Spasticity and Pain Management After Neurosurgery - Neurosurgery

Stiff Person Syndrome

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Dear Dr.
Chang Jun-Wei,
I am a patient who has consulted at multiple hospitals and undergone a series of tests including blood biochemistry, 24-hour urine analysis, and peripheral nerve examinations, which included sensory and motor evoked potentials, sensory and motor nerve conduction studies, autonomic nervous system assessments, and F-wave testing.
I also underwent anti-nuclear antibody screening, rheumatoid factor testing via immunoturbidimetry, erythrocyte sedimentation rate measurement, and Fabry disease screening for females.
Additionally, I had an electroencephalogram and used a reflex hammer to check my reflexes.

The results indicated possible errors in muscle tone, abnormal porphyrins in urine, elevated sympathetic nervous activity, and reduced parasympathetic nervous activity, while other results appeared normal.
The physician prescribed a multitude of medications including morphine, high-dose analgesics, anti-inflammatory drugs, muscle relaxants, arthritis medications, neuropathic agents, anxiolytics, sleep aids, antispasmodics, and anticonvulsants (such as Lyrica, Gabapentin, Pregabalin, Stanozolol, Duloxetine, Rifampicin, Dexamethasone, Esomeprazole, Baclofen, Urokinase, and Dexamethasone).
I also purchased TKTX topical anesthetic, Salonpas, and Yunnan Baiyao on my own.
Currently, my body's muscles, joints, tendons, and nerves continue to experience spastic rigidity, and the remaining soft tissues are deteriorating, making it difficult to cope.
Despite using all prescribed medications, including morphine and high-dose analgesics, I find myself at a loss, with no further options available.
I have consulted various departments including neurology, rehabilitation, pain management, psychiatry at National Taiwan University Hospital, and the neurology department at the Lin Sen branch of the United Hospital, as well as the neurosurgery departments at Veterans General Hospital and Chang Gung Memorial Hospital.
I have raised concerns about potential medical negligence during the surgery for the intraventricular meningioma at National Taiwan University Hospital, which may have led to my limbs becoming spastically rigid, causing severe pain, tightness, rigidity, and cramping, akin to paralysis.
The left hemisphere of my brain is severely compromised, encroaching upon the right hemisphere, with less than one centimeter remaining.
There seems to be damage to the brainstem, and I am experiencing facial joint dysfunction and nerve pain in my teeth, making it difficult to consume anything other than liquid food.
Dr.
Wei, the director of the neurosurgery department and deputy director of the cancer center at Chang Gung Hospital, who also leads the brain tumor team, has stated that central nervous system injuries can indeed affect peripheral nerves, necessitating long-term rehabilitation and pain management.
Although Dr.
Wang from National Taiwan University Hospital initially considered it a conversion disorder, a recent diagnostic certificate has classified my condition as Category VII [b735.2], with an ICD diagnosis of D49.6 [05], confirming that I am currently wheelchair-bound and unable to walk, requiring assistance for daily activities and lacking work capability.
Dr.
Chen from the neurology department at the Lin Sen branch of the United Hospital has confirmed that severe brain injuries can lead to spastic rigidity in the limbs due to damage to the brain and brainstem.
Dr.
Pan from Veterans General Hospital and Chang Gung Memorial Hospital has acknowledged the extrapyramidal symptoms, aligning with Dr.
Chen's assessment.
Dr.
Lin, who practices both Western and traditional Chinese medicine, recognizes this as pain due to wind, cold, dampness, and heat, affecting the soft tissues of muscles, joints, tendons, and nerves.
Regarding the spastic rigidity and pain-induced paralysis resulting from the surgery for the intraventricular meningioma, I would like to inquire if there are higher doses of anesthetic analgesics (40%) or antispasmodics available that could temporarily alleviate the spastic rigidity, aside from the medications mentioned above.
Additionally, is there a possibility for the injured central nervous system to repair itself and improve over time, beyond the limited mobility of walking or using the restroom, which I consider rehabilitation?
Thank you for your guidance.

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Xiao Ying, 30~39 year old female. Ask Date: 2019/05/14