Hello all,

As some of you know, I haven't been doing all that well, both emotionally and physically, lately, since my last PM completely gave up on me. He ran out of ideas, which was nothing more than throwing opiates at me, so he left me looking for a new PM team. Two weeks ago, I regained a little hope when I had a consultation with another PM that offered ketamine infusions at an outrageous out-of-pocket expense, only to have him tell me that my best bet was to try to go for SCS. There wasn't much talk at all about his routine of ketamine. It was all about his suggestion of the SCS, so my hopes diminished again.

Today, I had an appointment with PM number four. He went over my past medical history with me, ran his tests checking for temperature changes, skin changes, hair and nail growth changes..., basically the most thorough exam of all the PM docs I have seen so far. Then he asked me why I am still taking all of the meds if none of them seem to be helping? Good question. We are beginning to taper off all of my meds starting today. MS Contin is to be tapered down from 30 mg 4x daily to 30 mg TID starting today, then in 15 mg increments every week until I am completely off of them. Gabapentin is to be tapered down from 600 mg TID to 600 mg BID for a week, then 600 mg 1x daily for a week then completely off. Amatriptyline goes from 100 mg to 50 mg and I will stay there for now. He did give me the recommendation of going for SCS. He did say that he will give ketamine infusions if I really want to go that route instead, but thinks I would be better off with the SCS. We talked about both options, and as much as I really did not want to go the route of SCS originally, I agree with him that SCS sounds like it might be the better option for me. Tomorrow I get to make a couple of phone calls, one for the required class, one for the required psychology appointment, and I might as well call my insurance company to find out if there are any pitfalls I might come across with them. They use Nevro SCS devices, which are a high frequency device to eliminate the paresthesia that most SCS devices cause. The device uses wire leads, but I guess that due to the higher frequency, if there is a small amount of movement of the leads, the device will still work without any problems.

I did ask about LDN. His response to that was that they have tried that in the past with some patients with no positive outcome. He did mention that a previous patient of his that is now going to the Cleveland Clinic was put on a medication that has helped them called Terazosin. He was really anxious and exited to try to see if it would help me in any way. I guess it is primarily used for high blood pressure but it is supposed to help open the blood vessels and allow for more blood flow. I figured why not try. I have never seen a doctor get so excited before. He put on a great big smile and just kept saying "Oh cool, cool cool cool. This is so exciting. Cool, cool cool."

Today my spirits were lifted up again. I am starting to see some hope again. It isn't exactly the route I originally saw myself going down, but I feel like I am i good hands with PM #4

I'm am thrilled-Thrilled for you! I hope that you see great positive results. It is time for you to be rewarded with some pain relief. I have a question for you. Of all of the medications that you currently are taking, which of them provides you with the most relief. In my case, it is the Hydrocodone which has Amitriptyline. If I did not have that medication, my pain levels would be insanely high. There have been times when I've run out of medications and couldn't make it to the pharmacy promptly, and on those days... well, I know you too have probably been there, as all of us have with high and unwanted pain levels. Again, I'm thrilled that there is a positive path for you to travel in the hopes of great pain relief. I'm thrilled. I hope you have a pain free rest of your day.

I am very happy that you seem to have found a doctor you can work with and who has given you hope. I truly believe that finding the right doctor is so important...and the right doctor for one person isn't necessarily the right one for another. Good luck and I hope that you are finally in the right hands. My only caution...and I say this from personal experience...is when it comes to the big treatment decisions like SCS vs Ketamine...don't let your doctor's enthuiasm for one treatment over another influence you too much. Of course listen to their reasoning...obviously you guys had a discussion about it...but also take time to walk away and really think about it because there was a reason you were initially leaning towards one. Whatever decision you make...and I know it's not happening tomorrow or anything...just make sure you are 100% on board and aware and willing to accept any risks associated with that treatment. I was convinced to have a LSB by my dr because he was so confident that it would work if HE did it and did a series of them vs the one and done I had before. I was so desperate for relief that I went along with it even though I had reservations and it caused full body spread. I knew it was a risk...small one...but I am a little angry at myself for having let a dr push me into getting a procedure I didn't really want and have paid a pretty high price. That's the only reason I say any of this...because now I make sure that no matter what dr I am working with that I am the one who makes the final decision about treatment in partnership with my dr. Sounds like you have a good one here as it sounds like you were able to really talk and discuss things openly. I wish you the absolute best of luck with this new dr. Keep us posted on how things go.

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!

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.

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