Currently, I am not a case anyone will want to use to base their decision. Do not let my experience color your decision-making process. I am a rare bird, so please remember that!
A little background - my trial procedure was a nightmare (horrible pain, tons of scar tissue, or so they thought), but once the lead was in place, I had a wonderful 5 days of pain relief.
So I go yesterday for the permanent placement, and this is with a neurosurgeon (who had referred me/required me to go to the anesthesiologist who did the trial/pain management). It did not go well. The good news is that I had good pain control, so I did not suffer. But being awake for the entire procedure, I knew something was going wrong. Doctor had promised to go immediately to a paddle lead if he encountered any problems, and he did not.
Some details: This renowned neurosurgeon (in SCS training, research, etc. and has done over 2000 procedures) said I have an anomaly in my spine. He can't tell what it is because it doesn't show on MRI, CT or Myelogram, but something is in there causing the leads to not progress, not behave, etc. He had to use a rare procedure on me to even get the leads in (I heard a nurse ask him what he was doing and he explained it - he had to use something like a straw to push all the way up to my midback and then thread the leads through the straw? (Straw was the word they used but I'm sure it is a medical device). I don't know how truly rare it is, but he rarely has to use it.
The first lead he put in looked perfect and when they turned it on, my right leg was buzzing. The entire right leg and foot. That's nice, but my pain is in my left leg. So he put in another lead, with much more difficulty than the first. It took forever and ever and that lead only buzzes the front of my left leg, just like the trial did. (until my leads migrated down an inch on their own). I burn on the back of my left leg, so that is where I need the buzzing.
Everyone involved says they cannot move my leads down any farther safely, so they don't know what to do at this point. Not wanting to give up, but trying to figure out how to get that perfect placement I ended up with during my trial, because apparently there is a very narrow little window of "good space" for the lead in my messed up back. They also said this anomaly is far above my surgery area, so it cannot be related to my surgeries. They don't know if it is scar tissue or what. And I am allergic to contrast dye, so I won't be having any testing using that and from what I understand, that helps light up the scar tissue that might be present and otherwise not seen.
After the procedure, Doc, nurse and programmer came to my room to discuss my extremely difficult case. You could see the exasperation in all their faces. I was in shock that I didn't end up with paddle leads and finally found out why. Doc says that not only is there an anomaly of some sort in my spine, but my nerves are not "normal". Meaning, when he stimulates a certain disc level, that nerve doesn't respond. A different one does. Also, he is considering that maybe I have too severe of nerve damage to be able to get a good "stim", although that doesn't explain my good 5 day trial. It is possible I have a genetic mess up amongst the nerves. I wish I had better terminology for you! lol
So, he had no idea where to put the paddle lead in if he had gone that route. Where he always puts it on everyone else did not work for me, so I would have had a useless laminectomy (bone removal). I am literally THAT messed up/different than normal. So what I think they are doing now is using this as a second trial for HIM to decide what the heck is going on with my nerves, what level to go back in for the paddle leads. Right now, he has my leads down as low as he ever goes, and he rarely goes this low on anyone. AND I still don't feel it in the back of my left leg. Well, I take that back. If I lay flat down on my back with my legs almost higher than my head, I can get some buzzing in the back of my left leg. THAT will not help me get my life back!! lol
It is discouraging, but the problem is ME. I know I'm in good hands, I just wish I weren't facing more surgeries or problems. My back is KILLING me, as you can imagine, with all the manhandling that had to be done to get those leads in at all. It was quite a difficult procedure for the doc, but I did have a tiny bit of Versed and LOTS of local anesthetic, so I didn't feel pain at the time. (The trial I felt so much intolerable pain that my programmer had a vasovagal reaction and fainted in the middle of it. Yeah, not good.)
I go tomorrow morning (as far as I know) to have another appointment and for what they are calling "discussing plan B". I'm assuming that means another surgery for paddles leads, but I don't know.
Also, I do have the pulse generator implanted in my upper right buttock, and the interesting thing is - I don't feel it. Considering I was cut open, a pocket formed and stapled shut, you would think it would hurt, sting, something. NOPE - I have so much lateral numbness from my hip to my toes that I think this is literally in my numb area. One good thing, I guess!!
My spine is not numb and the pain is intense today. And I haven't had a laminectomy for the paddle leads yet, but my back was quite manhandled. After the straw things used to thread the leads, they then put me out, did the pocket thing in my upper buttock and used the tunneling device from buttock to mid-back to tunnel the wires to connect the device. All that causes pain and I feel it today.
And to top it all off, I was supposed to spend 23 hours in the surgery center, but I was doing so "great" afterwards that they discharged me at 11PM! Everyone saying they couldn't believe how well I was doing "considering" what they all just saw happen to my back. That, to me, proves my high pain tolerance.
So, please do not let my case scare anyone. I had multiple tests, a thoracic MRI, everything someone would need prior. And whatever is wrong with me is a shock and very rare from what the doc says. If he is able to go in and do paddle leads, I already have the tunneling of wires, already have the pulse generator in my hip. It won't big the entire shabang.
The other issue with paddle leads and with my body and nerves being "jacked up" for lack of a better phrase, I would be asleep when he did it and he would not be able to ask me "where do you feel buzzing". There was just a story on here a few days ago of a girl whose doctor put the paddle leads in at the wrong level. I don't know if her body is weird like mine or her doc messed up, but I am now actually glad he waited. I certainly wouldn't want 2 laminectomies while he tried to figure out what level to sew them in at.
What I have learned over the last few weeks, between painful trial procedure, acute pancreatitis twice, and gallbladder surgery and a 10 day hospitalization through Christmas - my middle name is Trainwreck. LMBO