Posted 8/9/2013 2:00 PM (GMT -6)
Thanks for the feedback, RM. You have been a HUGE help. My battery pack did cause a bit of a problem at first because it would clamp down on a nerve any time there would be pressure on it (mine is on right hindquarters, above pelvic bone). Since I am underweight, there is not much fat to cushion it & keep it from irritating the nerve, but I was so angry with it that I broke the rules & worked with an osteopath to gently move it to a better place by manually manipulating it through the skin. I would not suggest that to anyone since there is a possibility of accidentally flipping it & making it useless, but it helped me a lot to do that.
I'm only the trial patient in the sense that this is a new device. This is the same surgeon who put in my original Precision Plus. All we're doing is putting the same wires that have always existed in for my low back (he's done that hundreds of times) and pulling out my prior battery to swap it out for the fancy new one. My HMO won't pay for a neurosurgeon to do it, so even if I thought that was a better option, it's not possible for me with my insurance. But I have quite a bit of faith in my pain specialist. He does about 3 of these implants nearly every week so it's not like it's a huge deal. The only thing is that he switched a couple years ago from BS to Medtronics due to being burned too many times with devices not being shipped in a timely manner & having to keep rescheduling surgeries. He agrees with me that the BS device is hands-down the best possible choice medically for me (it is a much, much smaller battery than the competitors') but just got too irritated with the shipping problems. The advantage of having my pain specialist do it is that I get excellent follow-up care. When I had my craniotomy & laminectomy with a neurosurgeon, I got one phone call for follow-up care & that was it. Didn't even get to see him in his office after the surgery. He's an excellent surgeon -- one of the best in the country. But it was awful when I was running a high fever, had breathing problems & an arrhythmia 1 day out of the hospital that he wouldn't return either my pages or my PCP's pages. He later said it was because he was SURE it couldn't be related to the surgery because the surgery was "perfect". He wasn't wrong, but it WAS due to the pain medicine he had prescribed me. I was having a severe allergic reaction to it & he could have cared less. My PCP was flying blind trying to figure out what to do to save my life -- loading me up on steroids & such. So I guess I lost a little respect for neurosurgeons after that experience. I'm sure they're not all like that, but it was just really disappointing. He's not a terrible surgeon -- he's the chief of neurosurgery for an award-winning neuro unit at a Level 5 Trauma Center. But he basically just shows up to the OR & then wants nothing to do with you or your medical team. So I'm sticking with my PM. :)
My PM is gonna see if he can get them to have some normal paper tape on hand for this trial. He had requested paper tape for the trial & technically that's what it was, but it had some adhesive bond additive that made it really miserable for me. He hated it too. Had issues with the steri-strips' adhesive as well. It was like industrial strength!!!! Usually he does all the trials/implants in his own surgical suite, but because my HMO is really stingy, he couldn't afford to do that for me. So we did it as a local hospital.
I'm gonna maybe see if dr can recommend something to lower swelling. I know from past my SED rate tends to be high for quite a while after surgery -- over 12 months, really abnormal for inflammation to stay so high for so long. I took Advil, but it didn't help much. Maybe there's something better to try. And he's definitely going to give me a few muscle relaxers that I can fill at pharmacy to deal with horrible spasms. Thanks so much for your feedback!!!!!
SCS is surgery. It should be one of your very last options. If your pain is able to be managed by PT, pain meds, brace, lifestyle changes, alternative therapy, etc. you should continue to manage it in that way. I tolerate exactly 1 pain medication. It is insanely expensive, my insurance doesn't cover it, and it's not working as much as it used to (films show worsening of my condition). I only have 2 other options available to me: neurosurgery including a 4-level fusion, shaving down a big, ugly bone spur & there was something else they were going to do but I don't remember what. We're not even sure my insurance would cover it because so far they have even been denying a referral for an evaluation by a neurosurgeon so I really doubt they'd pay for that surgery even if I was willing to take the enormous risk that it would very likely create as many problems as it would solve OR a pain pump. I'm not keen on the pain pump because I have so many issues with medicine. Doc says pain pump should reduce side effects/adverse reactions, but there's no guarantee. And, that means a second device in my body. The SCS is not a perfect solution. The implant itself is painful surgery. It does carry recovery time for your body to heal from being cut open & have your connective tissue torn apart as they tunnel through it. It's not a cake walk, but I will say I'm much happier with the results of my SCS than the results of my laminectomy. MUCH. It was short term misery for years of benefit.
So I guess all that's to say, don't automatically rule it out. If you've tried everything else & you're down to a choice between surgery for an SCS implant or major surgery on your back, you'd do well to keep the SCS on the table. Good luck with everything!