Hoping one day we each will recover
Anonymous Parent
Parental caregiver
My daughter is 18. A little over 2.5 years ago she had a concussion, no brain bleed, just a regular concussion. She was followed by a university concussion clinic, that basically did nothing. About three weeks later she developed tremors at school. She was taken to the hospital by myself and admitted. A few days later while in the hospital she started developing pain/weakness in her legs. All tests/MRIs were negative. She was given a med for her tremors and discharged basically unable to walk.
I called a well-regarded PT place and took her there. It was strange with no diagnosis, but I was scared she would get worse and didn’t know what else to do. She continued being seen here for the next two years while we were gaslit. She was asked if she was failing school and doing this to get out of school (she had a 4.0), or was she doing this for attention or in the hopes of getting drugs.
The next 2 years hardly anything changed except the names. We went to rheumatology, genetics, cardiology, and continued to see our neurologist at first every two weeks and then about once a month. He would try meds for her symptoms of headaches and tremors, but absolutely nothing was done to work up why she could not walk or for her horrific pain.
We finally got the diagnosis of FND. It has been a stigma and a pass for all doctors to just move her along the conveyor belt of medical care and do nothing else. We were so stuck. Her school rolled their eyes at her on the days she was able to come to school from the pain. She eventually had to withdraw for medical reasons and go virtually to another school and was terribly isolated.
So many well-meaning people said I should go see this person or that person, but I felt we were at a large teaching hospital in an urban city.
This past January we relented and took a friend’s advice who is brilliant and was unrelenting that we go to Rhode Island to see Dr. Pradeep Chopra who sees complex patients and patients in pain. It was not cheap. But he spent 4 hours with us as we had previously provided the films, reports.
He told us that day my daughter had tethered cord syndrome, a congenital defect. My daughter and I looked at each other like he was crazy and I had to ask, “How can you say that when no one else did?” His answer: “I look at the patient, not just the scans.” I can still hear him saying it when I close my eyes because it was all like a dream.
My daughter and I looked at each other and we both felt like we were going to faint. He had some theories about the tremors and headaches, which are not relevant here.
This past month, May 4th, my daughter had her tethered cord surgery. It is a congenital condition which worsens with age. She has had it her whole life just now becoming so bad.
Did the trauma of the concussion make it worse or was the timing of when she became symptomatic a coincidence? Not sure. I do know for a fact what made it worse was not referring her to a neurosurgeon in light of the fact she had been a preemie, had a sacral dimple, had severe issues with constipation to the point of fissures causing bleeding, loss of movement to her legs.
She is now both convalescing and going to PT three times a week. We do not know how much movement she will get back. It takes 18 to 24 months to even see where she will end up, at what new baseline. As to the FND, I feel that was ascribed to her as it was the easy way to label her and move on. It was a very grave injustice.
