I have Chiari: You're going to be ok! My story

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Hey everyone I'm Cheyenne and I had my Chiari 1 Malformation decompressed yesterday in the early hours of 7:30 am.  Ironically, September is Chiari Malformation Awareness Month... so represent us Chiarians by wearing some purple or a purple ribbon.  

So here is my story:

When I was in high school, I think my senior year of high school, I had been the captain of my field hockey team and absolutely loved the sport.  I never really liked any other sports or activities until I was introduced to hockey.  I abused my body, honestly, I loved the sport so much.  If you've never touched a field hockey ball, it's literally a rock with a small hollow center.  As a matter of fact, I was SO good at it, I blasted a ball into pieces!  Besides the fact, I was blown in the back/spine multiple times but I kept on truckin' along.  Anyway, I would come home from exerting myself and would experience dizzy spells and head and neck pain.  I was 16 at the time so I figured it was puberty or stress or whatever 16 year old bodies endure-- I shook it off.

After high school, I went off to my first year of college at 17 years old to study Chemistry (I hated it) and I had experienced similar stress and the same dizziness and all that happy stuff but this time and then I developed anxiety which made me have panic attacks.  I would begin to feel faint and then... freak out.  Again, I thought it the stress of a new environment and new people and sharing a room with a girl who didn't really like me.  Also, the fact that I didn't know what to major in and I pledged this weird sorority; my freshman year was garbage.   I decided to leave the college and return home for my own mental and physical health.

My second year of college came around and I had gotten into Marist College in Poughkeepsie, NY.  I was comfortable; majoring in what I loved (English) and attending a prestigious school, yet, I was still having these dizzy spells and crazy headaches that just didn't go away.  Despite this, I managed a 3.6 GPA and I felt on top of the world.  But my world collapsed before my eyes when I transferred schools yet again and moved out of my house into my own apartment.

So, here I am attending SUNY New Paltz, living in my own apartment and for a few months with my boyfriend, my health took a dive.  I became hard of hearing, depressed, anxious, mentally unstable and these chronic headaches and dizzy spells skyrocketed.  I woke up one night to use the restroom, became way too dizzy and fell head first into my medicine cabinet and just laid there, still and my head spinning.  I got up, threw up and scrawled to the couch.  Something was wrong.

I started with a psychiatrist, Dr. Lisa Batson of Crystal Run Healthcare who, essentially, saved me from letting my mental health take my life.  I was ready to just stop life and give up.  My physical health had put a damper on my whole life; I couldn't walk up stairs without feeling like passing out, I couldn't breath normally, my vision was bad, I couldn't turn my head, I couldn't focus on anything, I was crying more than I was living and I was only 19.  I kept asking myself, "Why me?"

Dr. Batson referred me to a fantastic neurologist who (no offense to my minority friends) could speak good English... she heard my cries for help but I was already exhausted.  I was over the blood work and medications and I certainly could not bare another MRI and neither could my wallet.  My neurologist referred me to a neuro-vascular surgeon at Westchester Medical center for these two dots on my frontal lobe.  At this point in time, my Neurologist had already diagnosed me with a Chiari Malformation but my attention was turned toward these spots: were they AVMs?  Tumors?  My anxiety, again, got ahead of me.

So this doctor dude from westchester was really a mistake-- I suppose neurosurgeons are a little narcissistic but hey, if I went to school for 15 years to pick at people's BRAINS I'd probably be too.  Whatever, he came late, shook off my issues as if they were nothing so I just shook HIM off like HE was nothing!  It's ok, doctors are people too and yes, they can still be a**holes!

I ended up just googling people from Columbia Presbyterian in New York, NY and came across one guy (an older guy), who specialized in pediatric Chiari Malformations; I gave him a ring and I had an appointment a week later!  How awesome is that?  No sarcasm here- it was truly amazing.

So, I sent him my images and we met comfortably in his office with his nice medical student-friend in the room and I just lost it.  I felt like all of these doctors were just treating me like a number and shooing me away to get on to the next sufferer.  My surgeon, Dr. Neil Feldstein, they most sensible and real human being in the neurosurgery field listened to me; he wrote down everything and even looked me in the eye!  He even thought my major in school was pretty sweet.  Tearfully, I told him "I just need someone to take me seriously" and he said "Well, I'll take you seriously."  Those few words were all I needed to hear to take the lump-some of stress away.  At this time, I am 20 years old, traveling an hour an a half to meet a brain-wizard in the city all by myself.  He cared about not only fixing my Chiari but helping me make decisions as far as taking a break from school and work.  He reassured me, brainstormed with me, made me laugh and feel comfortable when I was feeling slightly helpless and he agreed to decompress my Chiari Malformation.  He was prompt and so was his assistant, Rosemary.  It is honestly so important to me and I'm sure to everyone else who sees a doctor, that the doctor has an intellectual understanding of his/her patients, gives them the time of day and doesn't look at the patient like a number or some sort of addition to their paycheck. 

On August, 31st, 2017 (yesterday), Dr. Feldstein and some other guy that helped him out, decompressed my Chiari Malformation by removing a fragment of my skull and one of my vertebra.  While anticipating my surgery, I cried, I stressed, I tried to forget it but the day was coming and soon enough, I was up at 4:45am August 31st on my way to The Valley Hospital in Ridgewood, NJ.  Feeling numb, the nurses and doctors made everything easy.  They had a great sense of humor and were sociable.  No one shrugged me off (even when I had to pee at 3am).

Today is my first day post-op and I'm feeling okay.  I walked around with a physical therapist and wobbled around.  But all-in-all, I'm alright.  I'm only 20, so I should bounce back quickly.

Let me tell you, if you've been diagnosed with Chiari and the symptoms are really hindering everything, fix it now before it becomes problematic.  My cerebellum slides out 17mm out of my skull and that it, I guess, is way too far out.  So, as Dr. Feldstein put it "What do you do when you eat too much on Thanksgiving?  You open your belt and make more room for your belly."  And that's exactly what he did for my brain.  He cracked it open and made some more room! (In a less vulgar and more professional way, of course.)  Don't let Chiari ruin your life, put on your big girl panties and get it fixed.  I'm 13 credits away from a bachelors degree and I put it on hold to fix my brain.  I was getting dizzy and nauseous in class and I did not live up to my full potential in school.  My GPA took and dive and I had to do something.  As I tell my clients who are recovering from substance abuse, don't carry someone else's weight if you can't carry your own and that's true.  You have to be able to help yourself before you can help others.  Even a neurosurgeon is subjected to developing a Chiari Malformation; sometimes you have to do things for you and make for a better life.

As I sit here with a swollen head and neck, I am TELLING you to go get your Chiari fixed if you feel it is right.  Do what you need to do to get back into living life because life is way too short to be passing out into a medicine cabinet and missing out on all the fun.  Yeah, maybe your brain IS too big for your head but hey, you're probably just too damn smart!  Be smart, and do yourself a favor-- Keep fighting, my fellow Chiarians.  It's not an easy journey but it's not an impossible one.

4 likes, 14 replies

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14 Replies

  • Posted

    Glad ur surgery has gone well sounds like ur doin good. Im booked in 1week today so kinda gettin the butterfly feelings
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    • Posted

      Leanne, that is normal.  But believe me, you'll be so glad you did it.  I actually forgot I was having the surgery, like, two days before and someone asked about it and I just cried.  I was so scared even though I have had surgery before, I've never had brain/cranial surgery.  You can do this.  Please write me if you need some support! 

      Cheyenne

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  • Posted

    Glad you're doing so well! Mine was 23rd Aug and I've had a few set backs, but I'll get there. I'm a bit older at 37 though lol so you have the advantage!

    So great to hear of someone, who's come out of it feeling so good and positive, so early on! I really hope it continues for you... You have your whole life ahead of you now! Good luck 🙂

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    • Posted

      Kerenza, 37...20...65...100 doesn't matter what age you are, we are in this together!  I am trying to walk on a flat surface everyday.  My NP said walk a mile everyday to strengthen your muscles and all that jazz.  Hang in there! 

      Cheyenne

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  • Posted

    I need to find a dr. Who know what they are doing in south FL.  NONE of my dr. Even know what this is or care! I have had a migraine for days now and can't drive myself to the hospital. No one on the house seems to care as it has just been normalize to them since they we're babies. So many people are  those who never have a symptom. Me on the other hand have had them most of my life. Thank you for sharing your story and journey. It has helped me a lot. By the way I'm fro MA would have been so easy to travel to Boston hospital where that  dedicated to this!

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    • Posted

      Hi Ashlee,

      Believe me, I know EXACTLY how you feel.  I was tossed around by so many doctors who, evidently, could care less about my wellbeing. They just threw a big word in my face and said "feel better."  Please don't give up!  Where do you live now?  Florida? Or Mass?  I would like to help.

      Cheyenne 

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  • Posted

    Hey Cheyenne,

    I hope the recovery is going well! I just learnt I have a chiari & also quite an extensive syrinx. I'll be having surgery in about 8 weeks! I'm happy to read some positive recovery stories like yours.

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    • Posted

      Hey! I had surgery on the 31st. It is really a tough recovery but you can do it. I'm slowly getting back into things and taking some physical therapy now. Let us know how your surgery goes.

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