Amanda's Cervical Fusion Surgery

DONATION AMOUNT WAS LOWERED/TO REFLECT A "MET" GOAL- as our gaming marathon exceeded our expectations! The Go Fund Me page will remain open for additional updates on how the surgery goes! LOOK at the UPDATES area below for more info, we will update as we go <3
---
*As of January 2020 we are fundraising for Amanda's C1/C2 Fusion Surgery*  NOTE subtract- $660 as was raised this in 2019 which funded my wheelchair. Whatever the current total is, minus $660 is what our "actual" total is in 2020 for the fusion surgery. I didn't wish to close the campaign and start over. Everyone can see when the donations were made below. I thank everyone for all your support!  xoxo

  ***Watch us on YouTube & to learn more about my journey:  The Full Time Zebra Youtube Channel 

If you're interested in helping by donating in any other way I do have a PAYPAL  and you can also message me at: thefulltimezebra@gmail.com with any questions. Go Fund Me takes 2.9% of donations plus 30 cents from each transaction. The linked Paypal account charges the same. If you would like to send money an alternate way, I also have a Cash App account and a personal Paypal account. Please message me or my finance to obtain these details. 

Why are we currently fundraising for Amanda?
   Amanda was diagnosed with Atlantoaxial  instability (AAI= excessive movement of C1/C2) https://youtu.be/MLhcA6Ngrmc and Cranial Cervical instability (CCI=is increased mobility at the cranial cervical junction).  https://youtu.be/JsZVJi_nnaI These conditions are largely attributed to the cervical ligaments that have failed (stretched too much over time), also likely as a result of her Ehlers Danlos syndrome, Hyper-mobility type.  

   Insurance is expected to cover a large portion of expenses (out of network) however there will still be vast co-pays and an approximate 3 week out of state (16+ hours away from home) surgery anticipated. THE EXACT AMOUNT NEEDED 1 WEEK PRIOR TO SURGERY IS $8840. Surgery is booked for March 31st 2020.

   Amanda's symptoms have been progressing & her surgeon has recommended a C1/C2 cervical fusion at this time. The type of fusion could change (or require more) in the future, but as of now, we are hoping to NOT fuse C-0 (the skull) in order to keep some additional range of motion after the fusion. The C1/C2 cranial cervical fusion surgery is needed desperately because her spinal cord is being compressed and causing several unpleasant /life altering neurological symptoms. Amanda's surgeon believes her vagus nerve is also being compressed due to the instability. A good video explanation can be viewed here (Note: Amanda is not a candidate for prolotherapy or stem cell therapy) https://youtu.be/sIUBBCtl6aU  

A little more about Amanda...

Hi, my name is Amanda. I'm 34 years old and live in Florida. I have 3 dogs: Teddy, Buddy (my Service dog) and Smokie that I love so much! Animals have been my greatest passion in life. I live with my fiance, Rich, who you may know from the video game community. 
Rich has a cat, Sprinkles, and helps me as much as possible. Sadly I have several serious health issues that are keeping me from a decent quality of life. 

   I am currently still working full time in order to support my medical bills as well as have the much needed health insurance coverage. I will continue to work as long as possible, I have no plans on giving up (nor do I want to) but I do still have needs that i'm unable to meet on my own.  I am anticipating a 30 day leave of absence for this surgery (unpaid).

 We need to attempt to get approval from my insurance company and this could possibly be another long journey ahead of us. Since I am seeing one of the top surgeons in the world, this surgery is coming at a high cost, but I see my life as being worth every penny and do not trust anyone else with this. My doctor's office has submitted the surgery to insurance for approval and I will be required to pay my portion prior to surgery.

 **TO STAY UP TO DATE, SEE THE UPDATES AT THE BOTTOM OF THIS PAGE FOR LATEST INFO (or subscribe to my Youtube Channel) I WILL KEEP POSTING HERE AS OFTEN AS POSSIBLE, WHEN I'M NOT ABLE TO I WILL ASK MY FIANCE RICH TO DO SO.** The latest updates will always be posted on this page. Thank you.

MORE ABOUT MY MEDICAL CONDITIONS:

   I was born with a genetic condition called Ehlers Danlos Syndrome (hyper mobile type), or EDS for short. EDS is a connective tissue disorder and it affects me by my joints, skin and tissues all being overly flexible- to the point i'm constantly dislocating, partially dislocating (subluxing) or overall injuring myself. EDS tends to be an umbrella condition. This means that it is the "root" cause of many of my other problems. EDS is considered "rare" however we zebras think its just rarely diagnosed due to lack of awareness. 

 Going hand in hand with spinal cord issues I also have disk degeneration at every level of my spine. I have several disk bugles- several of which are now pressing onto my spinal cord and causing additional symptoms.  There is a possibility that my C3-C7 may need a fusion/addressing of the issues in the near future. My C5/C6 area is particularly bad.

I also have Scoliosis and Spina Bifida Occulta. I have been seeing a Neurosurgeon since February 2019. He is one of the only surgeons in the world qualified to do the type of fusion surgery that Amanda needs.


   I was diagnosed with Multiple Sclerosis in June of 2016. My MS and EDS symptoms can be very similar except for when i have an MS relapse my entire body shuts down and I cannot function, I cannot move, I typically need to be in the hospital or be on IV steroids. With my EDS flares I am in a lot more physical pain, i experience dislocations, my body does shut down too but in a different way. When my EDS flares I usually sleep for long periods of time due to overwhelming fatigue and not wanting to be awake through the pain. 

   I also have Postural Orthostatic Tachycardia syndrome or POTS. This is basically my heart rate skyrocketing, my blood pressure dropping, and my body over reacting and causing me extreme heat intolerance anytime I move. My body doesn't tolerate position changes well because my blood doesn't flow like yours does. It has a reduced volume so if i move, or stand up for example it has blood that's pooled in my lower extremities then my heart tries to pump blood crazy fast to compensate for the loss. In turn that causes the unpleasant symptoms. My cervical problems have actually worsened my POTS which my surgeon believes is due to my nerves being compressed. I'm affected so badly I have terrible nausea, dizziness, head pressure, tinnitus, and vision disturbances. 

 WHY DO I NEED ADDITIONAL FUNDING:

  Priority #1 is the fusion surgery.

I have to make trips to see an out of state Neurosurgeon. THE EXACT AMOUNT NEEDED 1 WEEK PRIOR TO SURGERY IS $8840. Surgery is booked for March 31st 2020...We will need to obtain the funds by 3/24/20, otherwise we will have to postpone.  Also the back and forth consultations and testing have been financially draining.

Staying out of state for 3 weeks (food, lodging, and then airfare back home) PLUS taking 30 days off work unpaid will also be an additional burden on our family. 


Also...
   I suffer from TMJ which requires treatment and special mouth appliances from a EDS familiar specialist. I recently learned that the cervical area is affected by the TMJ and vice versa. As of-8/8/19, I have seen the TMJ specialist, view my "updates" section for more on the $ still needed for this.

   My teeth are a mess, its embarrassing to be 34 and in this state. I have an outstanding care credit card maxed out at about $4500 just from dental related visits. I have a painful broken tooth that is infected at the moment, several teeth that need root canals, crowns, fillings, and ALL OF MY TEETH in the front row have shifted so badly that my gums are bleeding constantly. All of my teeth are very painful. It's because of my weak enamel (from having EDS) that as much as I've been trying to brush over the years I continue to struggle with dental disease. My dental insurance is maxed out and treatments for one tooth are around $5,000 (root canal+crown). I feel like i'm placing a band-aide on one at a time and just putting out small fires where I can. I was informed I need to see a periodontist to get a proper care plan and additional care will be costly. I wouldn't mind having my teeth pulled and having dentures if it comes to that, but even that is very costly. I would like to get a few of my teeth issues sorted before I spend the several thousand dollars on the TMJ splints. 

 
   If I am able to fund all of my other costs I'd love to be able to return to physical therapy and find someone in the state who is EDS knowledgeable. Insurance only covers 20 visits a year with a $45 co pay! It's typically recommended you go to PT 3-5x's a week so insurance is not helpful when it comes to PT. Out of pocket PT usually runs around $75 a visit. Example: The out of network and specialty trained therapist i'd like to see in Rhode Island has a $750 consultation fee for 4 hours which is not covered by insurance. There would also be added costs for traveling but i fully believe it would be worth the trip in the knowledge i would gain.
 

IN CLOSING:
There is no cure for any of my conditions but there is treatment. My list of issues seems to grow and so do the mounting medical bills. The most recent request for help with my surgery is a great one, and honestly I feel like I'm not sure if we will ever meet this goal, but I know I have to try because my life is worth fighting for. I certainly appreciate every single penny and well wish that every one of you have sent me! Thank you all so much from the bottom of my heart!

There are so many of us out there with worthy causes and I'm the last person to ever want to ask for help. The fact that I'm asking though means that I really need it or I'd never put myself through this because I was raised to be proud and work hard for everything.

I'm so stubborn and I work really hard every day despite my physical limitations.  I give 100% of whatever energy I have to my job (and have to have several accommodations in place just to make it). After work there's not much left to me anymore.  I can't drive for very long and I'm unable to stop and go to most stores by myself. To those who suggest I give up and go on disability don't understand that #1, it's not that easy, and #2, that's not fair. I am still fighting!


40262922_1561678827587320_r.jpegPictured above is my service dog, Buddy- and a glimpse of my very heavy and clumsy DRIVE wheelchair. The wheelchair weighs in at 40lbs and is very difficult to transport. I am unable to self propel more than a couple of feet. Insurance has denied my claims for a custom lightweight wheelchair which a prescription was written my my neurologist. I benefit from using a wheelchair due to my inability to feel my legs most of the time, weakness in my legs, pain in my joints (suffer from dislocations due to my EDS), my heart condition POTS which causes me to become dizzy and feel faint, and fatigue from my MS and other conditions.

Note: I was able to afford a "newer" used Tilite brand chair from eBay with the first round of donations sent from this gofundme page in 2019. See my updates tab to learn more about that. I will likely need another new chair in 2020 as this chair is too heavy for me to lift by myself as well but is improved from the Drive chair. 


40262922_1561678565645883_r.jpegPictured above are my silver ring splints. I had these custom ordered by Mayo Clnic in Jacksonville to help support my fingers from "swan necking" and dislocating. They were billed, and denied by insurance and I was sent a bill over $1200. It took me over 2 years to pay them off.


Picture below, April 2019 - Infusing IV Steroids, unable to take time off work despite feeling awful I infused while at work and at home. Steroids are apart of my treatment for my MS flares/relapses. In addition to Steroid treatments I also take a very expensive drug called Tecfidera to try and reduce/prevent relapses. 

40262922_1561678312632670_r.jpeg

Pictured below, one of my more "dramatic" pics but it perfectly depicts how I feel on a daily basis even if i don't always "look" it. Sure i'm able to slap some makeup on and manage to drag myself out of bed, but most days i feel like how i look in this picture. On that particular occasion I was in the hospital for my MS relapse in 2016 and was paralyzed from the waist down.  

40262922_1561678682704231_r.jpeg


If you've read all of this then thank you for your time.

God bless. 

Amanda, Rich and Family

Donations ()

  • Dan Edmunds 
    • $100 
    • 27 d
  • Anonymous 
    • $20 
    • 1 mo
  • jacob fogarty 
    • $5 
    • 1 mo
  • Darbi Williams 
    • $50 
    • 1 mo
  • Sam Webb 
    • $25 
    • 1 mo
See all

Organizer

Amanda Mroz 
Organizer
Altamonte Springs, FL
  • #1 fundraising platform

    People have raised more money on GoFundMe than anywhere else. Learn more

  • GoFundMe Guarantee

    In the rare case that something isn’t right, we will refund your donation. Learn more

  • Expert advice, 24/7

    Contact us with your questions and we’ll answer, day or night. Learn more