My daughter had well over a dozen blocks both stellate and brachial with no good results. The only thing that has proven to work for her over the past 2 yrs has been ketamine infusions. You have access in NJ to some great doctors. I would explore that option while this is all in the early stages. There is a ketamie list at this site and FB has a great resource in Ketamine Klub.

Liz

Hi, It has been almost 4 months since the accident where my wife broke her fingers and 2 1/2 months since the cast came off which is when she was diagnosed with RSD. Her pain is well managed with a pain level average of 2 to 2.5. She has low pain levels of 1.5 and flares of 3.5. This is a big improvement because when she started RSD treatment, her pain level was a constant 6 to 7. The joints in her fingers are still frozen and swollen. Her fingers now rarely change colors but is a different color than the other hand and now rarely has the burning shooting pains. She takes lyrica and the clinodine patch. Topricin is used nightly as a gel for her fingers. She has PT 3 times per week and sees a chiropractor 3 times per week. She had 4 Stellar ganglion nerve blocks where her hand got warm for a day for each but were pretty much ineffective. Prescription anti-inflamatories appear to be ineffective and pain levels remain the same if she takes them or not. She has made very little hand movement progress but can now use scissors and other tools such as staple pullers. Her pain management doctor says he can't help her anymore other than provide the medications.

What do RSD sufferers typically do at this point? Does one search for another doctor or one of the NYC RSD specialist? Does one go for a Spinal Cord Stimulator? Does one go for ketamine treatments? Does one try more nerve blocks? Or does one do nothing and keep doing what we are doing now? She would love for this RSD to go away and to regain total use of her hand. We are just curious what others do when they reach a level of good managed pain levels.

Sorry to hear about your wife's situation. I know how rough it can be. Of what I know through my own experience is that there's no cure as of now and we mostly are managing the pain with treatments and meds. Nobody seems to have a handle on why some people get it and some don't. Just how we get it. In the same fashion we don't know how to get rid of it completely but only how to treat it.
Every doctor that examines me comes to the same conclusion. 'The only thing that they can do at this point is manage my pain with meds'.
Good luck to you both.... :grouphug:

I am very happy to hear that your wife's pain is being so well managed. It's really up to the individual to decide where to go at this point. There is no cure...but remission is possible. Since she has only had this for a (relatively speaking) short time remission is far more likely for her than for those who have had this a long time. Of course, she needs to really weigh the risks of the various treatments...but it may very well be worth it for her to continue aggressively treating this with either blocks or ketamine in combination with continued physical therapy to keep that hand moving. At the very least I would strongly recommend the continued physical therapy. Her pain levels sound like they are low enough that she should be able to do this and gradually, over time, regain the full use of her hand and perhaps go into remission.

If further aggressive treatment is the way she wants to go, then you need to find a new doctor as quickly as possible who is willing to work with her on this. No sense to keep going back to the same one if he says there is nothing more that he can do for her besides managing the meds if you are looking for more. There's no guarantee, however, that you will find someone who is willing to do more (I don't know the specifics of your wife's case and medical history).

But if nothing else...definitely keep her going with physical therapy for her hand. This doesn't mean that you necessarily have to go to a physical therapist the whole time (you may only be allowed so many visits) but there should be exercises she can do each and every day to improve the function in her and.

Good luck to both of you...I sincerely hope that she is able to get back full function in her hand and that the pain continues to be well managed.

Hi,

I am so sorry to hear about your wifes injury to her hand. My adult daughter developed CRPS resulting from surgery to her hand and arm in
2008. I offer one word of caution. My daughters surgeon suspected right
off the bat she was developling CRPS so within a few weeks he sent her to
a pain doctor who gave her a nerv e block. She did not seem to have
a postive reaction and because of this the pain doctor did not believe she
had CRPS and so much valuable time passed before an nerve conduction
test confirmed CRPS. Thirteen or fourteen months passed before she
received another neve block, the second one helped with some of the pain
but due to the length of time passed it harms her changes.

I am glad her doctor is going to try another block soon. So many doctors
use the prodedure to see if there is reaction and if not thinks the patient does not have CRPS.

Good Luck with the next one.

Joydee :)