Thank you both.

Spike - The only prescription that I am taking at the moment that I know has given me relief is the amitriptyline. Soon after I started taking that, the burning became tolerable everywhere except my ankle. I did notice some relief when I was on fentanyl and oxycodone combined, but it was not enough to continue using it. Soon after I discontinued using it, I did have an increase in pain. A one or two point decrease in pain was not enough to keep using them in my opinion, which is why we decided to start tapering off.

Catra - I can understand your concern of not letting the doctors persuade me to go with any particular treatment. I have been to 4 pain management doctors, one psychologist, my orthopedic surgeon and of course my PCP. All except one of them have suggested that the SCS was probably the best way for me to find relief. Of them, only 2 of those doctors would have had some involvement in the procedure of implanting the leads, the first PM I saw and the PM I am seeing now. I don't think that this PM was excited about the SCS, I am fairly certain that he was more excited about my willingness to a medication that may help with some of my blood flow issues. I have given thought to the SCS for quite a while now. I did not want to go with it the first time it was offered, but the more I have been reading on it, and the more I am learning about it, the more I have been leaning toward making the decision to go ahead with it.

I don't really consider me having full body, but I have had the CRPS spread from my R. ankle to both legs, my left arm, my shoulders, neck, and upper back. Everything except my R. ankle is fairly mild and under control. I do understand the risk of aggravating the CRPS, causing it to go out of control, spread to other areas, become worse in those that it is already in. I am willing to take that risk for the possibility of reduction in pain, increase in blood flow to my foot/ankle, and maybe be able to put some weight on my foot again. It is not much fun sitting around with my foot elevated above my heart all day, every day just so it doesn't turn purple.

I hope you are both having a somewhat better day than you were yesterday. I know you both have been having a tough time lately.

That is so funny you mention the Terazosin because that is what I take after it was recommended during my consult with the Cleveland Clinic!

I took a long time before deciding to do a SCS trial and honestly I am really happy I did. My doctor uses the Boston Scientific Precision Spectra and it has 32 different electrodes on each wire. During my trial I had almost a 50% reduction in pain and I was very happy and surprised! I have decided to go ahead and have the surgery for the implanted device. I had several long talks with my PM before I made this decision. He reminded me that a lot of times what you read online is worst case scenarios. However everyone is different.

I hope this PM can help you because you deserve it! I will keep my fingers crossed for you!

50% Reduction is amazing...so glad you had such wonderful relief.

Yeah! 4th time is the charm! You must be so relieved and happy.

I'm so glad you kept at it! It gets so old seeing more doctors but once it pays off....whew!

It's wonderful that this doctor had some new med ideas. I think that is real progress. The terazosin is an alpha blocker and may very well help with both circulation AND pain. Damaged nerves sprout more adrenoceptors. And you never know where you'll be after decreasing the other meds. Opiates cause pain sensitization and some of the others cause swelling. Hopefully, you'll get some side effects relieved without much kickback.

Whatever you decide is right for you, I support your decision. I know you will go into this rationally. And who knows, it may not be forever. Sometimes patients have improvement, get out of their pain and get their implants removed. If you get improvement and can start weightbearing you just might get out of this!

Sending hugs for the day,

I have been waiting for this post. HAPPY, HAPPY, HAPPY! I'm glad you found a doctor you feel meets your needs. I have never said I would not try an SCS just not now. I am not in as much pain or have as much spread as you do. If I did I think a SCS would become an option. If you decide to go through with it I so hope the trial is successful and it all works well for you. The new med is interesting too. Thanks for sharing your news. ~mac

It is wonderful to hear that even after several PM's you can still find one who will listen!

I agree you should do as much research as possible into each treatment option. I would also research how many successful SCS this doc has done, and what his complication percentage is.

So glad you have some new directions

I have been going back and forth, asking myself a lot of questions and doing a lot of research over the past few weeks since my PM made the recommendation of moving on and having the SCS implanted. The more I researched, the more nervous I became about the whole idea.

In another thread, I mentioned that I took the required class and went to see the pain psychologist last week to start the whole process. The results went over to my PM before I met with him on Tuesday. Apparently, I have some psychological issues that need to be worked on before we can move forward. I was still very unsure if I wanted to go forward with the SCS. The psychologist just made the decision very easy for me.

I also brought up the insurance complications with my PM when I saw him. He still thinks there may be time to move forward with the SCS, but does not think that it is likely to happen in time. That does not bother me. As I said before, I was not sure if it was the right thing for me. Over the next month he is going to go home and do some reading on trying to figure out how we are going to proceed with treatment. He asked me to do the same.

I have a doctor who is willing to listen to me, and do more research to help me, some of which is based on reading that I recommended. We are tapering off of the MS Contin, since it is not helping at all. I am completely off of the Neurontin. I am to continue on with the Amitriptyline unless the psychologist gives a better suggestion, and keep on with the Terazosin. Next month we will see what happens.

That's good to hear and I'm really happy that it looks like you have finally found a good fit. Hope the new med helps you. I remember when I couldn't stand or walk at all and that was a really rough time. Take care and keep us posted...you are in my thoughts.