Hi everyone, my name is Janie Cavanagh and due to a major car accident in 1996, I live with chronic neck and head pain. Due to my prolonged healing process and the delay in finding the source of my pain, my spinal fluid found a new route in my neck and skull, which caused me to have IIH (Idiopathic Intracranial Hypertension). Think of it like having both high and low blood pressure, but instead of blood, it’s my cerebral spinal fluid. The pressure and headaches can be unbelievably debilitating and horrible. Thankfully, the VP shunt I had placed in my brain has helped so much, but I am still left with chronic head and neck pain. Here is a little more about my life as a fellow zebra.
5 invisible symptoms:
- Extreme Fatigue: I find myself waking up several times during the night from a recent major shoulder reconstruction surgery. The more nights in a row that this happens, the more fatigued I get.
- Chronic neck pain, spasms, and headaches.
- Upset/Nauseous stomach-I am often too fatigued to prepare anything of great nutritional value.
- Grouchiness (not always so invisible)!
- Guilt! Feeling too fatigued/lazy and missing out on so many fun things!
Four things that help manage my pain:
- Ice! My ice machine and ice packs have become my best friends!
- My love for reading -Reading allows me to “escape” to so many fun places.
- Helping Others – I try to remember that someone else always has it worse than me and I try to reflect on what I can do to help them…like getting them groceries or running errands for them.
- OPIOD Pain Medication – I know that lately OPIODS are controversial, and I absolutely hate being judged for taking them. I try to remind myself that “correct use does not equal abuse.” I was in a horrible car accident in 1996 and broke my neck and clavicle. After many fusions, surgeries, various procedures, and countless hours of discussions with my neurosurgeon and pain management doctor, we have come up with a combination of oral medications and trigger point injections that help my pain. This is no different than a diabetic or a cardiac patient working with their doctor to address their issues and medication needs. It is a shame that the media has skewed this view.
Three ways my life has changed:
- Time Management – I not only have many appointments to arrange for myself, but I have to remember to also incorporate “get ready time” and “recovery time.” When I get my trigger point (lidocaine) injections, I have to learn to pace myself and not overdo anything just because I feel so much better after the injections.
- Disability-I had to go on disability so I would not continually destroy and wear down my body. Of course, that decision came with a lot of guilt that I am still working on.
- Compassion & Empathy-My compassion and empathy skills have improved. I may not understand your exact pain, but I do know how real and exhausting it can be.
Two people who inspire you and give you hope:
- My mother has always been there for me. She has sat through so many of my surgeries, and she has helped nurse me back to health countless times. My Mother has always been there with an encouraging word and something yummy to eat.
- One of my best friends and most favorite people is my amazing friend, Gini. She inspires me every single day! She turned 100 on August 26th, 2023, lives by herself, and usually has more energy than I do. On our many trips to Walmart and running errands, she always has me in awe of her strength, courage, and sense of humor. We try and talk every day, and she always tells me, “I can’t believe how positive you are after all you’ve gone through!” She ends all of our conversations with, “I love you and take good care of my Janie.”
One Thing you want people to know:
The one main thing I want people to know is that you are your own best advocate so always speak up! My bad car accident was on January 27, 1996. At the hospital, they failed to do the correct and necessary simple
flexion/extension x-ray. The hospital only focused on my nasty clavicle fracture. For 2.5 years, I would complain to my family doctor about having horrible neck pain that radiated down my arm. That doctor continuously patronized me by saying, “Learn to relax, it’s just stress. Try a glass of wine and take a few Vicodin when the pain gets to be too much.”
But nonetheless, I persisted. I kept asking questions and changed family doctors. I found one of the best who agreed that something was wrong and referred me to a neurosurgeon. The neurosurgeon could not fit me in for 2-3 months but put an order in for a simple flexion/extension x-ray of my neck. I had it done while working my midnight shift at the Sparrow ER. I had it done on my break, went home at 8 am, turned off my phone, and went to sleep. When I awoke later, I had several messages from the neurosurgeon’s office. When I called them back, I was immediately asked if I was in a neck brace because I was told my neck was dislocated and fractured at C-4/C-5/C-6. I was told to have someone come immediately to
pick up a neck brace from their office for me that day, and that the neurosurgeon would see me at 8am the following day. At that next day appointment with the neurosurgeon, he told me about the surgery I needed immediately. His exact words which struck fear in my heart were, “You could have bent over to pick up a pencil and severed your spinal cord at any time!”
Even though I live in constant pain and set off a lot of metal detectors, I am so glad I listened to myself, persisted, and advocated for myself.