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Nicole’s Story (Chiari Malformation)

Nicoles Story Chiari MalformationI’ve been getting horrible migraines since I can remember. In 2005, at 17 years old, I began my journey seeing many different doctors and neurologists. I’ve been put on beta blockers, anti-depressants, anti-seizure medications, herbal supplements, nasal sprays, etc. In 2012, my neurologist diagnosed me with Chiari Malformation Type 1 through an MRI and suggested Botox for migraines. I did this every 3 months for two years. At first it helped. But a year into these treatments the migraines came back full force along with daily dizziness and lightheadedness. I told my neurologist, but she said they can be side effects of the actual Botox injections, and we continued doing them anyway. I was desperate. This was the only thing that gave me some kind of relief, even if it wasn’t long term. Finally we did another MRI followed by a second MRI with contrast days later. No changes according to her. I decided to look up neurologists specializing in CM, made an appointment and asked my doctor for my medical records. 57 pages later I found my doctor had diagnosed me with CM based on a 2 cm herniation of my brain.

June 26th 2014, I met with Dr. Greenfield at the Weil-Cornell Brain and Spine Center at NY Presbyterian. He confirmed this diagnosis and assured me that every route I’ve taken to help myself were all the pathways he would’ve advised for me. He ordered a full brain and spine MRI to be done and showed that I DO have chairi along with bulging discs in C3-4 & C6-7. I do NOT have any spinal chord tethering or a syrinx. He thinks I’m a great candidate for surgery. I have to see a neuro-ophthalmologist this coming Monday to check for any pressure/fluid build up behind my eyes.

I’m slightly freaking out. I know I don’t feel well. I know that I’m not exaggerating my migraines, dizziness, lightheadedness, bulging/pulsating veins in forehead, tiredness, inability to focus, extreme light sensitivity, ringing ears, and eye pain. But I really don’t know if this is enough to turn to surgery. I know something needs to be done but I’m extremely nervous and unsure. No decisions have been made yet, and I will be meeting with Dr. Greenfield after the neuro-ophthalmologist to discuss surgery in detail. All he mentioned so far is that I would NOT need a duraplasty and that C1 and C2 would be the main areas of interest. I’m getting married in a year. I want to have children one day. I don’t want to risk the life of having a family. I don’t want to be the wife that needs taking care of. I don’t want to be the mommy that can’t play cause she has a headache. I also don’t know the risks of this surgery and I’m truly scared.

I’m wondering if anyone’s been in this same situation?? I know these symptoms have taken a toll on my life but from what I’m reading on other blogs, it seems like my situation isn’t as extreme as others.
How did you know when surgery was right for you??

Nicole
New York
Submitted 08/16/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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4 comments

  1. Hey Nicole.

    You should email me, I had surgery when I was in highschool and was diagnosed with Chiari Type 1 as well.

    My email is jenna.aslin@yahoo.com

    • Hello, my name is Vanessa. My younger sister was just diagnosed with Chiari type 1 last week. I seen you post that you had the surgery in highschool. If you don’t mind me asking, How did the surgery go? Did you migraines go away? How long did it take to schedule the surgery? Did you try any other treatments?

  2. My daughter sadly passed away about 40 days after surgery at Weil Cornell. Neurologist was Dr. Safdieh.
    Dr. Theodore Schwartz was the surgeon. My daughter had contract with Weil Cornell promising to take care of her for 90 days. It was signed by Dr. Schwarz.
    The date of her surgery was April 19, 2013.
    To this day nobody at Weil Cornell talked to me.
    My thinking is Chiari-1 should be declared inoperable condition.

    • Jackie,
      I’m truly very sorry for your loss. I hope Weill-Cornell will reach out to you so you can get some closure as to what happened to your daughter.
      If you don’t mind my asking, what type of surgery did she have? Did she experience complications?

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