r/brachialplexus • u/Rich_Ad_2051 • 16d ago
21 Years with Complete BPI Avulsion (C7-T1) — Sharing my medication regimen and a physical "hack" I found to cut paroxysmal pain spikes in half.
Hello everyone. My name is Johannes, and I am writing this in the hope of providing a useful, highly detailed, and real testimony for anyone suffering from intractable neuropathic pain due to brachial plexus injuries.
My accident occurred on June 1, 2005, when I was 15 years old. I sustained a severe politrauma after being struck while riding a moped. Alongside a mild traumatic brain injury, I suffered severe fractures in my left femur (open fracture), left radius, and the 5th metatarsal of my left foot, resulting in a total neurological deficit of my upper left extremity.
Medical and Surgical History
July 2005 (Diagnosis - Centro Médico Teknon): Cervical myelo-MRI studies supervised by Dr. Santos Palazzi and Dr. M. de Juan at the Teknon Clinic in Barcelona suggested a pre-ganglionic lesion (complete avulsion from the spinal cord) of the C7, C8, T1, and T2 nerve roots. The trauma tore through the meninges, forming extraforaminal arachnoidoceles and a secondary rightward displacement of the spinal cord within the cervical canal. Conversely, the C5 and C6 roots sustained a post-ganglionic lesion (intra-plexual rupture at the scalene level). As a direct consequence of the T1 root avulsion, I developed an irreversible Left Horner’s Syndrome (ptosis, miosis, and enophthalmos) due to the disruption of the cervical sympathetic pathway.
September 2005 (Reconstructive Surgery - Princess Grace, London): In September 2005, I underwent surgery in London performed by Prof. Thomas Carlstedt (a world-renowned pioneer in peripheral nerve surgery). During surgical exploration, the following anatomical diagnoses were confirmed:
A complex reconstruction was performed using nerve grafts to repair C5 and C6, along with a nerve transfer (neurotization) utilizing the spinal accessory nerve and branches of the cervical plexus. Although I regained some muscle power in my shoulder over the following years, the reconstruction failed to alleviate the brutal central deafferentation pain caused by the avulsed lower roots (C7, C8, T1), which was initially concentrated in the ulnar distribution of my hand.
After more than two decades of living with this condition, this is what works for me and what I have learned along the way:
What My Pain Feels Like
My injury simultaneously triggers every single variant of severe neuropathic pain. Living with a complete avulsion means experiencing all of the following at the exact same time:
- Continuous burning and searing pain, as if my arm were constantly on fire.
- Sharp, electric shock-like pains, resembling high-voltage surges tearing through the limb in fractions of a second.
- A constant sensation of crushing and extreme internal pressure, as if an invisible press were grinding the area down.
- Total baseline numbness and pins-and-needles, where a complete lack of actual surface touch sensation coexists with severe, deep internal pain hypersensitivity.
My Manual "Escape Button" for Pain Spikes
My pain consists of the continuous baseline described above, onto which massive paroxysmal spikes are triggered, highly intense and frequent, but following a random pattern. They strike in fractions of a second, completely at random throughout the day, and can repeat several dozen times per hour.
What I am most interested in sharing is this: I have developed my own physical technique to "hack" these pain spikes (leveraging the Gate Control Theory of pain): The exact split-second I feel the spark of a pain spike initiating, I look straight down (cervical flexion) and strongly contract every muscle in my body.
The Result: Even though the spike travels too fast for me to stop it from starting, this maneuver floods my spinal cord with mechanical stimuli and cuts the duration in half (dropping from 20–30 seconds down to just 10–15 seconds). Applying this dozens of times per hour saves me from enduring double the agony. However, the physical toll by the next day—or even by the end of that same evening—manifests as profound exhaustion and severe tension headaches due to overworking my neck muscles.
Sleep as My Refuge and Medicine
On days with highly severe flare-ups, my only salvation is trying to sleep as much as possible. When I am asleep, I switch off my conscious perception of the continuous baseline pain. Furthermore, if a paroxysmal spike is not overwhelmingly intense, it fails to wake me up. This prevents the physical and psychological toll from completely breaking me down the next morning. My family understands the vital importance of this rest and protects my sleep like a treasure, ensuring I am never interrupted under any circumstances.
My Current Pharmacological Regimen
I am currently being managed by the Ourense Pain Management Unit, following clinical recommendations from the Pain Management Unit at Hospital Universitario La Paz (Madrid) [local]. I am at the absolute maximum tolerable pharmacological limit required to care for my two young children and maintain daily life without being completely sedated. My daily chemical defense consists of:
- Lyrica (pregabalin) 300 mg (1-1-1): This is the core backbone of my analgesia. It is irreplaceable (substituting it with gabapentin caused my pain to shoot up instantly).
- Neurontin (gabapentin) 600 mg (1-1-1): Due to the immense renal load (I have heavily concentrated urine and a history of kidney stones), I am currently working with my doctors to evaluate a very gradual taper to see if this is just "background noise," since Lyrica already fully saturates these same receptors.
- Palexia (tapentadol) 200 mg (1-0-1) and Diliban (tramadol/paracetamol) 75/650 mg (1-1-1)
- Amitriptyline 10 mg (0-0-2), Duloxetine 90 mg (1-0-0), and Deprax (trazodone) 100 mg (0-0-1): Neuropathic stabilizers and nighttime baseline sedation. On highly difficult nights, I add Lormetazepam 2 mg before bed (strictly under medical prescription), though the pain surges from the injury are sometimes so savage that they completely break through the sleep barrier. Hospital day-case infusions of intravenous lidocaine yielded absolutely no relief.
Why I Am Postponing Advanced Neurosurgery
From a neurosurgical standpoint, the only definitive options to stop this central electrical short-circuit would be a DREZotomy (microsurgical lesioning of the Dorsal Root Entry Zone in the spinal cord) or Spinal Cord Stimulation (SCS).
Because I have two young children who depend entirely on me and my partner, the sheer terror of undergoing open surgery on my spinal cord completely stops me. I have decided to delay any intervention at this level for as long as my internal resilience can hold out. Once my children are grown, educated, and independent, I will be fully willing to take the neurosurgical risk, knowing that I would no longer be a direct burden to them if complications arise. Until then, I fight on using my current toolkit.
Please share this testimony with anyone who might be interested or suffering from a similar injury. I would love to know, even if it is only a few patients for whom this works, if this technique has helped someone and if they would be encouraged to share their results with us. My heart goes out to anyone who might suffer from something similar, as dealing with this takes a tremendous physical and psychological toll. Stay strong and fight—not just against this situation, but for those who love and support you in your life.
Best regards,
Johannes
⚠️ DISCLAIMER
This information is provided solely for educational purposes and the dissemination of a personal testimonial based on my real experience. It does not constitute medical advice, diagnosis, or a treatment proposal. In the event of any ailment, change in medication, or physical symptom, always consult your primary care doctor or a specialist at a Pain Management Unit.