Hey! How's it going?! We use this website it to keep family and friends updated about my treatment and possible recovery from Visual Snow Syndrome! You can look here for ways to help! And THANK YOU!
We appreciate your support and words of hope and encouragement!
First, a description of Visual Snow Syndrome taken directly from the Visual Snow Initiative's website:
"Visual Snow Syndrome (VSS), also known as Visual Snow (VS), is a neurological condition that has devastating effects on an individual's vision, hearing, and cognitive functioning. Once thought to be rare, it is now estimated that 2-3% of the world's population has symptoms of the condition. People from around the world of all ages and walks of life are and can be affected by it. Most often, the condition causes people to process visual information abnormally, making normal life more difficult for them. Patients see flashing lights, flickering dots, and static, all of which obstruct their visual field 24/7. There is no relief for them, even when their eyes are closed. What differentiates Visual Snow symptoms from other fleeting phenomena is that they are constant, not temporary, meaning that they do not go away on their own. The condition also has an array of non-visual symptoms" including but not limited to, tinnitus, depression, anxiety, executive function issues, and spatial awareness.
More information on Visual Snow Syndrome can be found at https://www.visualsnowinitiative.org
I have had visual snow symptoms for as long as I can remember. As a small child, I recall watching the lights and waves of color behind my eyelids and the squeal of tinnitus when I was lying down to sleep. I remember the squiggly blue lines in the sky, the floaters, and the wiggly stars. I believed that I could see ghosts!
I thought all of this was normal until I spoke of it to a few friends when I was about 12 years old. Of course,, I was chastised. I decided that I shouldn't say things that made me sound like I had taken drugs. I wasn't good at catching things, I was terrible at sports, and I fell a lot, but many people were like that, right? My depression, anxiety, and executive function issues were attributed to ADHD, right? I must have heard some loud sound I don't remember that caused my tinnitus, right?
Then, at some point in my 20's, there was an acceleration in my symptoms. The hallmark "snow" became overwhelming. I began to feel tingles in my limbs, depression, anxiety, and ADHD symptoms increased. I stopped getting restful sleep. It was time to see a doctor.
Naturally, I went to an optometrist who misdiagnosed me with a "persistent migraine aura without infarction." But I have had ocular migraines before. My symptoms were different. So, over the next ten years, I went to a couple of ophthalmologists, an ocular surgeon, several neurologists, a sleep specialist, a psychiatrist, a psychologist, a chiropractor, and numerous general practitioners. I had to educate all but the neurologists about the disease. The rest told me there was nothing wrong. I have had a CT scan, PET scan, Multiple EEGs, fMRI, and blood tests. I've done diets, elimination diets, vitamin supplements, supplements for free radicals… you name it. In the midst of all of this, I came across the Visual Snow Initiative, a non-profit organization dedicated to studying VSS. In 2015, researchers finally came up with diagnostic criteria for VSS. This was huge and validating for me. But there still was no treatment. Also, every doctor I went to still had no idea what I was talking about. All the while, my symptoms worsened. I can no longer drive at night without having to stop every few minutes to readjust, using my phone and computer is challenging, and I am constantly tripping over/ bumping into things. I was beginning to fear that I was going to be blind in a few years.
A couple of weeks ago, I visited a new GP in Georgia, and, like every other doctor, I began to educate her on VS. This is when I saw the 2022 VSS Summit released just a week prior! THERE IS an excitingly effective TREATMENT. It only totally cured 10% of the participants, but most had their symptoms near resolved.
That is enough for me! I immediately called one of the two researchers, Dr. Shivlofsky in Plano, TX, and discussed the treatment options. I was lucky that I called so quickly because people are contacting them worldwide for treatment, and the schedule is filling up fast. The treatment is around six weeks in Plano. 2 sessions a week.
I will be one of the first 100 people to be treated in the WORLD with their technique. However, I need the help of my community to make this happen. The logistics are mind-boggling, and it will not be cheap.
I plan to pack up my house, put it all in storage, drive from Georgia to Plano for the treatment period (with my kids), and move into our new place upon return.
I am setting up a GoFundMe account and will be documenting my progress as I go. I plan to spread awareness for VSS so that people who are suffering can get the validation and treatment they desperately need and deserve!
HELP KRYSTAL SEE THE STARS AS THEY ARE!