Hi all.
I’m not sure how I got here really. I have such a long complicated story. I guess I just wanted to know that I wasn’t alone, share my story with the world. It’s easy to get lost in this life when you’re dealing with so much.
So here it goes. This is how I became diagnosed with Chiari Malformation.
I was diagnosed March 3rd 2015. But pain has been plaguing me a long time. I’d say the real beginning when I was feeling horrible was back in the summer of 2013. I was 15 years old. I had gotten really sick with a bad flu/virus. I had the worst headache in existence. I always got headaches though. Every night I would. Never thought much of it. Just thought it was just me. I get headaches. No biggie. My friends would always think it strange I would get it so much. But I brushed it off.
Well, I was sick and my back was hurting like crazy. It felt like a stabbing pain. Knives piercing me all over. It was awful. Ever since then I’d get the stabbing pain in my back every now and then. It’d especially act up if I was standing too long washing dishes, or walking, or just doing anything physically exhausting. Still, never thought much of it. I would complain about it to my mother. (We’re not very big fans of going to doctors so we both brushed it off as nothing.) Spring of 2014 is when we realized this wasn’t something we could just brush off. It was like overnight. I was standing cooking because we were going to have guests over. My back was never worse. I fell in bed and I remember even during sleep I’d have horrible stabbing pain. But this time it increased. I couldn’t sit up, forget walking. My mom tried rubbing me down with oils to help. It did…a little. So I thought. The next day I was worse. I remember crying in bed because I couldn’t get out. This time it was my back and legs. It felt…numb, yet hurting at the same time. It was the worse feeling I had ever felt. I didn’t understand what was happening to me. All I knew was I wanted it to stop. I wanted to walk. I wanted to not feel like my body was useless. I felt worse for my parents. They just stood there not knowing what to do. No one could even touch me. If they did I would erupt in a fit of shaking that wouldn’t stop. I was bad. I couldn’t stop. I felt paralyzed with pain and numbness. It was like a long nightmare. Sometimes it would last hours, other times minutes.
I think I was even worse because I was under a lot of stress. My mom was diagnosed with Graves Disease, and her and my dad were going through a rough patch in their marriage. So basically it was me just holding things down. Taking care of my little sister, while my oldest brother just shut himself out. To this day ever since I got sick he shuts himself out. People have different ways of coping I guess.
My parents decided to take me to a chiropractor and I got my first X-ray. They said my back was out of place and I needed adjustments 3 times a week. Which let me tell you. Added up in cash. But my parents were so desperate to help me relieve the pain. 2 months of this, I was getting worse.
I started having stomach issues. Food didn’t stay in me long. Headaches were getting worse. I noticed blood when I used the bathroom. The adjustments weren’t helping. In fact, I was getting worse. The chiro was extremely confused. Noticed I was extremely shaky when I was trying to do exercises and suggested I take a blood test. I did. Discovering I was severely anemic, and had b12 deficiency. I started taking iron supplements to help and b12. My energy was a little better. But doing little things was harder than it should’ve been. I was tired all the time. I would get episodes with my legs, or arms everyday. Couldn’t walk for a bit. My stomach got worse and food burned every time I ate or drank. (I think I had an ulcer for a while.) I went to see a doctor. They were puzzled by my symptoms. They thought I had lupus, I tested negative. They tested for IBS, I tested negative. They tested for Crones Disease. I tested negative. Each time I was disappointed. That sounds weird I know. But when you’ve been going through pain for so long everyday. You just want an answer. You just want to know WHAT it is. So that you can figure out how to help it. What’s the cure. And with each passing day I got worse, and no more closer to finding out how to stop the pain. I got a colonoscopy done and they found out I had polyps. They weren’t cancerous thankfully and they burned a few off. But they said I had a lot which was possibly the reason why I don’t absorb my vitamins very well.
Then. A miracle happened. I started feeling better. A whole month. Less episodes. I’m feeling a bit better. Stomach isn’t hurting much anymore. I think I’m getting better. I go to a different chiro that’s cheaper and way better. And then it strikes. A horrible episode with me crying in pain. I feel like I’ve been electrocuted in my body. Pain everywhere. It was a wake up call.
You’re not better. The chiro is confused. Blames it on stress. Says it’s all in my head. Doesn’t understand why I’m not getting better. I felt…upset. I knew what I was feeling. It wasn’t just in my head. It was real. It was pain. I felt like no one believed me or understood. Few of my friends were also stating I was just stressed out and it would go away. But it didn’t make sense to me. I would experience pain even when I was happy. How was stress the cause? I knew there was something wrong with me. I didn’t care what they were saying. It wasn’t just stress causing me this real pain.
I get an MRI done after tons of saving for money. (We didn’t have insurance so everything was being paid on the card.) I went to a neurologist and he thought I might possibly have multiple sclerosis. But then that was when I was finally diagnosed with Chiari Malformayion type 1 after the results. It was unreal to me. I didn’t even know what it was. The worst part was I found out right before I had to go to work. To say I did not want to work at that moment is an understatement. As soon as I got home I went to do my research. My uncle who is a doctor wanted me to get two more MRIs done for my neck and back to see if there was anything else wrong. I googled Chiari stories. The stories…definitely did not help my emotional state I’ll tell you. I started feeling hopeless. I wanted to die. Anything was better than having to live with this. Mom refused to give up. I went to see a chiro neuro. He said there was nothing he could do for me in my condition. He recommended me to a doctor who specialized in Chiari Malformation. A neuro surgeon. This all in sporadic month times. Patience was a common theme here. I started tolerating and embracing the pain now. Accepting it. A few friends ditched me at this time when I thought I had support. Only a couple really stuck with me through it. Others don’t like talking to me about it. I hated showing weakness. I never told strangers or my boss about it until it started affecting my work and I couldn’t hide it anymore. Whenever I would go a week without pain my parents would get so excited. But I wouldn’t. Because I knew whenever it looked like I was getting better, it would kick me in the butt to remind me I’m not. I got the MRIs on my neck and back. I was told I had a tear in my disc which was causing a slight bulge in the back of my neck. I remember thinking. Great. Another thing to add on my list of things wrong with me. I started experiencing new symptoms now. Terrible time breathing. My chest would feel extremely tight. I would feel like I can’t get enough air and my ribs would feel stuck or burning. I would feel burning a lot every where. I got dizzy really fast and would black out for a second and fall. I also was experiencing trouble with my heart. I get palpitations. When I’m half awake, I’m aware of my surroundings. I could move if I want. (So I know it’s not sleep paralysis) but if someone makes a noise or even just talks normally and I can hear it. My heart will start beating really fast and hard. I would toss and turn, hoping it would stop. But it doesn’t. Finally I would give up on sleep and just sit until it will go back to normal. I was depressed. I was getting suicidial thoughts. I felt alone. I would never tell anyone how horrible I really was feeling so I wouldn’t worry anyone. I stopped telling my parents when I felt pain. Cause all it would do was make them sad. The only way they can tell is if they look at me and I’m tearing up from the pain. Or if I feel a shock and my body will move without me wanting it to.
I got another MRI done to see how my spinal fluid was and if it was getting to the place it needed to be. The doctor said I actually wasn’t that bad. He doesn’t understand why I’m getting these bad symptoms. He then said I had herniated tonsils which could possibly be causing the symptoms. But he doesn’t believe I need surgery. Doesn’t think it’s necessary. He’s just confused as to what should be done with me. The fluid isn’t getting to the posterior of my brain very well, but he has no idea what to do for me. He then suggested I take a diuretic to help with fluid blockage. I’m taking a herbal one however since I’ve never taken medication in my life. I take everything natural and herbal. So I’ve been doing celery seed. He wanted to see if it will make a difference, and wants a second opinion from a neurologist on what he thinks should be done with me.
That’s where I am at the moment. This happened in September. And weirdly enough October I was doing great. Then I got an episode which reminded me I wasn’t great again. I haven’t gone to a neurologist because we can’t afford to visit as yet. My health has been on…hold really. I’m half here praying for a miracle. Because I have been improving. I just mostly have the heart and breathing problems. Bad headaches as usual, back pains,(although not as severe.)nausea, and leg pain now and then with my burning pain all over. I’m also on a strict diet. No gluten, no dairy, no sugar. Which has helped my stomach problems a lot too.
I’ve come to the point in life where I guess if I have to live with this amount of pain…I can. I’m tougher than I thought I was. And it’s made me stronger. I learned a lot from this entire experience. It’s a long, sad road that I hope will end soon. I hope that all of us can get relief and help in any way we can. I don’t know what I’m going to do from here. I’m just living life in the moment. Trying to not let this stunt my life. I feel like it’s already held me back, but I keep fighting it.
And really? That’s all we can do.
Fight this horrible disease.
Fight and don’t let it win. Cause when you let it win. You’re giving up. No disease deserves the satisfaction of winning.
I’m fighting.
I hope you all fight too.
Hi, Calz! Welcome to this community! I'm sorry you're experiencing so much pain.
Based on my experience, I'd rather go to a doctor who is honest enough to say that he doesn't know what to do than one who says " there's nothing wrong with you. It's all in your head." And only now, reading your story, I realized that probably those who say " it's in your head", whether they are doctors or 'friends', they have never experienced what we deal with every day, so there should be no reason for us to let those words hurt us.
I know, living with no answers can make you feel insane, so I wish you get yours soon!
Hi! Thanks so much for your nice comment. It’s nice to “meet you”. I agree that it’s good he says there is something wrong with you, but he doesn’t know how to help. Still frustrating that there’s nothing that can be helped though…
That’s so true. They couldnt understand what we go through. I try not to take it to heart so much. Thank you so much for your support and kind words. I hope you also are not in too much pain.
Hang in there!
Thanks! :) I don't experience excruciating pain. Mine is mostly moderate. My worst symptoms are extreme fatigue, muscle weakness and stiffness. I have many more symptoms, but these are the worst atm.
Hi Calz
From your diagnosis story, I believe that we're around the same age. Hopefully we can be of some support to each other because of this, we're both just starting out our lives and suddenly we have this awful thing forced into our lives. I'm sorry to hear that you're in so much pain, it really is dreadful, isn't it? I hope that you can see a doctor soon.
I also have type 1 and i'm extremely symptomatic. It's taken me 5 years to know what is wrong with me. I can completely relate feeing relief when being diagnosed but also suddenly being overcome with so much worry, because now it's real. It's something that we have to deal with, for the rest of our lives.
I hope that your symptoms have not been playing p since you wrote this post and that you are as ell as can be.
Rhea
Thank you so much for the comment. I am so sorry for everyone’s pain! I’m so sorry It’s taken you 5 years! That has to be so frustrating. It is hard dealing with all the pain when you’re trying to live a normal life and getting started in the world.
I’m still having trouble. Trying to ignore it as much as I can. I hope everyone else is doing ok too! Hanging in there