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Hi there, I am 34 years old living in rural eastern Washington State. I had my first fusion (T2-T12) when I was 12 (2003) and during this process my lumbar curve corrected, unfused, from 35 degrees to 20 degrees. After recovery I lived my life as a normal teen, college ager, got married, settled down and had 2 kids. By that time is was 2019 when I got some full length x rays and my lumbar fusion "de-corrected" and it was now 40 degrees. In 2020 when I was 29 I had my lumbar fusion (T10-S2). After recovering from this, things went well for a few years until my back felt so heavy and my muscles would spasm from sunrise to sunset right in the area where the 2 fusions overlapped I could start to see the hardware and it was palpable through the skin. I had a revision done to this area last year at UW in Seattle and they were able to maintain all connections while trimming down the bulky amount of metal that was there.
My question is, has anyone ever developed seizures as a result or believed to be a result of their spinal fusions? When I had my first in 2003 a few years after I started having intermittent seizures. All CT, MRI, and x ray images looked clean as a whistle from head to toe. I would go either a few days in-between seizures or I would go a few years, but it was always after I had a significant fall or physical event that would set off the next "wave" of seizures to come over the next month or so.
My PCP believes that there is either, damage to some nerves where all my hardware is but it cant be seen on imaging since there is so much artifact from the metal. I recently had a 4 day EEG done in which I had one episode and the EEG was normal. That or there is metal pushing on a nerve, etc. All I have been told my whole life is that they are "psychogenic nonepileptic seizures" and that I need counseling. I am so tired of providers looking at my like I am a nut-job. Currently I have been having seizures since the beginning of June. At its peak I was having 4 a week and now its seeming to settle at 2 or so a week on average. I also struggle with being cold sensitive and when I get cold I don't shiver; instead my whole body does random jerks in my arms, legs, hands, feet, neck. Each time its like getting hit by electricity and it is so painful.
My question is, has anyone ever developed seizures as a result or believed to be a result of their spinal fusions? When I had my first in 2003 a few years after I started having intermittent seizures. All CT, MRI, and x ray images looked clean as a whistle from head to toe. I would go either a few days in-between seizures or I would go a few years, but it was always after I had a significant fall or physical event that would set off the next "wave" of seizures to come over the next month or so.
My PCP believes that there is either, damage to some nerves where all my hardware is but it cant be seen on imaging since there is so much artifact from the metal. I recently had a 4 day EEG done in which I had one episode and the EEG was normal. That or there is metal pushing on a nerve, etc. All I have been told my whole life is that they are "psychogenic nonepileptic seizures" and that I need counseling. I am so tired of providers looking at my like I am a nut-job. Currently I have been having seizures since the beginning of June. At its peak I was having 4 a week and now its seeming to settle at 2 or so a week on average. I also struggle with being cold sensitive and when I get cold I don't shiver; instead my whole body does random jerks in my arms, legs, hands, feet, neck. Each time its like getting hit by electricity and it is so painful.