Holly's Urgent Brain Surgery Fund

Holly Halstead is organizing this fundraiser.

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Hi, my name is Holly Halstead and I am currently fundraising for myself because I desperately need surgery in Rhode Island and help with travel expenses. Asking for help isn’t easy, however this mom really needs a much-needed surgery which has been scheduled for January 29, 2025. Please read my journey below and open your heart to help if you are able.

I have a rare brain condition called Arnold Chiari Malformation Type 1.5 The brain sits too low in the skull and rests in the opening of the spinal canal. When this happens, it restricts the flow of cerebrospinal fluid between the head and the spinal cord. I have what is known as a 1.5 because instead of just my cerebellum herniating, my brain stem is also being pushed down into my spinal canal and it is flattened. There is no cure for Chiari Malformation, and it is a progressive disease. As a result, it can cause multiple neurological issues.

For me, it started before the pandemic with numbness in my hands and feet, along with the worst migraines I have ever experienced in my life. I started experiencing occipital headaches with pressure, eye pain, neck pain, nausea, back pain, arm and leg pain. It has progressed over the years and at one point I couldn’t walk without assistance and had to utilize a wheelchair. I can barely walk without feeling intense pain or heaviness. Often times my legs will go out from under me, and I’ve had what is referred to as Chiari Drop Attacks. I’m on nerve medication to help control the numbness and tingling, which also gives me use of my legs, but I still use assistive devices in and out of the bed and a cane on my bad days. Sometimes, I need human assistance too.

In 2018, my neuropathy kicked in and I was also diagnosed with a neurogenic bladder. This means I have urinary retention and I must use a catheter four times a day. I also started having issues with my heart.

I suffer from Bradycardia, (a low heartbeat) and low blood pressure. I’m always getting dizzy, and I almost pass out if I bend over and stand up. I have a type of Dysautonomia or Autonomic Nervous System Dysfunction. It affects my bladder, digestion, body temperature, heart rate and blood pressure. It is believed to be caused by my flattened medulla oblongata (brain stem). There is also evidence to suggest it is causing my right hearing loss along with my pulsatile tinnitus, balance issues, etc.

For years now I have experienced debilitating Occipital Headaches that are triggered by bending, coughing, and sneezing. I was diagnosed with Bilateral Occipital Neuralgia along with Trigeminal Neuralgia and I have been in pain management for intractable pain. I received Bilateral Greater Occipital Nerve Blocks (all failed) and trigger point injections and dry needling in my neck and back.

These are just some of the daily symptoms I live with. Ultimately it was discovered that I have a Chiari Malformation. Surgery is the only option and it’s imperative. Due to the herniation, my cerebrospinal fluid does not have any room to flow. This is serious but I’m confident in my neurosurgeon.

I would not wish this on anyone. I am so fortunate that I have advocated for myself and caught it before it caused worse damage than it may already have. I was finally able to get an MRI which revealed my diagnosis. However, I had to go through five neurosurgeons to accurately diagnosis me and arm me with the courage to ask the right questions and not settle with the first one that offered decompression surgery. Surgical errors occur often by non-expert surgeons and the damage can be permanent, so I sought out an expert in my condition and I do not feel comfortable with anyone else performing this invasive brain surgery.

You see Chiari rarely plays alone or nicely with it’s related and underlying conditions like Ehlers-Danlos Syndrome which complicates an already complicated case. Chiari Decompression Surgery requires removing part of your occipital bone, spine and creating an opening for the spinal fluids to flow and may require cauterizing part of the brain. It’s a four-hour surgery give or take with a stay in ICU and then an extremely long recovery. This is a much needed, albeit painful surgery and is not without risks or complications. But I need it, I need it so I can hopefully get some of my life back, and have a much better, and somewhat, pain or symptom free life! That is the ultimate plan, to have better days so I can be a more involved mom to my child.

Now as if that isn’t rare enough, I have occult Tethered Cord as well but the surgeon that will be performing my Decompression will also be the one to treat my tethered cord should surgery be needed in the future. But restoring cerebrospinal fluid flow is imperative now first and foremost!

I am really hopeful that I will again have the chance to live more pain-free days and regain mobility and cognitive function.

I will be headed to Brown University in Rhode Island for 12 days. My cognitive evaluations and lab work will be done, then surgery, then recovery for 10 days after, my post-op appointment and then we can make the drive (not flight) back home.

Since the surgery is much needed and last minute, I am unable to pay for all the costs. It’s been a long year of specialist appointments, and other surgeries. I am unable to pay this expense alone. I am fundraising to cover the out-of-pocket medical expenses.

Anything you can donate to help make this a reality would be a great blessing. I also appreciate the prayers and am so thankful for the support from everyone. If you are unable to contribute financially, I ask that you please share this and pray for me and others who suffer from this rare condition.