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

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 :confused: :. My husband and his lawyer will be going to a hearing this month to get it sorted .

Thank you for responding.

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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..

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.

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.

I just requested Ketamine from my PM, who told me "No one is doing that anymore."

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.

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 ?

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" ?

Hello and welcome Alice,

I'm so sorry your husband and family are having to deal with this. We all know how frustrating, exhausting and anxiety producing it can be searching for answers.

I'm in the unique position of having had both ketamine AND peripheral nerve surgery. For myself, both were the right decision. I had a nerve injury in a "minor" procedure that caused a traumatic neuroma that didn't show on nerve conduction. It was when a fellowship trained peripheral nerve surgeon (trained at Washington University) went in that the problem was found and repaired to the degree possible. I already had symptoms of CRPS at that point. I was in such pain they didn't feel they would make me worse. The difference after having nerve surgery was immediate and significant. I felt relief quickly and the color of my foot became normal for the first time in 9 months.

My CRPS symptoms returned after a later procedure. I believe partly because it was on the sole of my foot where there are a jillion sympathetic nerve endings. After several months of only minor improvement I pursued ketamine treatments. My doctor uses a sub-anesthetic dose and it isn't a five day protocol. Results built over time and allowed me to pursue rehab more aggressively. It wasn't a quick fix but I credit it with changing my outcome entirely. If you search on the forum for ketamine posts made by me an entire thread about my experience should come up. I need to update it. Still doing great!

I have also posted some on peripheral nerve surgery. There are cases where the CRPS was caused by a nerve entrapment or injury that was amenable to repair. The skill and training of the surgeon is important as well as having anesthesia geared towards CRPS. I would recommend looking into getting a "scratch collapse test" done. The PN surgeon may be familiar with it. It is a test of reflexes used by Dr. Susan Mackinnon from Wash. U. Mine was positive before surgery and negative now. Really interesting.

Making decisions about treatment are so highly personal. Get as much information as you can and do what feels right for your husband.
There is hope. 80% of CRPS cases improve over time. It can take trial and error to find what makes the difference.

As for me- I get a booster of low dose ketamine by infusion about every 6 months now. I still get a little symptomatic sometimes. However, I bike, run, swim and completed two 5k's last year. That was after a year on a scooter. I am admittedly a stellar outcome that may be atypical. But even if my results had been less impressive the relief would've been worth it.

I wish you and your family the best and hope your husband finds relief soon. You are welcome to PM me if you have specific procedure questions.
:hug:

No, he said nothing. He did suggest nerve blocks, which three years in seems strange to be offerring for the first time. I refuse to do anything invasive, because the gamble is too great. LDN got me out of bed, but it did not put me into remission and it has no down side. The PM won't give me that either. I got it through my ENT, who just retired. Fortunately, a neurologist I saw probably will give it to me.FYI, imo the compounded LDN does not seem to be as effective as the the LDN I mixed myself. Since I have been on the prescription my CRPS has spread to my hands, my headaches occur much more often and my fatigue is much worse. I tried going to aqua PT and going to the gym on alternate days, it's too much. I don't get energized by either activity. I literally drag myself home afterward. The neuro I saw ordered many blood tests-on paper I am the picture of health.

Yep, my Dr. Tried a ketamine infusion
 

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!

Littlepaw,

Wow, I hit the jackpot with your response! Yes, CRPS is really hard on the people that have it and those who love them .

I do know that Dr. Tollestrup has had really good results treating CRPS patients with Peripheral Nerve surgery . He also does a surgery called Segmental Denervation, which involves cutting a nerve to interrupt the pain response. I’m glad you had success with it. It must have been a HUGE disappointment when the CRPS came back after your other procedure. I can’t imagine the stress and emotional rollercoaster that you went through with that realization !!

The Ketamine is something we are really interested in because its non invasive and it seems like people are having really go success with it. Good to hear that you’ve had success with it as well. I think at that clinic here in Reno they do four treatments over a few weeks and then if needed, maintenance treatments. Some people have a complete recovery (remission?) and don’t need any further treatments.

I really want to do some research on nerve entrapment and "scratch collapse test". My husband has an appointment with his doc at the end of the month so will ask about both of this things.

I’m SO HAPPPY to hear that you are riding your bike, running and swimming !!! It gives me hope for my husband. I just want him to be pain free and happy again .

Thank you so much for reaching out to me and sharing your story. I greatly appreciate the information. All the best to you.

I'm sorry to hear that you are having such a difficult time right now. CRPS sucks !! BIG time !!

I don't understand why your doctor wants to do a nerve block, its my understanding that a nerve block for CRPS is only good for a newer injury. My husbands PM just suggested he do another block and my husband told him no.

I'm not familiar with LDN .What is it ? Good to hear that its somewhat working for you.

Try to hang in there :hug:

The Ketamine is in a cream. And yes, at first it took a LOT for me to manage to touch my foot. But bear in mind that desensitization is also incredibly important for improvement in the condition. There are articles about it on some of the RSD/CRPS websites. It is through desensitization that I have been able to weight bear on my foot, wear a super fluffy, loose, chenille sock, etc.
At first I could barely apply it, so I only did it very lightly on the worst areas. Then my doc had me get lidocaine cream and apply that first and it helped a lot. You can get that OTC (so even if you can't get the Ketamine, I recommend the lidocaine). Its sold as Anecream 5% (its for hemorrhiods, but that really doesn't matter). Its very lightweight so easy to apply with barely touching. I find it cooling and very lightly relieving.

It is SO important to do things to touch the affected area in just tiny tiny bits with soft things (like cotton balls) for very short periods of time repeatedly every day. Like say, three times each day touch the affected area with a cotton ball for 10 sec. 5 x. After a week, increase it to 10 sec. Do what gets up to the threshold of about to worsen, not what actually flares.
A good PT with experience with CRPS can guide him with desensitization.

We have never heard of desensitization for CRPS but it makes perfect sense. I will do some research on it . It might take some convincing on my part because my husband will NOT let anyone/anything touch his foot/ankle. But I have no doubt he will see the logic in it . I was thinking about getting some lidocaine. I think it comes in a spray as well but I can't remember ( we used it on my mom when she had shingles).

Its REALLY good to hear that you are able to wear a sock, put weight on your foot etc.

Thank you so much for the info.

It isn't easy to convince yourself at first to touch, or allow anything to touch, the affected part. One lesson they started with me right off the bat. It isn't your "bad" foot, and good foot. Its your "Affected" foot and "unaffected." Because so much of this lives in the brain it is very important how you think about it. Sounds dumb but it is true.

Tell him that when you start always touch the unaffected limb first and focus on how it feels. Soft, fluffy, etc. And reminding the brain that it is SAFE. Then you touch the affected limb, for whatever amount of time (even 5 seconds) and think about the actual sensation, and remind your brain that your limb is safe. LOOK at what you are doing so you KNOW it is just a cotton ball. Then stop for however long you need (5 mins?) and touch other foot with cotton ball focusing on the texture/feeling and that it is SAFE.

All of this is about retraining your brain, teaching your brain that these textures and feelings and things touching the affected area are safe, and that your brain is lying to you when it says that they are not. The brain is "plastic" and can re-wire to a certain extent. Can't completely fix the CRPS, but you can work around some of the false pain signals the brain is sending.

Reading your post made me cry…..I think its because I’ve seen my husband’s life become so small….

I have done some research on this and its something he’s willing to try. One of his doctors spoke with him about it and gave him printed suggestions/instructions in how to do it.

You are RIGHT about bad vs affected, reminding the brain that it is safe, always touch the unaffected limb first and to look. Thank you for these tips !! His doctor never mentioned any of this !!

yes, I'm in IV ketamine treatment
 

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.
:)

My husband did fucident nerve blocks for about 4 years, it did reduce his pain a little, there were times where the dr missed and he would be in worse pain for a week or so. I will say he stopped the nerve blocks about 6 years ago. He now feels pain on the injection site quite often. If he had the choice to do them again he says he would not.

Also the search tool is handy to find past posted info using keywords.. if looking for a specific topic it is great..
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