4 years ago I noticed I have a problem with my eyes strange thing happens for days then it will go away only to happen again. It’s weird but it feels like my eyes are going gross or it’s hard for me to look at something . It’s weird it not like I’ll see blurry at times it just that my eyes don’t seem to work normal and I’m having to force them to look at something and it’s hard to do. I notice now when I yawn my hand will shake. I than started to feel vibrations in my legs to where I’d felt like a cell phone was on vibrate ringing in my leg. I would look at my leg in the area and nothing was moving on the outside but I could feel it on the inside . Than my fingers began to hurt and get numb and sting, eventually my feet began to feel like pins and needles and numbness and tingling, lower back pain frequent urinations, horrible headache that last at times 11-14 days non stop, brain fog, talking and can’t get words out my mouth but in my head I know what I want to say, my scalp hurts so bad at times only from the middle center down to the base, crying, more unable to control anger, frustrated easily, ringing in ears, had ear infection for over a year right before these other symptoms started. Oh let me say I’m 54 years old. Continuing, my face and jaw in the past 7 months started hurting feeling like someone is twisting my lower jaw from the top, at times my teeth would hurt when I get headaches, and for past 5 months or so the area between my shoulder blades in the back and neck hurt and feel tense as if someone is pulling them upward and I find myself always tense and having to intentionally relax them all day long. I wake up now in pain that will go away about 20_30 minutes of walking around. I get nauseous sometimes but have never thrown up. I get upset very easily and even I feel crazy not understanding why things frustrate me and I can’t control it. Some days when my jaw and face feel weird tingly or numb it’s apparently swollen because my devices will not recognize my face but off thing when I fell better and face not hurting my phone will recognize and open . After three years of complaining, thought I can’t say i was running to doctors often, because I don’t like going to doctors, my doctor ran test to see if I had Fibromyalgia lupus some other neurological issue because she felt my symptoms were neurological. The test she ran didn’t come back with anything so she was stumped didn’t know what to tell me because she couldn’t find what was wrong. After a while my headaches started to get worse and that they hurt much worse and differently and they were lasting five days, a week, 11 days, 14 days nonstop. I was getting depressed and anxious tired of the headaches that were pretty much unbearable and I went to her crying pleading basically she ran an MRI and they saw something that they were not looking for. I understand that Chiarai malformations are usually found accidentally. They happen to find mine accidentally looking for other things and thank God someone studying my scans noticed it which is 5.5 MM and needed to do a CT scan and determined it was in fact CHIARI malformation and whatever other information they needed to know. I was told by my doctor called me after I received a letter in the mail saying that they found a significant abnormality in my skull and that I needed to contact my doctor immediately. I was scared but I called and eventually was told that I have CHIARI and that I needed to see a neurosurgeon because mine is at a point where I would need surgery. I was scared I cried but I was tired of hurting and being sick that I was just ready to do when I got to the neurosurgeon he walked in and the first thing out of his mouth worse you don’t need surgery and then he proceeded to show me the scar on his neck and it felt to me like he was really trying to discourage me from having this surgery. He complained or talked about how bad his pain was that it was not a simple surgery that most people don’t get much relief from it if any at all. I felt like they thought I just wanted surgery and that’s why am there. I was Only there because my doctor said I needed surgery. As I begin to tell him my symptoms it was clear to me that some of my symptoms he thought I was probably making up. I began to cry because at that moment I knew or felt okay im not going to get any relief at this point. They sent me to a neurologist who tell my info had me have blood works and urine test abs it’s been months and I never got a call for test results and could not make my
Appointment they set because i was sick and concerned I may have. Had covid never got a cal back from them and being so tired and frustrated and felt like no one thought it was serious I have left doctors alone and have been dealing the best I can. I’m afraid or surgery but want some other kind of relief and I don’t like taking meds synthetic drugs. The neurosurgeon also fave me the impression that he did not think all
My symptoms were from Charai malformation because mine was only 5.5mm . I’m just tired of feeling sick daily however for the past few days ironically I have felt okay enough and didn’t have a headache. Also, anxiety and feelings of depression are when I’m feeling today and I don’t understand why I would have anxiety or feeling sad and down . Thanks to this site I can vent . I’m tired of crying and not being taken seriously . Sorry if I’m all over the place as I am
Aware that even my thoughts are not able to be organized .