I was diagnosed back in December 2015 after years and years of knowing something was wrong with me, and being misdiagnosed all those years. I look back on my childhood and teen years and now can very clearly see signs that something was not right, going all the way back to being a baby and what my parents describe of me back than. I’d learn one thing, and as soon as I learned something new, the other thing I would lose. I’d learn to walk, and wouldn’t talk like I used to, I was in speech early on, and shortly after that put into learning disability classes, I just didn’t pick up on things like other kids. Later on in life my palms were always sweating, and my hands were always shaking. I remember my dad telling me back in 8th grade that he thought I might have some neurological issues because how shaky I always was. But, we never looked in to it. I always had asthma, so was always a sick child. But it wasn’t until I turned 23 and got pregnant with my son that things started severely changing for me. I remember being just a few months pregnant and having my first heart issue feeling. I went to the ER for it. Nothing came of it and they just made sure the baby was okay. Than giving birth to my child, I ended up having a c-section and I remember feeling really really weird, and the heart monitor I was on beeping, they gave me Morphine to calm me down and never said anything about my heart sky rocketing. After I had my son, I remember when my dizzy spells started happening, I had never suffered dizziness, I started working out in the gym when Alex was about two years old, lifting weights, doing cardio, I’ve always been out of shape and my first time ever in a gym. Everything was okay until after a month or so starting at the gym I introduced weights to my workouts. That’s when everything started, I started becoming dizzy all the time, my hands would go numb, I got diagnosed with vertigo, and carpal tunnel in the hands, my heart started skipping beats and I just felt horrible, I got diagnosed with my on set chronic anxiety, eventually things started going so bad, I stopped going to the gym. Like I said before there was always hints something was wrong with me, but no doctor could ever find anything. Finally after a year fighting with symptoms worsening, I got in with a cardiologist, I was diagnosed with tachycardia, I got diagnosed with a thyroid problem, but my numbers didn’t make any sense, the doctor even mentioned he never seen numbers like mine, he was so confused he didn’t put me on anything and sent me for more testing. The dizziness was getting worse and worse, I couldn’t get out of bed some days, it hit out of no where and I’d be down for days due to It. I was exhausted, felt like no one was hearing me when I said something is just not right. My pinky toe, and the toe next to it on my left side started feeling like there was a string wrapped around it, they were numb, but it truly felt like something was wrapped around my toes. Finally in December 2015, with a newish Doctor of mine, she decided to do a MRI, she called me in the very next day, I sat in her office and she said ” your mri did come back abnormal” I of course was thinking the worse due to the fact my mom had brain tumors. She told me “You have Chiari Malformation, and the best way I can describe it to you, is that the back part of your brain is falling out of the hole in your skull” she went into detail but everything after that was a complete blur. I had drove myself to the doctor, and I remember getting in the car holding the papers and crying, I drove home and told my than husband (now ex husband) and that in itself is another story. Let’s just say that I got diagnosed in mid December 2015. New Years him and I seperated and divorced four months later. After being diagnosed of course I did MRI after MRI. I actually had a pretty good doctor where I lived. But I than moved back to Oklahoma and I have been fighting with finding a doctor here. My sysmtoms now are way worse than they ever have been. I have a appointment next month with a new neurologist and I’m hoping she is familiar with Chiari Malformation. I want to include a list of my symptoms with chiari malformation. They have worsened over the years, and as of December it has been five years since I was diagnosed.
Chiari Malformation- NORD (National Organization for Rare disorders) Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward into the hole of the skull. Chiari can block the spinal fluid flow leading in spinal cord injury, possible paralysis can occur. Chiari Malformation can be a very serious fatal disorder.
My list of symtoms include
Dizziness, headaches, brain freeze feeling, balance problems, tachycardia, sleep apnea, numbness and tingling, tinnitus (ringing in the ears) hearing problems, memory problems, trouble swallowing, scoliosis, pain in neck and back of the head, feeling sick often, sensitivity to lights, sensitivity to sound, shakiness, blurred vision, trouble swallowing food, difficulty with fine motor skills, unsteady, pain in body, a feeling of leaving my body, heart problems, weakened immune system, and these are just all I can think of right now.
Some days I can’t even get out of bed, some days I have to choose what I want to do, if I do this and this, I won’t have energy to do this . I can wake up and feel amazing, make plans for that day, be excited, get ready and all dolled up, just for dizziness to hit me and totally knock me down. I don’t get to live a full life, like I want. Everything I do has consequences. I can’t just get up and not think about what I’m doing, because it’ll affect me in some type of way. If I walk into a store, I get a basket rather I need it or not, because it helps me stay steady, I easily fall, also the lighting causes me to get dizzy. I hardly go anywhere because I never feel good, and it gets chalked up to me being a home body. Sometimes even if I’m starving I can’t eat because I have trouble swallowing, and afraid I may choke so I just won’t eat. Most nights I don’t sleep because my heart has irregular pounding beats (looking further into that right now, appointment next week for heart monitor results) there is just so much that goes into my life. As I type my thumb is completely numb. I try not to ever mention how bad I feel all the time. I’m in a relationship and he does his best at understanding my issues, but I’m very quiet about how I am feeling alot of times, of course he sees the neurological issues himself, that’s kind of hard not to see, the shakiness, fine motor skills issues, memory loss, he is always catching me because I lose my balance all day every day, luckily he is usually right next to me to catch me, but my overall how I’m feeling in a day, unless it’s my dizziness that affects me doing a ton of stuff, or my heart issues, I pretty much keep quiet about the way I fe during the day. Or quiet at night. Right now it’s 3am and I get getting woke up with feeling like I stop breathing. Some days I just feel so worn thin. I’m exhausted and tired, and always living in fear of whats next. I’m on the couch now, in the dark. Typing away about the thing that keeps me up at night, the thing that makes me day difficult. I do admit there are few days where I feel nothing is wrong with me, but that is very very few. But I cherish those days.
Chiari Malformation is a progressive disorder, most people often don’t know they have it until later on in life, mod 20’s because symptoms from it worsen. Some people have no symptoms at all and live a normal life, some people have such severe symtoms they can no longer walk, there is no cure for chiari, since this is just how you happened to be born, with “too much brain to contain” there is a surgery that is supposed to lesson symptoms. I deal with my symptoms, but eventually if my spinal fluid becomes blocked even more than want it is, than surgery is needed to relieve the pressure off the brain and to make room for the spinal fluid to flow, this surgery is called decompression surgery, where they remove a part of your skull, and vertibrate, to make more room for the brain, usually a mesh sling or something is placed to hold the brain up. Unfortunately most people who have this brain surgery don’t just stop at one surgery. Usually a few is needed due to something not going right on the first one, and even though you have the surgery doesn’t mean your symtoms will go away. It depends on the person, some may have no symptoms anymore, and some, may have never went away. The main point of the surgery is to allow more room for the brain for the spinal fluid.
Things I struggle with, I’m 32 years old and a mother to one child, he is 8. Most of my major symptoms happened after pregnancy. I want more children. I want one more. And I am getting older, and I’m unsure my body is healthy enough to handle another pregnancy and that kills me inside. I always talk about if I get my weight under control maybe everything will be better and I can carry a child and be healthy. But honestly, not sure if that’ll ever happen. I need to lose weight, it’s so hard when food really seems to be the only thing I can control in my life. I’m trying again tomorrow to start eating healthier to lose weight. But reality of everything even if I lose weight, I may never have another child again, because the more I think of things, starting over, and already not feeling good as it is…. it wouldn’t be fair to anyone. Plus I don’t know about you mom’s, but I am always worrying about my son, and if something happens to me, where does that leave him. I lost my mother at a young age. I don’t want the same for my son, let alone another child. I think it’s really a selfish feeling in my head, the want of having another child is selfish, but it’s something I struggle with when most people can just have as many babies as they want and not have to worry. I have to worry about chiari being passed on to my children.
I truly never got to live a normal life, but I remember back when asthma was really the only thing in my way. Man I had some fun as a teen though. I have always been in and out of hospitals because my asthma so bad, on top of that I smoked cigarettes starting at the age of 14/15, along with weed back than. As my older teens approached I was in ICU all the time due to my asthma,. But I wouldn’t let that keep me down for too long. I’d get out of ICU and spend a few days resting and back to my old self, until a few weeks later where id be put back in. The smoking was terrible for me, not sure why I ever started in the first place when I couldn’t breathe already. I put the cigarettes down the day I found out I was pregnant. Easier to do for someone else than yourself. I’ve now been 9 years smoke free. And my asthma is so much better than what it was. Back in the day even though I’d be in icu for my asthma, I never understood the instensity and how critical being in icu was. I was younger so didn’t realize what exactly that meant. I got on disability at 23 years old after not being able to keep jobs due to the severity of my asthma. But as I was saying other than that, before I got pregnant, I lived a pretty normal life, of course I had the little symtoms here and there, like being shaky, not being very “smart” which really was Id learn something and than forget it easily, but I always thought I was just a little slow at learning and had a learning disability that never got looked at. But my pregnancy, that’s what changed everything. I believe it has to do with how much your body changes while your pregnant. For some reason it took the pregnancy to intensify my symptoms. Which is so horrible because it’s like now your a mother and you have to not only care for your life, but your childs life too. But he is a happy and smart boy. People call him s genius he is so smart. I’m proud of him, I’m proud to be a mother and even though sometimes life is so unbearable, he brings so much joy to me. I am so glad I had the chance to become a mother.
Chiari Malformation has taken over my life, but I won’t stop fighting every day to survive. All I want to do is raise awareness of this brain disorder because even alot of Doctors don’t know about this, we are often told none of our symptoms have anything to do with chiari, bit unexplained where they come from. I hope to spread awareness, and in hopes that one dah it’ll be more understandable to where they can make it to where we can live much more qualify of life. I know this has been such a long blog, but I thank you for taking time to read it and get to know me.
-signed a Chiari Warrior Holly Nichole
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