Hi all,

I have not been posting all that much lately, but I do still drop in from time to time just to see how some of you are doing.

Tomorrow is a big day for me and I decided that it was a good time to share with everyone again. I will be going in to my PM doctor tomorrow at 6:45 in the morning to begin my trial with the SCS. I am quite nervous about the whole thing with the big concern of the possibility of the CRPS spreading, or getting worse. I have had a long time to think about this and have put it off 3 times so far for one reason or another, whether it was insurance problems, depression, not yet ready and so on. Well, it is finally time to take the chance and at least see if it can help me enough to decided to go ahead with the permanent implanted device, or find another treatment. Perhaps look into a new treatment similar to the SCS called a DRG stimulator that a good friend had recently mentioned to me, but that is getting ahead of myself. I am going to try to stay positive and hope that this gets me to a more comfortable level where I won't have to worry about what treatment is next.

I will try to keep you all posted in this coming week during my trial to let you know how I am doing.

Take Care,

I've never heard that a SCS can actually "help" with the signs & symptoms from RSD/CRPS. It lessens the pain, if you're lucky, but that's about it. It's not actually considered treatment of CRPS, where I live at least.

Keeping you in my thoughts and prayers (((((((Alaina))))))) Thanks for the update.
peace
zinnia

Dear Alaina,

I know many healing thoughts are coming your way from the group. You are being carried in our hearts and surrounded by wishes for relief and restoration.

Be extra gentle with yourself and take good care. Though you are anxious (who wouldn't be) try to keep stress down and spirits up. Hitting the Vit C 500mg a day right now might not be a bad idea either.

I sincerely hope the SCS starts the pendulum swinging in the other direction so you can start to heal and put a little more weight on that purple foot of yours. This was not an easy decision, but you made it after careful consideration for what was best for you and I respect your strength and courage.

My PM had mentioned once about the SCS improving circulation and I had wondered about this effect. This article from 2013 about SCS in limb ischemia sums it up nicely in the abstract paragraph so no need to read the whole thing. Basically decreased sympathetic activity and improved microcirculation resulting from the SCS lead to improved outcomes and limb salvage for vascular patients. Maybe you will get this effect AND decreased pain transmission. That would be great!

Spinal Cord Stimulation for Chronic Limb Ischemia


Okay enough technical stuff. Be well and let us know what happens. We are with you.

Just saw this now...but I hope everything went well today. Keep us posted on how things are going. I know the decision to move forward with this treatment is a difficult one given that there are both positive and negative experiences out there...but I really hope that you are able to get some pain relief from it and that it works out for you. We are all different and have to decide for ourselves what treatments are worth trying based on all the various risks...you obviously know this and have not made the decision lightly. I will send good thoughts your way and hope that this will finally give you the relief you need from the pain of this horrible condition. Hugs.

Thank you all for the encouragement.

I have been rather sore these past couple of days following the procedure but I am trying to remain hopeful.

I am a little upset with my PM doctor. Having the SCS leads put into place caused a rather bad flare in both of my legs. I have had symptoms in both, but for the most part, the worst of it was mainly in my right foot up to a little above my ankle until the leads were put in. I have left several messages for my PM doctor, but still have not had a return call. I did speak with the on call doctor earlier today. She was going to try to contact my PM doctor, but gave me the ok to continue on with the therapy how ever my representative feels comfortable doing so. This afternoon, we increased the program level for the first time.

So far, I am not very happy with the way things are going. My pain level is higher than before the leads were put in, but on the positive side, I can touch my foot for the first time since last January. Hopefully this flare will calm down some and I can start doing some physical rehabilitation.

I hope the flare up passes quickly for you. While I do not have a SCS...I do know that for me any kind of trauma usually causes at least several days of flare up so hopefully you'll be better soon. Hugs...really hoping this works for you. The reduced sensitivity in the foot is a good thing so I am hopeful for you. Keep us updated!

Well, lets focus on the positive, that you can touch the foot, and figure the rest is just from the trauma...

Thanks for keeping us posted!

Don't you have other forms of medication or treatment besides the SCS?

Yes I do. I started out with the usual Neurontin, and Elavil, along with Norco for breakthrough pain. The Neurontin and Elavil did not help me enough to continue taking them. My previous PM doctor moved me through a several different medications and ended up over medicating me. My current PM has me on a relatively low dose of MS Contin, along with Effexor and Terazosin. I also take Norco for breakthrough pain, but I try to limit that to the days that I travel back and forth from my doctor appointments to where I am currently living which is just under a 3 hour ride each way. We drive down one day, go to an appointment the following day and drive home on the third day. I am usually flared rather badly those days from all the traveling but there are not many doctors that now much about CRPS where I live, plus I did not want to switch doctors again. This current combination of medication does help some, particularly the Terazosin which helps with vasodilation to improve blood flow to my foot, but they do not help enough with the pain. I would really like to get off of the opiates all together, and go back to something more like Tramadol when I feel I really need something.

Biobased, my PM does not believe that LDN does any good for CRPS so he will not prescribe it. I did ask though in case you are wondering.

I also see a pain psychologist. We started biofeedback about a month ago. So far, I have not seen this doing much for me and no longer do this at her office, but I do still use it at home. I figure that it does not hurt anything continuing on at home, but I did not see enough improvement to continue paying for it when it is something I could easily do at home.

I am taking things one step at a time, quite literally. I don't expect to get rid of the pain entirely, but as I told my sister the other day, I just want to be a little more comfortable where I can start trying to use my leg again.