Support Katya and Kids While Waiting for Disability

Many people have followed, supported, and truly cheered us along since the beginning in 2013. Some people knew me before ever being "sick." Grew up with me, went to school with me, or worked with me. Then there are those that have only known me as the after diagnosis or after surgeries. Maybe you are just stumbling on this and don't know me at all.

My name is Katya and I am a 45-year-old single mother of three. Two still live at home with me, and my oldest lives in Texas with their fiancé.

At the beginning of 2013, while doctors were looking to diagnose me with MS, they instead found a Chiari malformation type 1. I had never even heard of Chiari. Chiari malformation is a condition in which brain tissue extends into the spinal canal. It occurs when part of the skull is misshapen or smaller than is typical. The skull presses on the brain and forces it downward. There is no cure, and surgery can alleviate symptoms, sometimes only temporarily.

I had my first surgery (suboccipital craniotomy with duraplasty and C1 laminectomy) on May 24, 2013, at Georgetown University Hospital in Washington, DC. It looked like everything went great, and we were very optimistic. Six weeks later, I started leaking. I ended up having emergency surgery for a CSF leak on July 12th. The neurosurgeon had to go back in and do a debridement and fix the duraplasty that was causing the leak. Once again, everything looked good. Two days after that, while in the hospital, I spiked a very high fever and went unconscious. Acute bacterial meningitis. For 2 days, my mother sat beside me and prayed that I would live. When I woke up, I was covered in ice packs and remembered nothing. I was in the hospital for quite some time. The meningitis was damaging. I had to go home with a PICC line and have Home Health do heavy antibiotics. As the months went by, we realized that something was going on with my vision, and I was having a different kind of headache. I was sent to a neuro-ophthalmologist, and he determined that I had some papilledema behind my eyes. He believed it was caused by hydrocephalus from the meningitis. We tried some different meds, and they failed. Prolonged papilledema caused some nerve damage. Eventually, a spinal tap was ordered, and the pressure was extremely high. They decided I would need a shunt immediately. So, on November 19th, I received my first VP shunt.

That was the beginning. Three surgeries in 6 months. It would be so nice if that would have been it, if that would have just been a really hard 6 months and it all worked out. That just isn't how it happened. It did calm down for me for a few years. Unfortunately, my youngest was then diagnosed with Chiari in 2015. That was an absolutely devastating blow. Her surgery ended up being a little more urgent because she had what is called a syrinx. It is a fluid-filled cyst in the spine, and if untreated, it can cause paralysis. Cam's was the length of her spine; it was massive. She had her first surgery on February 1st, 2017, at Children's National in DC. She was such a little trooper. But this surgery was so hard on her, physically and mentally. During all this time, we were not only dealing with the surgery but also with the separation of her father and me and his issues. She had to do Hospital Homebound School and start intensive therapy at home. When the opportunity was given to us to move to Florida in 2018, we all looked at it as a new start.

I think everybody kind of looks at 2020 as this weird, awful year that changed the way we looked at the world because of COVID. We were doing great. I had a job that I loved and co-workers that were like my family. Hindsight is such a funny thing. You look back and you really wonder why a decision was made. I found a neurosurgeon in Florida that I absolutely adored. I had started having pain in my original VP shunt. The decision was made to tie it off and see how I did. We wanted to see if I could be without it. You know pretty quickly if it's going to work or not. For some reason, when we tied it off, I did fine. So, the decision was made to take it out on March 5th, 2020. I was without a shunt for the first time in years, and it was great. I loved it. It only lasted 6 weeks, which is still strange that my body could go that long. But there I was, getting emergency shunt placement in the middle of COVID.

You would think that that was enough. The biggest shocker was a year later. I had gotten a brain MRI, and I was blocked. We needed to go in and do another Chiari surgery. That made me numb. I've always said I can take shunt surgeries easy, but the Chiari surgery is a whole other ball game. Plus, I have already had a week and meningitis, so that puts me at increased risk again for having it happen. I was not happy. But on June 25th, 2021, I had my second Chiari surgery and my 6th brain surgery. My neurosurgeon had decided that he would put a plate in also since I had had multiple surgeries to try and keep from what is called brain slumping. He was also going to cauterize my cerebellum tonsils. A lot was happening with the surgery. When I came out of it, the pain was unbelievable. And I have a huge pain tolerance. Then comes the shock of a lifetime. The neurosurgeon comes in and tells me they found something. Originally, he thought it was a cyst, but he's going to have to wait for the lab results. There are certain types of cysts related to Chiari. He thinks that he got it all, but it was tucked right up against my brain stem, so it was tricky. There is the possibility that it is a tumor, but we are going to wait for what the lab results are. I'm barely with it at this point and not sure what to think. My head just feels funny, but I'm told that it's just normal pain after the surgery. I've had this surgery, and it doesn't feel normal. So, we are sent home. The next 10 days I honestly have a fuzzy memory of. I do remember going to the hospital closest to where I live in the ambulance because I couldn't turn my head, and the muscle spasms were so intense and so painful that I was almost vomiting and urinating on myself with the pain. That hospital didn't want to even deal with me, so I was transferred back to Delray Medical, and it was 4th of July weekend. Come to find out I also had pneumonia. Bonus. So, they needed to treat the pneumonia because they needed to do surgery again. That's right. I had another CSF leak. The plate in my head was not working. They couldn't figure out if my body just didn't like it, but it was shifting downward. So, that needed to be removed, and the leak had to be fixed. So, first, I had to go through hardcore antibiotics before they could do surgery on July 6th. Then I was told that what he had removed on my brain stem was a benign tumor, and it was also rare for an adult to have it; they usually are found in children. So now I have appointments to see oncology and radiation because they aren't sure that he got all of it. My head is spinning. It was determined that I did not need radiation therapy, thankfully. But that was a really weird and scary time on top of an already weird and scary time.

I had the same employer for over 3 years and during all of the first surgeries in Florida. They were amazing. They stuck with me longer than any other employer would have. They were unbelievably supportive, and like I said before, they were like family. They still are to this day. Eventually, we did leave West Palm and moved to Lakeland, and I was working at Walgreens here. Then another employer let me go after I had a syncope episode, and EMS was called. My most recent employer pretty much told me I am a liability long-term after I was honest that surgery is probably in the future. I understand that; I really do, and I have always tried to be upfront with any employer. It's kind of hard not to when you don't have hair sometimes.

The issue that we're facing now is that there has been some cognitive damage, and I need to come to the hard realization. If I keep pushing and pushing to work or to try, I am going to end up hurting myself. The decision to file for disability was extremely hard. Nobody wants to feel like they are useless or unable to do something anymore. It's a horrible feeling. And to feel like your brain has been affected is an even worse feeling. Asking for help is the last thing that I wanted to have to do, but it's where we are. My family has been beyond supportive, and they are running thin. I would like to think that it is not going to take forever, given my history and my medical records, but I know that it will take time.

Please, if you are able, myself and the kids would be so appreciative and so grateful for the help. We do not want to have to move and do not want to lose our home. Being able to maintain while I wait for disability is the goal. As always, thank you so much for all the support, prayers, and the friendship.

Katya and kids