Hi! My name is Prima Haney, and I am 29 years old. My husband, daughter, and I currently live in Albuquerque, New Mexico, but I was born in Pittsburgh, Pennsylvania and raised in Prattville, Alabama.

In 2022, I suddenly got very sick with some very serious symptoms. It started with me losing my vision in one of my eyes and escalating from there. My eye doctor ordered an MRI of my brain, which led to several misdiagnoses. After seeing about six specialists, I was finally diagnosed with a Chiari Malformation and a related disease called Syringomyelia. Chiari malformation occurs when the brain herniates into the spinal canal. In simple terms, my brain was falling out of my skull. This herniation causes a blockage of what is called cerebrospinal fluid, which helps cushion the nervous system from injury, among many other functions. The blockage of CSF has caused a CSF-filled cyst to form inside my spinal cord (called a syrinx). The syrinx grows inside your spinal cord, and once it gets big enough, it starts to put pressure on the cord and, in turn, blocks CSF even more. Many complications arise from these issues, including severe headaches, migraines, weakness in the extremities, pain, brain fog, forgetfulness, loss of function in arms and legs, among others.

In March of 2023, I underwent a brain surgery called a chiari decompression at Johns Hopkins Medical Center in Baltimore, Maryland. The decompression consists of three different procedures: a craniotomy, a laminectomy, and a cranioplasty. The craniotomy cuts a piece out of the base of the skull to make more room for my brain and to hopefully stop the CSF blockage. The laminectomy removes a piece of the C1 vertebrae in hopes of achieving the same thing. The cranioplasty is where a titanium mesh plate is screwed over the opening from the craniotomy to allow the CSF to flow but not allowing the brain to herniate anymore. After this surgery, my symptoms got remarkably better. Before the surgery, I was in a wheelchair because my legs were not able to hold my weight anymore, and I was having atonic seizures nearly every day. The surgery gave me my mobility and independence back, which I will forever be grateful for.

Fast forward to February of 2025, I started having severe pain in my back and also pain at my surgical site. I went to my local emergency room, where they couldn't do anything for me but did refer me to a neurosurgeon for follow-up. I had my appointment with the neurosurgeon about a week later, where once again, not much was done for me. He told me to come back in 3 months and to get new MRIs. In this waiting period, my symptoms have begun to grow. I was getting increasingly more headaches, I was in such severe pain that I would only be able to get a few hours of sleep at night, and it would most likely only occur if I was sitting up. The numbness and lack of sensation in my arms and legs started coming back. I literally cannot feel my shoulders as I type this out. My follow-up appointment to go over my new MRIs was this week, and I found out that my brain is herniated even more than the first time around, and my syrinx has grown wider. Both of these things are causing a CSF blockage, which explains my symptoms coming back. I also learned that I have a mild L1 compression fracture, which definitely contributes to my severe pain. I am going to be starting physical therapy and pain management very soon to help alleviate my pain. The increase in herniation and syrinx sizes, plus the CSF blockage, means that my surgery wasn't successful, and I am going to have to do it again. This time, I will have to undergo a duraplasty, where they cut open the outer lining of the brain, called the dura, where they can try to push the brain back into place and sew a patch over it to keep everything contained. The risks and complications of a duraplasty increase significantly when a decompression has already been done. The scar tissue will make it a lot more difficult to open the dura. I am sending my scans to more specialists across the US, including my neurosurgeon from Johns Hopkins.

I recently learned of a groundbreaking procedure that is only performed in Barcelona, Spain. The doctors at the Institue de Chiari have invented a minimally invasive procedure called the Filum System, where they sever something called the filum terminale at the very bottom of the spine. People with issues like chiari, syringomyelia, and scoliosis often suffer from filum disease where the filum terminale is too tight and pulls your brain down and causes the spine to curve to avoid the tension. I truly in my heart believe that this is what I need to happen. They have an almost 94% success rate from this procedure and it is significantly less dangerous than a second decompression. The Institut de Chiari has agreed to look over all of my scans from before and after decompression to see if I qualify for their procedure. I am hoping and praying that I do, because I am so scared of a second decompression. The surgery in Spain costs approximately $20K USD, not counting travel arrangements. Whether I get approved for the Filum System or not, surgery is coming for me quickly.

My family and I will need financial support for many different things. The Spain trip and surgery (if I get approved), the duraplasty (if I don't get approved), bills for doctor's visits, bills in general while I will have to take off work, money to keep my medical insurance, money for groceries for my family, a recliner for my living room so I can be comfortable and maybe actually be able to sleep more than a few hours (I really want this, badly). I need all the help I can get. Thoughts, prayers, good vibes, and financial support are all needed and extremely appreciated.

I am also trying to grow my TikTok following so I can join the TikTok creator fund and be able to raise money from my videos on there. I'm not sure if that venture will be successful, but I am hoping so so that I can raise money while also educating others about these conditions I suffer from that have a serious lack of research.

Thank you so much for sticking around this far and thank you so much for your support, no matter which form it comes in. I will be updating this page and also my facebook page as I find out more information about what is coming up for me.