Removal/The pain is back

One thing I learned through the trial: My posture sucks horribly. I need to work on that. The slightest of movements would change either where I felt the stimulation, or the strength of the stimulation. When I slouch (as I've been in the habit of doing my entire life), it increases the strength of the stimulation.

UGH! My doctor wasn't very gentle about the way he removed the sutures to remove the stimulator. He just took a needle and plucked at the sutures until they frayed and broke and then kind of just pulled them out. It wasn't the most pleasant of experiences.

He showed me the lead that was in my spine. I thought it was pretty cool. So my back hurts again, but only because of how the doctor pulled the sutures out. It didn't hurt at all when he actually pulled the lead out. After he removed the stimulator, we discussed having the permanent one implanted. My husband and I have decided that I'm definitely going to do it.

After that, my doctor left and the company rep came in. He showed me the battery and the remote that I will have, and explained the procedure to me. I'll be going in for the implant in about 4 weeks. It will be an outpatient procedure, so I will be able to have it in the same hospital as the trial.

They are going to make a small incision in my lower back and place the leads. They then fish wires down to another incision in my upper buttock (they will have to clear out some tissue there for this), where they will place the battery. They're going to use the x-rays from the trial placement to help them place the permanent stimulator, so it should be pretty easy to get it in the right spot.

I'm going to go with the rechargeable battery. That means they will have to open the incision in the buttock once every 6-10 years (according to the rep, with the settings I used it would most likely last 8 years) to replace the battery. He said unless there is a problem with the leads, they wll not reopen the incision in my lower back.

I left the office with a slight buzzing sensation in my leg still. It was about 40 degrees fahrenheit out, and the cold was definitely affecting my pain levels again. Within a few hours of being home my CRPS pain was back with a vengence. I can't wait until I have the permanent one implanted.

And so the trial comes to an end...

I'm having the stimulator removed today at 10:50. I have decided to go with ther permanent one. I've gotten some amazing relief over the last week, so I think it's worth it.

I'm so excited to have it removed, though. My back has gone from really painful to extremely itchy. I want to scratch it so bad, and in a few hours I may be able to do just that... and take a shower, which is really what I'm looking forward to.

Over the last week I have narrowed it down to 2-3 programs that I like. The company rep said I might not be able to fully narrow it down until after I've had the permanent for a while. I'm so excited at the thought of seeing permanent relief :-D

Day 4

Today is the fourth full day that I have had the stimulator. The RSD pain is still decreased :-D

My back pain is still pretty bad. I think I may have overdone it today. I was feeling somewhat better this morning, so my husband and I went to my office to pick up some work, an then went to visit his sister for a little bit. We were gone for a total of about 3 hours (although not continuous time). Sitting in the car for the hour-hour and a half was pretty bad, and then I had to sit on the edge of a chair for an hour, as well as stand for about 30 minutes.

The good part to all of this is that normally my RSD would have flared considerably by this point. Those pain levels are still quite low.

I hav been playing around with the settings on the stimulator. I really think this could help me.

The operation

The pain in my back has subsided enough that I think I can post about the operation.

I got there at 1:00 PM on Thursday, October 16. I got there and they asked me to fill out a bunhc of paperwork about my health history, etc. I found that a bit wierd, since they had called me about all that stuff on Monday. I filled it out and handed it to the nurse who was to bring me back to my pre-op room.

We get into pre-op and she looks at my wirst and asks what I'm allergic to. I told her that I had seasonal and environmental allergies, but beyond that none. She asked a bunch of questions about allergies and then said "well they should have given you a blue wrist band instead of a red one." That kinda wierded me out too.

They got me all set up and my husband came in and stay with me while the doctors came in and explained the procedure. Come to find out they had my paperwork mixed up with someone else's so they had to have me re-sign a bunch of papers and fill them in again.

My husband left and they started wheeling me into the operating room. I have to admit I was terrified. I wasn't looking forward to the pain I knew I was going to have to endure. I get into the operating room and move over onto the operating table, face down. That's not the most comfortable position when you have an oxygen tube hanging out of your nose.

I remember the anesthesiologist putting some opaque, white fluid into my IV, and thinking "OUCH! couldn't you have pushed that in a bit slower?" and that is it. The next thing I remember the doctor was saying "That's the fastest this has ever gone" and the anesthesiologist assuring me that was a good thing. During the operation they gave me a light sedative and they woke me up and put me into a deeper sleep as needed. I was in that room for no more than 20 minutes, because 30 minutes after my husband walked out of the room they were calling him back in to sit with me.

Immediately I noticed that my RSD pain had decreased. My pain levels were about 60% less than they were when I went in to the pre-op room. The rep. from the stimulator company worked with me to find out which programs I should try over the week. I start playing with them, and recording what I like and dislike about each, on Monday.

So to the good news (keep in mind this is only after a couple of days):
I went in with CRPS pain that I rated at an 8-9/10. I came out with a pain level of 4/10.
I can touch my leg without causing myself any extra pain.
The color in my right leg has returned to normal.
The pain in my leg doesn't seem to increase with the cold.

I have pics of me pre-op and of my bandaging on my back. When I find the cable for my cell phone I'll post them here.

Post-op update

I'm home from the surgery. My back is really sore, so I'm not moving much. This post will be short as a result. The doctor said by Saturday night the soreness in my back should be gone, so I anxiously await Saturday night.

So far my RSD pain has decreased by about 50%. If this continues, I am going to have the permanant stimulator implanted.

I'll write more later.

The big day

T-minus 5 hours and 30 minutes until I have to be at the office for my operation. I had my "last meal" last night. It was delicious. My husband made chicken breasts with bacon and melted cheese on it. Mmmmm.. soo good. I was allowed to eat until midnight last night and I can drink clear fluids (water, apple juice, black tea, or black coffee) until 10:00 this morning.

I got my hair cut last night. I got 6-7" taken off. It's really short now, but I figured I might as well make my last shower for a week mean something. LOL! Sponge baths for me from here on out :-(

They want me to bring my inhaler in with me. I've been searching for it and I can't find it (like I told them, I haven't used it in months. I honestly think the last time I used it was last winter). I'll have to call in a few hours to find out what I should do. I'm pretty sure even if I found it it would be expired anyway.

ARGH! I'm so hungry (you know only because I can't eat)... more water for me.

Getting nervous...

I get the trial spinal cord stimulator inserted tomorrow. I'm starting to get really nervous. I found the spinal blocks to be incredibly painful. When I had the block in epidural form, it hurt the entire time it was in (come to find out they were pumping way too much medication into my spine at once). When I started seeing a pain doctor again, I swore I'd never get a block again. Now this?

I am extremely excited at the prospect of decreasing my long term pain levels, but the procedure itself scares the hell out of me. It's like my wedding. I couldn't wait to be my husband's wife, but the wedding itself terrified me.

The ends justifies the means...

Walking is bad.... walking is bad....

My husband and I went to a beer festival with his friends yesterday. We were walking around for about 3 hours. I haven't done that in so long. It was tons of fun, but I forgot how much it would hurt. By the time we were 3 hours into it I had to sit down. We grabbed some food, sat and ate. The members of our group trickled in and out, getting themselves more beer smaples, but I just sat. After we ate, my husband decided it would be best for us to leave (I love how careful he is about my condition). By this time my pain level was really high again. I hope it calms down by tomorrow. The pain levels are still quite elevated. Hopefully by tomorrow morning they will have decreased some.

Work & Stimulator

I work full time. Normally this wouldn't be a big deal, but add in that I sleep an average of 2 hours a night (always in 10-20 minute increments) because of the pain, and you might begin to see why full-time employment is not an easy thing to endure when you suffer from CRPS. By the time I get home from an 8-hour day at work, I'm exhausted. I usually get home and crash on the couch until it's time to go to bed. By Friday I'm completely exhausted. I generally spend weekends crashing on the couch, trying to recoop from the work week.

Well, it's Friday. I made it through yet another week.

Next week I have my trial stimulator implanted. The stimulator is supposed to kind of confuse my brain. It will bombard my sympathetic nerves with electric pulses. The doctor says I will be exchanging the pain sensation to another, which I may or may not like, and will definitely need to ge used to. Nothing can be worse than the pain.

I'll update my progress here.

What is CRPS?

CRPS is complicated, and there's not much known about it. The symptoms will vary between people, and what works to treat one person will not work to help another.

CRPS was first discovered during the Civil War. Doctors on the field were faced with bullet wounds that, although healed, still caused soldiers severe, burning pain disproportional to the injury. It was originally termed Causalgia, meaning "burning pain." In fact, some still use this term today.

CRPS has gone through a number of name changes during it's history. Some of them include:
Complex Regional Pain Syndrome (CRPS Types I and II)
Reflex Sympathetic Dystrophy (RSD)
Reflex Sympathetic Dystrophy Syndrome (RSDS)
Causalgia
Sympathetic Maintained Pain Syndrome

CRPS is characterized by a burning pain that is dispropotional to the injury that caused it. The pain can be increased with stress, motion, touch (even the slightest touch can cause severe flare ups of CRPS), breezes, cold, etc.

Common symptoms of CRPS include, but are not limited to:
Burning and/or gripping pain
Skin changes (often the affected limb will because a deep red, blue, or purple color. Also, extremely dry, darker patches of skin often times crop up on the affected limb.)
Increased hair growth on the affected limb
Nails becomming brittle and breaking more easily
Limbs feeling cold to the touch
Changes in bone growth

Secondary symptoms include, but aren't limited to:
Depression
Insomnia

So what is causing the pain? This is a subject that's up for debate. One possible explanation is as follows: There are many types of nerves in the human body. Sympathetic nerves carry signals toward the brain, whereas somatic nerves carry signals away form the brain. My doctor explained it to me by saying that at some point the body gets confused. The Somatic nerves somehow get rewired and begin to send signals to the brain. The brain doesn't know how to comprehend these signals, so i translates them into pain. The sympathetic nerves then continue the pain cycle, and it never ends.

I have also heard theories relating to electrolyte balance in the body.

No matter what it is that's creating the pain, there is no physical reason for the pain to be there. It's a matter of the sympathetic nervous going haywire in some way.

Alternative Treatments

When the blocks stopped working and the epidural was out, we decided to see if holistic practices might help. We tried a number of them. The following are the most memorable:

I went to a Reflexologist for a period of time. She was great. The work she did not only helped a bit with the pain, my asthma, and allergies, but she also inspired me to get my massage therapy license (a license I hope to be able to use someday). I would recommend this treatment for a good number of conditions, but only if you can find a well trained, and licensed if that's required in your state, Reflexologist.

I also tried a therapy known as cold laser therapy. We kind of figured it was a crock to begin with, but ANYTHING to get rid of the pain. Well, I gave the therapist the benefit of the doubt for a number of treatments before deciding this wasn't for me, either.

Being a massage therapist, I learned the importance of meditation. Sometimes meditation will bring my pain level down. Sometimes it doesn't, but it always decreases my stress, which in turn helps with the pain.

The Early Treatments

We started off trying to control my pain with various anti-depressants and anti-seizure medications. I also started getting spinal blocks once a week. Neither seemed to help much.

We gave the blocks 2 months. The first block worked for a few days. It got rid of much of the pain. The second block worked for a slightly less period of time, and so it went until finally they stopped working. After the 3rd block that didn't work, it was time to move on to more drastic measures.

My doctor recommended an epidural with a stronger concoction of the spinal blocks. It was to be inserted, and then stay in my spine for a week. A few hours after I got home it had already broken. It broke, and I was brought to the ER 4 times before it was removed. I had the epidural placed on a Friday afternoon. By that Sunday my doctor had to remove it. They had too much fluid being pumped into my spine, and it couldn't all be absorbed so it was leaking back out the epidural site.

This was the point where my doctor said to me there was nothing he could do for me anymore. I was 17 years old, and any further treatments were unethical to perform on someone under the age of 18. He gave me a bunch of prescriptions and sent me on my way.

By the time I was 18, and had left for my first semester of college, I was taking 21 pills a day just to try and control the pain. It was too much and I gave up on them.

The beginning of the pain

The doctors aren't exactly sure how I ended up with CRPS. When I was in high school, I sprained my right ankle a number of times. The last time I inverted my ankle (rolled the foot inward), heard a loud pop, fell, and almost passed out from the pain. This was in May of 2001. By February of 2002 I was undergoing an arthroscopic surgery to remove soft tissue wedged in the right ankle joint. The debate is over whether it was the initial injury or the operation that caused my CRPS. The jury is out on this and may never return.

After the operation, I got an infection at the surgery site. The surgeon was slow to put me on anti-biotics, so that probably didn't help my situation. By the time they removed the cast, the infection was so bad I was put on a heavy course of anti-biotics to get rid of it.

I was slow to walk after the operation. The surgeon said there was no reason I shouldn't be able to walk 2 weeks afterwards. 2 months later he, myself, and my physical therapist were all baffled. Finally the surgeon sent me to a pain clinic. That is where I met the doctor who finally gave me a reason for the pain. He only needed to compare my right leg to my left for a few seconds before telling me he knew what the problem was.

It was a huge relief to finally get an answer. We were so hopeful. Little did we know that a diagnosis was only a small piece of the fight I had ahead of me.

To this day, on a good day I awake in the morning with a pain level of 6-7/10. On a bad day my pain levels will be as high as a 10/10. This pain level, however, can fluctuate by the second.

Intro to Me

This is my first ever blog, so bear with me. It might take a while to get used to this whole thing, and I can't promise I'll be very regular with my postings.

So why did I start a blog? I was diagnosed with a chronic pain condition known as Complex Regional Pain Syndrome (CRPS), or Reflex Sympathetic Dystrophy (Syndrome) (RSD(S)), in 2002. By the time I was diagnosed I was already in the final stages. I have been pretty bad about tracking my treatments (I used to have a notebook filled with pain levels, treatments, and just the entire saga in general, but it's MIA), and I figure this might help me do that. I would also like to help other people who may have the condition (and may or may not know they have it).