Thought you all were due for a medical update, since it's been a while and there have been some happenings going on. Sorry if this is a bit long, everyone (for those who are new or may not have followed along before this, I have a disease called Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome -RSD/CRPS. Because of that, I had a Spinal Cord Stimulator placed in July. More info in the links below).
I had an injection done 3 days before Christmas (a Lumbar Sympathetic Nerve Block, #20 or something like that), and it worked well; I was pain free for the next 3 days, and had only moderate pain for a few days after that. Once the block and the meds wore off completely though, I was bed bound because the pain was so intense.
I saw my primary Pain doctor, Dr. C (here in DE), and she told me that besides the blocks, she can't do much more for me. Dr. C's thoughts are this: first, it sounds like the stim will only really work on me for 3 out of 4 seasons, because I react so bad to cold and flare. Second, we will need to figure something out that works during the winter/cold months, since I can't stay in bed for forever (hello, it's been more than two years and it's getting a little old...). Her thoughts were this: the blocks seem to work, just not for long enough. If we can bathe the nerve in the same meds used in the blocks, only longer, than that may give it enough time to rest and relax and heal. We upped my pain meds (gotta love being on long term heavy duty pain meds...not), and she referred me back to the doctor/surgeon in PA that did my Stim surgery, Dr. J.
Part of the problem has been that I can't use the stim. Because I react so violently to cold and flare out of control because of it, the stim doesn't touch the pain levels in a flare. It does nothing, and actually hurts at times. If we can bring the pain levels down- like we did right after the block- then the stim works great. It also works great during the warmer seasons; I was able to do the wedding and Disney World, no problem.
So I saw the surgeon, Dr. J. He agreed that I may be a 3 season type of patient when it comes to the stim; we need to play with it to make sure, but that's part of the wickedness of this disease. His suggestion, based off the comments of Dr. C, were to do a spinal/epidural infusion of the same meds; basically, I would be admitted for a 4-5 day inpatient procedure, where they would do the epidural infusion the entire time. During that time, I would more than likely have some PT going, since my muscles have atrophied and I really need it.
We also talked about doing a PCA/Intrathecal pump (which places narcotics and the block meds directly into my spinal column, instead of me taking them orally; it allows me to take 1/15- 1/10 of what I take now, and allows for more successful and productive living. My mom actually is one of 2 nurses in DE that is certified to refill them, so I know a bit more about them than usual patients), as well as doing a sympthectomy (severing the nerve off completely). I feel like I am not at the point of either of those yet, as I just had the stim put in and really want to give that a go before we do something else. I would do the PCA pump before the sympethectomy, and it would be many, many years and a last ditch type thing before I even considered the sympethectomy.
He wanted to try some more conservative changes before doing the inpatient procedure. We changed some of my nerve medication first, at the first meeting two weeks ago. Then, I saw the PA and the Stim Rep on Monday; Dr. J ordered a reprogram of the stim, which we did. The PA and the Rep both informed me that they have several patients who have both a stim and a PCA pump, and use both equally, and actually live more active and productive lives than many who have one or the other and still live with pain. This actually helped me some, knowing I would be able to use both, and knowing that having both would not interfere with pregnancy or childbirth (a huge concern for DH and I during all of this; placing things in the epidural space means less wiggle room for an epidural during childbirth; luckily, most pain doctors are anestheiologists, and know how to expertly place an epidural, so I am actually more well off than before!).
They ordered me back in another two weeks (3rd visit in less than 6 weeks), to track any progress and make plans for the infusion. Both Dr. J and the PA agreed that the infusion is most likely will I will end up, but we want to try anything else first, if we can avoid it. Of course, 4-5 days inpatient in a hospital an hour away does not excite me in the least (Dr. J practices out of Lankenau). But, you gotta do what you gotta do.
I keep praying that my appointment with Dr. Schwartzman at Drexel gets moved up (He is the world's leading expert on this disease; you may have heard of him or at least his work- he is the one who puts people into coma in Germany to help reset their CNS). I scheduled my appointment with him middle of 2009. It's not until January 2012. Yes, you read right. 2.5 years for an appointment. The lady actually mentioned me getting moved up if someone died.
Anyway, sorry this was so long- just wanted to give an update. I will definitely let you know what happens next (I see Dr. J a week from tomorrow). Please, if you could keep us in your prayers, I would love that. On top of all this, Brian has Mono. Ugh. He does everything for me, and now is sick himself.
A couple of things that might help everyone understand what I talked about in this long a$$ post. All are clicky links:
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What RSD is-
Lumbar Sympathetic Nerve Block-
Spinal Cord Stimulator-
Intrathecal/PCA Pumps-
Dr. Schwartzman and Ketamine Infusions-
Dr. Schwartzman and Ketamine Coma-
McGill Pain Scale (note where the pain of RSD is relation to amputation without anesthesia)
Also, just to give everyone an idea of what happens to someone when they have RSD, here are some pictures a close RSD friend of mine took (I haven't taken any of my left foot and ankle, where my injury is, but it does the same thing):
