[Alice P]

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

[catra121]

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.

[Alice P]

Originally Posted by catra121

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.

[Jomar]

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..

[Alice P]

Originally Posted by Jo*mar

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.

[Becca71]

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.

[kirsti]

I had a ketamine infusion. First one pretty good but not great results. Second one, gave me a headache so we did not repeat it. If I had good results he may have started oral ketamine.
Good luck!

[CRPSinCT]

I'm new here and this is my first post, so...I apologize profusely if I'm doing it at all wrong.

I started IV ketamine in Sept. 2017 and have had 6 infusions. They have helped bring the pain down to a very livable, functional "3" and I haven't had a major flare up since starting.

If you have any questions, feel free to contact me.