Phil 4:13 I can do ALL things.....!
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Hello, my name is Monique Lacy and the funds raised will go towards medical expenses. Below is my story from my original fundraiser started in 2014. Never thought I would have to reopen it again but sometimes God has other plans for us. Recently I have experienced what is expected to be a seizure (believing that I will be a one-time occurrence) and I am awaiting follow-up testing currently scheduled for the end of Oct. Thank you in advance for your prayers and support. ❤️ $Molacy
I was laid off on January 4, 2023 and as a full-time entrepreneur I am self pay for all medical expenses. Open Enrollment for Individual Healthcare plans is November 1, 2023.
Sept 2, 2023 Emergency room visit $6,474.69
An EEG typically costs $200-$700 or more for a standard EEG -- or up to $3,000 or more if extended monitoring is required.
The average cost of a MRI on the brain ranges from $1,600 to $8,400.
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Can you imagine waking up one day and never feeling the same? Feeling like something just isn't right but you can't explain it and suddenly your world changes in ways you never imagined. Well that is what happened to me. Before I tell you my story I want to thank you for taking the time to read my story and understanding. One night back in August 2013, when I layed down to go to sleep I noticed that when I did I felt the sensation of blood rushing to my head.(similar to when you bend over from a standing position and hold your head down to long) At the time I never paid much attention to it, but eventually it was happening every night and even while I was standing. I began to have many nights where I wasn't sleeping well at all. Finding it hard to focus at work. I also began to have headaches at work to the point were all I could do was sit down and put my head down. Headaches that can be decribed much like those of migraines. I still didn't think too much of it until one day I noticed what at the time I thought was "ringing in my ears." In the beginning it was gradual and happened on and off. I began to notice it even while others were talking to me. The best way I can describe the sound is the sound you hear when you hold a seashell to your ear. (Later I would learn that what I was hearing was pulsatile tinnitus) So at this point not only did I have the blood rush sensation but I am also dealing with this noise in my ear that won't go away and headaches. I had got to the point were I couldn't sleep unless I had a radio on or sometimes I would use sleep apps on my phone to drown out the sound in my ear. I can remember one night crying because the sound was literally driving me crazy. I called my mother the next day and she suggested I go to the ER. So on we went looking for answers. I didn't know that this would be the beginning of many trips I would take to the doctor looking for answers and some kind of relief. That morning we spent about 10 mins in the waiting room(unusual I know) and finally went back. I answered the usual questions and was sent home with some antibiotics for an ear infection. After a few days with no relief, I went to my primary care doctor who said I didn't have an ear infection and the antibiotic I was given was not necessary. She then referred me to an ENT (Ear Nose and Throat) doctor. So at the ENT I took the usual hearing test and it came back normal. So the ENT specialist then suggested I get an MRI to rule out a tumor or anything else. So of course I went into panic mode because nobody wants to hear that word. So I went and had the MRI done of my brain. And let me tell you I've had a MRI done before on my back but this one I hated. Inside this machine basically with your head pinned down in this contraption so you can't move it and call bell in your hand in case I can't take it anymore. I wanted to press that button so bad but I didn't. About a week or so later I had a follow up appointment with the ENT doc to go over the results of my MRI. Thankfully she told me there were no sign of a tumor, but she did notice I had empty sella syndrome and Chiari (pronounced key-ar'-ee) malformation. Empty sella syndrome occurs when the pituitary gland shrinks or becomes flattened. She showed no concern over this because she stated it was obvious my pituitary gland was functioning properly. The Chiari Malformation on the hand she stated could be serious, but she didn't know much about it and she referred me to a local neurosurgeon. So there I sat still with no answers really and clueless about Chairi Malformation and another appointment this time with a neurosurgeon. I began to do what I think most people at the time would have done when a doctor tells them they have this or that. I began to reseach Chairi malformation(CM) and I began asking random people or people in the medical field that I knew had they heard of it. Many had not. There was some information online and I received a lot of insight on what it was when I searched CM on Facebook. The Chiari malformation (CM) was first identified by Dr. Hans Chiari in 1891. It is an uncommon, complex, neurologic deformity which is present at birth.The brainstem normally sits in a funnel-like cavity just above the spinal cord. The problem occurs when the posterior fossa is not formed properly. Instead of the brainstem sitting in its proper space, the cerebellar tonsils are displaced downward into the funnel, thus causing pressure on this part of the brain and spinal cord. Symptoms often occur in a slow and insidious manner. They include headaches, visual symptoms, dizziness & auditory symptoms, difficulty swallowing and hoarseness, pain,numbness, problems walking, respiratory, heart and abdominal symptoms, general and cognitive symptoms. I quickly realized there were thousands, if not millions of people who had the same condition and exhibited the same symptoms as I had. There were several groups set-up on Facebook for people just like myself who we're looking for some sort of relief and answers. It was there I joined a group called Chiari Real(which I encourage you to go join if you would like more insight on this condition). Within this group I have been able to talk to several people of all ages and backgrounds. Many of the members suggest I start this page but I didn't at the time out of fear of how people would perceive me or take me asking for help. (I will get back to that later) So at this point I have my first appointment with the neurosurgeon who confirms once again I have CM but he would like me to have more tests done and another MRI (I didn't want to go through that process again). So I have another appointment scheduled in Charlottesville for the MRI and another appointment to have a cerebral angiogram(to rule out aneurysms) at the hospital. Now mind you during all this time I am still going to work second shift and working on my Master's degree online. However, approximately 6 days before I was scheduled to have the MRI and 11 days before the angiogram I get let go from my job. As if I didn't have enough going on already, losing my job and having to stop going to school because now that I am not working I can't afford it. Of course I was upset and hurt,didn't know what I was going to do but I knew it would all work out and is still being worked out. So the doctors still told me I needed these test done and I could apply for financial assistance. I went ahead with the MRI and went ahead with the angiogram with no insurance. 26,000 dollar bill later, a trip to Charlottesville for a second opinion(where the doc told me "I think you have CM but it's not causing you any trouble) I was told there were no issues with the angiogram, MRI showed same info as other, after I spent two hours waiting to see the neurosurgeon for a follow-up he told me "there is nothing I can do for you." At this point I'm back to square one. I didn't take heed to what many of the people in the Chiari Real group had warned me about the "Chiari shuffle" (where many people are shuffled from doctor to doctor never getting the help they need). Suggestion that I should see a specialist makes sense to me now more than ever. But I know it will take time and resources and a lot of prayer, which is were I am now. Praying daily for relief, help for others with this condition, help for others with ANY condition and that someone will read this story and be inspired. My prayer also in writing this is that people realize that illness is not always defined on how someone looks on the outside. Someone can look "perfectly" fine on the outside and still be dealing with pain on the inside. I have started to look back over my medical history from when I was going through back pain and seeing a chiropractor and doing physical therapy and eventually having epidural injections for the pain and see that it is all related. Prayerfully I am asking that you or someone you know contributes to my fund in order for me to seek help from a specialist. Also any money I raise here will go towards the medical bills I currently have and will acquire. I was very hesitant to tell my story (this is a brief part of my story) like I know so many others are out of fear of being judged or critized. I also really haven't told but a few close family and friends because it's so hard to understand and explain. But being a woman of faith and a strong believer in God, I know there is no reason to be ashamed and I know only He can judge me. I read a classmate's gofundme story and knew I had to give to him and knew it was his story that would inspire me to share mine. If you can give I thank you from the bottom of my heart, even if you can't I thank you from the bottom of my heart. I would just ask that you share this story to spread awareness about Chairi Malformation and to spread the word that God is still ultimately in control and He is still blessing no matter what.
Below are links I have found helpful in learning about Chairi Malformation:
Organizer
Monique Lacy
Organizer
Winterville, NC