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Amber's Chiari Journey

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My name is Amber and I have Chiari Malformation, type 1.  I want to start by saying that I do not like having to ask for money. I have been the sole provider to my 2 kids for the past 10 years and it has been hard to give up control financially. Secondly, I do think positively, and I plan to be back to work by the end of the year. Lastly, here is my story...

I have suffered from worsening, chronic migraines for over 20 years.  For years, doctors just gave me more medications or increased the doses of these medications.  I learned to handle these painful monsters, for the most part.  Then last year, the pain changed.  It started creeping up the back of my neck and into my shoulders.  This is when I demanded an MRI and we found Chiari Malformation.  Other symptoms started as well, bad nausea and dizziness that came out of nowhere (like being drunk)... confusion and memory loss that affected my ability to work and drive (I literally forget where I am going)...  chronic fatigue, where I can barely stay awake through a full day... extreme pressure in my ears, where I have to pop my ears several times an hour... slurred speech, heart racing, choking on foods, blurry vision, shortness of breath, and more.   These symptoms come on suddenly and rapidly, and have become VERY extreme, and a daily struggle for me. 

Chiari Malformation is the herniation of the cerebellum into the spinal cord due to a skull malformation. (VIDEO LINK AT BOTTOM) Basically, your brain is falling out of your head and being smashed by your spinal cord.  This blocks the flow of CSF (cerebrospinal fluid) causing it to collect and cause cysts on the spine (syrinx) and pressure on the brain.  THERE IS NO CURE.  The only known treatment is Decompression Surgery (aka surgery all the way to the brainstem... removing part of the skull, part of C1 and possibly C2 of the spine to make more room for the brain).  They may also remove portions of the tonsils of the brain, before covering the opening with a skin graft.  (VIDEO LINK AT BOTTOM).  There are only a handful of specialists in the country that treat Chiari.  They also test for co-morbidities (other spinal defects that go hand in hand with Chiari that may cause the surgery to fail, therefore are important to rule out).  I have seen 2 Neurosurgeons (NS) here in AZ that have performed the surgery, but are not specialists in Chiari. The 1st NS wanted to do the surgery with no further testing or meetings. The 2nd NS wanted to do further testing then surgery, however was not positive about the results. I am very scared of this surgery, but I know it will give me back my life.

This leads me to Dr. John Oro at the Colorado Chiari Institute in Aurora, CO. (VIDEO LINK AT BOTTOM)  He is a NS and specialist with over 30 years experience.  Once you are referred to him, they set you up with 3 days of appointments and testing with him.  If he feels surgery is necessary, you will have to return for that.  While I no longer have a job, I have been paying for Cobra so that I can keep my medical insurance in order to see him and have this surgery so that I can have my life back.  Even with insurance I am still responsible for 20% of his costs and surgery, as well as 2 trips to CO.  Our first trip is this Sunday, June 24.  Because this is a 14 hour trip, we will be driving half-way Sunday, then to Aurora Monday. I see Dr. Oro Tues, Wed, Thurs. We drive halfway back Friday, then home on Saturday.  We have to break it up like this due to the pain and migraines this long term drive will cause (Aurora is 14 hours away, and I cannot fly due to the pressure in my head).  We are also renting a mini van so I can stretch as need be on this long trip.  Ricky will be driving!

CHIARI CAN BE FATAL.  The cerebellum controls more than just balance.  It tells you when to breathe, how to swallow, your heart rate.  It helps with thinking tasks and other cognitive functions.  The nerve endings that are being damaged right now can be permanent, and can also cause paralysis.  The sooner I have surgery the better.

So to finish, we are trying to raise $20,000 because if all goes as planned, I figure we will be back in CO by the end of July/beg of Aug for surgery followed by 3 months of healing before I can go back to making a paycheck.
$2000 trip 1 to CO
$2000 trip 2 to CO
$5000 living expenses - surgery & recovery
$10,000 help medical bills
$1000 to cover gofundme costs

Here is a link to explain Chiari Malformation:
https://youtu.be/50nI45Qn878

Here is a link to explain Chiari Decompression Surgery:
https://youtu.be/x3l2YMUuwfs

Here is the amazing Chiari Institute I am travelling to:
https://youtu.be/kRNcx3uSngs

Thank you for your help! BIG thank you to my mom for all of her help so far! And thanks if you read all the way to this point! XO
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Donations 

  • Eva and Billy Lilley
    • $40
    • 6 yrs
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Organizer

Amber Lilley Chiuminato
Organizer
Tucson, AZ

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