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Has anyone used Ketamine treatment for CRPS ?

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Old 12-31-2017, 06:30 PM   #1
Alice P
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Default Has anyone used Ketamine treatment for CRPS ?

Has anyone used Ketamine treatment for CRPS ? If so were the results good/bad ? My husbands Dr. is recommending Ketamine as a possible treatment.

Ketamine and CRPS or RSD - American RSDHope
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Old 01-01-2018, 08:07 AM   #2
catra121
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I have not but I know a lot of people have. Success, like any treatment for CRPS, is mixed. Some respond very well and have even gone into remission. Others had bad side effects and/or got no relief. And of course lots of results in the middle somewhere. If you do a search on here you can find some posts about it and about the different protocols and doses and stuff. There are different options out there with inpatient and outpatient options, different doses, different schedules, etc. I've looked into it before but never felt like it was the right option for me (though no doctor ever offered it either). There are some pretty amazing success stories out there though so definitely worth researching to see if it's something he wants to try.
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Old 01-03-2018, 05:32 PM   #3
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I have not but I know a lot of people have. Success, like any treatment for CRPS, is mixed. Some respond very well and have even gone into remission. Others had bad side effects and/or got no relief. And of course lots of results in the middle somewhere. If you do a search on here you can find some posts about it and about the different protocols and doses and stuff. There are different options out there with inpatient and outpatient options, different doses, different schedules, etc. I've looked into it before but never felt like it was the right option for me (though no doctor ever offered it either). There are some pretty amazing success stories out there though so definitely worth researching to see if it's something he wants to try.
My husband has decided not to do DRG treatment, so that's off the table.....

So...we are really looking into other treatments. We've done quite a lot of research into Ketamine treatments and its seems like people are having good results with it (one woman said she had to stop treatment because it made her extremely nauseous and dizzy) pain reduced to a 1 or 2 and being able to use leg,foot,hand etc again.

We don't know if Workers Comp will pay for the Ketamine treatments, if not, we will talk to the VA and see if they will cover it. I've read that it is covered on some people's insurance .

The other option that we are looking at is Peripheral nerve surgery. Workers Comp paid for my husband to see a specialist who preforms the sugary and then denied the surgery :. My husband and his lawyer will be going to a hearing this month to get it sorted .

Thank you for responding.

Last edited by Alice P; 01-03-2018 at 05:50 PM.
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Old 01-03-2018, 10:35 PM   #4
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Did you use our site search for past posts?
https://www.neurotalk.org/search.php

Peripheral nerve surgery ?? - with RSD/CRPS if I recall from past reading , it is not the actual nerve causing the pain.. it is more of a brain sensory neural issue..
Plus any surgery may cause RSD to spread...

It's why amputation for RSD limbs does not stop the pain sensations..
Others here might be able to explain it better, or web search a lot before you think about any kind of surgery..

A few did have wrong diagnosis of RSD/CRPS or had secondary factors, like pinched nerves or other nerve issues..
One member went years thinking they had RSD in ankle , finally went to a chiropractor and ankle was adjusted and fixed the problem..
It is important to rule out anything that can be ruled out by testing, blood work, bodywork or adjustments...

Explore our sticky threads for saved information & links to other good info sites..
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Last edited by Jo*mar; 01-03-2018 at 10:50 PM.
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Old 01-03-2018, 10:49 PM   #5
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Originally Posted by Jo*mar View Post
Did you use our site search for past posts?
https://www.neurotalk.org/search.php

Peripheral nerve surgery ?? - with RSD/CRPS if I recall from past reading , it is not the actual nerve causing the pain.. it is more of a brain sensory neural issue..
Plus any surgery may cause RSD to spread...

It's why amputation for RSD limbs does not stop the pain sensations..
Others here might be able to explain it better, or web search a lot before you think about that kind of surgery..

A few did have wrong diagnosis of RSD/CRPS or had secondary factors, like pinched nerves or other nerve issues..
One member went years thinking they had RSD in ankle , finally went to a chiropractor and ankle was adjusted and fixed the problem..
It is important to rule out anything that can be ruled out by testing, blood work, bodywork or adjustments...

Explore our sticky threads for saved information & links to other good info sites..
The Dr that my husband saw is Tim Tollestrup .

"The peripheral nervous system, which encompasses all the nerves in the human body outside of the skull and bony spine, sends signals to the brain, which is how people experience pain. Tollestrup says he can often pinpoint the source of a patient’s pain by identifying damaged, pinched or stretched nerves.

Because imaging studies do not reveal most nerve problems, Tollestrup combines a physical examination with his knowledge of peripheral nerve anatomy to make a good diagnosis.

“(It) allows me to identify the injured nerve and formulate an appropriate surgical procedure to correct the problem,” he says. “Once I’m inside I can see a nerve is swollen or larger than normal … another abnormality is that the nerve becomes infiltrated with fat tissue.”

“The vast majority of CRPS patients are just people who have one or more injured peripheral nerves, which no one has been able to diagnose,” Tollestrup says. “It required two separate operations to address all of the nerve pathology in Jason’s right leg. The operations basically consisted of multiple nerve decompression surgeries.”

" Either through peripheral nerve decompression — where he creates space for nerves to function properly — or by segmental denervation, which involves cutting a nerve to interrupt the pain response, Tollestrup says he is often able to eliminate chronic pain."

Peripheral nerve surgery offers relief from chronic pain – Las Vegas Review-Journal

Nevada Nerve Surgery: Dr. Tim Tollestrup's Surgical Options for Pain


"Complex Regional Pain Syndrome, CRPS, formerly known as RSD Reflex Sympathetic Dystrophy, is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. "

What is CRPS? What is RSD? - American RSDHope

Thank you for the link and the info.

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Old 01-07-2018, 10:59 PM   #6
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I am using Ketamine topically. I have a 5% Ketamine cream that I apply to my foot (my most affected area) as needed up to 3x a day, and it really does help. No one has offered the IV Ketamine, I believe they tend to wait for that as a last ditch effort around here. I've been offered Pamidronate (sp?) as an infusion.
I have read many accounts of Ketamine infusions being very helpful, but that they also have to be continued at certain intervals. I don't know that W/C would pay for it, but you can always ask (If your treating doc feels it is appropriate).

I did have a doctor talk about peripheral nerve surgery, but he also cautioned that it would likely be of limited use. Plus, any surgery w/CRPS brings along risks of spread, so that has to be considered as well.
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Old 01-12-2018, 04:51 AM   #7
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I just requested Ketamine from my PM, who told me "No one is doing that anymore."
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Old 01-12-2018, 05:58 PM   #8
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Jo*mar

“A few did have wrong diagnosis of RSD/CRPS or had secondary factors, like pinched nerves or other nerve issues..
One member went years thinking they had RSD in ankle , finally went to a chiropractor and ankle was adjusted and fixed the problem..
It is important to rule out anything that can be ruled out by testing, blood work, bodywork or adjustments...”

My husband was hurt four years ago on the job. He’s had two surgeries. After his second surgery (in 2016) his doctors stared to suspect CRPS and shortly thereafter DX him with CRPS . Unfortunately this is not a wrong DX ……My husband has a normal left foot/ankle and a red, inflamed , shiny, hot/cold , angry right foot/ankle that can’t be touched . Even putting on a sock causes him a tremendous amount of pain.

CRPS has taken my husbands life away. He used to golf, ride his bike and run, now he uses a cane and can’t even walk across the livingroom without pain. I hate what CRPS has done to my husband.

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Old 01-12-2018, 06:05 PM   #9
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Quote:
Originally Posted by Becca71 View Post
I am using Ketamine topically. I have a 5% Ketamine cream that I apply to my foot (my most affected area) as needed up to 3x a day, and it really does help. No one has offered the IV Ketamine, I believe they tend to wait for that as a last ditch effort around here. I've been offered Pamidronate (sp?) as an infusion.
I have read many accounts of Ketamine infusions being very helpful, but that they also have to be continued at certain intervals. I don't know that W/C would pay for it, but you can always ask (If your treating doc feels it is appropriate).

I did have a doctor talk about, but he also cautioned that it would likely be of limited use. Plus, any surgery w/CRPS brings along risks of spread, so that has to be considered as well.
Is the topical Ketamine a spray ? My husband can't use any creams or lotions because his foot can't be touched.

Did your doctor say why the peripheral nerve surgery would be of limited use ?
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Old 01-12-2018, 06:52 PM   #10
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I just requested Ketamine from my PM, who told me "No one is doing that anymore."
hmm interesting.....

This is from a resent article in The Reno News and Review :

" At least two companies—Johnson & Johnson and Allergan—have ketamine in late-stage clinical trials. Frey and Watson are closely following this movement right now. When the major companies bring ketamine to the mainstream, it will mean big changes for small practices like Sierra Ketamine Clinics, including different ways to ingest the drug without an IV—perhaps nasally or sublingually. Ketamine, which is already considered a relatively inexpensive drug, will also likely become much cheaper. "

Reno News & Review -

Is ‘K’ OK? - Feature Story - Local Stories - December 21, 217


Dr Fry and Dr Watson run Sierra Ketamine Clinics and is were my husband would be going for treatment.

Welcome to Sierra Ketamine Clinics

Did your doctor say why "No one is doing that anymore" ?

Last edited by Alice P; 01-13-2018 at 01:53 AM.
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