Hi there,

I’m new to NeuroTalk and for that matter CRPS. I was diagnosed four months ago due to break to my right wrist. Within two weeks of being casted unfortunately things were compounded by separate injury to my left hand, thus the symptoms have now spread to include both arms, both legs, the back of my neck and my face. Though my orthopedic surgeon was prompt in suspecting CRPS, the spreading of symptoms has made it very difficult to treat. I’ve had numerous nerve blocks in both my upper and lower extremities with no lasting results, so I then flew to Florida to have a 4 days of Ketamine infusions followed by heated pool exercises 3 – 4 times a week. The infusions did provide some relief, however they didn’t put me into a remission as I’d hoped they would.

Because I live in a small city in Alaska the nearest pain management clinic is a 45min plane ride away, so needless to say I am feeling very alone. My pain management doctor is pretty vigilant about treating things very aggressively in the first 6 months and is now suggesting I have a continuous cervical epidural by means of a pump for 1-week in order to knock this down. I’ve discussed this with my doctor in Florida and he said that the procedure is very risky and to keep with the heated pool exercises and get a Ketamine booster when needed, but that means another plane ride across the country! With that said I am now really unsure. I really don’t have any doubts as to the capability of my PM doctor in Alaska, but I’m really scared about the possibility of spreading things further and possibly having a new source of pain. Therefore I was wondering if anyone out there knows anything about this procedure?

In the event I don’t do this procedure, I am contemplating doing a second 4 – day infusion with hopefully better results than the first, but was also looking for any information on this as well.

Thank you for your time, Denali

Pain Pumpers are kinda rare here, but they do populate this neck of the woods, so wait patiently, and they should be along momentarily..... I am a SCS patient who swears by the relief I know through my device.

May you ultimately be cared for well, feel comfortable regarding the results, and NOT ever have to fly the great circle route to Florida for pain management again. I also swear by pain management specialist, hanging on his every word, for I know he has my utmost care in his focused attention. Just FYI.....

Prayin,
Mark56

Welcome! So glad you found us

I am so sorry about the CRPS you are battling. It is a nasty condition and like you, I live in a smaller community where virtually NObody comprehends or understands what I am going thru. This is why I feel so fortunate to be a part of this forum. We all 'get' it and the support here is wonderful.

My heart goes out to you for the situation you are in. I wish I knew more about this procedure. Where does your doctor want to implant the pump? Alot of them are via the abdomen. Being only for 1 week, I see this as very similar to a 'trial' implant. You'd be able to get an idea if this is something your body would respond to. On one hand it seems intriguing and worth a try, but like I said, I know nothing about this and I can sure understand your concern Re: possible further spread.

It's so very important that you have the utmost confidence in your doctor who would be doing this. It would be very helpful to you if your doctor could put you in touch with other patients who have had this procedure if they would be willing to share their testimony.

You've posted a good thread and I hope it will catch the eye of someone who could give you some good feedback.

I'll do a google search and if I can find something that may be of help, I'll sure let you know.

Caring,
Rae

Thanks Rae,

I appreciate your feedback. The procedure my Pain Management doctor is talking about is to do a cervical epidural that will be placed in or around the C-1 / C-2 then it will be tunneled down and out the lower part and hooked up to a portiable pump i.e. a pump that goes were I go. I idea is that since the sympathic nerve blocks didn't really work, this was another attempt at cooling things down or possibly reversing things since I'm still in the early stages.

I was diagnosed with CRPS 4-months ago and it is pretty much generalized, due to a second injury and it now affects my upper, lower, and parts of my face. It does not affect my back, torso or abs. Therefore, one of my big concerns is that it could possibly cause a spread to my back and therefore be a new source of pain.

I'm really confused and scared, but I do trust my PM doc, but I also know that he treats so many patients that don't have CRPS. The only information I can find on this procedure is when it's done in advanced stages and people need to get into physical therapy. I currently have full ROM of all my extremities and am using a heated pool for therapy, so I am not wanting it done to get me into physical therapy, but rather to possibly reverse this. This is why I've been struggling to get more information on this.

Did the doctor in FL happen to elucidate exactly why this pump idea would be risky? Did he say specifically that the risk was, or included, the CRPS spreading?

How do you feel about these two doctors? If the second ketamine procedure doesn't work, is that doctor likely to ever see you again? Since you seem to like/trust the PM doctor in AK, and he's considerably closer, are you likely to continue seeing him in the long term regardless?

I don't know if any of this figures into your thinking or not; I'm kinda hoping it may help you think/reason your way through this decision.

I also hope Rrae (or someone) is succesful in finding more information about this pump procedure being used in this way.

Doc

Thank you for your feedback. No, the doctor in Florida didn't say specifically why it would be dangerous, just that a cervical epidural is especially risky, and that "when all you have is hammer, everything looks like a nail".

I guess the reason why I ask is that I'm still cought up in this "gotta get it revered by six months or it's not going to happen" that people keep telling me. My CRPS is generalized for the most part, and I'm not entirly sure this procedure would catch it all, though my PM doc says there's a good chance.

My BIGGEST concern is that this may make things worse and create a new pain source. But the "what if it works" is driving me crazy!! So, needless to say I sway back and forth and I'm scheduled for the procedure in about a week. Yes, I could reschedule, as I've done this already because I just couldn't get enough information.

sorry to hear about your rsd chronic reg pain. ive had it for 11 years have tried every thing .,now on have morphine inthretrical pump but still have to have ketamine infusions..the pumped worked for the first 5 years,but my body got used to the morphine. i hope you find something that works . I find a ketamine infusion sub cut for 5-10 days works best.

Pardon me while I pick my jaw up off the floor. I had actually typed that exact analogy referring to the FL doctor's treatment and admonishment. Then I deleted it.

From reading what you've had to say about it in your own words, I can't help but get the impression that you may be leaning (even if only just a little) toward the AK option. This may have to do with distance, or hope, or something else, or I could be reading that entirely wrong.

I also didn't get the impression that the epidural pump idea was the only tool in the PM doctor's 'medical bag of tricks'.

Nevertheless, the question still begs, why is the cervical epidural so risky in this case, and can you make an informed decision/evaluation without that information? Even more relevant, does the alluded to risk pertain to the spread of your CRPS or is it the usual risks of the procedure (not related to CRPS)?

There's a thread in the spinal forum now about other epidurals, the prevailing wisdom seeming to be that they should be done accompanied by fluoroscopy to make sure the needle is going where it's supposed to. Apparently this is not always done, and some complications are being attributed to that. It's not the exact same procedure (because of the pump) but there may be other discussions/threads about the procedure in the archives as well, and/or people who have experience/knowledge of it. (Same for the CRPS forum).

I also googled: cervical epidural risks

One article that stood out was a study from a medical malpractice insurance company (as opposed to a health insurance company) that concluded with some advice to practitioners for avoiding complications, including the aforementioned fluoroscopy. I do not know if any of this applies to your situation. It does not mention CRPS or RSD or pumps.
http://www.thedoctors.com/KnowledgeC.../CON_ID_000192

You might also try this search:
Google: continuous cervical epidural risks crps

I don't wish to sway you either way. I only want for you to be able to make the best informed decision you can, without fear or bad/lack of information. Pain, frustration, anger, uncertainty, fear... these things I understand.

Doc

Thank you for the information, I do appreciate it.

Yes, part of me would really like to work with a physican who is closer to where I live, and I have checked and read all the credintials of the anesthesiologist in Anchorage, so I do feel comfortable with his ability, and not so much with the complications of the procedure itself, though there are many.

My biggest concern is how this could possibly cause a spread of symptoms to the area and create a new source of pain, or even make my condition worse. I’m still in the early stages of the disease, although for me it is pretty much generalized, except for my back and front. My pain at this point is pretty much controlled by physical therapy and my meds, but again it’s only been 4 months. My doctor in Anchorage deals with 100’s of patients, but what I’m really trying to find out is “how many patients present the same diagnosis as me, has he treated with the same procedure and what was their outcome”?

I’ve come to a loss with doing searches on the internet, as the only information I can find relates to this procedure being done to allow people to get back into physical theropy. My doctor in Anchorage seems to think that this procedure will knock things down or possibly even reverse the CRPS, but I myself really don’t like the idea of doing invasive procedures unless I can have some idea of the outcome…does this seem too much to ask from a doctor?

Everything I’ve read about CRPS is that it needs to be a muli-team approach, so I’ve decided to call my general MD hear in Alaska and consult with her, in hopes that maybe she can give me a little more insight on how to obtain this information or possibly even consult with my doctor in Anchorage to get this.

It’s really not been easy and my doctor in Anchorage keeps saying the sooner I do this the better the possible outcome, so I really feel a time cronch as well.

Have you actually heard/read anything credible that suggests that it even could, or is this an irrational fear?

Why not come right out and ASK him? There's nothing wrong with that; surgical patients quiz their surgeons on that kind of thing routinely (or should), and for that matter, ask him why he feels this may do what he says. He may have knowledge unavailable to us. IMO, you need this information to make an informed decision, and you need all your questions answered and concerns addressed by ALL doctors about ALL procedures/treatments. We all do.

You'll never get an argument from me on that.

Excellent. Please update us. I think whatever you learn will be of benefit to others, whether posters or just lurkers.

Doc