I know that you are seemingly out of options, and are considering this SCS pump. I do follow these threads how ever on this issue. From an "outside" viewpoint, I think I would have to do more research on it. The problem it seems to be is that patients for the most part are not allowed to program their own devices, and therefor find what really works to help. It is 50 quesitons from the programmers. Since it is YOUR body experiencing the pain, it should be your right to help program the device. You are the one that should be in control of your own body. To be dependant on anothers idea of what works wouldn't be good enough for me. I have some kind of thing traveling up my leg. I am not sure what is happening to me yet. If I were in those shoes, I think I would have to go to the ends of the earth, to gain the knowledge and skill it would take to program my own device. I am strickly an outsider Kelly. The trial is a good idea, it is just the idea I don't like about not having enough control yourself. It is bad enough your pain is out of control. Would you talk to your doctor about this? I am not againsts it, really I am not, I know you suffer. It is just the way the whole industry is that I object too. tDCS is another thing I heard of. I may have gotten the letters wrong.
This is a device you can monitor yourself from my understanding so far. I am just in the beginning states of research right now. I do wish you all the best, and I am so sorry this happened to you, to put you in this situation. What ever you choose to do, my best wishes and prayers are with you. ginnie

I can't tell you how glad I am that things are better for your friend. Now I will sleep better!!!!!

Dear Kelly,

My heart aches for you. I can only imagine the frustration of needing so many drugs to control your pain, drugs that preclude pregnancy. Having a spinal cord stimulator implanted is certainly no guarantee that those meds will be decreased or eliminated. I am very concerned that your doctor told you that the trial surgery is not invasive. It is more concerning, however, that you do not have the knowledge base to know that he is wrong.

You have certainly been through the ringer with treatments and medications, but your list is by no means exhaustive. The very fact that you doctor has offered you nothing else is a huge red flag, particularly given the fact that you are so young and want to become pregnant.

You need a doctor who can provide you with answers, not one who you need to educate and hope he agrees. If you were my daughter I would beg you to put the trial on hold until you have become an expert in you condition and all of the treatments, particularly non-invasive methods that are available to you. If you were my daughter I would also encourage you to pick up the phone and call Dr. James Fugedy to schedule a consultation to review your history, and develop a treatment plan that will not only control your pain, but result in a safe pregnancy. Not only is Fugedy at the top of the pile in terms of intractable pain management, but he is very knowledgable about CRPS and pregnancy. In addition to that he is the most caring and committed doctor I have encountered in my CRPS journey.

And yes, he will speak with you personally, even though you are not his patient. There are not many doctors who will do that!!!!!

It can't hurt to make a call! (470)234-8315

Ballerina.....You offer Kelly very good advice. I had an unsuccessful trial stimulator and found it to be a bit more invasive that had originally been lead to believe. The thought of a stimulator for someone wanting to get pregnant doesn't not sound like the best idea. I feel, like you,a more and better qualified doctor looking for her best interests needs to be seen before doing anything like a stimulator.

Even the doctor that did my trial stim wanted me to have surgery that was in my future done before he would even consider putting a stim in me. Did not think a good idea to have something done that might affect the stim. He felt the surgery might just do that (bladder surgery). Again, a pregnancy would be really something to think about before a stim would be implanted.

Gerry

Patient programming of spinal cord stimulators has no effect on failure prevention or the many other side effects associated with implantation if one has CRPS. Patient programming is likely to be more successful for conditions like failed back syndrome, a condition for which the devices are recommended and approved by the FDA.

Kelly, If you have not been presented with any other options after having CRPS only since 2009, particularly given your age that means one of two things, or both, ignorance of other treatments, or a reluctance to offer treatment that can't bring in the revenue that SCS can.

It is great that you are seeking other treatments, but not good that, for whatever reason, your doctor has nothing else to offer you.

Prior to my SCS failure I was still taking high doses of meds. The meds were decreased but still at levels to form physical dependence. After the SCS failure the meds returned to pre stim levels due to severe spreads caused by the SCS. I became addicted to narcotics and required inpatient hospitalization to withdraw and it was very rough, an experience I will never go through again. It was worse than any CRPS pain I have ever felt.

Regarding SCS trial there is absolutely no relationship between a "Successful" trial and a successful outcome if you have CRPS. If there were there would not be so many people like me.

It is very upsetting to me that your doctor could suggest that the trial is not invasive. He is not being truthful with you.

The good thing is that you don't have to make a decision about having the trial today, tomorrow, next week or next month. There is nothing wrong with asking for a postponement until you have time to give the procedure additional consideration.

If your doctor doesn't understand then that should tell you something additional about him.

Since your ultimate goal is a baby and remission than find a doctor who can offer treatments more likely to offer remission, (SCS don't offer remission) and get you off narcotics.

I will keep you in my prayers.

The outsider here, I liked your post. It does seem like Kelly isn't being offered enough other options. What are the other options she has? The more I read about this the more confusing it gets. You are right about one thing that is for sure, it is invasive....it is not minor to have done. I don't want people with RSD to be in terrible pain either like you, Mark so many others. It is just I don't seen enough in the research that shows anything else. Since I am developing some kind of very odd pain, I am also thinking about my future. Ginnie

James - I want to again add my comments here. Kelly has gone through various treatment options, I do not know what is left other than the SCS...or the tDCS that you guys push. Her dr recommending the SCS at this point is not necessarily a bad thing, not every dr pushes them out of greed. Some actually do recommend them because they truly think it is a good option and treatment plan for their patient.

As I stated previously in response to one of ballerina's posts here...this statement about no relationship between a successful trial and a successful outcome if you have CRPS is not true! I am one of many RSD/CRPS sufferers who have had a successful trial and permanent implant. Mine has stopped spreading since my implant, pain is reduced greatly and color is better. I don't know about you, but I call that a success.

I did not think the trial was that invasive, yes it was painful and restricting. The permanent was definitely invasive. The dr is probably going by the definition of invasive...Definition of invasive (of surgery) - involving making a relatively large incision in the body to gain access to the target of the surgery, as opposed to making a small incision or gaining access endoscopically through a natural orifice

I do not know about having a SCS and how it works with pregnancy, but you guys need to stop speaking for everyone and just speak for yourself. Don't make statements that are untrue, it is not fair to those seeking honest support and insight.

Nanc

Nanc......I can speak about my trial which lasted what seemed forever and laying in the position I was in without almost no anesthesia was prolonged and painful. The rep tried to program the stim for quite some time before I could leave recovery area and go home. He finally had me standing while trying to program again and again. Standing in one spot for me is quite painful. Does that mean it will happen to everyone NO !! I was not going to sugar coat it either.

Actually, my concern for Kelly is the fact she is hoping to get pregnant. Her doctor may be qualified to work with her pain; but how qualified is he to know that a stimulator is okay for a pregnant woman? I believe that question needs a very qualified doctor to answer.

Ger

That was my concern too with the SCS. What trials were conducted when pregnancy was involved. I have found nothing in the research to justify using it on a pg woman. I have have dug deep. ginnie