Here's my story

My mother recommended that I find a support group for information and also for a more personal experience with Chiari. Based on what I've seen so far, it looks like I found the right place. I have a story behind my Chiari and I'd like to share it. It's a tad long and may be hard to follow given my current condition.

Here's what you're dealing with:

My name is Kyle. I'm currently 22 and enrolled at the University of Cincinnati. I operate a small business with my parents and business could not be better. When I'm not working, I'm with my friends constantly. I can easily be labeled as the "extreme college student" in the partying sense. My life is intense everyday, and this Chiari thing has followed me for the past 5 years.

Here's what I dealt with:

It all started in my Junior year of high school, lifting class. There was a repetition competition that day and I was prepared to work hard. My goal was on the swinging leg press with 200lbs. I had two people in my group and I was the second person up. The first guy was a wrestler for the HS, pretty good if I had to say. He finished with 27 reps. I knew I could beat it, but I wanted to crush it. Once I hit rep 45, I started experiencing severe pain in the back of my neck. So naturally, I clenched harder and ignored it until I hit the nice even number of 50. During the strain, I screwed up my breathing pattern. Once I hit 50, I stopped and my body went completely limp. I was out for about 5 minutes. When I woke, all I remember was seeing a lot of blue. My spotters were asking me if I was alright, not even knowing I passed out. I said yes, climbed out of the machine and stumbled to the drinking fountain. No one knew anything, not even myself.

I decided to tell my mom a few days later. Being a nurse, she immediately scheduled me in for an MRI. I believe I went through about 5 neurologists. Some of them were confused since the flow study came back completely normal. Some told me that if I would have done one or two more reps, I would have cut the flow of cerebral fluids completely resulting in death. I then found Dr. Tew of the Mayfield Clinic whom diagnosed me with Chiari. I believe it was 4.5mm, not technically a Chiari. We did not look at surgery at the time. For three months I had headaches 24/7, some were extremely severe. I also experienced severe memory loss and the inability to solve simple math problems. The only relief I experienced was when I was drinking either blue or orange Gatorade, not Powerade. The headaches, memory issues, and math skills gradually came back over the next three years.

Here's what I'm dealing with:

The one thing that triggers my severe Chiari pains are shallow coughs. The coughs that happen when you don't have much air in your lungs, and the body strains to get it all out. These can send me into the fetal position with excruciating pain for up to 3 minutes. By far the worst pain I've ever felt in my life. After these "episodes" happen, I typically have headaches for the next 4-5 days. I've had three of these in the past 6 months, the last one being the worst. About 17 days ago I experienced one of these episodes again. I didn't think much of it until my symptoms started getting worse. Shoulder/back/neck pain, dizziness, vomiting, severe headaches, migraines, lowered cognitive thinking skills, fatigue, depression, shaking, and disorientation. I currently take zyrtec, a diuretic, Excedrin, and ibuprofen. I have an MRI w/ flow study scheduled for Monday and a follow-up on the following monday. My mom is pushing for surgery but I can't imagine laying in a bed for 4 weeks.

I'm open to questions. Otherwise, I hope you take something away from this story.

Kyle

Hi Kyle, and welcome... it was wise of you to actually to tell your mom as to what happened at that meet, pretty much what you are experiencing sounds quite normal for most if not all chiarian's. You need to know the size of the herniation isnt really what matters what matters most is how the symptoms are affecting your life and by the sounds of it they are doing a good job at it. As for the flow MRI- When I had that MRI mine showd no blockage- BUT, i DID have surgery due to the symptoms messing with my life far too much..

Honestly, is 4 weeks of resting too much if it means things could be better after words? Do you still lift

take care

Lisa

Wow! That is an amazing story. As a momma myself…I understand her warning you to have surgery. I am so sorry you are having to go thru this. My 5year old son has surgery on the 5th. It is nerve wrecking but the thought of him having the kind of pain you are going thru is unthinkable. We are all here for you. Btw my son is having surgery at Cincinnati Children’s neurosurgery department. They have been amazing. So we are real close to you. Keep us informed of your decisions.

Welcome, Kyle! I think you'll find many of us here can sympathize with something similar.

I was much like you, when I first heard I needed surgery I told the neurosurgeon, "I simply don't have time for that." But later that day I had the thought of...will I ever have time for that? My surgery is scheduled for 11/23. I am nervous, but more excited for an improvement in my symptoms. Like you I struggle with memory loss, basic cognitive skills, and many other things. I have a migraine everyday, and have stopped getting benefits from any medication. I am in graduate school at Ohio State, so you can imagine how this impacts my every single day. I am 22, but will be 23 on 11/25. Many people thing I"m a masocist for having my surgery when I am, but honestly I want it over with. I want to get past this, and start living my life normally again. I will have an alternative Thanksgiving, and probably won't enjoy my 23rd birthday....but my symptoms should be better by then, and I"m staying positive. I hope that your tests on Monday begin to help with more answers. Maybe your mom is right, surgery is for the best. Be sure to get an opinion from 1 or 2 neurosurgeons. Keep looking until you're comfortable with one. You're in an amazing place, the Mayfield Clinic. I'm sure that they will take great care of you! But what's most important is your comfort level with their expertise and skills.

Please keep us posted on what you find out! I'm sending lots of prayers and well wishes your way! GOOD LUCK!

Again, welcome! You've found an amazing group here. I found out about my Chiari about one month ago, and everyone here was SO helpful! Let me know what we can do for you. We're all here to support you.

God bless!

Katrina

Kyle,

Surgery does not mean that you will be in bed for 4 weeks. You will be up and walking around in a matter of days and probably home from the hospital in about 3-4 days. It is a painful surgery, I'm not going to lie, but it is not as bad as I thought it was going to be. And I'm ALOT older than you! LOL! Surgery MAY alleviate alot of your pressure and therefore help emmensely with your headaches and pain. It is definitely worth looking into. Take care and keep us posted on what your flow study shows and what you decide for treatment.

Carla

I can definitely relate to the headaches. I have them when I am laughing too hard - which tends to be a lot. I have been doubled over in pain from laughing with my friends several times a night. I honestly thought EVERYONE experienced them and thought it was normal because I didn't know anything different.