Post-COVID Painful Polyneuropathy

This forum made possible through the generous support of SDN members, donors, and sponsors. Thank you.
drusso

drusso

Full Member
Moderator Emeritus
Lifetime Donor
Verified Member
Physician
Verified Expert
Gold Donor
Joined
Nov 21, 1998
Messages
13,055
Reaction score
7,587
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

1593041995917.png
Members don't see this ad.
 
Members don't see this ad :)
Psilocybin and spirit animals? Are there a lot of Medicine Men practicing in your area??
 
manowar rules said:
Psilocybin and spirit animals? Are there a lot of Medicine Men practicing in your area??
Click to expand...

I get between 3-12 referrals per year...

rising-fire.com

Shamanic Healing Center Portland, Oregon | Rising Fire

Re-Ignite Your Inner Fire: Rising Fire provides personal shamanic healing sessions, group classes, and practitioner trainings that re-ignite your fire, feed your inner brilliance, and provide you with a toolkit of healing practices with which to tend your fire.
rising-fire.com rising-fire.com
 
An SCS trial is reasonable, considering she had failed several classes of neuropathic meds and has painful neuropathy (not just numbness/paresthesias)

This is a case in which I’d also try nucynta, but failing that I’d offer an SCS trial.

Nevro/Abbott would be my preference.
 
Last edited:
The potential after effects of Covid infection are really not getting talked about enough....think it is going to be a major issue which we don't yet have a good grasp on

Are people doing a lot of SCS trials for true neuropathy?
 
lonelobo said:
The potential after effects of Covid infection are really not getting talked about enough....think it is going to be a major issue which we don't yet have a good grasp on

Are people doing a lot of SCS trials for true neuropathy?
Click to expand...

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.
 
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.
Click to expand...
That was my understanding, just wondering if people still trying anyway
 
Members don't see this ad :)
myrandom2003 said:
Total PMR diagnosis.
Saw this all the time on the rehab floor after they were sent from ICU
Click to expand...
It’s certainly not from their diabetes. If you go into an ICU and you have no neuropathy and you leave in ICU and you have neuropathy or myopathy will suggest there’s a metabolic derangements that occurred. That is a true p.m. mr diagnosis
 
Critical illness neuropathy/myopathy is real. Go to Grady Hospital and you'll see it.
 
Ducttape said:
im $ure al$o there i$ $ome value of $C$ in the$e neuropathy patient$...

you didnt mention $tem cell....
Click to expand...

www.nytimes.com

Here’s What Recovery From Covid-19 Looks Like for Many Survivors (Published 2020)

Continuing shortness of breath, muscle weakness, flashbacks, mental fogginess and other symptoms may plague patients for a long time.
www.nytimes.com www.nytimes.com

First post-COVID-neuropathy survivor reporting 80% improvement with BurstDR trial day #2

#Gamechanger #We'vegotthis #Herosworkhere #Don'tstopbelieving

"Physiatrists, doctors who specialize in physical rehabilitation, are likely to be increasingly in demand, experts say. So are neurologists and mental health therapists. “I think the main take-home here is that post-Covid care is complex,” Dr. Putrino said. “It’s hard enough to rehabilitate someone with a broken leg where one thing is wrong.” “But with post-Covid care,” he said, “you’re dealing with people with some cognition issues, physical issues, lung issues, heart issues, kidney issues, trauma — and all of these things have to be managed just right.”
 
drusso said:
www.nytimes.com

Here’s What Recovery From Covid-19 Looks Like for Many Survivors (Published 2020)

Continuing shortness of breath, muscle weakness, flashbacks, mental fogginess and other symptoms may plague patients for a long time.
www.nytimes.com www.nytimes.com

First post-COVID-neuropathy survivor reporting 80% improvement with BurstDR trial day #2

#Gamechanger #We'vegotthis #Herosworkhere #Don'tstopbelieving

"Physiatrists, doctors who specialize in physical rehabilitation, are likely to be increasingly in demand, experts say. So are neurologists and mental health therapists. “I think the main take-home here is that post-Covid care is complex,” Dr. Putrino said. “It’s hard enough to rehabilitate someone with a broken leg where one thing is wrong.” “But with post-Covid care,” he said, “you’re dealing with people with some cognition issues, physical issues, lung issues, heart issues, kidney issues, trauma — and all of these things have to be managed just right.”
Click to expand...
drusso said:
www.nytimes.com

Here’s What Recovery From Covid-19 Looks Like for Many Survivors (Published 2020)

Continuing shortness of breath, muscle weakness, flashbacks, mental fogginess and other symptoms may plague patients for a long time.
www.nytimes.com www.nytimes.com

First post-COVID-neuropathy survivor reporting 80% improvement with BurstDR trial day #2

#Gamechanger #We'vegotthis #Herosworkhere #Don'tstopbelieving

"Physiatrists, doctors who specialize in physical rehabilitation, are likely to be increasingly in demand, experts say. So are neurologists and mental health therapists. “I think the main take-home here is that post-Covid care is complex,” Dr. Putrino said. “It’s hard enough to rehabilitate someone with a broken leg where one thing is wrong.” “But with post-Covid care,” he said, “you’re dealing with people with some cognition issues, physical issues, lung issues, heart issues, kidney issues, trauma — and all of these things have to be managed just right.”
Click to expand...

The human experimentation continues.
 
drusso said:
"Physiatrists, doctors who specialize in physical rehabilitation, are likely to be increasingly in demand, experts say. So are neurologists and mental health therapists. “I think the main take-home here is that post-Covid care is complex,” Dr. Putrino said. “It’s hard enough to rehabilitate someone with a broken leg where one thing is wrong.” “But with post-Covid care,” he said, “you’re dealing with people with some cognition issues, physical issues, lung issues, heart issues, kidney issues, trauma — and all of these things have to be managed just right.”
Click to expand...
and a stim will solve all of these issues and replace all of these physicians, I suppose...
 
Spinal Cord Stimulation and Pain Relief in Painful Diabetic Peripheral Neuropathy
A Prospective Two-Center Randomized Controlled Trial
Rachel Slangen; Nicolaas C. Schaper; Catharina G. Faber; Elbert A. Joosten; Carmen D. Dirksen; Robert T. van Dongen; Alfons G. Kessels; Maarten van Kleef
DISCLOSURES


Abstract and Introduction
Abstract
Objective Painful diabetic peripheral neuropathy (PDPN) is a common complication of diabetes mellitus. Unfortunately, pharmacological treatment is often partially effective or accompanied by unacceptable side effects, and new treatments are urgently needed. Small observational studies suggested that spinal cord stimulation (SCS) may have positive effects.
Research Design and Methods We performed a multicenter randomized clinical trial in 36 PDPN patients with severe lower limb pain not responding to conventional therapy. Twenty-two patients were randomly assigned to SCS in combination with the best medical treatment (BMT) (SCS group) and 14 to BMT only (BMT group). The SCS system was implanted only if trial stimulation was successful. Treatment success was defined as ≥50% pain relief during daytime or nighttime or "(very) much improved" for pain and sleep on the patient global impression of change (PGIC) scale at 6 months.

Results Trial stimulation was successful in 77% of the SCS patients. Treatment success was observed in 59% of the SCS and in 7% of the BMT patients (P < 0.01). Pain relief during daytime and during nighttime was reported by 41 and 36% in the SCS group and 0 and 7% in the BMT group, respectively (P < 0.05). Pain and sleep were "(very) much improved" in 55 and 36% in the SCS group, whereas no changes were seen in the BMT group, respectively (P < 0.001 and P < 0.05). One SCS patient died because of a subdural hematoma.
Conclusions Treatment success was shown in 59% of patients with PDPN who were treated with SCS over a 6-month period, although this treatment is not without risks.




This is the best literature I could find to support your theory. Not even promising. And what is the natural course of the neuropathy in COVID?
 
lobelsteve said:
Spinal Cord Stimulation and Pain Relief in Painful Diabetic Peripheral Neuropathy
A Prospective Two-Center Randomized Controlled Trial
Rachel Slangen; Nicolaas C. Schaper; Catharina G. Faber; Elbert A. Joosten; Carmen D. Dirksen; Robert T. van Dongen; Alfons G. Kessels; Maarten van Kleef
DISCLOSURES


Abstract and Introduction
Abstract
Objective Painful diabetic peripheral neuropathy (PDPN) is a common complication of diabetes mellitus. Unfortunately, pharmacological treatment is often partially effective or accompanied by unacceptable side effects, and new treatments are urgently needed. Small observational studies suggested that spinal cord stimulation (SCS) may have positive effects.
Research Design and Methods We performed a multicenter randomized clinical trial in 36 PDPN patients with severe lower limb pain not responding to conventional therapy. Twenty-two patients were randomly assigned to SCS in combination with the best medical treatment (BMT) (SCS group) and 14 to BMT only (BMT group). The SCS system was implanted only if trial stimulation was successful. Treatment success was defined as ≥50% pain relief during daytime or nighttime or "(very) much improved" for pain and sleep on the patient global impression of change (PGIC) scale at 6 months.

Results Trial stimulation was successful in 77% of the SCS patients. Treatment success was observed in 59% of the SCS and in 7% of the BMT patients (P < 0.01). Pain relief during daytime and during nighttime was reported by 41 and 36% in the SCS group and 0 and 7% in the BMT group, respectively (P < 0.05). Pain and sleep were "(very) much improved" in 55 and 36% in the SCS group, whereas no changes were seen in the BMT group, respectively (P < 0.001 and P < 0.05). One SCS patient died because of a subdural hematoma.
Conclusions Treatment success was shown in 59% of patients with PDPN who were treated with SCS over a 6-month period, although this treatment is not without risks.

This is the best literature I could find to support your theory. Not even promising. And what is the natural course of the neuropathy in COVID?
Click to expand...

Was it opioid-sparing?
 
I thought that you were of the opinion that opioid sparing in and of itself was not sine qua non for appropriate therapy, but I guess I was assuming too much.


I would argue that you can use and FDA approved device for an on label indication, but the best available evidence suggests that it will not help at all.
 
Ducttape said:
I thought that you were of the opinion that opioid sparing in and of itself was not sine qua non for appropriate therapy, but I guess I was assuming too much.


I would argue that you can use and FDA approved device for an on label indication, but the best available evidence suggests that it will not help at all.
Click to expand...

But, what if it does...then what? Do you believe your eyes or the lying data?
 
I would never offer. so it is not a what/if proposition in my case.



now, if in your case, you do offer and it works, you have already made a risk assessment for implantation (ie yes), so you essentially be forced to implant if the patient has clinical benefit.
 
Definitely need some prp stem cells and placental membrane
 
Ducttape said:
I would never offer. so it is not a what/if proposition in my case.

now, if in your case, you do offer and it works, you have already made a risk assessment for implantation (ie yes), so you essentially be forced to implant if the patient has clinical benefit.
Click to expand...

Doesn't that go down as "win?" The patient had pain a problem, trialed a therapy, had good results, got implanted...
 
nice article.

interestingly, no comment about the use for spinal cord stimulators to treat small fiber neuropathy.



imo, the most common outcome of your "win" is that lobelsteve will explant that same stim a few months after you put it in.
 
Ducttape said:
nice article.

interestingly, no comment about the use for spinal cord stimulators to treat small fiber neuropathy.



imo, the most common outcome of your "win" is that lobelsteve will explant that same stim a few months after you put it in.
Click to expand...

But, imagine it doesn't happen. Then, what? How can you be so certain...
 
There's likely a significant autoimmune or immune mediated contribution behind a lot of odd neuropathies, and possibly in DPN. While I do think stimulation can provide efficacy, the data are limited. Many companies are trying hard to get into this space due to the number of patients afflicted, but it's something I offer when they've failed a lot of medication trials, done well with sympathetic blocks, not interested in pumps, and the primary issue is pain not motor/autonomic loss.

It hasn't been horrible, but it's not a slam dunk like leg pain/chronic radic. My frustration is that outside of CIPN like states, the pathology is normally progressive.
 
yes, and birds can eat sharks too.


no, literally.




in answer to your question, doing highly expensive treatments that hold little chance of success is not quality healthcare. it is expensive, wasteful, most likely to fail and put the patient at unnecessary risk for harm, and it attracts the eyes of regulators who then shut down that particular treatment to appropriate people who have a good chance of getting benefit.
 
I should mention....

what you are advocating is already not approved by all LCDs.


CMM-211.4: Non-Indications

A high frequency spinal cord stimulator is considered experimental, investigational, or unproven for ANY other indication, including CRPS/RSD. 

A non high-frequency dorsal column spinal cord stimulator (SCS) is considered experimental, investigational or unproven for any other indication, including but not limited to: 
Post-amputation pain (phantom limb pain) 
Post-herpetic neuralgia 
Peripheral neuropathy
Dysesthesias involving the lower extremities secondary to spinal cord injury.
 
Ducttape said:
I should mention....

what you are advocating is already not approved by all LCDs.


CMM-211.4: Non-Indications

A high frequency spinal cord stimulator is considered experimental, investigational, or unproven for ANY other indication, including CRPS/RSD. 

A non high-frequency dorsal column spinal cord stimulator (SCS) is considered experimental, investigational or unproven for any other indication, including but not limited to: 
Post-amputation pain (phantom limb pain) 
Post-herpetic neuralgia 
Peripheral neuropathy
Dysesthesias involving the lower extremities secondary to spinal cord injury.
Click to expand...

LCD's don't dictate care...

"The map is not the territory..."

"All models are wrong, but some are useful..."

en.wikipedia.org

Map–territory relation - Wikipedia

en.wikipedia.org en.wikipedia.org

All models are wrong - Wikipedia

en.wikipedia.org en.wikipedia.org
 
lobelsteve said:
Placebo. $75-100k. Back when I taught for SJM, I lectured on indications. Might still have slide deck on scs for pn. We recommended against scs. At paid lectures to sell scs.
Click to expand...

Maybe the patient had causalgia? It's doing diddly-squat for her PN but helping her causalgia?

What's the sound of one-hand clapping?

Fact_Sheet_Painful_Peripheral_Neuropathy

Painful peripheral neuropathy is a common neurological disorder characterized by numbness, weakness, tingling and pain, often starting in the hands or feet.
www.neuromodulation.com www.neuromodulation.com
.

Neurosurgery

academic.oup.com academic.oup.com
 
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.
 
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.
Click to expand...

...but if the patient life is changed, it goes down in the win column...
 
What if the patients life is changed because you caused a chronic postdural headache, or epidural abscess?

If you choose not to follow the patient’s insurance LCD, you will indubitably affect her quality of life, at least to the tune of $40,000...



in all honesty, you have probably equal low odds of benefit and risk in this scenario.
 
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.
Click to expand...

What’s wrong with the Nevro study other than they are funding it? I was almost an enrollment center for it and it had a fairly good design from what I remember. So far the results I’ve seen are good. I disagree with the nods given to Burst and DRG earlier in the thread, no proof at all that these are effective treatments and just throwing out favorite company names in my opinion. I have placed 4 Nevro devices for neuropathy in my lifetime. 3 of the 4 are still implanted and doing well, all implanted roughly 1 year ago when the study was in its early stages. 1 of the 4 failed the implant basically from day one.

I’m not advocating for Nevro SCS at this point, more sharing my limited experience and wondering about the study.
 
Personally, if I had painful peripheral neuropathy I would be calling up a trusted colleague to do a stim trial instead of limping along on a cocktail of TCA and gabapentin. God forbid it’s bad enough to want something stronger.
 
Ducttape said:
What if the patients life is changed because you caused a chronic postdural headache, or epidural abscess?

If you choose not to follow the patient’s insurance LCD, you will indubitably affect her quality of life, at least to the tune of $40,000...

in all honesty, you have probably equal low odds of benefit and risk in this scenario.
Click to expand...

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.
 
There's a difference between insurance/LCD approval, proven efficacy, and FDA approval as we know.

I'm all for being good stewards, but SCS is FDA indicated broadly for "chronic intractable pain of the trunk and/or limbs." Alternative therapies such as IVIG or PLEX for SFN for example can cost $80-100k per year.

If we've gotten down this far on the treatment algorithm on an individual patient, are we not ethically obligated to consider the next steps or refer them to someone who can/will?

Should no one be trialed unless they are 95-100% going to succeed at 5 years?

I agree it is way too early to be doing this for post-COVID neurologic issues in my opinion, but it's an individual risk/benefit/options discussion.
 
You must log in or register to reply here.

Similar threads

drusso
Pain is most common Long COVID symptom...
Replies
4
Views
684
kstarm
K
D
Persistent Pain Post TFESI
Replies
18
Views
1K
bedrock
bedrock
SpineandWine
post-operative knee pain (>1 year out)
Replies
48
Views
2K
kstarm
K
bedrock
Covid for pain relief
Replies
3
Views
522
Orin
O
C
SCS for post laminectomy pain without radiculopathy?
Replies
39
Views
2K
epidural man
epidural man
Top