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.
:)