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My old friend had a stroke and developed mild Trigeminal Neuralgia. He researched and shared some helpful info with me below.

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Info from Grok

 

Key Points

  • Research suggests perispinal etanercept (PSE) may help with chronic post-stroke symptoms like pain, which could apply to your condition.

  • It seems likely that PSE could address your trigeminal neuralgia and Wallenberg syndrome symptoms, given its use for similar cases.

  • The evidence leans toward PSE being effective for pain and neurological issues even years after a stroke, like your case from October 2020.

  • Note: PSE is an off-label treatment, and its benefits can vary; consult a medical professional for personalized advice.


Introduction

Perispinal etanercept (PSE) is an innovative treatment developed for chronic post-stroke neurological dysfunction, potentially offering relief for conditions like yours. Given your medullary stroke in October 2020 resulting in Wallenberg syndrome and trigeminal neuralgia, this treatment might be applicable. Below, we explore how PSE could help, its current status, and what steps you should take next.

What is Perispinal Etanercept?

PSE involves injecting etanercept, a drug typically used for conditions like rheumatoid arthritis, near the spine to target brain inflammation. This method, pioneered by Dr. Edward Tobinick in Boca Raton, Florida, aims to reduce neuroinflammation and improve symptoms like pain and mobility in stroke survivors.

Relevance to Your Condition

Your medullary stroke led to Wallenberg syndrome, characterized by symptoms like loss of pain and temperature sensation, vertigo, and difficulty swallowing, and trigeminal neuralgia with a burning sensation on the left side of your face. PSE has shown promise in alleviating chronic post-stroke pain, including neuropathic pain like yours, and has been used for brainstem stroke cases, which aligns with your situation.

Timing and Efficacy

Since your stroke was about 4.5 years ago, it's worth noting that PSE has been effective for patients even more than three years post-stroke, suggesting it could still be relevant for you. Studies and case reports indicate rapid improvements in pain and other neurological functions, often within minutes of administration.

Considerations and Next Steps

While PSE shows potential, it's an off-label treatment, meaning it's not FDA-approved specifically for stroke recovery, and results can vary. It's crucial to consult with a specialist, such as Dr. Tobinick at the Institute of Neurological Recovery (INR Website), to discuss whether this treatment suits your specific needs. They can be reached at +1 (561) 353-9707 for a consultation.



Survey Note: Detailed Analysis of Perispinal Etanercept for Your Condition

Background and Context

Perispinal etanercept (PSE) is a treatment method invented by Dr. Edward Tobinick, M.D., and utilized at the Institute of Neurological Recovery (INR) in Boca Raton, Florida, located at 1877 S. Federal Hwy., Suite 110, Boca Raton, FL 33432. Etanercept, a biologic antagonist of tumor necrosis factor-alpha (TNF), is typically approved for conditions like rheumatoid arthritis but is administered perispinally for stroke recovery to target brain inflammation. This off-label use began development around 2010 and has since treated thousands of patients from over 100 countries, with reported improvements in mobility, speech, pain, and other neurological deficits.

Your Specific Condition

You experienced a medullary stroke in October 2020, resulting in Wallenberg syndrome and trigeminal neuralgia, with a burning sensation described as moderate to severe sunburn on the left side of your face. Wallenberg syndrome, also known as lateral medullary syndrome, arises from infarction in the lateral medulla, often due to occlusion of the vertebral artery or posterior inferior cerebellar artery (Wallenberg Syndrome Overview). Symptoms include ipsilateral facial sensory loss, contralateral body sensory loss, vertigo, dysphagia, and dysarthria. Trigeminal neuralgia, in your case, likely stems from stroke-related damage to the trigeminal nucleus, presenting as neuropathic pain, which can include burning sensations as confirmed by medical literature (Trigeminal Neuralgia Symptoms).

Applicability of PSE

PSE targets chronic post-stroke neuroinflammation, particularly excess TNF, which is implicated in neuropathic pain and other neurological dysfunctions. Research, including a 2019 randomized controlled trial (RCT) by Ralph et al., demonstrated PSE's effectiveness for central post-stroke pain syndrome (CPSP), reducing pain scores by 19.5 to 24 points on a visual analog scale (RCT on PSE for Stroke Pain). This trial involved 80 participants, with 30% reporting near-complete pain abatement after the first treatment, suggesting potential relief for your facial pain.

Additionally, case reports and observational studies, such as one involving 629 patients by Tobinick et al. (2012), highlight PSE's benefits for post-stroke pain, sensation, and mobility, even years after the stroke (Observational Study on PSE). A specific case mentioned on the INR website involved a patient with a brainstem stroke showing immediate improvements in pain and gait two years post-stroke, aligning with your medullary stroke context (INR Case Reports).

Timing and Long-Term Efficacy

Given the current date, March 23, 2025, your stroke occurred approximately 4.5 years ago. Literature suggests PSE can be effective even more than three years post-stroke, with reports of rapid and sustained improvements, often within 10 minutes, and lasting effects with potential need for multiple doses (Etanercept for Stroke Recovery). This supports its potential applicability to your chronic condition.

Specific Symptoms and PSE's Impact

Your trigeminal neuralgia, described as a burning sensation, fits within the spectrum of neuropathic pain addressed by PSE. Studies indicate PSE reduces microglial activation and TNF, which mediate neurotoxicity and pain in the stroke penumbra (Scientific Rationale for PSE). For Wallenberg syndrome, while specific studies are limited, PSE's broad application to post-stroke neurological dysfunction suggests it could help with associated symptoms like sensory deficits and vertigo, given its mechanism of enhancing functional connectivity.

Controversies and Limitations

PSE's off-label status means it's not universally accepted in mainstream medicine, with some skepticism due to the need for larger-scale, randomized trials. The American Academy of Neurology issued a contested warning in 2016 about its use, citing potential biases in non-randomized studies (Etanercept Controversy). However, recent RCTs, like the 2019 trial, provide stronger evidence, and ongoing trials like PESTO aim to further validate its efficacy (PESTO Trial Design).

Safety and Side Effects

Etanercept, when used systemically, can have side effects like injection site reactions and infections, but at the low doses used for PSE, serious side effects are less clear (Etanercept Side Effects). Given its invasive delivery method, risks like infection or cerebrospinal fluid leakage are possible, though rare, and should be discussed with a specialist.

Comparative Analysis: PSE vs. Standard Treatments

Standard treatments for trigeminal neuralgia include anticonvulsants like carbamazepine and surgical options like rhizotomy, which can cause facial numbness (Trigeminal Neuralgia Treatments). For Wallenberg syndrome, rehabilitation focuses on managing symptoms like dysphagia and ataxia. PSE offers a novel approach by targeting neuroinflammation, potentially providing rapid relief where standard treatments may be less effective or have side effects.

Table: Summary of PSE Studies Relevant to Your Condition

Study Reference

Year

Focus Area

Key Finding

Ralph et al., Expert Opin Investig Drugs

2020

Chronic post-stroke pain

Reduced pain scores by 19.5-24 points, 30% near-complete pain abatement

Tobinick et al., CNS Drugs

2012

Post-stroke neurological dysfunction

80%+ saw reduced spasticity, 85%+ improved movement in 629 patients

Tobinick, Clinical Drug Investigation

2019

Hemispatial neglect and pain

Immediate resolution in case report, supports rapid improvement

Recommendations and Next Steps

Given the potential applicability, contacting the INR at +1 (561) 353-9707 for a consultation is advisable. Dr. Tobinick, with over 20 U.S. and international patents, has extensive experience, and the INR website provides further details (INR Website). Ensure to discuss your medical history, including any contraindications like active infections or demyelinating diseases, as these could affect suitability.

Conclusion

In summary, PSE appears to be a promising option for your chronic post-stroke symptoms, with scientific evidence supporting its use for pain and neurological dysfunction. However, its off-label nature and variable efficacy necessitate a personalized medical evaluation to determine its fit for your case.


 
 
 

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