Post-COVID Painful Polyneuropathy

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Orin said:
There's a difference between insurance/LCD approval, proven efficacy, and FDA approval as we know.
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I don't think everyone here knows that. That's why the map is not the territory. At the end of the day, the only thing that is real is the patient in front of you.
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In general I really hate when people use a single patient success as an example of a treatment that works. One patient doesn’t mean squat. However, I’ll break my own rule. One of my 4 Nevro implants for neuropathy is a guy from a very small rural town who was being given 300mg of morphine a day by the “pain” doctor in that area of the state. He googled stuff all the time looking for a better treatment and that’s how he ended up coming to us. It was a very simple office visit. Do you have terrible neuropathy, limits your activity in daily life, you’re miserable, you’ve tried all anti-pathic‘s and every treatment under the sun, ...”want to try a stimulator? There aren’t any other options you haven’t already tried.” Implanted him for legs, he weaned himself down by half, asked for implant for his hands. I made him wait 8 months to make sure efficacy remained. Implanted cervical for hands and he’s down to 15mg morphine PRN now. His life is changed.
 
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gdub25 said:
In general I really hate when people use a single patient success as an example of a treatment that works. One patient doesn’t mean squat. However, I’ll break my own rule. One of my 4 Nevro implants for neuropathy is a guy from a very small rural town who was being given 300mg of morphine a day by the “pain” doctor in that area of the state. He googled stuff all the time looking for a better treatment and that’s how he ended up coming to us. It was a very simple office visit. Do you have terrible neuropathy, limits your activity in daily life, you’re miserable, you’ve tried all anti-pathic‘s and every treatment under the sun, ...”want to try a stimulator? There aren’t any other options you haven’t already tried.” Implanted him for legs, he weaned himself down by half, asked for implant for his hands. I made him wait 8 months to make sure efficacy remained. Implanted cervical for hands and he’s down to 15mg morphine PRN now. His life is changed.
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If pain medicine were easy a PA or robot could do it. It's the exceptions that prove the rule and if you never have exceptions you don't know the limits of what you know.
 
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drusso said:
If pain medicine were easy a PA or robot could do it. It's the exceptions that prove the rule and if you never have exceptions you don't know the limits of what you know.
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Exactly. And that’s why I advocate for doing a trial on this patient. I’d be careful whether or not to implant, but that’s the entire point of a “trial”
 
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drusso said:
I told the patient what you said and that how you thought she was faking and just experiencing a placebo effect. She said that you're heartless ****er and you should go **** yourself.
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for what its worth, I never tell a patient they are faking it, or placebo. pain is pain.

Im sure she's comfortable shelling out $40,000, when she could buy Tesla 3 for that same amount...

course, that means that you can get a downpayment for a Tesla 3 from her implant...


if I ever meet her, ill ask how the snake oil your doctor sold her is working out, when is she getting it explanted, and whether you feel that fancy Tesla is worth the hype.
 
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drusso said:
I think that I made my first diagnosis in clinic today on a woman diagnosed with COVID-19 in early March. PCR(+) and Ab(+) Moderate illness: Hospitalized 3 days and on supplemental O2 but no ventilator.

Developed sub-acute painful burning feet end of April. EMG shows mild sensorimotor peripheral polyneuropathy. No help from gabapentin, TCA's. Pregabalin caused edema. Tramadol causes twitching. Trialed low dose naltrexone and topicals. Trialed neutraceuticals and alpha-2-lipoic acid. Trialed acupuncture and TENS. Trialed Reikki, psilocybin, IV Ketamine, THC/CBD, and Shamanic Healing/Medical Intuitive Guided Healing/Spirit Animal.

Skin biopsy pending.
Click to expand...

Guessing 'other' polyneuropathy work-up was negative (TSH, B12 and HgA1c)?

Let us know if biopsy shows SFN.

Regards
 
bedrock said:
Exactly. And that’s why I advocate for doing a trial on this patient. I’d be careful whether or not to implant, but that’s the entire point of a “trial”
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We all say this but most people have a trial to perm percentage of over 95%.

drusso said:
Correct, but alpha-lipoic acid "took the edge off."
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What's the ALA dosing/regimen you're using?
 
cut dose in half if using R-ALA. it is a racemic compound, with only the R form active.

I typically use only 300 mg a day of R-ALA to start.
 
lobelsteve said:
Peripheral neuropathy is not causalgia (whatever that is) is not peripheral neuropathic pain. Your link reports level one evidence for DPN, yet provides no reference.

We know it does not work for DPN, but studies are ongoing. You have a neuropathy that is novel in a patient that could not have disease more than 4 months old. Folie a deux for profit.

Shame Cersei, Shame.
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www.ncbi.nlm.nih.gov

Neurological involvement of coronavirus disease 2019: a systematic review

In December 2019, unexplained cases of pneumonia emerged in Wuhan, China, which were found to be secondary to the novel coronavirus SARS-CoV-2. On March 11, 2020, the WHO declared the Coronavirus Disease 2019 (COVID-2019) outbreak, a pandemic.To clarify ...
www.ncbi.nlm.nih.gov www.ncbi.nlm.nih.gov

"With the emergence of more cases of acute neuropathies temporally linked to SARS-CoV-2 infection, we should gain a better understanding of the underlying pathophysiology and potential therapeutic options of GBS related to COVID-19. Since these neuropathies are treatable and they pose increased morbidity and mortality, neurologists, intensivists, and internists working with COVID-19 patients must be vigilant of this association."

I remain vigilant...
 
drusso said:
www.ncbi.nlm.nih.gov

Neurological involvement of coronavirus disease 2019: a systematic review

In December 2019, unexplained cases of pneumonia emerged in Wuhan, China, which were found to be secondary to the novel coronavirus SARS-CoV-2. On March 11, 2020, the WHO declared the Coronavirus Disease 2019 (COVID-2019) outbreak, a pandemic.To clarify ...
www.ncbi.nlm.nih.gov www.ncbi.nlm.nih.gov

"With the emergence of more cases of acute neuropathies temporally linked to SARS-CoV-2 infection, we should gain a better understanding of the underlying pathophysiology and potential therapeutic options of GBS related to COVID-19. Since these neuropathies are treatable and they pose increased morbidity and mortality, neurologists, intensivists, and internists working with COVID-19 patients must be vigilant of this association."

I remain vigilant...
Click to expand...
Glad you became a Neurologist.
 
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www.nytimes.com

What If You Never Get Better From Covid-19? (Published 2021)

Some patients could be living with the aftereffects for years to come. Recent research into another persistent, mysterious disease might help us understand how to treat them.
www.nytimes.com www.nytimes.com

Anecdotally, at least, some long-haulers are experiencing the type of viral reactivation Klimas describes. In late October, seven months after contracting the coronavirus, Lauren Nichols developed shingles — a reactivation of the virus that causes chickenpox. The episode, which featured burning, “out of this world” nerve pain, sent her to the emergency room. A lesion developed on the cornea of her left eye, threatening her vision. Antiviral medication helped bring the shingles under control. Nichols, an administrator of a long-Covid support group, told me that reactivation of Epstein-Barr, cytomegalovirus and other herpesviruses occurs in a small but significant percentage of long-haulers on the site.
 
Follow up to previous comments. Nevro has won FDA indication for painful diabetic peripheral neuropathy.
Personally I’m going to offer stim trials to a few more patients with painful peripheral neuropathy who have failed other reasonable care.
 
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please don't.


a local neurosurgeon did this.

I think all of the ones he did got explanted. high infection rate. poor long term benefit.
 
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I did one for chemo neuropathy. Seems to help at least 50%. On the other hand, I was sent a referral to consider one for DPNP, with an A1C of 10 and a half pack a day smoking habit... so instead we had a long conversation about the importance of aerobic and resistance exercise in controlling blood sugar, how smoking was contributing to the neuropathy pain, and how she needed to go back to her PCP to get on something more than just metformin.
 
Ducttape said:
please don't.


a local neurosurgeon did this.

I think all of the ones he did got explanted. high infection rate. poor long term benefit.
Click to expand...
Key thing is to only trial patients who failed everything and have moderate-severe pain as the main feature not just mild pain and not numbness tingling.

patients should have tried 3+ Neuropathic meds + ALA, tramadol, cymbalta, etc. blood sugar under decent control,

in that specific setting it’s better than opioids, and I expect better results from nevro than the older stimulators.
 
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bedrock said:
Key thing is to only trial patients who failed everything and have moderate-severe pain as the main feature not just mild pain and not numbness tingling.

patients should have tried 3+ Neuropathic meds + ALA, tramadol, cymbalta, etc. blood sugar under decent control,

in that specific setting it’s better than opioids, and I expect better results from nevro than the older stimulators.
Click to expand...
I think that we all know in the right hands stim can be opioid sparing.
 
drusso said:
I think that I made my first diagnosis in clinic today on a woman diagnosed with COVID-19 in early March. PCR(+) and Ab(+) Moderate illness: Hospitalized 3 days and on supplemental O2 but no ventilator.

Developed sub-acute painful burning feet end of April. EMG shows mild sensorimotor peripheral polyneuropathy. No help from gabapentin, TCA's. Pregabalin caused edema. Tramadol causes twitching. Trialed low dose naltrexone and topicals. Trialed neutraceuticals and alpha-2-lipoic acid. Trialed acupuncture and TENS. Trialed Reikki, psilocybin, IV Ketamine, THC/CBD, and Shamanic Healing/Medical Intuitive Guided Healing/Spirit Animal.

Skin biopsy pending.

Question: DRG vs BurstDR vs HF10?

Information on COVID-19 and Neuropathy | NeuropathyCommons

neuropathycommons.org neuropathycommons.org

View attachment 310931
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Brain MRI ? R/o MS.
QST to evaluate small fiber neuropathy?
Differential is large :

Other conditions associated with acquired small fiber neuropathy include HIV [15, 16], inflammatory neuropathies (such as Guillain-Barre syndrome and chronic inflammatory demyelinating polyneuropathy) [17, 18], celiac disease [19, 20], hepatitis C [21], restless legs syndrome [22], complex regional pain syndrome type I [23], paraproteinemia [24], neurotoxic drug use [25–27], systemic lupus erythematosus [28], Sjogren’s syndrome [29], abnormal thyroid function [2•], amyloidosis, and paraneoplastic syndromes [30, 31]. This list is not comprehensive and there are many case reports describing small fiber neuropathies in other diseases. In addition, there are inherited conditions which cause small fiber neuropathies, such as Fabry’s disease and the hereditary sensory and autonomic neuropathies.....
 
drusso said:
I think that we all know in the right hands stim can be opioid sparing.
Click to expand...
yes. in the right hands also means with the right clinical disease. I am not sure diabetes related peripheral neuropathy is one of them.

the SENZA-DPN study enrollment was "completed" in 2019, and a trial description was posted a year ago. it will be an industry sponsored paper, though.


also, I am not recommending opioids as the alternative to stim.
 
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I would give the patient an SCS trial. After trialing all neuropathics at a decent dose, i would do a weak opioid, tramadol, nucynta, if still severe why not a trial. Certainly a trial is lower risk than the guy ended up on opioids.

As far as I know the Nevro Senzsa data for DPN is not out yet, I asked the rep last month when it would come out and they had no idea.
 
lobelsteve said:
I saw a patient who had covid and developing ascending sensory alteration in feet, calves, saddle. MRI entire CNS neg.
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a good EMG could differentiate between a "simple" peripheral neuropathy and guillain barre picture. treatment would be different
 
lobelsteve said:
I am not. Studies in past were pretty poor and did show benefit. DPN study ongoing from Nevro. Biased. If you here about it, likely placebo or slightly better. If you do not hear about it- complete fail.
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Nevro is garbage as are their fraudulent studies.
 
Chronic Covid is going to be yuuuuuge.

“I suffer from chronc lmye, chronic Covid 19, 20, 21, fibro, hydromorphone and Xanax deficiency syndrome”
 
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Seeing more and more long-haul complaints...

1619628580339.png
 
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www.nytimes.com

Many Post-Covid Patients Are Experiencing New Medical Problems, Study Finds (Published 2021)

An analysis of health insurance records of almost two million coronavirus patients found new issues in nearly a quarter — including those whose Covid infection was mild or asymptomatic.
www.nytimes.com www.nytimes.com

"In the new study, the most common issue for which patients sought medical care was pain — including nerve inflammation and aches and pains associated with nerves and muscles — which was reported by more than 5 percent of patients or nearly 100,000 people, more than a fifth of those who reported post-Covid problems."
 
Assuming studies are correct and neuromodulation doesn’t work for peripheral neuropathy….

The real question is WHY? Why doesn’t it work?

Because it SHOULD work.

Don’t you find it surprising that it doesn’t?
 
epidural man said:
Assuming studies are correct and neuromodulation doesn’t work for peripheral neuropathy….

The real question is WHY? Why doesn’t it work?

Because it SHOULD work.

Don’t you find it surprising that it doesn’t?
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But the Nevro KOLs says it does work for DPN?

Peripheral neuropathy is a bunch of different things, and a lot of it isn't peripheral as much as it is central. A lot of the above may as well be viral-induced fibromyalgia...
 
Orin said:
But the Nevro KOLs says it does work for DPN?

Peripheral neuropathy is a bunch of different things, and a lot of it isn't peripheral as much as it is central. A lot of the above may as well be viral-induced fibromyalgia...
Click to expand...
Viral induced fibromyalgia …. I love it
 
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March 29, 2022

COVID Can Leave People With Lingering Nerve Damage​

feet

Adobe Stock

TUESDAY, March 29, 2022 (HealthDay News) -- For many people, damage from COVID-19 continues well beyond the initial infection. A case in point: Pain, tingling and numbness in the hands and feet can occur for weeks or months afterward, a new study reveals.

The researchers surveyed more than 1,550 patients who underwent COVID-19 testing at the Washington University Medical Campus in St. Louis over a 10-month period early in the pandemic. Those who tested positive (542) were about three times more likely to report pain, numbness or tingling in their hands and feet (peripheral neuropathy) than those who tested negative, according to the study.

"We found that nearly 30% of patients who tested positive for COVID-19 also reported neuropathy problems at the time of their diagnosis," said study co-author Simon Haroutounian.

"For 6% to 7% of them, the symptoms persisted for at least two weeks, and up to three months, suggesting this virus may have lingering effects on peripheral nerves," he added in a university news release.

Some of the patients with neuropathy symptoms sought treatment at the university pain center, but most had mild to moderate symptoms and may not have sought help from a pain specialist, said Haroutounian, who is chief of clinical research at the pain center.
"Several viral infections — such as HIV and shingles — are associated with peripheral neuropathy because viruses can damage nerves," he noted.

"In the case of HIV, we didn't realize it was causing neuropathy for several years after the AIDS epidemic began. Consequently, many people went undiagnosed with neuropathy and untreated for the pain associated with the problem," explained Haroutounian, who is also an associate professor of anesthesiology.

The same may be true for patients with neuropathy following COVID-19, he said. Regardless of the cause, however, treatments for neuropathy are similar.

"There is a high likelihood we could still help these patients, even though at the moment there are not clear diagnostic criteria or even a recognized syndrome known as COVID peripheral neuropathy," Haroutounian said.

Because the study was conducted at a single center, further research is needed to replicate the findings, he pointed out.

"We also finished our data collection before vaccinations became widespread and before the Delta or Omicron variants arrived, and it's difficult to say what effects those variables may have," Haroutounian added.

The findings were published online March 24 in the journal Pain.
 
I hear burst stim is tots amazing, and mri compatible, and “we are working on the indication for long Covid..don’t worry we have plenty of industry backing so coming to a town near you soon enough..”
 
drusso said:
Do you think their neuropathy will get better in time?
Click to expand...
Do you think SCS technology and its efficacy in general will improve over time?

I'm still waiting on the magic I keep reading and hearing about.
 
What's the over/under on if Saluda lives up to the hype?
 
RoloTomassi said:
What's the over/under on if Saluda lives up to the hype?
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It WILL live up to the hype for 36-48 months, at least in the eyes of the doctors using it. The moment stim reimbursement gets cut (coming in the future) it will stop working.
 
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