Diagnosis/Treatments...oh the treatments.

Ok, so I am just going to admit that I do not know proper blogging etiquette and quite honestly, if there is such a thing, I am probably not going to follow it. If this offends you, I am sorry, but I truly hope no one would get bothered by such things. To warn you, this post is a bit long. I thought about breaking it up, but I felt it better to get it all out in one long post, rather than several subsequent posts. It just wouldn't flow right. Oh and one more thing...I am still heavily medicated from my surgery, so my first post, today's post and any in the near future may have some grammatical errors. Catch me on a good day and it should be perfect. After all, that's kind of my career. 

So, my pain started about six years back. I was practically pregnant twice in a row, but during my second pregnancy, on Christmas Eve 2006 with my sister and 7 month old son in the car, we were hit by a drunk driver on our way home from our church's service. The driver who hit us was going about 80 and we were going 35 (that was the speed limit). Our car spun more times than I can count, jumped a curb and right as we were about to start flipping, we slammed into a pole on the driver's side. Long story short, chaos ensued, we were all rushed to the hospital and my son was kept over night. Since that time, I had horrible back/neck pain and my foot was always bothering me. I was pregnant, so back pain was normal, but once I got her out of me, the back pain didn't stop. That's when I decided to start seeing a doctor to figure out what was going wrong. 

Over the next few years, I saw many doctors who either thought I was crazy, a junkie looking for a quick fix or just had a pulled muscle. No one took me seriously and I began losing faith in the medical community. I quit seeing my neurologist for my brain cyst, quit seeing my urologist for my kidney stones, put off seeing a doctor for the cysts I developed under my tongue and refused to go to any check-ups. If no one was going to listen to me and they were either going to write me off or write me a prescription, I was done paying them one more cent of my money. I wanted help. I wanted answers. Most importantly, I wanted relief. 

And then, one glorious day, I passed out while getting in my car. I was sent to the hospital and admitted for a heart condition known as SVT (Supraventricular tachycardia- say that five times fast).  During my stay at the hospital, I fell in the bathroom, either from the heart condition or because my blood pressure dropped too low, too fast. I was already having pain, which they dismissed but because I fell, they decided to do an MRI to make sure nothing major had occurred. Well, the results came back and showed I had a herniated disc. HALLELUJAH!! Seriously, go with me, this really is a good thing. The cardiologist recommended I see a specialist for pain management. I had serious reservations as I envisioned walking into a room full of people waiting for their next fix. But, I bit the bullet and made an appointment. 

I walked into the office: nice staff, big waiting room, normal looking people. This place was not nearly as scary as I thought it would be. I told the doctor why I was referred to them and he seemed kind and genuinely concerned. Then, he asked the questions: what kind of pain are you having, where is your pain and how long have you had it? I spent the next 30 minutes crying, trying to talk through my tears explaining how many doctors I had seen, how I was written off, what my pain felt like, where it was located, etc. Once I was done, I looked up at him expecting to see the look I had seen so many other times: the "wow, this girl is crazy and needs to be institutionalized" look. But instead, to my surprise, I saw a look of compassion and understanding. He started talking, explaining what I was experiencing is a real thing, with real symptoms with a real name. He gave me information on both the Fibromyalgia (which I self diagnosed thanks to all those commercials on TV years back) and RSD/CRPS. Fibromyalgia I knew. This one with all the letters, I didn't, but I knew one friend who had told me of her diagnosis, so I thought I'd start there. My doctor started me on a huge medication routine and told me of the many different treatment options. That night, I went home and sent a message to my friend who also had both of these diseases. She cried, I cried and she told me all she could about what I was facing. But the thing about RSD is it's fickle. Some people experience the symptoms in stages, some have it come on all at once, some never get all symptoms...you get the picture. Everyone is different. I began educating myself on this disease as I wanted to know exactly what I was facing and I'll tell you what, I wish I hadn't. It was about the scariest thing I ever read about. Shortly thereafter, we started treatments.

1. Medications - I was given eight medications, some which were three times a day, some four. I'm not the best medicine taker when it comes to remembering to take a dose, but this disease doesn't let you forget. I got my routine down pretty quick.

2. Injections - I couldn't tell you the names of all the different injections we did, but some of them worked to an extent (like the nerve blocks) and others did nothing at all except make the area sore where they put the gigantic, and I truly mean gigantic, needle. We did injections about two times a month, which required sedation, a driver and some downtime after they were complete. 

3. Ketamine - well, I never got to try this one. I had never heard of this, but my doctor said it was actually a drug being used on the streets. He said it was in the class of hallucinogenics. Uh, WHAT? But as he explained it to me, it didn't sound so scary and I began to be hopeful about this course of treatment. We had the time, date, everything all set up and then I got a call from the place where ketamine would be administered telling me each treatment (and he prescribed five) would cost $5000.00. I'm pretty sure I fell over when I heard that number. $25,000 for this course of treatment. Oh and insurance refused to cover it. For once split second, I wondered how much I could get it for on the streets. Ok, joking. Seriously didn't consider that. In all honesty, I still hope that one day, somehow, I will be able to afford it and pursue this treatment option. I've heard it does wonders for people and I haven't ruled out the possibility that it's in God's plan for me to be able to have this treatment. Clearly, it's just not in His plan now. 

4. SCS (Spinal cord stimulator) Trial - so here's the one we finally followed through with. It starts with a trial. Leads are placed on the epidural part of your spine, on either side of it. For the trial, the leads were about as long and thin as spaghetti. They made two holes in the lower part of my back for the leads to be placed and then they ran about half way up my back (on the inside, not the outside of my skin). The battery/brain of the machine was just taped to my back since after all, it was just a trial. The only scary part was, because the leads had to have a place to come out of my back, it left two open holes where bacteria was free to enter, meaning an immediate spinal infection was a serious danger to this procedure. I wore the trial SCS for 8 days. It's purpose is to send a sensation into the affected parts to replace the pain sensation we normally feel. It's not 100% effective, but the goal during the trial is to achieve 50% improvement or better in your pain level. After wearing the trial, we decided to go ahead with the permanent implant. It's a riskier procedure and cannot be done by the pain management doctor like the trial could, so I was referred to a neurosurgeon. Again, for the visual learners, here is what the trial looked like. Just think, EIGHT days of that on your back. Not as fun as one may think.


    Controller                                             Implant - sealed to avoid infection

5. Permanent SCS implant - After about 3 1/2 months of waiting, I got a call from the neurosurgeon to have a consultation for the permanent implant! With my doctor's help, I went with a model made by Medtronic. Since the leads are placed on your spine, the sensation can change when you sit, stand or lay down as the leads are either closer or further away from your spine, depending on your position. Medtronic has a great model that has a sensor which determines what position you are in and adjusts the sensation accordingly. You can get up to two stimulators (we call them stims), implanted as the area of coverage is dependent on the placement of the leads. My stim covers from about my lower back down to my feet. I had the permanent implant about 8 weeks ago. This time, they didn't use the "spaghetti leads" but rather paddle leads. Paddle leads have a better chance of staying put rather than moving around like the "spaghetti leads". I'm sorry, I don't know all the technical terms, so just go with me. This surgery was much harder on my body. They had to chip away some bone where the leads were placed and it's hard enough having one incision, much less two, which is what is required with the permanent implant. I have one incision about midway on my spine for the leads and the other incision was on my right, lower back/upper buttocks area for the battery. Because of my tolerance for pain medication and the complexity of the surgery, I was in the hospital for about three days after the implant. That's when I got my fancy ride back to Houston in the Navigator/hospital bed on wheels. Of course I'm giving you visuals on all of these things. How can you picture it without them? Anyways, I came back to Houston to recover as you aren't allowed to bend, reach, lift anything heavier than a pair of shoes or twist. Basically, everything you have to do to take care of kids. About four weeks into my recovery, I noticed my battery, which was supposed to be anchored down was practically flipping inside its' little pocket of muscle it was in. It was painful and I had difficulty charging the battery because it wouldn't stay in place. I called the doctor who said he'd need to see me to determine the course of action. Long story short, I ended up having go back in and have the battery stitched down. Or so I thought. When I actually got into the pre-op room, they decided moving the battery to a new location would be the best option, so I got to do half of the first surgery all over again! WOO HOO! After another three-night hospital stay, I was back at my parents house and am stuck in bed, hence all the time for typing all of this out for everyone to read  (I just had the second surgery on Nov 14th and was released from the hospital on the 17th). While I do not experience full relief from it, the SCS has by far been the best move yet. It only covers my legs, but since I have RSD in my legs, neck, shoulders and the newest place, ears, this is just a dent in the road to symptom management. I am hopeful and excited for the future. Although it's no cure and I still have parts of me which are burning and stinging as we speak, there is one less part of me that is experiencing the full pain of which this disease has to offer. 



Spaghetti Leads              Paddle Leads                             Battery/Brains

                          


                    My bed on wheels (Navigator hospital bed referenced above)

The treatments are far from over. This disease is known to spread until it takes over your whole body. Fortunately for me, I'm not there yet, but I know several people who are. This disease is known as "the suicide disease" because the pain is so intolerable, people choose death over living with this pain and loneliness. It is sad to me there isn't more awareness about this disease and the effects it has on people because maybe, just maybe, one of these deaths can be avoided. There are several doctors out there who know nothing about this disease, which is unbelievable! The RSD community is a tight-knit group and everyone is so supportive of each other because we understand what others are going through. I wish I could say this monster was the only thing I have going on in my life right now, but it's not. Because I have already made this so long and half of the people who started reading quit due to its' length, I'll spare you all on the details of my other struggles for another post. I promise not all posts will be consumed with RSD details, but as you can see, it's a major part of my life. It's a lonely, depressing part of my life, but I choose every day not to let it take over my happiness. I think, for some reason, I was chosen to have this disease and if I can use this blog to make a difference in someone's life, then maybe that's why. We all have our struggles and I always say it's not a contest who has it worse. I think the better way to think is how we can help someone else through their hard times. I challenge you to think of something you can do to help someone, no matter what you are going through. I promise, it makes all the difference in the world. I look forward to continuing to share my journey and life with you all. Thanks again for reading.

Until next time :)