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Originally Posted by daniella
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.
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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.
