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.

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.

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.

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.

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

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.