didn't have any underlying issues. I went to get an MRI per the request of the neurologist and come to find out, I had a birth defect called Chiari Malformation. It's when your skull and spine grow further than normal and create an obstruction of spinal fluid from flowing as it should and made my brain seep down lower as well. The first neurologist suggested that I have a decompression surgery to address the Chiari. This would mean surgery to remove part of my skull and spine. Thankfully the first one was successful, but when I was discharged, my problem was that my incisions kept leaking multiple times. I ended up going back to the ER to have them looked at. After a few more surgeries, when I was in the hospital, come to find out that I had what is called hydrocephalus. It's where your spinal fluid flows at a high pressure rate. That is what kept leaking from my neck and stomach incisions. Then come to find out, I was allergic to an a medicine called Vancomycin. It's an antibiotic to treat infection which I had in my head at the time. What happened is that it gave me "Red Man syndrome", which is high fevers, body aches, excessive sweating and other symptoms. Because of that, they had to find an alternative and put me on bed rest to test and drain the excessive fluid. Then, after so many tries the neurosurgeon at the time said that because of the complications, that to go to another hospital. So I ended up going to Memorial Herman. Luckily at that hospital, they were able to treat me and thankfully they had a team of neurologists that could. Then I ended up having more surgeries which came out to a whopping total of 16. At the previous hospital, what ended up happening is that, I had to stay laying down for numerous days on end because they had to drain the excessive spinal fluid from my body. Because of this and having to do so at both hospitals, I lost mobility in my legs. Then come to find out, that during one of the surgeries, I had a stroke. It affected my ability to communicate, stay awake, my memory, along with other symptoms . Thankfully it was not deadly. Thankfully I was discharged in May of this year but ended up having to have 2 shunts (internal tubes) installed on both sides of my head. Because they needed to go inside, they had to shave my head multiple times. Thankfully due to the shakes and protein powder that I take daily, it's growing back along with helping my wounds heal. While I was in the hospital, apparently I was not able to pass a swallow test about 5 times. It's where they see where food goes down to make sure it is swallowed correctly and doesn't go down to the lungs. Because of that, a peg tube was placed. It's a tube that goes directly into stomach that is used to absorb shakes and protein as a way to obtain nutrients. This was also a way that is used to take medicine since swallowing could be a problem. After months of being in the hospital, now I'm thankfully resting and recovering at home. I am now in therapy to help me walk again. Of course it will be a process but it will happen in due time. Hopefully this will help bring awareness to the birth defect and encourage all to have your children checked out before it becomes a problem when possible and hopefully bring awareness to this birth defect. I would like to thank you for taking the time to read my story, if you can't donate, sharing is just a bit of a help as well.
Best of wishes and stay safe out there, Karina
