Hi Mr J, and welcome to a wonderful place of support, caring, and help! In the short time I have been here I have found the people to be an unbelieveable resource... from support when I'm having bad days, to helping with knowledge from their own experiences... it's even put me in touch with others who have my rare condition: CRPS.
Awhile back I askd alot of the same questions. You see a year ago I was told really the only way to treat my condition was with narcotics and/or an SCS unit. So after finally getting my insurance on board, I started the trial.
Yes, last Friday I had my temporary BSPP unit surgery. The surgery was no cake walk, I won't lie. I wasn't thrilled with having to be lightly sedated because I needed to be awake. Have they given you the DVD yet to see what it can do? They're not far off.
So far my trial has been annoying, but that's strictly because they do not suture the leads into place. In my case because it's my entire right arm affected they had to insert the leads as high up as C2 in my neck. My rep described it as dangling two strings down a PVC pipe; to much wiggle room. What happens is it causes my levels to be fine one moment, and the next I feel like I'm getting an almost painful jolt. I either use the remote to quickly lower the levels, or, as I'm learning, move my body in simple ways to realign things; that can be anything from twisting my neck, to shifting my posture. However in a week I will have my temporary unit removed (the wires, basically) and I am not looking forward to it. Why? Because as annoying as the wire shifts have been, and the first day post-surgical pain (my neck felt like it had a horrible crick in it, and my mid-back is tender from where the wires come out) I do not relish returning to my normal pain. Normally my pain levels are at a 9. Now I realize someone's 9 could be another's 5, or even another's 20. So please keep that in mind. Still, returning to a 9 from my current 4 is not something I relish, but I know it'll be temporary until I get my permanent unit. And yes, the no showers/baths is annoying, the little unit in it's pouch at my waist, the leads sticking from beneath my bandage leading to it... but again, it's temporary. It is a mild annoyance in the long term to something far better given my condition was getting worse over the last three years and has robbed me of most of my life. You see, I'm a single Mom of an 8 year old, and in my mid/late 30's. I've done alot of things, received training in various careers, and have a closet full of hobbies -- none of which I can enjoy anymore without massive pain that ocassionaly has me passed out.
Yes, I fully intend to get my permanent unit. The rep I have talked to me prior to my surgery, was in the room during, and programmed me afterwards. She's called me every day, and when I needed to receive some extra programming to get the maxim effect from my unit for my pain, they met with me the very next day, and in a matter of moments we had it fixed. Even my doctor has called me nearly every day to make sure I'm okay.
Personally my feeling is if it's even at least a 50% reduction in pain it's a big improvement. And with time I should be able to wean myself off my percoset, or only need it when I need it. Right now I take 15mg of Percoset three to four times a day, but I certainly can't do without it. I've been on Vicoden, as well as Loritab, and now Percoset.
You'll hear some negative things, and everyone's case is different. For me, having a neighbor who has a Medtronics unit was a big help. To be able to sit and talk with her, to email or call her any time I had another question... and believe me, I had a boatload!
At the very least give the trial a shot... you can always say no, and you might find that it'll help give you some reliefe, and that's better then what you have now, isn't it?
If you have any questions, please, don't hesitate to drop me a line. Call the 800 number to the BSPP folks, and talk to them as well.
My thanks to all the folks for their info and help during my "do I try it or not" phase... and a big thanks to Frances for all the positive encouragement!! As annoying as my trial is I know the permanent will be 10 times better, and for the first time in over 3 years my pain isn't so all encompassing that I can look forward to a brighter future, my depression lessened along with my pain.
All my best to you.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled and on Percoset for pain.
Hoping 2011 will see my spinal cord stimulator unit finally implanted.