Long story short, (and a few of you have already read the very long version, so I'll spare all of you) I developed CRPS in my left foot after surgery in Oct. 2010. Nearly right away it spread up my left leg, jumped across to my right and is spreading down that leg now too (thankfully my right foot has been spared, so far anyway). Currently on significant med "cocktail", and I will have my third lumbar sympathetic nerve block done this coming up Thursday. I really don't know what to expect after the third one... My doctor has told me that I'm right on the fence time-wise for the blocks to work completely, potentially putting me into "remission" of sorts. But I'm just trying to plan ahead, in case these blocks don't turn out to be my "lifesaver" after all.

Anyway, back to the matter at hand- I'm curious as to what you all have either experienced, or are being told by doctors is your "game plan" or even what y'all have read- Bottom line, I'm trying to get a REAL sense of what the best course of treatment is, especially after medications, and sympathetic nerve blocks have failed provide sufficient relief.

So far, here's the different treatments that I've either discussed with my doctor, or read up on myself...the kicker tho, is that there doesn't seem to be a general consensus as to the ORDER in which these pain interventions should be tried. (I think due to the fact that some may offer better chances of relief while being more risky if it fails, or the opposite, etc).

So here are some of the common therapies/pain interventions that I've heard about, if anyone has knowledge or experience about any of them, or the order in which they are tried- (which would vary from person to person I'd think) would be great. Just any info or insight would be so greatly appreciated- Thanks!!

(typical medications- neurontin, etc,
sympathetic nerve blocks- both usually the first things tried)

ketamine infusions
spinal cord stimulator SCS
intrathecal pump
water-based physical therapy
etc..?

It's just so hard to figure out the "whats" and "whens" of all this...(as you all are already aware of, I'm sure)

One other question for you all, especially those who have had success with never blocks- did you stay on your same medicines after the blocks? Because I wonder if part of the success of the blocks is maybe due to the combination of the block itself, and the medication already in the body's system... Just a thought.


Thanks everybody!!!

Sorry Snow.....I just can't do a long reply right now, but......

Welcome to NT ! Sorry that you have cause to seek us out, but glad you found us !

I think starting with Neurontin or Lyrica and PT are definitely steps one and two (although not necessarily in that order). Gentle water PT and PT to desensitize should be the choices, but too many of us end up making things worse by overly aggressive PT

Beyond that, it seems to depend on how knowledgable your doc is and how reasonable your insurance is.

WC is not so reasonable, so I'm stalled on the treatment steps

My doc is starting with four blocks, the third of which I had two weeks ago. This week's appt was about how to stiffen my spine in the midst of the war with work comp. He is so mad, but trying to help me get it resolved and continually encouraging me that I need to stick it out, because my claim is valid.

Not helpful is my reg physician, I think he might have personal issues because he is becoming offended if I even ask about something I've
researched and isn't too agreeable on this RSD diagnosis. I believe he
thinks it is in my head.

My next neurologist apt we will schedule my final block, and I hope it works as well as the second and better than the first or third. My feet are becoming permanent shade of purple, red, or black it seems.

It seems to me that everyone's schedule or plan seems to depend on the dr, the ins, and if involved work comp. I'm not sure i've read of two people who have had the same treatment plan.

Hope you have a doc you have confidence in.
pat e

Now of course everyone is different so you have to do what you feel is best. I do get confused why doctors keep preforming blocks when they are not working? I have seen a couple different rsd pain docs. Each seem to have there "thing" I call it that they do. One may have the blocks,another the ketamine,another the scs. I feel that if 10 different people came in they would still say the same thing regardless cause that is how they treat rsd. My best pain doctor who was not like that and really looked outside the box stressed how it is important to start less invasive and work your way up. I have had a doctor before this who before even a block or many meds he wanted to do a scs. I feel it is very important since at the start of this I saw 3 pain doctor who deal a lot with rsd and I got 3 different procedures to do that one thinks about a procedure before they do it to make sure it is right for you.
What I was told at Cleveland Clinic and now this can be wrong too but the pump is one of the last things they like to do. PT,meds,blocks are usually one of the first. A scs or ketamine could be a next step. Though for me I was going to have the scs but because my pain increased with the blocks my doctor felt the scs may too.
Sorry I don't have concrete and I really feel there is not with rsd treatment. What works for me for ex may not work for you. That is why when doctors just have their one thing they do and do that for every person with rsd I think it is wrong.

Daniella-

I think you're totally right about each doc having their own school of thought as to how to treat "us", and each have their "favorite" procedure. As far as Ketamine goes, I can understand why some docs still not do perform the infusions or even mention it as an option, because it is still a fairly new treatment, as far as the medical community as a whole is concerned. However, I think it's still the responsibility of those docs treating RSD/CRPS to at least make their patients aware that Ketamine is an option to look into, even if they don't personally utilize that particular treatment.

My predicament is that I think I may also be developing side-effects from my nerve blocks (so far have had 2, 3rd is being done this Thursday), but I don't know if this new pain is due to the blocks, or if it's from meds, or simply the disease getting worse. So considering all these other factors, it is just as likely that this new pain has nothing to do with the blocks after all. Either way though, my doctor and I still have a lot of work to do to get me to where I need to be...pain-free, or at least close to it.

On my first visit with my current doc (I went through a few before I found one who even had a decent understanding of what CRPS even is- also during my search for a good doc, I read as much as I could about the disease, and different treatments, so I'm at least somewhat knowledgeable about them), anyway, we talked about meds first (obviously). Then we discussed the need for the blocks ASAP, because of the potential they have to "nip it in the bud" if done within a short time-frame after onset of disease- which is agreed by most to be true. The issue though, is that I'm "on the fence" as far as that time-frame goes, so although my doc is optimistic, and is doing the blocks to at least give me a shot at significant relief, even if it isn't long-term as it could have been (if I'd found him sooner).

I have received some relief from the second block, but that only lasted about four days-ish. However, thinking back, it was around the time of my first block that a new sort of pain started...terrible pain and stiffness in the back of my legs (distinctly different than the original CRPS pain- which is still there, mind you) and also in my hips and knees. Now yes, because of this I am pretty sedentary, but for it to come on so abruptly without any changes in activity level, it's hard for me to believe that it's due to lack of activity, or anything like that. So I am concerned that it is somehow linked to the blocks I've had.

Also, when my doc was discussing the "battle plan" he explained the next step option of a spinal cord stimulator...and I'm thinking that it's probably, like you said, his "thing". However, after reading about them, and pumps (as they're both implanted type devices) that they can actually make the pain worse, either after the procedure, or they recieve relief for a while, but when it's removed their pain not only came back, but was much worse than it was in the first place.

And lastly, I just don't know that, if it comes to it, if I should stick with my doc's advice and try the SCS next, or if he doesn't do Ketamine infusions, if I should find another doc who does..? Also considering that I've just read recently that Ketamine is most beneficial if the treatment is done within 6months? or one year...I think it was 6 months, but either way, it's so hard to know/decide what to do when your doc doesn't offer either the option to perform or at least share information or referral for *all* the current (accepted) treatments, especially when time is a factor.


GRRRR- the "Beast" gets harder and harder to deal with as time goes by...


But again, thanks for the info, and keep 'em coming if you would, and I promise to as well.

Hey there -

In regards to ketamine - for me it has been extremely effective - and it was about 3 and a half years from the time of my injury before I started the infusions. In the meantime, I had had 2 surgeries and almost 200 units of PT, 8 or 9 blocks, 8 lidocaine infusions, more meds than I can remember, etc.

So sure - it may be better statistically if you are able to get ketamine infusions within 6 months of the onset of your RSD. But many of us just aren't able to do that, and we still have good results. And besides, it can take that long (or even longer) just to get into some practictioner's ketamine programs. So don't give up hope.

Good Luck, Sandy

Hi Snow, I just had my SCS implant done and so far the results have been very good. I have actually been able to reduce some of my meds already. I was diagnosed very late in the disease process, so I did not have much success with the nerve blocks, but this has been the best thing yet. I really can't tell about the back pain yet because of the surgical site pain, but I have not had to wear my brace since the SCS was put in.

Hi. I'm getting lazy in my old age, so pardon the lack of official citations. That said, I think the only study I've seen showing that SCS put CRPS/RSD into remission was one out Sweden - on children and/or early teens - who are the most likely to go into remission anyway. That, and it's well established (check out the RSDSA site) that SCS typically works for no more than three - four years. What I don't know is whether the "cortical-reorganization" of CRPS continues apace during those three to four years: I've never seen a study on the subject and would have noticed it if I had.

Were I in your shoes, I wouldn't chance it. Which I guess means finding someone in your area (possibly Madison if you're lucky) and going for it. I understand that Jim Broatch of the RSDSA keeps a current list of those providers, but others here will know better. You would obviously want to check out any providers carefully, including the efficacy of the procedure they are doing for your situation, e.g., 5-day "low dose" in-patient infusion v. 10 days of out-patient infusions, typically 200 mg. ketamine/4 hour infusion.

Bottom line: if there's a better than even chance that ketamine w/in 6 months of the advent of symptoms will knock this out once and for all, I would put everything I had on it, and then accept whatever happens, one way or another.

Mike

I know it is not an option for everyone but if you are thinking of doing the scs I would get another opinion. That is what I did which led to the 3rd opinion since both said conflicting. I know a couple people who have had a scs. One it gave her life back but she tried everything before this. Another has had problems with it. It is hard to know and a personal choice. I will say it can take time to get on the right meds and doses. Also with blocks and meds it sometimes can be hard to know what is helping an not. I have flares where it is not from anything I am just having new symptoms or more pain.
As for ketamine I have mixed feelings on this. I think there is not enough long term data. I feel they don't follow up enough on people who have had it. That is concerning to me.
As for the time issue will obviously sooner is better then later since I think your brain becomes more sensitive to pain but I do know for ex that girl with the scs who had this condition for many years and then got the scs and now is doing well. Again not saying to do this or not cause for me I am not. I just don't like feeling the pressure some doctors give to try something
I hope regardless of what you do you get relief

my boyfriend has done the blocks, water PT, has an SCS and is now trying the ketamine infusions with no luck at all..His dr. told us for him the ketamine was pretty much the last thing to try and we have seen no positive or negative effect yet..