I was shocked, and then so happy to read this news article when I sat down at the computer today. A 33-yr old woman, Jean Sharon Abbott, was diagnosed with spastic diplegia, a form of cerebral palsy at 4 years old. She only saw one neurologist, because he was the best in the area, according to other physicians. (I heard the same thing about the neurosurgeon who screwed up my MVD brain surgery in 2013, but that’s another story.)
After a pain pump implanted in her body to help lessen the pain of cerebral palsy over medicated her, a doctor who specialized in the pain pumps referred her to another neurologist. After viewing her MRI and CAT scans that showed no sign of the damage to white matter in the brain, typical for those with cerebral palsy, and observing her gait and symptoms, the neurologist shocked Abbott by saying, with a huge smile, she did not believe she had cerebral palsy. Abbott did not believe her at first. Of course she has cerebral palsy. She has spent three decades with the symptoms and limitations of CP. She had a highly regarded neurologist that had diagnosed her disability and had treated her for it since she was four. The new neurologist explained these are also signs of dopa-responsive dystonia (DRD), which is characterized by muscle weakness, spasms, tremors- similar to CP. It could be largely corrected by one medication. Abbott thought the new doctor must be crazy- she had spent a lifetime suffering the effects of what she was told was cerebral palsy, and there was no reason to believe otherwise. After talking with her husband, Abbott decided to try the medication for DRD, and within DAYS she could stand alone and walk without the characteristic gait of CP. This answered why the MRI & CAT scans of her brain showed no signs of damage, as is seen with those who have CP. She had undergone massive surgeries, a full body cast and nearly three decades suffering from the wrong diagnoses. Now she can live a life she never thought was possible- picking up and playing with her three children, and hiking 10 miles- all after a life where walking across a room was painful, awkward and likely to result in a fall.
In the link to the article below, Abbott explains she has limited video of her walking and otherwise showing the effects of what she was told was CP (I can absolutely relate- I hate seeing pictures where my knees are facing together, my left arm hanging limply in front of me, as it does when I am exhausted. I despise seeing photos of myself- seeing only the flaws that have been pointed out to me over the years from my mild cerebral palsy.) Despite this, she made a bold, brave and compassionate decision to lessen and then not take her only medication for DRD for a few days, to show others by video, who may or may not be misdiagnosed with cerebral palsy, and who have never before heard of dopa-responsive dystonia (one of many different types of dystonia), what she looked like- like a woman with cerebral palsy- prior to receiving the correct diagnosis. Within a few days her walk across her kitchen and back goes from fast and confident to a shuffling, awkward gait I recognize so well as my own, while holding onto the counters in the kitchen for balance. Only one day later, back on her medication for DRD, she records a video as she is once again standing without aid, and can briskly walk, without the, as she puts it, “Butt sticking out while I walk” stance that characterizes my walking as well.
I am amazed and so happy for Abbott and her family! She is living a life with much less pain, and has the mobility that was unavailable to her for three decades. One of the most surprising things to me? She harbors no ill will, hostility or resentment towards the neurologist who misdiagnosed her and treated her for over 30 years as a patient with cerebral palsy. Perhaps it was an honest mistake. Yet, there should have been some doubt, or at least a second opinion given when her 4-year old brain as seen on the MRI and CAT scan showed no signs of damage from CP. And yet.
I think back to how challenging it was, especially for my mother, and also my father, grandmother, and several other relatives to care for me when I was young, and I only have mild cerebral palsy. There were near-constant doctor appointments, ear infections, allergies, physical therapy at the doctor’s office and at home that my mom tirelessly drove me back and forth to and monitored. She assisted me, with loving kindness, but also tough love, through the many painful physical therapy exercises I was required to do each day. I hated them all. Each hurt my body in a different way, and made apparent my weaknesses, but I was told they were mandatory for keeping my limitations from cerebral palsy under control.
One of my clearest memories from this time of always being a child who was limited in my movements and balance, and often ill (this due primarily to also being born 4 months premature) was one appointment where I laid on an exam table, wearing a tank top and undies, surrounded by specialists and physicians who looked at me like a curiosity from the Muttter Museuem. I was around 7 years old. This is when I first felt the hot rush of red-hot shame of being different and disabled. None of the doctors spoke to me or made eye contact. None gave any thought to how terrifying it was to lay on the table, all my imperfections exposed, while they spoke amongst themselves about my various physical deformities. “Notice her knees, hips, curvature of spine.”
There would be many, many more instances like this – awful bullies, ignorant strangers asking, without thought, “What the hell is wrong with your legs?” When I became a young adult I spent a great deal of time getting many (free) tattoos- a perk of my first husband being best friend’s with an amazing tattoo artist. I cared little for what the tattoos were, though I’ve always enjoyed Bettie Page and the other pin-up girls that adorn my arms and legs. I got several piercings, dyed my hair as many colors as possible, alternated between a truly awful bleached blonde mohawk and long, black hair like Morticia on The Addams Family, with perfectly formed Bettie Page-like bangs, to in order to draw attention away from my legs and how I walked. It did not always work. I know full well I was not the only child, teen or adult bullied and mocked for my physical differences. The words, the shared glances between doctors and other people sear themselves into your memory- whether bullying and abuse was minimal or physical and inescapable.
Abbott’s story is all the more poignant for me, now, as I begin the long fight against the neurosurgeon who misdiagnosed me with Geniculate Neuralgia in 2013 and performed a cranial nerve brain surgery, incorrectly, not following protocol. Only last October, with the help of many wonderful people donating to my GoFundMe, my parents lending me a large amount of money, and my best friend from Cleveland, who suffers from many severe health problems and autoimmune disease, accompanied me to Pittsburgh, where one of the top two neurosurgeons in the country for Geniculate Neuralgia practices, did I learn, in 5 minutes that I had been misdiagnosed. I was scheduled to have this neurosurgeon perform a second MVD- correctly this time around- to ease the constant, ever present, wretched knife stabbing pain in my right ear. Instead he took a quick glance at the MRI image of my brain, stated unequivocally that I was misdiagnosed, and that the surgery I am still recovering from, where the neurosurgeon here hacked open my skull, “massaged my nerves” and screwed my head back together, never should have been done. It was done completely wrong. I knew that almost immediately following the surgery. To learn it was a lie though, and one that he in all likelihood knew he lied about (based on how quickly he ditched me as a patient after the failed brain surgery and sent me to what I learned was a pill mill in town, where doctors send troublesome patients to get hooked on massive, late-stage-cancer levels of Methadone.) Addicted patients do not pursue doctors that screwed up their surgeries.
I do not know that I could be as forgiving as Abbott is to her first neurologist. I understand her reasoning. She is delighted to have a new life, new abilities, a whole world open to explore- by walking, instead of being carried or pushed in a wheelchair. She harbors no ill will, because she is too happy that her future holds a life not limited by cerebral palsy. I am so happy for her. I’m so glad someone took the time to question her diagnosis. When I received the news that I was not going to receive the second surgery last October that would likely end my pain from what I was told was Geniculate Neuralgia, I wept. I am still fighting the overwhelming sadness and all the steps necessary to begin a long fight against the neurosurgeon who misdiagnosed me. Perhaps I could be forgiving if there was an alternative answer or treatment in my case, with the second opinion, instead of just no, the diagnosis was wrong, I don’t know what you have, best of luck dealing with the pain on your own. There was no happy resolution with the second opinion- only confirmation that I had, as suspected, been duped and had a neurosurgeon groping around my brain with no idea as to what he was doing. I am thankful he did not do more damage. I can’t forgive him. I won’t. To do so would be to live with a big what if. “What if he screws up the surgery on someone else, worse than he did to me? What if it is a child? A mother or father? Anyone.” No one else deserves to have their life derailed by not only a misdiagnosis, but a hack job surgery involving the brain. I wish I could forgive and forget. Anger is a poison I dislike having coursing through my blood.
I am so glad that Abbott can, and she is well, and faces a future that is much brighter and full of movement, joy, love, adventure. For now, mine is not. Mine is focused on fighting, and I hate to fight. If I don’t, though, I will not be able to live with the what if, if someone else is harmed as I was by the neurosurgeon who so carelessly treats his patients. I will fight for myself, and the countless others told they have this disorder when they do not. Who knows? Maybe at some point a doctor will discover that one pill for my pain, and I too will record a video showing me living without the constant pain. I doubt it, though. It is enough for me to share and delight in the story that this woman, mother and wife now has her life, pain free, to live and enjoy. It is enough to share the miracle that she has had her life, a better life, returned to her. Read her story, and watch her videos below.
The progression of Jean Sharon Abbott’s life, from a massive surgery as a child resulting in being in a full body cast for one month, then severely limited mobility from the balance, gait, muscle spasms, tension and pain from cerebral palsy, but also DRD if untreated. Last- an updated photo of Abbott standing easily, balanced, pain-free with her beautiful family. What an amazing change- all from a misdiagnosis, and then, ultimately the correct diagnosis and the ability to walk after a lifetime of limitations.