Wednesday, May 30, 2012

It's not a time to give up(Even though your body screams it at you)

So I'm indecisive....

Ok, not really. I'm not getting the second spinal cord stimulator after all, but not because of simple inability to make up my mind. I DEFINITELY want anything to get rid of any amount of pain that I can. However it's becoming increasingly more apparent that in my case another invasive treatment, especially as invasive as another surgery, would do more harm than good. You see, my RSD is one hell of a bitch. Excuse the language but nothing less would describe this condition better at it's present state. I go in for a SCS adjustment practically every month lately and have reached over 20 milliamps on one of the settings, which anyone with a SCS knows is ridiculous. However my RSD seems to see me doing this, gives me the middle finger, and gets more aggressive in response just to make sure it's still able to break through the stimulation the majority of the time. Granted life is much better than it would be without the device, the few times that I forget to charge the darn thing on time and end up having to sit with it off while I charge is absolute misery and torture and I will never forget to charge it again(for a few weeks :/ I'm human... and medicated). Yes, this bit of coverage is certainly better than nothing and that is why I wanted to go ahead with the second device for my arms as they are doing every thing they can to catch up with my legs in the great RSD pain race. x_x

I have a lot of pain in my hip at the location of the battery incision site which is possibly RSD spreading, and I've still had really severe back pain. I've mentioned before that I had to stop physical therapy when it was making no progress after over 4 months, I was actually getting worse and have still continued to, and the reason isn't entirely known yet but it was initially believed to be muscle atrophy in my back from the surgery recoveries. It could also be contributed by the RSD but that's not for sure. All I know is that I can't get comfortable at all, laying down or reclining with pillows used to offer slight relief but it drives me pretty close to literal insanity having no escape from pain every where in my body. I feel like I just can't deal with this any longer, I have to have it gone, I don't know how to handle it.

There's something new I'm determined I have to get done though. It's pretty non-invasive, it sounds like the best option that has helped almost every RSD patient that's tried it(not all, don't jump down my throat anybody, I did my research and am aware it's not a sure thing :P) and it's probably my last option at this point... Low dose I.V. Ketamine infusions. Most people that have heard of these have probably heard of them through Dr. Schwartzman, though that's a 2 year wait and as mentioned I don't think I can handle this pain much longer especially given that there's an option still left. There's a fantastic doctor in California that I am hoping to be able to see, Joshua Prager, he's got amazing credentials, has done pretty fantastic work with this treatment and seems to actually CARE about patients that need help, based on his work and what he's said in video testimonials describing the treatment specifically in regards to RSD online. Unfortunately money becomes an issue, what else is new, but my insurance already said they will cover the majority of the procedure and if we can get a doctor who will actually accept insurance(that seems to be the biggest obstacle) we will be able to manage it. I think this is my last chance, I'm determined one way or another that I WILL get this treatment, go back to school, get a job, have a life again. If it doesn't work I have no idea where I will be or what I will do, but I know I have to try for it. Hopefully more work will be done on it over time and doctors will figure out what exactly it is about the treatment is causing the relief in pain to help more patients obtain relief, possibly all patients some day.