Continued Support For Ivy with Chiari Malformation

Hi everyone,

I’m asking for help again to help me fund basic expenses while struggling with my Chiari Malformation. Thank you for the help on my fundraiser back in November - I truly do not know what I would have done without it and I feel very loved. Thank you.

When I spoke to my neurosurgeon back in November he had said I would likely have been able to do surgery this January. When I saw him again last month he said he’s cautious to do surgery because he’s worried the severity of symptoms could be from another cause in addition to the Chiari. My next appointment is in March to discuss testing results and I hope to be moving forward with surgery.

I’ve been struggling very heavily with Chiari Malformation symptoms since August. I was diagnosed with the condition when I was sixteen after it was found in my MRI for a concussion. At that time the opening at the base of my skull was 8mm, and since my most recent scans in September it's been at 11mm. A normal brain is under 5mm. The base of my brain, the cerebral tonsils, are dipping too low, and there’s pressure on it from my skull. The only real solution to a symptomatic Chiari Malformation is a decompression surgery, which entails removing a piece of my skull to create more space for my brain and relieve the pressure. There’s generally a month long recovery period and hopefully it would relieve some if not all symptoms.

I haven’t been able to work since early September due to debilitating balance issues and the headaches at the base of my skull, along with extreme fatigue, periodic leg numbness, blurry vision, shaking hands, brain fog, and more. I have a very difficult time standing or even sitting upright for extended periods of time before feeling like I’m going to pass out. I stumble and feel consistently off balance to the point that it’s hard to be standing even long enough to shower. I spend most of every day in bed, and have a hard time trying to do something as simple as prepare a meal without falling. It’s hard to be sitting upright because it makes my head hurt, and my body is sore from laying down constantly. Painkillers don’t do much for the neck/headache pains and it’s been all around miserable.

I’ve even been trying to push myself physically, to try moving my body to build up ability to be more active, but when it feels like I’ve gotten one step ahead it puts me two steps back. The few times I’ve been able to try going out to do something I’ve had to use a wheelchair and while it helps with the worry of falling over, my head still hurts from being upright. My legs still feel numb and hurt. I’m still beyond exhausted. The only reprieve I’ve had mentally from the stress is community and spending time with my friends and loved ones and even then I can’t do anything other than sit or lay down and have often had to excuse myself to cry about the pain my headaches are causing.

The main issue I’ve been having is that my neurosurgeon isn’t sure all of this is being caused solely by Chiari due to the severity of the symptoms and has been postponing surgery to try to get as much testing done as possible. I appreciate the diligence, but I’ve been miserable these last 6 months and just want to have my life back. I’m hoping to go through with the brain surgery even if it only fixes half of it. I’ve been seeing doctors consistently throughout the last 6 months with very little luck.

I’ve seen a neurologist, did multiple MRIs, seen two separate neurosurgeons, went to a traumatic brain injury rehab clinic, saw a physical therapist, been doing blood tests consistently, doing monthly check ups with my primary care doctor, did a full autonomic testing clinic to check for POTS, and for the last month have been on a medication intended for Alzheimer’s. I also did a full physical exam with no luck and am going to do nerve conduction testing. Going through all of this has been taking a toll on my mental health too, and I’ve been struggling with depression again as a result. All of the outside testing I’ve been doing has come up with no other possible answers. My neurosurgeon, one of the very few who specialize in Chiari, is taking my case to another Chiari surgeon to get a better read on it. I’ve been talking to my primary care doctor to see if there’s literally any other testing I can have done before I see the neurosurgeon again in March. I've done every test they've asked for and more. I’m so tired of all of this, I want to be better.

I genuinely thought all of this would be done by now and to be able to return to work soon but the wait time between appointments has made it impossible. I’m asking for help again to continue being able to pay for my bare minimum life expenses, like my rent, bills, and groceries for the next few months. I’ve tried all my options for any form of financial aid; I applied for paid leave from the state and was declined for being just shy of having enough hours of work to qualify from when I had to stop, despite having worked there for two years, it took them 3 months to tell me. I can’t apply for federal disability because the condition must be permanent (hopefully this is not) and it takes 6 months to process. I’ve even spoken with a social worker and was told my only option would be financial aid for the constantly building medical expenses because I have no source of income. It all has felt very hopeless throughout this entire process.

If I’m seeing the neurosurgeon again in March, then hopefully surgery would be in April, and I could be recovering through May. I’m asking for a little more this time to be prepared for any setbacks with recovery (if a second surgery is needed) and if anything is postponed again. Please know the donations are for these basic expenses only and that’s what I plan to do again. I don’t know what I would have done the first time and I’m so so sorry to ask for help again. I know everyone is struggling right now, everything is difficult for everyone. I don’t know what else to do.

Thank you so much for your time and for anything you can offer. I appreciate it more than you can believe.