I want to apologize that this has taken so long. It seems like I'm either to tired to get around to posting, or something comes up that has me dashing out the door. I try to reserve my computer time to in the morning and late at night, and as such I tend to put myself in a time crunch. Still, I know some of your are curious to hear how my appointment went last Thursday.
So when last we left our heroine she'd had a successful SCSU trial back in February, having had the unit pulled on February 14th. That same day her Pain Management doctor said, "I'm sorry, but there just aren't alot of surgeons even willing to do the procedure, let alone yours, due to some severe negative issues post surgical; such as paralyization." I put my trust in my doctor though, and in a few weeks I was getting a call from a Spine/Brain specialist to set up an appointment for a consult.
Last Thursday, the 24th, I met with this surgeon. At first I was upset with the office staff's lack of communication: when you spend an hour and a half drive so you can wait for a half an hour in the waiting room, and another hour in the exam room before you even /see/ the doctor it gets a little upsetting. I was mildly ruffled by the time he got into the room and explained to him it would have been nice if his assistant had bothered to give me an update on the delay and checked to make sure if I was okay. Then it was down to business.
We talked odds, his success rate versus how often he performs the SCS unit implant, and alot of my fears were allieveated. The worst reaction he's gotten was one gal ended up with diminished control over one side of her body; that's a risk I'm willing to take given after that the worst thing that happened was two ended up with infections, but they were easily managed.
However we've hit a road bump. While I had the x-ray my PM doc had given me after doing my trial stim to show lead placement, I have never had a cervical MRI done. Yes, I know, somewhat appalling. I tried to explain to him that no one was willing to listen to me. When I mentioned my chiropractor found my neck alignement was way outta whack, my PA I was seeing at the time did an x-ray of my neck and didn't find any reason to MRI, and when I mentioned it to my pain doctor and how the theory was there could be something pinched, etc, hey dismissed it with the typical "oh, so you're a doctor now, are you! Trying to tell me how to do my job!" of course, that was also the bozo who said "I can't find anything wrong with you, there for your fine. Obviously it's all in your head." He was also the one that implied I was just there as a drug addict trying to milk Workman's Comp for everything I could. Boy would I love to be able to go after him so no one else has to suffer a misdiagnosis at his hands! I wouldn't even want money, I'd just want to know that quack wasn't treating or diagnosising people anymore and I'd be happy.
So I have the referal for the cervical MRI just to make sure that everything is still a go and that I don't have any unknown issues such as bulging discs or a narrowing. He checked my neck and I showed him I have full range of motion and no pain. The minor pain I have is located in my neck near the juncture with my clavical and is a result of the spreading pain of my condition. I found this surgeon polite and kind, and very sensitive to the nature of my disease. He wanted to do a quick physical test of limits and tolerance, and before he'd even lay a hand on me he'd always look me in the eyes and ask first "if I touch you here, is it going to hurt?" or "now is this loss of strength, or does it simply hurt to much if you resist?" I was so impressed with his manner in this way. Most doctor's don't think twice about you when you say you have chronic pain, and just grab and push without a second thought.
At least I can have the MRI done locally, and I've already got a follow up appointment set. I have discovered a few things from this trip. For starters I am not really able to make the drive over and back by myself anymore. (It's an hour and a half one way!) Even with my brace I was so swollen and hurt; for a few days afterwards the pain just wouldn't ease up from all the use. Not to mention that even though I took my pain pills with me, I was in so much pain my body tried to shut down and go to sleep during the drive home. So my Mom has already said she'll go with me next time to share the driveing with me. I also discovered that while my pain is spreading to the front of my clavical region and up my neck a bit, my nerves are not reacting to gentle stimuli.
So until April the 11th, when we discuss my results from the MRI, I guess I'm left hanging out here in limbo. I am convinced to have the surgery at least, but now it's a matter of whether or not my body can have it. Until then, what's waiting a little bit longer at this point.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant