First SCS trial is over!

   I think it's safe to say I'm an every other day poster since the trial started! Lol. As much as I try, it's just not easy to get on here every day & collect my thoughts enough to type them out. This project (my blog) means a lot to me & I am trying to commit to it because I really hope to be able to help someone else make difficult decisions through my first hand experiences. I know I have used other CRPS patients advice over some doctors at times. Anyways, to the good stuff...
   I had my leads removed yesterday (Tuesday) morning. Let me start by saying I was even more excited to have them removed than I was to start the trial. I think I need to explain that one because I don't want to discourage anyone! I had a full 7 day trial. Most people do an average of 4. I react to procedures / surgeries MUCH worse than most people as well. By the end of mine, my skin was irritated where the leads sat on the skin, including redness & some swelling. It plain hurt, I won't lie. This all has NOTHING to do with how the stim affected me however, so please don't misinterpret. Usually patients have a day or two of discomfort after surgery, but I am STILL having back pain! Having my back taped up with wires entering / exiting was just not something my body dealt well with. When the leads were removed, there was a little resistance & I was repositioned a couple times to allow the doctor to pull them out. That part didn't hurt, but I did feel pressure & a little soreness. After they were out, my back felt at least 50% better! I could bend & move better with much less pain! Sitting back against a chair was great as I couldn't do that all week! One of my amazing friends went with me that day & was so kind as to videotape the lead removal both for myself & anyone else's curiosity! (Sorry for the poor camera quality & flipping of video!)

(Ok, so I can't get the video to upload so I will try again later! Sorry!)

After the removal we took a picture later of what remained on my back for now. It's still pretty sore to touch, but much better overall. There might be a couple little scars but nothing to fret over! I also have a sore on my left side where the connectors were taped, but that's a hazard of the job for a 7 day trial!

   Now the fun part, discussing my options! It's been no secret I didn't get the coverage we aimed for during the trial. With the leads being placed at L1, it didn't work with my anatomy to help much above my knees. With that being said, and me having little pain in my lower legs during the trial, I don't feel I can properly judge the how the SCS helped my CRPS. When asked, I could only give Dr. S a 20% as far as how much the SCS improved my quality of life over the week, and I think I was generous with that number. I did not factor in my back with this as I know that pain will eventually go away. I still had a lot of trouble walking & doing everyday things due to the pain in my upper legs and hips. Still had to use a wheelchair. 20% is not enough for me to go through with the permanent SCS implant. This was devastating to me, even just to say. I think this is when the tears welled up in my eyes because it felt like failure. It felt like I lost a battle & had no direction now. This was supposed to be my miracle, my ticket to a life of having babies & doing things I used to. I was just thinking about the activities I wanted to tackle, like skiing, roller coasters & traveling! Suddenly that hope shattered as I now have to figure out what's next & how I'm going to get through each day. Back right where I was before the trial...
   Though everyone is optimistic, Dr. S & my St. Jude reps, that the paddle leads on the implant will give me full coverage where I need it, there is no guarantee. Dr. S does not feel comfortable telling me the implant will give me any better coverage than what I had during the trial. Not what I want to hear, but I understand. My internal anatomy is different & I am "special" as my reps & doctors call me often. It would be foolish for them to promise me anything. It takes only one person to ruin a doctor's 100% success rate. I think I'm starting to hate percentages after this past week. To make things easier, I have 2 St. Jude reps. A female I'll call SJ-L, and a male I'll call SJ-J. (SJ is St. Jude of course!) SJ-J even tried to tweak the programming one last time before the leads were removed just to see if a fresh set of eyes could do anything different, but no luck there either. He still feels like the implant will work for me, but the leads need to be placed somewhere between T11 and T8 for me to get the needed coverage. Here's a small diagram so you can understand where these areas are.

    So where to go from here? I've heard this question all too many times before. I had hoped I wouldn't have to face it anymore after this past week. We know the SCS implant is not the right choice right now. After talking with Dr. S, I could tell even he was disappointed with the trial outcome & sensed he felt a little bad, like he failed too. I think everyone involved felt that in some way. Here's the next options...
1) Ketamine Infusions
2) Methadone Treatments
3) Intrathecal Pain Pump
   We talked some about these three options & I'll be honest, none of them thrill me. It's all pain / opiate related and there are no more surgical treatments. I know I don't want to be a drugged up zombie & I can't be pregnant while on any of these because I personally do not believe in putting my fetus at risk of any kind. So Dr. S and my reps left the room to talk for a bit. a few minutes later, Dr. S came back in & threw out another idea that we didn't think was possible. What about a second trial? This time placing my leads higher than they were the first time in hopes we can get better coverage & allow me to truly be able to judge how it helps my pain. Most doctors NEVER do more than one trial. It is pricey & risky. Most insurance companies won't pay for more than one either. Well Dr.S is ok with it, and turns out I will luck out with insurance because we are switching companies in January through my husband's employer! Is this meant to be? I am a woman of faith & this might be God's way of telling me what I should do. I am afraid of a second trial and going through the pain again, but when it comes down to it, I don't really have any better options anyways! It's one more week, hopefully better than the first & it could still lead me to my goals. How do you say no to that? It won't be until January so I will have some time to heal from this first one. All options considered, I think I agree this is the best thing to try... again. (Title of post being a hint)
   Now that I have made up my mind on a second trial, my focus for now is getting through the holidays and having some fun. It is not going to be easy as my pain has already kicked up pretty bad in the last 24 hours, but I am trying to take it easy for now so I can get some Christmas shopping done this weekend! I had a pretty terrible night, in pain and vomiting, so I spent all day in bed today. It's helping keep the pain down. I hate being lazy & loafing around, but with severe CRPS, sometimes we have no choice. Since it is late, I shall call it a night & try to get some much needed sleep! Oh the joy when that actually happens for me! Thanks as always for reading & good night!

Day 5 - SCS Trial

   So this will be the second post this week I will start with an apology for missing posting an update yesterday. No excuses, but for anyone who's had this procedure or practically any for that matter, knows during recovery you shouldn't promise anything! Yesterday was something of a very rough day for me & after being at the doctor's office for 3 hours I was quite sore & not in a great position to write anything. But on the flipside, I do have a lot to report today!

   Yesterday morning started pretty nice, my youngest sister & her boyfriend came to visit me. She actually brought me a gift which was so sweet! Part of the gift was an Angel Christmas ornament that said "Always my sister, Forever my friend". The other part was a sterling silver necklace with a double circled charm inscribed with the words "All the strength you'll ever need is within you". I love it! It was a Christmas present but she gave it to me early because of my current circumstances. There are so many inspirational quotes, but this one truly means a lot to me, especially when there were times throughout these past 2 years that I thought I couldn't fight anymore. I thought this disease was consuming me. If the doctor's couldn't fix me, what hope did I have? And though I still have my bad days, I realized I am stronger than I thought. I have a great life worth living & a strong faith. This necklace couldn't be more perfect!

Two views of the necklace, though I couldn't get a picture of the inscription.

   So we had an appointment with my St. Jude rep and Dr.S at 3 pm to tweak the SCS programs & to change the bandages on my back since the wounds had bled so much Tuesday night. We were there about 3 hours working on the programming & trying to get me as much coverage as possible. I was pretty excited about this appointment because after the first few days, I learned more about the sensations from the SCS, where I wasn't getting coverage & where exactly I needed to feel it. During the time we were trying different settings however, we started running into some issues. It might be the placement of my leads at L1, but we could not get any coverage in some key places. I could get stimulation in my lower legs & feet decently, but nothing really above the knee.We were able to get a program that gave me some coverage in my butt (yes, my CRPS affects it) but I have to lay a certain way on my stomach for it to be efficient. We couldn't get any coverage in my upper legs, thighs, hips or lower back. This was pretty upsetting because that's where my severe pain has been recently & now I won't know if the SCS will work in those places. I will heave to go on a whim that I will get better coverage in the places I need with the paddle leads. BIG decision I'll have to make there!

Close up of the leads after they were cleaned up & re-bandaged on day 4.

Same as above, but zoomed out a little.

   I'm going to touch on a subject that I hope doesn't make anyone uncomfortable, but I said I was covering as much detail as possible during this trial! Get ready for it... Bowel movements. If you're squeamish, skip to the next paragraph! Most people will have a bm before day 4, but I have issues in that department. We have not been able to determine if it is related to my CRPS in any way, but I will tell you pain meds  definitely contribute to constipation. The reason I really bring this up is that I wanted to advise anyone doing this trial to take stool softeners. They do not work well for me, but should for most people. I took them anyways. Even on day 4, my bm caused a LOT of pain in my back because I had to strain. With softeners I've heard many people have avoided this extra pain. I'm trying to help with tips as a couple people were so kind as to do with me.
   That evening I spent a lot of time on my stomach using the "butt" program, and no it wasn't because of the bowel movement though that did play a part in the program I used. When I have a bm, it kicks up my pain  in my upper legs. My theory was that though the stim doesn't help there currently, what does it reach between there and my brain? My butt! CRPS causes your nerves to essentially "go crazy" and send pain signals to your brain. Well if the stim is on in my derriere, that should stop the impulses from my legs, right? I lucked out on this one! It truly did help! When you get lemons, make lemonade! No reason to be too discouraged after all, I just have to lay on my stomach! Lol.
   Saturday marks day 5, and I am happy to say I am almost done with this week! It has been educational and helpful, but also for me, quite a week of pain. Everyone is different & most don't have pain from the procedure for as long or like I have. I kind of knew I would have a difficult time but I needed to try this. And I don't regret it. Today I tried some tidying up at home with my SCS on and it wasn't too bad. Again, I know this isn't a fix, but it's supposed to help make my life a little better. And honestly, it has. My rep was sure to tell me today that I don't have to make a decision by Tuesday on the permanent implant, but I think I will have my mind made up. I want to decide by then. That was my goal and I feel making that choice fresh after the trial makes most sense to me. Besides, if I choose, the stimulator implant surgery won't be right away and we'll have to schedule everything sometime after the New Year. Regardless, I'm still unsure right now, but I am on my way to deciding! With that note, I think I have written enough for now. I will be sure to update on anything important, especially Tuesday when the leads come out and I have news, one way or the other! Good night and thanks for reading!!!

Day 2 - SCS Trial

   First I have to apologize for not posting yesterday on day 1 lie I had planned. For anyone that has had a SCS trial, they know day 1 is not easy. In fact,, it was downright awful! This will probably be the longest post this week as I try to walk you through everything that happened during surgery & overnight. A few minor details first. The surgery was at Emory Hospital in Atlanta. We had to be there at 2pm for the procedure at 3pm. It lasted about 1 1/2 hours & then we spent about an hour with the St. Jude reps. We ended up getting home about 7pm. It was a long day which followed a sleepless night for me (due to nervousness & pain).
   Ok, so after we got to the hospital they started me on an IV with fluids & antibiotics. I don't think the antibiotics are something given to everyone, but as I've mentioned before, I have a compromised immune system & Dr. S didn't want to take any extra chances of me getting an infection. Just prior to going back to the OR, two St. Jude reps came in to talk to me & the hubby. I guess unlike a lot of people they've worked with, we didn't have many questions because we had done our research over the last year on stimulators, including using their ambassador program. I think they were actually impressed! Lol. I did get to see / hold a sample lead & Eon Mini Stimulator which was pretty cool. It's comforting to know what's going to possibly be implanted in you to say the least! Then Dr. S came by to go over a few things, including the risks, restrictions & positives of the trial. He always makes us feel pretty optimistic & he has a great bedside manner. Then, it was time!
   So in the OR, they had me lay flat with a pillow under my stomach. I was given oxygen as a normal precaution & then my back was cleaned from shoulders to butt with Betadine. Gotta love that orange dye that stains everything from your skin to clothes! Quick tip: Rubbing alcohol works best for removing this from your skin, more so even than soap. I was then given some "happy" meds to take the edge off. Problem with that is I have developed such a high tolerance for meds in that category that it wears off really quickly. I don't remember how many "margaritas" (What Dr. S calls it) I was given but it never seemed like enough! Lol. A bunch of towels were draped over my back & then a long drape was laid over my head. This was a little nerve racking because I couldn't see what was going on anymore! It was also overwhelming because I had 7 people other than myself in the OR! There was Dr. S, his assistant doctor, 2 St. Jude reps & 3 nurses. It's a small room too, so it seemed organized but chaotic!
   Then the procedure began. I can't explain every little detail of what went on but it was 1 1/2 hours of the doctors trying to make sure the leads (one for each leg) were placed correctly, checking the coverage I was getting from them & then suturing them in place. I will attach pictures at the end of this post. I never cried during the procedure, but there were a few moments I had some pretty intense pain. A couple of times the right lead was causing sharp pain on the right side of my back, so it had to be moved. The left one seemed pretty ok. Perhaps the worse pain I had during the whole thing was when the leads were being sutured in place. The lower part of my back was numbed about 5 times with Lidocaine & that burned horribly! Everything else seemed like a breeze in comparison! After that was done, I was bandaged up, helped off the table & walked (yes walked, no wheelchair!) into the recovery area. My husband was brought back at this point & my rep sat down to help program my SCS.
   While sitting with the rep, I was given more pain meds because my back was just killing me. I felt very stiff & like I had just gotten into a fight with a car... and I lost. The programming of the stimulator was pretty tricky. I apparently am VERY sensitive to any slight movement when the stim is on. We had to set the starting points of stimulation pretty low because even with a turn of my neck or moving my toes was giving me a sudden shock at first. This was not comfortable by any means! It actually scared me a little at first because I wasn't sure if this would continue all week. We eventually got 3 programs downloaded for me and I was shown how to tweak them to make them more comfortable, change coverage or how to control each leg separately. Getting in the SUV was not easy! It was a bit high & I had to stretch to climb in. Thank God we keep a pillow in the car for me usually, so I was able to put it behind my back. That helped absorb the bumps on the ride home through Atlanta & traffic.
   Once we were home I started to realize just how hard the recovery part of this surgery would be. I needed help to sit on the toilet & I don't want to be graphic, but the point of this blog is 100% honesty on my journey. It was not easy to wipe after going to the bathroom! You can't twist, bend or put your hands above your head, so aside from the restrictions, I also had a lot of pain as my meds were wearing off. I was using my walker, which I got months ago to help walk with my CRPS, to lean on & for support. The hubby was inches away from me whenever I was up as well. At one point later when I was standing, my hubby lifted my shirt to check to make sure nothing had moved or changed because I thought it felt wet. It scared him when he saw quite a bit of blood covering the area where the leads exited my body. We expected swelling & some blood, but not quite this. We got me upstairs (again, not easy!) to try to get ready for bed & I went to use the restroom once more. Now my back was getting itchy & still felt wet, so I reached around right above my bottom & felt something wet. When I pulled my hand around, I saw blood. I got up & we realized the blood was smearing inside the clear bandages & had smeared out the bottom edge of the bandage. We placed one more regular bandage over the "leaky" area & the hubby decided we needed to call the doctor.
   When the on-call doctor called us back, she said not really to worry unless the blood seemed to be coming out at a somewhat extreme rate or there was so much that the bandages were coming off. Neither was the case yet, so we agreed just to keep an eye on it & try to get through the night. I was using ice packs for 20 minutes every hour on my back to help the pain & that was such a relief! Having CRPS, ice has not been a friend of mine! This time, I couldn't live without it! I was also taking Percocet prescribed by Dr.S for the pain, though that wasn't much help. After finally getting into bed, again quite a struggle, I fought to get comfortable. Depending on which side you sleep is where the doctor tapes the cords for the leads. I had either my stomach or right side to sleep on, but neither felt sufficient as the pain got worse & worse through the night. I cried... a lot. The pain in my back was terrible. I kept my hubby up getting me new ice packs, helping me go to the bathroom & just talking to try to get my mind off the pain. Finally about 4am I switched back to Loritab (what I was taking before the surgery) as the Percocet was doing nothing. With that & a new ice pack, I eventually dozed off around 6am. From 6am-noon I was in and out of sleep. Between pain & my phone going off like crazy, I got very little rest in. I'm typically used to this, but last night was extremely exhausting. Oh, and another FYI- sneezing, coughing, laughing, peeing & crying all increase your sensations from the stim! I did all of those things overnight & let me say hello shocks! It's not painful shocks, but they are uncomfortable, so be cautious!
   This morning / afternoon things got a little better. I still needed help moving around some & getting downstairs, but it was getting more manageable. I know it will take time & the back pain won't be there forever. Here's the ultimate question....

                                                IS IT WORKING FOR MY CRPS??????

My lower back before SCS trial

Two leads for legs, lower back, sutured & taped

Again... Sorry for the icky blood!

This shows the connectors taped to my left side that connect the leads to the programmer / battery

This is the programmer / battery pack for the SCS. It has a clip so I can put it on my pants.

  
   So far so good!!! I'm keeping the SCS on at all times, learning when to turn it up or down and being more careful of my movements. But my legs- they feel pretty incredible already! During the night my normal pain kicked up a little & so I turned the SCS up, and I didn't feel the pain anymore! So far I've only really used one of the 3 programs I have with a few tweaks & it's doing exactly what we had hoped! Another thing- my feet (the beginning source of my CRPS) have been like ice blocks for 2 years now. I could never get them warm, many times even with layers of socks or blankets. Since last night, my feet feel like the same temperature as the rest of my body! I told my rep that today & she though that was pretty incredible too! I've been in so much pain for 2 years, and this after just 24 hours is giving me a lot of hope for the future. Only time will tell if this is the route to go, and it's only day 2, but so far it's been promising! I will keep posting all week with any updates or changes! Please keep me in your prayers!

Pictures after the tumor removal surgery

Left foot, 1 tumor removed

Right foot, 3 tumors removed

Right foot again

Left foot again

Left foot again, Very obvious color change

   The surgery was done April 21, 2010. By August I was diagnosed with CRPS and Raynaud's Phenomenon. Aside from the distinctive symptoms, I had a bone scan done to help confirm the diagnosis. You would think I might be really angry at the doctor who performed the surgery or regret the surgery altogether, but that's not the case. Thing is, CRPS is not necessarily caused by a mistake of any kind and there's not a particular cause for it. It truly is something that just happens after trauma sometimes. I do not blame my surgeon at all. Also, I do not regret having the surgery, though the repercussions have been terrible. The tumors could have been cancerous, which if left untreated, can spread & even be fatal. There was no way to know if they were until they were removed and biopsied. The tumors were also getting so large that I couldn't wear shoes other than flip-flops and could barely walk. I was also losing feeling in my feet so bad that I almost fell once at work. I needed to have the surgery, hands down. Now, rather than dwell on what might have been, I will focus on facing the future & dealing with the cards I've been dealt - conquering one day at a time!

Pictures before the tumor removal surgery

Left Foot

Pointing to the large tumor on my left foot

Color Change on left foot

Blue / Black color change on left foot

Left foot again, horribly cold & blue

Left again, nails are blue too

Swelling & color change

Left foot again

Swollen & blue

    I realized after uploading these that I really don't have any pics of my right foot before surgery. My left foot was and still is worse than the right though. After surgery pics are next.
   These pictures are of course before I was diagnosed with CRPS. The pain I was having at this point were because of the size and location of the tumors.