An Email to Family and Friends

To my family and friends,

As of this week I have been officially diagnosed with CRPS, Complex Regional Pain Syndrome, for full year. The pain in my right foot, which started in June 2008, has since spread to encompass the entire right side of my body. While pain, by far the most overwhelming symptom of CRPS/RSD, is usually isolated to the right half of my body, please know that this is a progressive disease of the entire central nervous system. Whether this is the first time you're hearing this, or if you've been following my progress through family members, FaceBook or my blog (in desperate need of an update), please do me a HUGE favor and watch the following two video clips. They total less than 10 minutes. This Doctor clearly defines what CRPS/RSD is and the furthest medical science has come in terms of diagnosis and understanding.

What is RSD/CRPS?
http://www.youtube.com/watch?v=tBb_XUZi2jo

Recent Advances in RSD/CRPS... an extremely validating video for me.
http://www.youtube.com/watch?v=-jLUQpaZKf8

Where am I in terms of medical treatment? For the most part at the end of the traditional, western medicine line. This week I increase the dosage of a highly controversial drug, Ketamine. Ketamine, or "Special K", was originally formulated as a horse tranquilizer. High doses of this drug essentially reboot your central nervous system. In addition to the 9 medications I currently take in an attempt to control RSD pain and other symptoms, I have tried various forms of therapy... physical, psychiatric, drug infusions, nerve blocks and a Spinal Cord Stimulator trial implant. To date none of these have helped. Wait, this is not entirely true. Without the medications I am currently taking my pain would be a 20 on a scale of 1-10 every hour of every day, absolutely. Instead my pain ranges between an obnoxious 6 and unrelenting 10+. The pain associated with RSD is the most severe type of chronic pain according to the McGill Pain Index, a medical guideline doctors use to gauge pain levels. (See "Causalgia", the Latin name for RSD.) I walk with a cane always and need a wheelchair for walks longer than 5 or 10 minutes.

I am not searching for pity, although prayers are most welcome. The most helpful items you could offer me now are compassion and understanding. Please understand that although I do not email or call, cards, letters and even packages sit in my home, postage affixed, gathering dust. Although a group email or blog might relay a sense that you are not each individually important to me, compassion of my limited strength and clarity of mind is truly needed. For me this is a daily, nay, hourly struggle. I have lost both my physical and mental independence. I am now a recipient of SSDI. Driving a car myself is becoming unsafe; Being in a car for more than an hour is unbearable. I know that several of you are not even aware that within the past couple of months I had to move closer to my mother and sister because of how much I now depend on others. Those change of address post cards sit, ready to be mailed, but are held back by my own pride... having not mailed them in a timely fashion to start with. James, who just celebrated his 17th birthday, has become my primary caretaker without complaint. He also needs your prayers, and perhaps an occasional escape from his increasingly demanding mother.

Please feel free to share any of this information with anyone you see fit. With more awareness, a better understanding and new diagnostic tools being developed every day, I may not be the only person you will know with this chronic pain disease.

My love to all of you!
Carey

Does “I Don’t Know” Mean “No”?

If I were the 16 year old living in my home the phrases “I don’t know”, “I don’t care”, and “Whatever” could be translated into a nearly definitive “Yes.” Fortunately I no longer need to endure natural hormone fluctuations causing my mind to automatically gravitate toward the negative. Instead my body’s chemistry is influenced by the myriad of drugs pumped into it 3 times a day. My body now also grapples with the sensation and idea of foreign electrical impulses disrupting various areas, often without warning. The question plaguing me is whether or not these electrical charges actually help the growing pain in my right leg caused by RSD/CRPS. I simply do not know.

Monday morning I woke to find myself very anxious and nervous, not about the pending procedure but about the various decisions I would have to make from this week forward. What if it did work? What if it didn’t work? What if I was unsure if it worked? Did I want to pursue any other options before taking a forever plunge into the world of implantations? These and more thoughts continually swirled and leapt and dove around in my head most likely contributing to the migraine I’d had for hours, if not causing it entirely. While waiting in the pre-op area for the Spinal Cord Stimulator trial I tried to convince myself those were all worries for another day, another week. My concentration should have been solely on the growing right leg pain, the migraine pounding the left side of my head, and getting through the epidural procedure implanting electrical leads into my spinal column. Unfortunately, I’ve always been stubborn and that moment was no time to change me.

Although the doctors needed more than one attempt, i.e. hole in my back, to correctly place the electrical lead, the mini-surgery went well. The forewarned anesthesiologist did end up giving me more medicine than he had originally anticipated. During the procedure we actually joked about it being time for a second martini. He was again surprised that with the amount of meds running through my veins the migraine never fully went away. My SCS, an ANS/St Jude model, was up and running while lying in the recovery room bed. The rep gave me 5 different stimulation programs to try out over the next several days, each one a variation of the next, sending static to drown out the screaming nerves of my right leg.

Unfortunately the now screaming, aching, sharp muscle spasms in my back could have cared less that their sacrifice was for the good of the whole body. I had to wait for their voices to settle before trying out the SCS during the car ride home. To my dismay each program now either stimulated the wrong leg or sent additional sharp, pinching sensations up my spine. So, I waited until I got settled at home before firing up the box again. Program after program, standing, sitting, lying down made no difference. Something had happened between getting off of the stretcher and into the car. My electrical lead had slipped. With phone calls to both the Dr’s office and SCS rep it was decided that I’d meet with my rep to set new programs once again stimulating the correct leg. Tuesday morning we met and learned that only the 1st out of 8 electrodes on the lead sent any sensation to my right leg… while stimulating the left at the same time. With 4 new, bizarre programs I went home, rested, and started over.

Within the past 36 hours I’ve been diligently trying to ignore my back’s temper tantrums, the weak, aching sensations in my left leg and any other random stimuli all to concentrate on whether or not my RSD leg feels better. “Better” according to my doctors is a reduction of pain by at least 50%. I can not express how tired I am of having to quantify pain levels on scales of 1 - 10 or by percentages. I know when it is bothersome yet somewhat blockable, consuming and ridiculous, making me cry, or wishing for a swift end in whatever form that might come. Now, with the addition of severe back pain and bizarre electrical sensations, I can still feel pain in my leg and foot, but cannot discern if it’s better or not. Additionally, because of the extra stimuli I have not been very mobile, mostly carefully shifting positions in bed and lasting no more than a half hour sitting in a chair. With so much bed rest, the RSD monster normally calms down.

My conclusion thus far:
There is a possibility that it is helping. The extra pain in my back should be causing a flare, but only did so the first night without SCS stimulation. My hip and thigh seem to be hurting less, but is that because I’ve spent so much time in bed? Then there’s a chance that the extra pain meds I had to take for back pain could also be reducing my RSD pain. All of this boils down to a big, fat I don’t know.

The lead will be removed at noon today. I’m seeing a new doctor at the Pain Center in Peabody to discuss options going forward. I can say that I’m not ready to jump directly into a permanent implant at this time. Perhaps a second trial makes sense. Maybe I pursue the few remaining options for treatment before revisiting this one. All I can do is pray that the correct path is illuminated for me, and that I take off my sunglasses long enough to see it.


Pseudo Side Bar:
Please understand, any type of needle, procedure, surgery or invasive test carries an additional risk for RSD/CRPS patients. Every time a nerve is disrupted there is a chance that the RSD monster will decide to make a summer home of the surrounding area. This is why doctors try to adhere to a somewhat proven protocol in treating RSD patients starting with medications and physical therapy. Both are non-invasive and have helped some if the RSD was caught early enough. If rounds of medications and PT are not successful, various types of localized injections and/or nerve blocks are performed. From that point there are numerous surgical procedures on the to-do list including SCS’s, nerve ablations, and RadioFrequency treatments, all of which seek to disrupt the signal of the malfunctioning nerve(s). New to the treatment scene is the drug Ketamine which is available in very few locations and still in it’s infancy in terms of how to administer it to RSD patients. (Scary and exciting at the same time. More on that drug in another blog.) My RSD monster has already developed a nice estate for itself in my right leg; I so want to avoid giving it a chance to buy up any additional property.