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 7 - SCS Trial

   Well this evening marks the last full day of my SCS trial. My appointment with my St. Jude rep and Dr.S is tomorrow morning at 10:15am. This is when the leads will be removed and we are supposed to discuss whether or not I will move forward with the SCS implant surgery. I've been saying my goal was to have a decision on that by tomorrow, but I'm not sure I'm going to reach that goal now. Too many uncertainties and questions have come up about the implant and how it will affect me compared to the trial, and I'm just not sure for right now what I feel is best.
   As I've been saying all week, I have had extreme pain in my back and I know that has had an impact on how I've been able to judge the stimulator on my legs. My pain meds haven't even been helping with the back pain. It has been very difficult at night for me to get comfortable in bed no matter how I try to sleep. As far as the SCS goes, I haven't been able to get the coverage I need during this week which was vital in making my decision. Most of my pain has been in my upper outer legs, and I've had to just try to bare with that as my stim didn't touch there. When talking to my other St. Jude rep today, he said he thinks the paddle leads will get much better coverage, but he also feels the implant surgery will be much harder on me than the average person based on how the trial went. That's a big plus and negative all in one phrase. There's never a guarantee on any surgery and I know this. It's all about percentage for me. What percent this surgery should be successful is a BIG factor for me. We will talk to everyone at the appointment tomorrow about the lurking questions and though I don't think I will have a decision tomorrow, perhaps we will get a little closer. One of the reps also wants to play with the programming a little to see one more time if they can get any new coverage before we remove the leads. It is sure to be insightful one way or another tomorrow. Hopefully for the better. I will hopefully post more after the appointment, including my questions and their answers. Good night everyone!

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 3 - SCS Trial

   So far not too much has changed since yesterday's post, though I'm more aware of how the SCS is working. Today Dr. S called me to check up on me & to check on the bleeding. It is pretty dried up now, so he said that was good. Sometimes it happens, but I will be back at Emory tomorrow so he mentioned we may change the bandages since they are a bit soggy / peeling off. My St. Jude rep called today as well. She told me she'll be calling every day to check on me, see how the SCS is working & answer any questions. She's very nice & understanding. I think it's very important you feel comfortable with your rep as you will be in constant contact with them throughout the trial & even with the implant. When I go in tomorrow, she will adjust some of the settings on my stimulator in hopes of getting even better coverage.
   One issue I noticed is that my right leg gets a lot more & stronger stimulation than my left. I actually need it the opposite way as my left leg is a little worse. I also need the area's of coverage tweaked a bit. I feel a lot of the vibrations in the back of my legs which are not really affected by my CRPS. Most of my pain is along the outer sides of my legs & on the top of them. I did have a flare-up in my left leg today & the coverage was not quite adequate enough to help the pain much. I also get pain from my toes to my lower back. So far the stimulation is not getting above my thighs. That is something else we need to address. Dr. S told me we probably wouldn't be able to get my back covered or we'd have to sacrifice my feet. Since my feet are worse, I opted to keep them covered. I should however still get stimulation into my hips & hopefully butt. We will see tomorrow how much we can change the programs to help.
   I am still learning how to balance the stimulation in each leg & I continue trying each program so I know what works versus what doesn't. Today I have been lying down a lot. Pillows & ice continue to be my best friends. Thank God for my hubby being able to work from home & catering to my every need. He's amazing. I am still in a lot of pain from the procedure itself, but I knew it wouldn't be easy. I don't think I was prepared for just how much I'd hurt after though. Not everyone reacts badly to procedures like I do. I don't want to scare anyone. Even with nerve blocks it took me a week of recovery, compared to most people with a day or so. I get told I'm 'special" a lot. Lol. Not the good kind I fear! But that's ok, my body is just different. I do know already based on how my recovery is going for the trial procedure, that the implant surgery is going to be really tough. The ultimate question is if that surgery will be worth it. So far I've noticed a good change but time will continue to tell. I am still very optimistic! I will post again tomorrow after my appointment & hopefully put up a new picture with the bandages changed so you can see the lead placement better! Here's hoping for an even better day tomorrow!

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!

Youtube Explanation of SCS Implant Surgery

Something my husband came across & it shows what the implant surgery entails. This made me a tad queasy actually, but it's nice to be prepared for what will be happening to my body!

Lumbar Spinal Cord Stimulation using paddle leads

CRPS & being around kids

   So surgery is in 2 1/2 days! Perhaps I'm crazy, but I am so excited and anticipating this trial! It has helped so many other people; I can't help but hope / pray this will change my life as well! I'm a little nervous- but what do I have to lose from this? It's a big deal, but after 2 years with this pain, I welcome any possible treatments! But to the subject of today's post...
   First, one of my best friends from high school days that I've known almost half of my life, JB, has made me the God-Mother of her son James today! I feel so honored & it makes me want my own children even more. I already have a niece, another on the way & quite a few cousins with kids. I bring this up because though right now I am not in a position to have / care for a baby of my own, I want to be a mother so much that being around kids puts me in a temporary "mental remission". It's like when I'm around kids, it makes me smile, gives me a purpose & makes me forget about the pain for awhile. Does anyone else have a love for something that makes them feel this way too? Can you do something that fills you with so much joy that any pain, sadness or depression seems to disappear even for a short time? Of course I tend to overdo things when I play with the kids, which makes me pay for it later, but it seems so worth it at the time! Lol. The SCS implant surgery will be really difficult for me because of the limitations I'll have, especially no lifting anything over 5 pounds. My second niece is due in January & I may not get to hold her for a few months. That breaks my heart! I just keep telling myself it will be worth it if the SCS works!
   I've been around kids all of my life & want to be a mom I think more than anyone I know. Having CRPS & the idea of being pregnant / having little ones running around scares me terribly. I've heard some women have gone into remission during pregnancy, while others have struggled a lot. My PM doctor doesn't like prescribing opioids for pain & I am scared of what the pain would do to the baby as well as being high-stressed. I know it is possible to have a successful pregnancy, but having the pain in both legs already has me using a wheelchair sometimes. How hard would it be also having all of that extra weight too? The idea that my pain could contribute to a miscarriage, birth defects or the inability for me to care for a newborn is perhaps the scariest thing I've ever had to think about. I know it terrifies my husband too. It's not something we have to really think about just yet, but it still weighs on our minds. Hopefully God will make our journey as easy as possible when the time comes!

1 Week Countdown!

   So this will be a short post, but I'm excited to say my SCS trial is one week from today! I'm feeling pretty confident & I feel this is the road God has led me down. From all of the stories I've read on people who've tried the stim, a very few have had little or no relief. That's very encouraging to me. I keep reading about women who have had children with a SCS, and that too makes me very hopeful that motherhood is within reach for me too! This disease has taken so much from me in just 2 years- from a job I held for 10 years, to being active & social. I can't even do many household things anymore. I have resorted to being on long term disability and social security benefits. This trial could change my life. I know it's not a cure and I will still have limitations, but once you live with a disease like CRPS, any relief is a blessing. So the countdown begins and I ask for some prayers that this will finally be my saving grace!

Holidays with CRPS

   I hope everyone had a wonderful Thanksgiving holiday! I truly had a great past couple of days- not because I was feeling great, but rather because I had amazing company. I enjoyed quite the feast with my family on Thursday and with the in-laws on Friday. It's actually fortunate with my current circumstances that my dad and my husband's mom insist on always cooking for the holidays. Lord knows it would be too stressful for my husband to try to put together a family gathering by himself as I wouldn't be much help. (I don't cook, but I used to be able to clean!) It's hard enough on him worrying about transporting me in the car to our family's houses as that never fares well with my pain.
   So aside from the meals, I LOVE the holidays and everything that goes with it. I enjoy the decorating, the shopping, the festive parties. The worst part over the past 2 years is that I cannot enjoy those things like I once did. I have a large (fake) tree that I can barely wait till Thanksgiving to trim, along with all of my other Christmas decorations and lights to put up. What used to take me a day to do everything, this year has taken me almost 2 weeks to get things out little by little. I even started earlier than normal anticipating I would need to take my time. It's officially almost the Sunday after Turkey Day & I'm finally done. With my CRPS in both legs, I cannot even begin to count the times I had to sit & rest or take pain killers just to try to get through one more box. What has always been such a joyful activity for me has now become a tedious chore basically. It's another sad reminder of how having this disease limits everything we can do. I almost considered throwing in the towel this year knowing decorations do not define the holiday, but I was determined no matter how long it took me, I would not let this defeat me. With a debilitating illness, it is really important to not let it take everything from you that brings you joy.
   As far as shopping for gifts goes, I think I will be doing most of that online this year. I currently cannot drive due to pain, and riding passenger is just as bad for me actually. I can't stand the bumps and sudden stops or jolts. Unless I am going to a doctor's appointment, I really don't get out much these days. I have to use a wheelchair when I do go anywhere, which makes being out and about not very appealing anyways. That brings me to holiday parties. I think I'm passing on any of those this year. I love being around friends & it definitely brightens my spirits, but for me, it's just not worth the repercussions. I am still young & this won't be my last opportunity to celebrate the festivities. Besides, parties, decorations and gifts do not make a holiday. They are all things we have integrated into the holiday season simply to help bring smiles and merriment. What we need to remember is the true meaning behind Christmas & why we rejoice in that day. It's the people we spend it with, the birth of Jesus & the gift of forgiveness. As long as we keep that in mind, it makes our illness a bit more easy to bear. After all, someone else once decided to bear the weight of the world for us! ;o)

Pre-Trial Procedure Consultation

   So the hubby and I went to see my PM doctor (Dr.S) this past Friday to discuss the details of my upcoming SCS trial on December 6th. The appointment went pretty well as we discussed what to expect during the trial & what my limitations will be. I will have two leads inserted into my epidural space, one for each leg. I've learned it's very crucial to talk to your doctor about the location & details of your pain, especially when considering a SCS. I've heard it is best to have a separate lead implanted for each limb in order to get the best coverage as well as so that you may control only the area giving you pain versus having the SCS on in other areas where it's not needed. I need coverage for both legs, from feet to lower back. Also, my left leg tends to be worse, so I may only need the SCS for that leg & not for the right at times. I want the ability to have that control. During the procedure, I will be awake but slightly sedated so that I hopefully will not feel any extreme pain but will be coherent enough to let Dr. S know if I'm getting sufficient coverage from the stimulator. 
   After the procedure which should last about an hour, I will get to speak with my St. Jude representative who will work with me to program the SCS in whatever way will help me most. I chose St. Jude as the company I wanted to go with because I found their site to be very helpful, user-friendly and I like their ambassador program, which I did use. I was able to connect via email and then phone with a 20 year old female who had a SCS implanted. She was very open to sharing her experience with me as well as advice for post surgery. It was also very relieving for me to hear her story & it made both of us feel like we weren't alone. It also helped that she was fairly close to me in age and we both were very active prior to our CRPS diagnosis. Though I'd never wish this disease on anyone, it's comforting to have someone to talk to that understands. Now every PM doctor / practice might be different, but I was given a choice of which company I wanted. I recommend doing research on your options and if allowed, choose the one that makes you feel most comfortable. The decision to get a SCS is a very big one, and the representative from the company that is providing your equipment, as my PM doctor put it, will become one of your best friends. They will be there to answer any questions, help fine-tune your system when needed and be there if anything goes wrong. St. Jude has a great reputation, so I hope I made the right choice.
   Another choice I had to make was how long of a trial I wanted to do. I could do a 3, 5 or 7 day trial. Because I want to be absolutely sure this works, I opted for the 7 day trial. My PM doctor was a little apprehensive of letting me do the longer trial because I happen to have a compromised immune system & am on a low dose chemo pill to suppress my immune system. This unfortunately increases my chances for infection from the procedure, especially the longer I have an open wound (where the SCS wires will exit my back to connect to the battery pack). Dr. S has decided he will start me on antibiotics the day of the procedure & have me continue to take them during the trial. This will hopefully kill any harmful bacteria that may get inside the wound.
   So that pretty much concludes the important topics of this appointment. If the trial works and I decide to go ahead with the implant, we won't have it done until after the new year. The holidays are just too close at this point & since Christmas is my favorite time of the year, I don't want to be totally out of commission for it. I just think of it as starting out the new year with a new beginning- hopefully one with a lot less pain!

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.

Introduction to my life with CRPS

   Up until January 2010, I was very much an ordinary twenty-five year old. I will fully explain my purpose for this blog in the last paragraph, but I want to share some of my journey first. I've always been very independent and a go-getter. My then fiance & I were living in our first home, just purchased the previous October. I was working full time, about 50 hours a week, as an assistant manager in a retail store. It was the start of a new year & I was finishing plans for our May 2010 wedding, much of which was hand-made & detailed by myself. As most bride's know, a wedding is somewhat of a production and mine was nothing short of that with myself both the director and the star of the show. I'm a bit of a perfectionist, although if you ask my now husband, he'll say I'm just plain anal retentive! Lol. On top of my own wedding, one of my good friends was getting married one month before me and I was set to be a bridesmaid. I wanted to be the best maid I could & help with whatever she needed. This is just to give you an idea of what was going on in my life up to this point. I was a busy-body and always on the go, needless to say.

   I know this is going to be a long first post, so I will try my best to sum up what I could turn into a book. I was at work in January when I first started noticing the pain in my left foot. It started out just as achy, then over time progressed into a sharp pain and my foot would go painfully numb. Then in February, it started happening with my right foot as well. I noticed that I had a lump forming on the outside of each ankle that was painful to the touch. Both of my legs were swelling quite a bit from the knees down as well. I went to my PCP who sent me to an orthopedic surgeon for an MRI. Turns out the lumps were tumors.

   Now I had two options: 1) have surgery to remove the tumors that could potentially be cancerous and hopefully that would fix the pain, or 2) try to bare through the pain, see how things go and just monitor the tumor growth. A big part of my decision for surgery was that it was getting more painful to walk and wear shoes every day. I could barely deal with the pain which was made worse by being on my feet 10 hours a day at work. By March, my feet had started turning blue/black, especially near the toes and my feet were cold as ice constantly. An even bigger part of my decision was my upcoming wedding. It was only a couple months away & I couldn't postpone it- so there was the thought I wasn't even going to be able to walk down the aisle. My husband & I made the decision that surgery as soon as possible was best. On April 21, 2010 I had the surgery to remove all of the tumors at once. By that day, I had a total of 3 tumors on my right foot and 1 (the biggest) on my left. They turned out to be benign, fatty tumors (lipomas) so that was a relief. Now everything would be fixed, right?! Little did I know this surgery would lead to the worst pain I've ever experienced & as of now, two of the most difficult years of my life.

   Two weeks after the surgery I knew something was very wrong. A new, much worse pain had developed in both feet near the incisions and there were parts of my feet I had no sense of feeling in. When I talked to my Ortho's assistant about this, he said there may have been some nerve damage during the removal due to the size and location of the tumors, but that it would eventually "fix" itself as the nerves repaired themselves. I did limp down the aisle at my friend's wedding just days before my surgery and we did go ahead with our wedding, barely a month after my surgery. It wasn't easy & I was in a lot of pain, but it was so worth it. It turned out beautiful! Fast forward to July 27, 2010. I had a few tests, including a bone scan and was diagnosed with both Chronic Regional Pain Syndrome (CRPS) and Raynaud's Phenomenon. I saw my first pain management doctor and started my first series of three nerve blocks. I had about 50% success with these and after the doctor said our only next option was a spinal cord stimulator, I thought I needed a second opinion as this was a very serious surgery. In September I saw my new PM doctor at Emory University in Atlanta. I will call him "Dr. S". He's amazing and wanted to try everything possible for me before the SCS. We weren't out of options.

   We tried 2 more nerve blocks and a radio frequency ablation with Dr. S. Again, I had about a 50% success rate. We were prescribed all of the conventional medicines as well as some medicines experimentally hoping for some good results. Some may have helped a little bit, but most either didn't have any effect on me or just made things worse. Pain medicines weren't helping either. Now it was January 2011. We decided at this point to look into the SCS trial, but eventually opted to put that on hold for more tests and a few more opinions as recommended by a couple of my doctors. I just had so many weird symptoms and odd test results that we thought perhaps my diagnosis was wrong all along. By this time however, my pain had spread from my feet up my legs and into my hips as well.

   As I may have left a ton of details out as not to bore you too much, and 16 specialists later; my SCS trial is officially scheduled for December 6, 2011. I have my pre-surgery consultation this Friday, November 18th. This leads me to the reason for this blog. I am dealing with a disease that affects a truly astonishing number of children and adults that even fewer people understand. I want awareness and a feeling of hope for all of us. There is no cure yet, but I know there is strength in numbers and if we all band together I know it will make each day easier to bare. I know the feelings of hopelessness, depression, anxiety, constant pain and the loss of friends who don't believe anything is wrong with you. I want to reach out to others and hope that perhaps through my journey, it may help someone else in some way, whether it be advice, someone to cry to or just to vent their frustrations with. I also have a huge goal. I want to be a mother more than I want anything else in this world. There is not a lot of literature on the subject combined with CRPS and a spinal cord stimulator. I want to change that. Part of my goal to motherhood is to share every bit of that journey with you from the SCS trial, to planning for a baby and God willing, giving birth. I am terrified of how pregnancy may effect my CRPS as well as vice-versa. I hope to perhaps ease some others' same fears by giving one perspective on the whole process. I enjoy feeling like I'm not alone and I imagine so do many others. From now until the trial, I hope to share more details of my story thus far, some struggles I've had and answer any questions others might have. I will also try to detail every bit of the SCS trial, including posting pictures and possibly videos. I appreciate any feedback and hope this can help even one other person facing this disease. Thank you for reading! ;o)