The life of a chronic pain patient is challenging. The primary challenge is usually physical. Secondary challenges involving one’s psychological well- being and often financial distress can take their toll. I finally made a trip to Ohio to see the jaw specialist for Ehlers-Danlos, in an effort to attempt to understand why I am not able to open my mouth very wide and chew without immediately slipping my jaw out of position. This started following my second neck fusion. However, due to this fusion, I am so much better than I have been in years – now able to walk, read and even drive, all with limits.
Upon examination and X-rays, it was determined the jaw was actually severely dislocated. I always thought all these issues were only the result of the fusion of the neck, thus something I would have to live with. I was fortunate to be a candidate for a mouth guard that is working to put the jaw into the correct position, with hopes that in time, it will begin to hold in place. My hope is that if successful, this device will make pureed foods a thing of the past.
But those x-rays also showed something I was not even contemplating. After just a year and a half from fusion surgery, it is starting to put too much pressure below C-4, creating a gap that should not be there. I listened and looked as the doctor pointed this out to me, but I was not able to talk about it with the doctor that first day. I knew in my heart what he was suggesting to me………and I was not prepared to process this new information.
On the second day, I was able to have that needed discussion with the doctor. Of course, this ability to speak about this issue came after that first day going back to the hotel crying, feeling sorry for myself and feeling that sensation of being scared of my body creeping back into my psyche. After getting that out of my system and I was more prepared to hear the truth, I came to the office the next day for my second appointment with a list of questions. So, I asked him, “What were you trying to tell me yesterday about that X-ray?” He shared that the gap indicated the fusion was going, in time, to eventually fail again requiring fusion even farther down the neck, within three years or less. I sensed this was the news that day before but I just could not cope with hearing any more.
So, after having about nine catatonic episodes before the second fusion could get booked, here we might go again. Am I back to being that walking time bomb again? Unfortunately, those events literally created PTSD for my husband who had to cope with watching those episodes. Those episodes caused us to face reality, sell our farm, downsize and move into a smaller home attached to one of our four sons so my husband would have help right through the door connecting our homes. It was a dramatic but realistic change needed for safety and support with these medical issues.
I have never been better in fourteen years. How am I supposed to handle being a walking time bomb again? I have endured twenty-four surgeries, four years in a wheelchair, not being able to read or drive for years to regaining so much within a few months of healing from the fusion. It is an overwhelming feeling that just takes over your emotions to even think about possibly having to once again experience all those losses when I actually have been able to heal and gain so much with my daily PT, my husband’s full support, diet, supplements, and exercise.
So now what? Do I allow myself to be drowned by this news or take the opposite attitude that I can beat this, stay strong and never need that fusion? I realized I just won’t allow myself to be dominated by fear and anxiety created by the unknown. I cannot sit on the sidelines of life by the fear of my life falling. I’ve lived that life while waiting for help with the last fusion, not sure I would be lucky to survive, waiting for that surgery date. I just can’t repeat that horror, wondering if and when this might happen again. Instead, I will try to choose living life to the fullest and do all I can to make this magic I have been experiencing continue on. I know my mind and emotions will slip on my tougher days, but I just need to live with hope and not fright. If I don’t win this next challenge and surgery becomes necessary, then I will have no choice but to cope with whatever it brings on. Meanwhile, I will bask in what I have regained with hopes it is mine to keep.
I often wonder if being made aware of possibilities such as I might face is a necessary and good practice. Is it worth even knowing what might be next or are we better off living without the possible next reality? At least knowing gives me every chance to do all I can to try to prevent or at least ease the possible next deterioration challenge that comes living with Ehlers-Danlos Syndrome.
May life be kind to you,
Ellen Lenox Smith
Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.