Hi everybody. I didn't realize how long it's been since I've been on here, I've just been very busy!

The good news is that everything is working well with my SCSs for my RSD in my knees and wrist. They're helping keep the pain reduced. Although with the effects of Hurricane Sandy hitting us here, my pain has been much worse lately. But that's expected, and I'm still so grateful for my devices.

In other good news, I started graduate school in August, and I really love it I'm getting my Master's in Early Childhood Special Education, and I love the field so much. The fellow members of my cohort are fantastic people. I am going to get my certification in teaching and in developmental therapy, because I would love to work in either occupation and this way I will have twice the job opportunities.

I have also started working as a nanny to my three young cousins who are 5, 7, and 8, as my uncle was (thankfully) awarded full custody. It's been a challenge, but I love the kids with all my heart and I'm so glad to be there for them. It's just that working for a family member isn't easy, you know?

Now for the not so great news, and I wish I didn't have any, but about a month ago I fell and twisted my ankle when my foot got caught in a hole outside. When, in the weeks after, my pain continued to get worse and worse when it should have been healed already, I knew what was likely happening. Then the allodynia, burning, heat, and redness started and there was no question- the RSD has spread to my left ankle as well. I don't know why it happened now, because I have had other injuries in the past that didn't cause spread, but I suspect it was something with the twisting along with my left side being the weaker side of my body (as that was the first knee to have it and the side that my affected wrist is on). The pain seems to be getting worse by the day lately, and it's always so hard to deal with another spread. I can't live in a bubble and accidents will happen, but it does make me worry how bad things will be a couple years from now if my RSD continues to spread.

The good thing is that I already have the lumbar SCS for my legs, and I had a 3 month post-op doctor's appointment on Tuesday, so my rep was able to get the stimulation stronger in that ankle- which has definitely made a difference. Even since Tuesday, though, the pain seems to be in the bottom of my foot now as well. My doctor suggested at the appointment also trying a couple bier blocks. He had me schedule the first one for 2 weeks out, and said I could always cancel it if I was getting enough relief from the SCS. I just feel like it can't hurt to try them, especially since the pain is so bad right now. Since I'm catching it very early, there's always a chance, and I'm hopeful that it could maybe do some real lasting benefit. And while I've never had much success with blocks lasting long in the past, I've never had an SCS working in the area while I've had them, so maybe the two elements working together could bring more relief, I'm hoping.

I also wanted to share an experience I had with a resident at this visit on Tuesday with you all because I know those of us who have been to countless doctor's appointments can appreciate it more. The resident was great during my appointment and taking my history. He really listened, and many times they don't. But at the end of my programming session when I asked him if it was possible to come on another day of the week for my block since I have class on Tuesday evenings and can't drive after being under anesthesia, he went to check. When he first suggested seeing another doctor for it who I had had bad experiences with in the past, after I told him that I was uncomfortable seeing this doctor, he went back to check again about different days and told me I could come any day. After assuring him he didn't need to go through so much trouble, he actually said to me several times "we're here to make things easier for you". I was so impressed!! I have never heard any doctor utter these words before, and while I have seen many many residents and fellows at this location, I couldn't imagine anyone else actually going through this much work to try to accommodate things for me. It really meant a lot to hear that and we definitely need more people like him in the medical field

What an update post! So much and in such recent times. It is a thrill your SCSs are working to help you as intended AND I am feeling sad with you about this RSD spread. You are in the circle of prayers here of course, and with the great news from the resident who assured you "he is here for you" [my paraphrase] that brightness in your life has to count for a tremendous amount as you head into the process of dealing with the allodynia and all.

I am so glad for you studies are continuing apace, and hope despite [then possibly as with me, even maybe BECAUSE of] the challenges you do realize goals, dreams, fruition of realities of helping others which will make you a Strong Caring educator. I have the highest of regard for educators who played such very important roles in my making strides with the talent collection I carried into this world as my cache of blessings. God is good, and with the watchful and helpful leadership and encouragement of educators who, like your resident, CARED, I felt such a call to achieve.

It will be wondrous in coming years to learn of the effect you have on those young ones whom you will touch. I'm watching and waiting......

CARING and GLAD you came to post,
thank you so much for caring enough to update us,
your friend,
Mark56zzzz

It is so great to hear from you. Been thinking about you and wondering how you were doing. So happy to hear that the SCS's are working so well for you. So sorry that you are experiencing spread to your foot...it is great that the stimulation reaches there though. I am experiencing something similar, I had it spread to my right foot earlier this year and now it is spreading to my left foot. Unfortunately the stimulation doesn't reach my feet.

I am also glad to hear that other things are going well for you with grad school and being a nanny.

Thanks for the update. Take care!
Nanc

You've been MISSED!!

Thank you SO much for this update.What an ARRAY of experiences you've been through! You are such a busy active person, always giving of yourself. You've sure been thru alot.
Congrats on your accomplishments with grad school and Master's degree!

But oh how sorry I am about the twisted ankle and spread of the RSD . I know what a battle this is, as if you haven't already been thru enuf. The one thing we've all come to know about you tho, is the incredible inner-strength that you possess and your deep embedded faith, which has carried you through many tests and trials before.

You are such an inspiration, Yellow.
It's so good to hear from you!

Rae

Thanks so much for all of your replies, they really mean a lot to me Sorry that it took so long for me to respond back. Nanc, I am so sorry that yours has spread again as well, and I hope you're able to figure something out to help the pain

I finished the semester of grad school on Thursday, so I now have a lot more free time these next couple weeks! Truly though, I feel so blessed to be in this program, because I know it's exactly where I'm supposed to be and I know that this career path is exactly the right one for me, and it's such a peaceful feeling to know that.

I did go forward with the bier blocks, I'm having my 6th and final one on Friday, and then I don't know what's going to happen after that, if anything. These blocks are lasting longer than any other blocks I've had before, which is very encouraging on the one hand, but on the other hand, this latest one still just lasted 37 hours and then the pain came back to how it was. The RSD has also spread to the bottom of my left foot as well as the ankle, which has been difficult especially with the allodynia, because all surfaces touching the bottom of my foot drive my crazy with pain. I also started back to physical therapy again last week for this, so I'm hoping that will help some with the pain.

My SCS's are both giving me trouble at the same time right now, though, as luck would have it. Remember back in June when my stimulation was cutting in and out and shocking me in my legs? That's happening again. I'm not too worried as my rep was able to easily fix it the last time as it was probably scar tissue that broke free, but I hope there will be enough good contact points left to get the coverage I need after having to work around 2 spots now.

Then my cervical SCS was on 1 bar so I charged it. After about 2 hours of charging it now cannot even turn on at all because the battery went low. I don't understand how it went down? So wish me luck as I try charging it again tonight, and hopefully it'll work this time.

Ahhhh the adventures of having stimulators, right?

I am sorry to read of the trouble with your stims, and I pray your rep will be able to restore things for you. I am typing this myself sitting here charging as my unit needed a tank fillup.

God bless you in all of this dear lady,
Prayin,
Mark56

Thankfully my wrist SCS is now able to hold a charge again! I'm so grateful for this.

And I made the call to my rep about the stim in my legs, who I will meet with before my bier block on Friday. Friday just seems so far away when my legs are on fire, but I will manage somehow. I don't like to leave my SCS when it's like this, because it cuts in and out and when it comes back on it's a strong jolt out of nowhere which is scary and very uncomfortable. I've been trying to leave it on for short periods of time, though.

I'm surprised that I haven't heard anyone else having gone through this on this forum before but it's happened to me twice in 6 months. I wonder how common of a situation it is?

You do strike the target squarely Yellow, when you write of curiosity postings have not often addressed the phenomenon of waning power and shocky spikes in signal. Mine has been operating continually since "install" with only fairly brief hiatus for serious surgery/deep anesthesia episodes, electroencephalography, and electrocardiography. Aside from those issues I will not let anyone remark to me I should "shut it off." Heck, even if the FCC were to come a knockin about my interference with cable TV, I would have to tell a neighbor they should subscribe to satellite programs.

Prayin with optimism for you Yellow!
Merry Christmas,
Mark56

Adding my prayers as well, Yellow. I'm sorry you've had these complications and I know how frustrating it must be. I wish you and your family a Merry Christmas. We'll see what 2013 brings us. We're livin in some very strange and sad times. We must always keep our faith strong.

Rae



....PS Hi Ananimity! I see you tagged a thanks and I'm glad to know you are still with us! I miss seeing your posts

Well I was able to meet with the rep yesterday after my final bier block of the series. The resident doing this block told me it was his first one and kept asking me what to do- yikes! I was so glad when the nurse came in. But all went ok and I'm so thankful to have the pain relief from it in my ankle while it lasts.

Anyway... there is a big mass of scar tissue right in the middle of my 2 leads causing the problem. She showed me on the screen how it shows 2 X's where the problem area is. She did her best programming as far away from these points as possible, but with me still very sleepy from the anesthesia and the stimulation sometimes taking a little while to start cutting out, I knew there was a chance it wouldn't be "all fixed". Sure enough, after I got home I played around with the new programs, and 3 out of the 4 were having the same problem. One seems to be ok for now, though, so hopefully it will continue to be and this can tide me over for now. My rep also showed me how to adjust the rate of the programs on my own on the remote, if I found they were using too much power at higher rates, which was pretty cool because I never knew how to do that before!

I do wonder if there's any way to safely break up some of that scar tissue, or if I'm stuck with it? I know ultrasounds work to break up scar tissue, but I'm not sure if that's safe to use where the leads are. And scar tissue massage would probably be dangerous too, if I had to guess. I'll have to wait until January 8th, my next appointment time, to ask my doctor.

I also just want to say that moist heat is possibly the best treat ever for someone with RSD I asked for some Thursday at PT after the weather was really giving me a terrible pain flare- and it felt so incredible. If only I could reproduce it at home!