Hello, everyone. Welcome to my CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate all your support and kind words of hope and encouragement. Thank you so much for visiting.
Ok, here’s what’s going on. As you may know, I’ve had some chronic health problems for most of my life. My symptoms have fluctuated and overlapped, with different challenges arising and being navigated through over time.
One of these long-term symptoms has been a kind of dizziness that can crop up whenever I move. For example, I’ve always gotten dizzy turning around to look out the rear window when I parallel park my car. I get dizzy standing up, bending down, rotating my torso, moving my head in any direction. This dizziness is often accompanied by a pain in my brain and/or spinal cord that feels like a bulging, squeezing, or tugging/dragging sensation. Sometimes I also experience pre-syncope or even a brief loss of consciousness. My skin tingles, my ears whoosh, and my vision goes dark and sparkly. I have to get to the floor or brace myself against a wall. I often reach my arms and legs out like a giant letter X. It helps me get steady until the feeling passes.
I’ve had these feelings for decades - sometimes more often, sometimes less. It can happen dozens of times in a day. Or not so much. It varies.
Things were gradually getting worse between summer 2019 and winter of 2020. I had missed a couple of cranial osteopathic treatments in January and February 2020, and I was looking forward to having my treatment in March. Then came lockdown, and I didn’t have any bodywork until August of 2020 when I finally ventured out into the world of not-socially-distanced contact to get my osteopathic treatments. I need treatments every 2 weeks to address chronic musculoskeletal and nerve pain as well as somatic dysfunction.
In the time that I had not had any treatments, the severity of my dizziness increased to an alarming degree. I’d begun to experience dizziness (and brain pain) standing still and lying down. I got dizzy doing things that made no sense to cause dizziness. One time I reached my arm straight out in front of me to put the salt grinder on the shelf, and I got dizzy. Has that ever happened to you? It had never happened to me before, and I was getting very concerned. I was really struggling.
When I finally got in to see my cranial osteopath at Rowan NeuroMusculoskeletal Institute, she was also very concerned. I had no cranial rhythm, and it was very difficult for her to encourage the rhythm to restart itself. She kept asking when I got hit in the head. I hadn’t. My head shouldn’t feel the way it felt.
What’s cranial rhythm? Cranial rhythm is a manually detectable movement involving the bones of the skull and the flux of cerebrospinal fluid that alternately washes over the brain and down the spinal cord, then back up to the brain. The bones of our craniums blossom open like a flower, and close back up again. Imagine this is like a pumping action: expansion, contraction; extension, flexion… repeating at a regular rhythm like our respirations or heart beats. It’s all very subtle, but vitally important to our somatic functioning and the balance of our nervous systems.
My cranial rhythm had stopped. I felt like garbage. I was dizzy all the time. My brain and spinal cord hurt when I moved. Things that were already difficult for me to do got even harder. Bathing, cooking, laundry, errands and buying groceries, everything became even more of a challenge. They still are. Forget about socializing, forget about doing things for the fun of it. I’ve been scraping by. You won’t know that if you talk to me - I have a pretty amazing sense of humor and a gracious acceptance of a lifetime of difficulties that has developed a sort of grit in me. But that doesn’t make the problems go away, and my doctor insisted that I find out what’s causing my dizziness - “and don’t stop until you find out.”
Next I had a strategizing Telehealth appointment with my primary care doctor. We mapped out a plan for exploring the possible sources of the problem, and we put together a list of specialists to consult: neurologist, cardiologist, vestibular therapist, sleep specialist; and I started getting all kinds of diagnostic testing.
In October 2020, something showed up on an MRI of my brain, and I had to repeat the study with contrast. An MRI with contrast and an MRA confirmed a posterior fossa meningioma. These are usually benign, and I was told to sit back, relax, and measure it again in 12 months. I couldn’t wait. When I repeated the MRI with contrast in September 2021, the meningioma had grown 2mm: too fast. I was told to consult a neurosurgeon.
I went to Jefferson Hospital for Neuroscience and was presented with my options: surgery within 6 months, or radiation within 8 months. Radiation comes with more risks and no chance to take a sample of cells in order to study and categorize the meningioma - it also won’t make it any smaller - so I’ve opted to have surgery.
The meninges are the 3 layers of membrane that make a waterproof sac which contains that cerebrospinal fluid which surrounds and protects the brain and spinal cord. In order to access the tumor, the neurosurgeon will cut a hole about the size of a quarter in my right temporal bone behind and slightly below my ear. He’ll snip the meninges open with scissors (because they’re so tough), and he’ll remove the tumor. Once they have a piece of the meningioma excised, they’ll do a histology and study the tissue under a microscope. Best case scenario: the tumor is benign. If it’s atypical or malignant, I will get a precision dose of radiation to the surgical site. Atypical meningiomas are benign but can grow back, malignant meningiomas are cancerous. Both atypical and malignant meningiomas can spread to other areas of the Central Nervous System through the cerebrospinal fluid, or they can invade surrounding tissue such as brain and bone. Malignant meningiomas can spread to other areas of the body. Once the meningioma is removed, (and radiation administered if necessary), the surgeon will repair the meninges with an artificial membrane, and cover the hole in my temporal bone with a titanium plate. Easy peasy. It should only take 5-6 hours. However, it could take up to 12-13 hours if the tumor has tangled around either of the branches of cranial nerves it is situated between. These nerves are responsible for hearing, balance, swallowing, feeling and moving my face. You can see why it would be more complicated if the tumor has spread into these areas.
But here’s the kicker: the surgery is not intended to help me feel less dizzy. Oh no no no no. We found this meningioma incidentally while we were trying to discover the source of the dizziness. I’ve had a few other diagnoses in the past year, and I’m awaiting confirmation of 2-3 more. Several of my issues are caused by rare disorders, and it’s possible that having these rare disorders may complicate the surgery. I think we can save those details for another post. However, there is a chance that I could get lucky, and removing the meningioma will improve or eliminate some of my symptoms. But according to several neurologists and neurosurgeons, the meningioma is too small and too new to be the cause of my problems which have gone on for decades. We are very fortunate to have found it before it’s able to cause more problems for me in the future.
My surgery is scheduled for Tuesday, February 1, 2022. I will keep you updated and fill you in as we go along.
Thank you for reading. Thank you for caring. Thank you for all of your love and support. Thank you for your words of encouragement and understanding. Thank you for your offers to help me - and Steve - while I’m recovering. I sincerely appreciate you ♥️♥️♥️