My last blog ended with my recovering from a lead wire change for Stella (the peripheral stimulator). That procedure was a success in that I have gotten better coverage of the left foot.  However, she became temperamental, as we women sometime do and she had a battery failure and thus had to have it replaced.  That procedure took place shortly after the lead wire change.  Seems to always be a little something, however in doing so found another problem spot with lots of scar tissue and that was taken care of too.  Luckily the result is that I have better coverage then I have ever had; and the recovery time was much shorter.

With the help of Grant from St. Judes, and the programs he has set for Stella and Stanley it seems that they work together.  I have played with different combinations of programs and have found that certain combinations work better than others, again all good.  So am I pain free… no and probably never will be, but it is so much better than before.  I am able to do more but still pace myself; otherwise I overdue and pay greatly.  Being involved in other things takes your mind off of yourself and you get a feeling of accomplishment. As my husband, a psychologist, says, positive distraction is one the minds most valuable defenses against pain and stress.  It doesn’t go away but it’s not number one on your mind.  

You have heard a little about Stella and Stanley (my two stimulators) in some of my earlier blogs, today I thought it would be a good time to tell you a little bit about what they do and what we do to get them to play well together.

July 2010 I had a peripheral stimulator placed in the calf of my left leg. After the placement my daughter and I decided that it needed a name, we threw some names about and came up with Stella. Now Stella's job is to stimulate the nerves the lower leg and foot to help ease the pain of CRPS/RSD. She has done her job pretty well on parts of the foot and ankle and has had a few adjustments along the way to get more coverage... you know how temperamental women can be! I'll try get some x-ray pictures of Stella to show you where she lives.

After continuing to have some issues my Dr.'s and I talked it over and decided that a spinal stimulator should be placed in the thoracic area off my back to provide greater coverage. In July the spinal stimulator was put in place. Needless to say, the name for the new stimulator was obvious – courtesy of Tennessee Williams.

He had been in for about a week when I met with the rep. from St. Jude's to have him turned on and programmed. We have worked hard to find a program or programs which would blend well with Stella.. However, as in Street Car, it was a challenge to find common ground in which they play well together. Stanley's job description is a little different than Stella's, he covers both legs and feet. And so like a good partner Stella helps Stanley to do a much better job of covering more area for a little more relief. Stanley is camera shy and so at this time I do not have a picture to post.

Getting use to Stella and Stanley has been an interesting journey that is not over yet. We are continuing to make adjustments to both in hopes of getting them to be in harmony with each other. As always, nobody promised a rose garden.

While writing this blog I am sitting in my chair recovering from having a lead wire of Stella's repositioned to get better coverage of the left foot. I will write at a later time about that process and the effect it has made on that relief. Living with pain is not easy but there are things out there that are worse... but this is no time to discuss politics!!!

After much indecision and consultation, on July 22 I had the Spinal Stimulator placed into the thoracic area of the back. I knew I was in very capable hands, but still apprehensive.

The surgery went well and the first week was a little intense at times but I got through it. The new stimulator, I named Stanley, was turned on the 1st of August. The turning on was interesting and a bit of a different feeling from the peripheral stimulator, (named Stella). We turned off the peripheral stimulator and programmed the spinal stimulator and then turned them on together to see how they did with one another. That worked out just fine.

Learning to live with the constant buzz of the peripheral stimulator was far easier than the spinal stimulator has been. Every move if you're sitting and move, standing and adjust your posture, walking, going to bed at night, to coughing and sneezing, they are all little a foreign but I will adjust. In terms of helping, it has really helped the right side and some help on the left but not as much as I had hoped but then again it is really early to tell and I am still healing. I will have another adjustment on August 8th and do a tweak or two with the peripheral. I am hoping for more relief on the left side but that remains to be seen.

This process reinforces that you must accept the fact that you have CRPS/RSD – and probably will have forever.  As I said before, you do a little here and a little there and every little bit helps. It doesn't make it go away but you get little bits of life back. I know that many of you out there have lived with this a lot longer than I have, so you know what I mean.

I'm fortunate to have Dr.'s that are always looking for something that will help and I'm willing to try whatever they find. I have a lot of life left to live, so I will continue to fight and not give up.

Most people who ask about what I am dealing with have never heard of CRPS; but once in awhile I meet someone who has the same problem but has had no one to talk to about it who understands what they are going through. Recently I met a women in the grocery store that has had CRPS/RSD for fifteen years and has never run into anyone else who suffers with this. We talked for sometime and shared stories and exchanged information. She was so pleased to have someone to share the struggle with. I will keep in touch with her.

Also I have found that many in the medical field don't really know what this affliction really is. When I told a medical professional I couldn't do a specific procedure, she took the time to understand what I go through and interested enough that she researched CRPS/RSD and called me within an hour to say you're right and we came up with another way to do the procedure. In both cases I learned something and think that they did too.

I think that it is valuable to talk to others, listen well and share information. You never know you might learn a trick that will get you out of a depressed state or how to deal with a small problem such as travel or even day to day living. Everyone has to learn what works for them but most important is to never give up as there is always hope. We just have to keep looking, trying and learning.

The final four Ketamine Infusions were uneventful. Still had some strange dreams and apparently had a conversation with the RN looking after me about little blue people!!

The Ketamine helped some but not as much as I had hoped. It was better in my right foot which is only in the early stages so still think that if CRPS is caught early that it might help before it gets to advanced. I am sure that anyone with CRPS/RSD would agree they would try about anything to find something that works... even a little bit just so life would be easier.

In talking to my Dr.'s we decided to do a Spinal Stimulator trial and that was challenging. It didn't hurt, but seemed that I was always tangled up in my wires. Then you had the control unit that was too large for your pocket so it had to be hanging on your waist or in a hand bag. On the last day, while fixing dinner, I used an apron with a pocket and it worked great and allowed me to move freely. After some adjustments in the programs that made stimulation much easier to deal with.

The feeling that you get with the stimulator is like little electric shocks going down your legs. In my case it wasn't totally bothersome, but you need to get use to it and it does help with the pain. Every little bit helps and makes the day easier. I had about 10% relief in the left leg and about 70% in the right. We are now in the process of getting approval for a permanent placement which would be in about 6 weeks or so. To be very honest I am a little unsure but trust that this is going to help. But in the meantime I will enjoy our spring, and will continue to learn to dance in the rain.

The first Ketamine Infusion was about a week and a half ago, I was a little nervous even though I knew what to expect. I was scheduled for 10, four hour sessions over a three week period.

After about an hour of trying to find a vein  we were finally ready to start. I was given a drug to help stop the bad dreams and then they started the infusion. I drifted off to sleep and had strange dreams but knew that they were just that, strange. Mine were dark colored tiles moving, socks that flew up between them and then turned into snakes with very large teeth. I woke up about three hours later and then was in and out of it for an additional hour, recovered for half an hour and was released. After all of that I was tired and slept on and off for the rest of the evening and then slept all night.

The second infusion was about the same but the dreams were a little less intense. However after the first two I noticed that I had a reduction in the amount of swelling I had. The color was a little better and the pain was reduced a little, about 20%. My foot is still sensitive to touch and I could not wear a sock or shoe at this time.

The third, fourth, fifth and sixth I have had fitful dreams but nothing that has been frightening or upsetting. Along with the dreams I had some involuntary movements that were strange and woke me up a little; and I was so cold, thank goodness for the nurses bring the warm blankets. The amount of pain reduction in the left foot has not changed but the amount of pain reduction and overall appearance of the right foot is about 75%. This leads me to believe that the earlier that this is caught and the earlier you have this treatment maybe it could be put on hold or allow a person to have a somewhat normal life.

Next week I will complete the prescribed program. Then the proof of the pudding... how long will the improvement last?!? Like everything in this crap shoot, it s a gamble. I am not sorry that I have done the infusions and hope that with the last four that I will continue to get a little more relief from pain. Like my Dr.'s say each piece or procedure we do is cumulative, and I do believe that someday I will have a little more normal life and be able to do the things that I enjoy.

My husband gave me a small, but meaningful book that has helped my periods of depression; it helped me be grateful for what I have and has a quote that I will carry with me:"Life is not waiting for the storm to pass but learning to dance in the rain". The book is: Learning to Dance in the Rain The Power of Gratitude, by Mac Anderson and BJ Gallagher. If anyone wants a copy let me know and I will send you where to get it on line along with an accompanying CD.

I will let you know how the last 4 infusions go and what is next for me, in the next chapter. If any of you have had the Ketamine Infusions I would like to hear your experience and if it has helped and for how long.

Two weeks ago I started Sympathetic Nerve Blocks to get some relief in my left lower extremity. I did get about 40 to 50% relief, however during the first week I some how turned my right ankle and hurt my right foot - now both feet hurt! The decision was made that the second week we would do a Bilateral Sympathetic Nerve Block and that seemed to help with the pain. Nothing is 100% but every little bit is a welcome relief. You're able to do a few things that you have not been able to do. Unfortunately it seems to wear off sooner than I had hoped. Have any of you used the nerve block and had a similar experience?

A new plan:

My Dr.'s (the Swat Team as I call them) are looking into another treatment - Ketamine Infusion. I did a trial infusion and had good results and am willing to give it (anything) a try. We have researched it and just like everything in life there are risks, but to have a somewhat normal life it is worth it for me and my family. The treatment will be over a period of days and the hope is that it will calm the nerves down. If it works I would be able to wear tennis shoes and go out for a long walks and travel. For me, I can't give up and I have to look for the positives. If any of you have used the Ketamine Infusion treatment I would be very interested in your insights and results. Thanks.

My goal for 2011:

To be well enough to travel and visit my kids again!

My name is Sally and am a patient of Dr. Barrett’s.  I have been living with Chronic Regional Pain Syndrome (CRPS) for approximately 4 years.  Before CRPS I was an active person and loved to travel, play golf, going to Curves, walking, and garden, and my hobby was watercolor, making cards and most craft things.  Some things I still do when I can or for short periods, like my crafts.  The rest I will get back to or maybe some I will never do again but that’s ok I will be happy with just little things like walking and doing a little traveling.  I know its all baby steps moving forward, but the biggest challenge is trying to stay “up” and positive, and staying positive about the future being better. 

I have gone through multiple treatments, each giving some relief…and any relief that is accumulative makes life a little easier.  I am, fortunately, an up beat person and usually can stay positive even on my worst days.  My focusing on staying positive not only helps me, but helps those that are around me.  I know it isn’t easy for my family either, as I no longer can give 100% to my role, and if I give in to depression they suffer as well.

I am doing this blog to reach others who live with pain.  Maybe others will take away an idea or thought that will make their struggle easier; and I’m sure others dealing with pain issues will have some ideas or suggestion that will benefit me and others as well.  So I welcome ideas, questions or comments - I’m sure we can all learn from each other.