Becky's Hope and Healing Journey

Hi everyone!

I should preface this by saying that if I didn't start this, other people were going to. I wanted it to be my story in my own words. I was never huge on the idea of asking for help, but many people have expressed interest in doing so and I figured this was the easiest way.

For those of you who don’t know, I have been battling headaches for quite a while where they have gotten to the point of being constant and debilitating. 2 years ago, I had had enough and it was time to figure out what was going on. My doctor has worked tirelessly to help me find the cause, ordering tests and trying different medications. Finally, last year I was diagnosed with Chiari Malformation: a serious neurological disorder where the bottom part of the brain descends out of the skull and crowds the spinal cord, putting pressure on the brain and spine, causing many debilitating symptoms.

I went from enjoying a fairly active lifestyle to having every day be a struggle to get out of bed and go to work. I have a constant pain in the back of my head that radiates into the rest of my skull. Any sort of exertion will exacerbate my symptoms, including simply coughing, sneezing, laughing, or crying. Just some of the other symptoms I feel on a daily basis include: dizziness, whole body weakness, neck pain, difficulty finding words, memory problems, ringing in my ears, swallowing difficulties, sensitivity to light, and extreme fatigue. Naturally, this has resulted in a severe decline in my well-being and my quality of life. One thing you realize when you have an illness that seriously affects your energy levels is that everything takes energy. Not just the obvious things like moving around, but simple things like thinking, making decisions and staying positive.

Despite all of this, I held on to hope for relief. I was referred to a neurologist, who then referred me to a neurosurgeon at Albany Med. The lack of awareness, education and research on Chiari made these doctors dismiss me and my symptoms, telling me that there was nothing they could do to help. I was devastated and depressed, quickly losing hope.

After doing a lot of research to advocate for myself, I found a world renowned neurosurgeon in New York City, Dr. Jeffrey Greenfield, who has dedicated his practice to understanding and helping people with Chiari Malformation. I sent him all of my medical history and MRI scans and he agreed to take on my case. Adam and I traveled down to NYC on March 4th, 2025, where we were greeted with a warm and caring doctor who validated everything that I was feeling and assured me that he could help. He would be able to perform decompression surgery in order to relieve the pressure on my brain. This surgery will involve the following:

• Craniectomy: removal of part of the sub-occipital skull
• Laminectomy of C1 vertebra: removal of the lamina (top part of the bone) from the top vertebra
• Duraplasty: opening of the dura (the outermost membrane enveloping the brain and spinal cord) and patching it so there is more room
• Cerebellar Tonsillectomy: removal/cauterization of the cerebellar tonsils

Decompression surgery is not a cure for Chiari, it is merely the only treatment available at this time to correct functional disturbances or stop the progression of damage to the central nervous system. It is not always a guarantee that it will reduce symptoms, but Dr. Greenfield is confident that 85-90% of my symptoms will be relieved with this surgery. I can finally see a light at the end of the tunnel where I could potentially get my life back…at least to the point of being able to enjoy time with my husband, family, and friends again.

Here is where a difficult part comes in. While we have wonderful health insurance, Dr. Greenfield is not in our network of coverage. We got some great news recently that the hospital itself IS in network, so everything involved with the surgery, including anesthesia, ICU stay, medication, etc. will be covered by insurance. This is a huge relief. However, the surgery itself is not covered. Many people have already told me that they want to help and I cannot be more thankful.

Living with a chronic illness means you're constantly torn between wanting to share exactly how you're feeling or simply say “I’m fine” to not sound like you’re always complaining. I hope I don't sound like I’m complaining. I just hope to be able to have some relief and to be able to live life again.